AGING IN PRISON AS A COLLATERAL CONSEQUENCE

OF MASS INCARCERATION

A dissertation submitted
To Kent State University in partial
Fulfillment of the requirements for the
Degree of Doctor of Philosophy

by

Meghan A. Novisky

August 2016

Copyright

All rights reserved

Except for previously published materials

 Dissertation written by

Meghan A. Novisky

B.A., Kent State University, 2006

M.A. Kent State University, 2008

Ph.D., Kent State University, 2016

Approved by

Dr. Clare L. Stacey ,Chair, Doctoral Dissertation Committee

Dr. Shelley Johnson-Listwan ,Members, Doctoral Dissertation Committee

Dr. Robert L. Peralta

Dr. Lauren C. Porter

Dr. Eric Jefferis

Dr. Richard T. Serpe ,Chair, Department of Sociology

Dr. James L. Blank ,Dean, College of Arts and Sciences

TABLE OF CONTENTS...............................................................................................................iii

LIST OF TABLES.vii

ACKNOWLEDGMENTS....viii

CHAPTERS

I. INTRODUCTION AND OVERVIEW...1

Mass Incarceration...2

The Collateral Consequences of Mass Incarceration...4

Aging Prisoners8

The Current Study..10

Paper 1...11

Paper 2...12

Paper 3...14

Conclusion.15

References..17

II. RESEARCH METHODOLOGY...29

Setting and Participants..29

Procedures..33

Measures and Materials Quantitative Data.40

Measures and Materials Qualitative Data...45

Data Analysis Plan.46

iii
 References..49

III. UNEMPLOYMENT, SOCIAL ISOLATION AND DEPRIVATION:

AN EXAMINATION OF SECONDARY STRESSORS AND HEALTH
AMONG ELDERLY PRISONERS...54

Introduction54

Review of Related Literature.55

Incarceration and Health....55

Aging Prisoners..56

Incarceration and Stress Proliferation Theory...58

Methodology..65

Setting and Participants..65

Procedures..66

Measures and Materials.69

Results73

Discussion..74

Conclusion.78

References..80

IV. IF YOU DONT KNOW, THEY TREAT YOU LIKE YOU DONT
KNOW: CHRONIC DISEASE MANAGEMENT AND THE ROLE
OF CULTURAL HEALTH CAPITAL FOR OLDER INMATES...94

Introduction94

Review of Related Literature.95

The Aging Prisoner Population..95

Chronic Disease Management...97

iv
 Chronic Disease Management and Health Capital99

Methodology102

Research Design...102

Setting and Participants103

Procedures104

Measures and Materials...107

Data Analysis...107

Results..108

Theme 1: Controlling Food and Diet Options.108

Theme 2: Acquisition of Medical Knowledge.111

Theme 3: Health Advocacy.115

Discussion120

Conclusion...123

References125

V. AN EXPLORATION INTO END OF LIFE PLANNING AMONG A

SAMPLE OF OLDER MALE PRISONERS..132

Introduction..132

Review of Related Literature...134

Health and Aging in Prisons134

Prisons and End of Life Decision Making for Older Adults...137

Methodology144

v
 Setting and Participants144

Procedures145

Measures and Materials...148

Results..153

Discussion156

Conclusion...159

References161

VI. SUMMARY AND POLICY IMPLICATIONS..172

Summary of the Problem.172

Key Findings176

Overall Health..176

Chronic Disease Management.177

End of Life Planning179

Limitations and Future Directions...181
Policy Implications..183
Conclusion...186
References188

APPENDICES

A. The Older Mens Health Program and Screening Inventory (Loeb 2003)201

B. The Deprivation Scale/Prison Stresses (Rocheleau 2013).202

C. The Death Distress Scale (Abdel-Khalek 2011)203

D. The Expectations Regarding Aging Survey ERA-12 (Sarkisian et al. 2005)204

vi
 LIST OF TABLES

Table 1. Demographic Information by Institution.30

Table 2. Survey Research Response Rates35

Table 3. Frequency Distribution (Demographic)...37

Table 4. Frequency Distribution (Offense and Sentencing)..38

Table 5. Descriptive Statistics39

Table 6. Sample vs. Sampling Frame Data40

Table 7. Descriptive Statistics69

Table 8. Frequency Distribution70

Table 9. Binary Logistic Regression: Log Odds of Inmates Reporting Worse Health Ratings....73

Table 10. Frequency Distribution148

Table 11. Descriptive Statistics149

Table 12. Binary Logistic Regression: Log Odds of Inmates Wanting Tube Feeding....154

Table 13. Binary Logistic Regression: Log Odds of Inmates Wanting CPR..155

vii
 ACKNOWLEDGEMENTS

I would like to acknowledge the Graduate Student Senate of Kent State University for partially
funding this research, and each of my committee members for offering feedback and
encouragement from project development to defense.

I would also like to thank the state department of corrections for generously agreeing to provide
me with research access, as well as the staff at each of the three state correctional institutions for
accommodating my requests over a twelve month period. Most importantly, I would like to
thank the 279 men incarcerated within the DOC who took the time to answer my questions and
share their stories with me. I remain inspired to continue to find answers to the hardships you
face.

Finally, this dissertation would not be possible without my parents, both of whom modeled for
me the values of hard work, perseverance, and compassion.

viii
 CHAPTER 1

INTRODUCTION

The correctional system in the United States is nearing a crisis. The U.S. has been

characterized by an era of mass incarceration since the 1970s (see Austin and Irwin 2000;

Garland 2001; Travis et al. 2014). With decades of research now in place, it is clear that in

addition to the financial costs of housing so many men and women behind bars, incarceration

produces a multitude of collateral consequences tied to social standing, relationships,

neighborhoods, well-being, and health (see Western 2002; Pager 2003; Pettit and Western 2004;

Lopoo and Western 2005; Metraux and Culhane 2006; Western 2006; Clear 2007; Pager 2007;

Schnittker and John 2007; Massoglia 2008; Binswanger et al. 2009; Harris et al. 2010; Wakefield

and Uggen 2010; Wildeman 2010; Williams et al. 2010; Massoglia et al. 2011; Murray et al.

2012; Schnittker et al. 2012; Swisher and Roettger 2012; Carson 2014; Schnittker et al. 2014;

Turney 2015; Warner 2015). The prison population is also now aging at a rapid rate, leading to a

host of additional problems (see Aday 2003). Despite the collision of these factors, we know

surprisingly little about what it means to age in prison from an empirical standpoint. Thus, the

focus of my dissertation was to explore what it means to age in prison by addressing several

components of aging overall health, chronic disease management, and end-of-life planning

with a sample of older inmates.

1
 Below, I outline the problem by explaining the extent of mass incarceration in the United

States, the assortment of collateral consequences that are tied to incarceration, and the

complexities that come with a rapidly aging prisoner population. Following this explanation of

the problem, I briefly introduce each of the three components of aging addressed in this

dissertation.

Mass Incarceration
At yearend 2014, more than 6.8 million people were under some form of correctional

supervision in the United States and approximately one third of those 6.8 million people, or

nearly 1 in every 100 U.S. adults, were serving time in either prisons or jails (Kaeble et al. 2015).

The reliance on incarceration for punishment has become so commonplace in the United States

that mass incarceration is now characteristic of our country. The trend started in the 1970s

when incarceration rates began to increase dramatically and rates continued to climb each year

for nearly 4 decades as a result of a variety of policy related changes, including mandatory

sentencing guidelines, tough on crime politics, and increases in the use of life sentences (Austin

and Irwin 2000; Garland 2001; Nellis and King 2009; Nellis 2013; Travis et al. 2014).

Growths in correctional budgets during this time period, as well as increases in the use of

private prisons, mirror priorities the U.S. has placed on incarceration over the last several

decades. For example, government budgets allocated a total of 9.7 billion dollars per capita for

state correctional institution expenditures in 1982 and 37.2 billion dollars per capita in 2010,

representing a nearly 400 percent increase in budgetary spending (Kyckelhahn 2012). The use of

private prisons, once a rarity, saw 90 percent growth between 1999 and 2012 (Carson 2015).

2
 It is important to note that incarceration rates of this magnitude are unique to the United

States. From an international perspective, the U.S. leads the world in incarceration rates

(Walmsley 2007; International Centre for Prison Studies 2015). For example, although the

United States only accounts for approximately 5 percent of the worlds population, we house

roughly one-quarter of the worlds prisoners (Travis et al. 2014). As another example,

approximately 1.6 million people were incarcerated in jails or prisons across all of Europe during

2014 (Aebi et al. 2015), yet 2.2 million people were incarcerated in the U.S. alone during that

same time period (Kaeble et al. 2015).

Although recent years have been accompanied by small declines in the overall rates of

correctional supervision in the United States, these declines are attributed largely to reductions in

the use of community supervision rather than significant reductions in the use of incarceration

(see Kaeble et al. 2015). Over time, it has become apparent that the U.S. is ill-equipped to

incarcerate at the rates we do. For example, in 2014, 18 states and the Federal Bureau of Prisons

were operating above their maximum capacity, with ranges from 100.5 percent above capacity in

Montana to 150.4 percent above capacity in Illinois (Carson 2015).

Recent estimates also quote costs at 28,323 dollars per inmate per year in state custody

(Kyckelhahn 2012), which is becoming more and more difficult to sustain given the budgetary

and healthcare crises the U.S. is facing. In addition these pressing problems, there are a host of

inequalities that are perpetuated by our high rates of incarceration, not least of which involve

inequalities in health. There has been a great deal of attention in recent years on identifying and

explaining these collateral consequences from an empirical standpoint a brief review of them is

provided next.

3
The Collateral Consequences of Mass Incarceration
The criminological literature documents an array of serious consequences associated with

incarceration, most of which focus on the ways that incarceration is stratifying to both

individuals and communities (Wakefield and Uggen 2010). For one, it is clear that incarceration

is concentrated among certain groups, most specifically among minority men with little

education. For example, in his analysis on punishment and inequality, Western (2006) reported

that by the time they reached their 40th birthdays, two times as many black men in his sample had

prison records as college degrees.

According to the Bureau of Justice Statistics, at yearend 2013, black and Hispanic men

were incarcerated at 6 and 2 times the rates of their white counterparts, respectively (Carson

2014). In their analysis of administrative, survey, and census data, Pettit and Western (2004)

concluded that among black men born between 1965 and 1969, 1 in 5, or 20 percent, had served

time in prison by the time they reached their 30s. Comparatively, among white men born during

the same time period, only 3 percent had gone to prison by the time they reached their 30s,

making black men in the sample nearly 7 times more likely to go to prison than white men.

These racial disparities perpetuate disadvantage that is already concentrated among minority

groups.

Families are also negatively impacted by incarceration. Using data from the National

Longitudinal Study of Adolescent Health, Swisher and Roettger (2012) found that those who

experienced their fathers being incarcerated during childhood or adolescence were at increased

risk of developing depression. Children with an incarcerated parent also face heightened risks of

physical aggression (Wildeman 2010), delinquency (Murray et al. 2012; Swisher and Roettger

2012; Clear 2007), behavioral issues (Geller et al. 2012), and lower educational achievement

4
(Hagan and Foster 2012). These negative implications are especially potent for children of color.

In fact, research has shown that black youth are more likely to have a mother who is incarcerated

than white children are to have a father who is incarcerated (Western and Wildeman 2009).

Moreover, Glaze and Maruschak (2008) reported that black and Hispanic youth were

approximately 7 times and 3 times more likely to have an incarcerated parent than white

children, respectively.

In addition to interruptions in the parent/child bond during incarceration and the negative

effects this has on children, research has found that incarceration is a major risk factor for

marriage or relationship dissolution (Lopoo and Western 2005; Massoglia et al. 2011; Turney

2015). Legal fines assessed during sentencing as an additional form of punishment, in

combination with a limited ability to pay off those fines, also create legal debt for inmates and

their families at a level that is difficult to overcome (Harris et al. 2010). Additionally, ex-inmates

are at risk for both unemployment and earning lower wages, both of which are challenging to

transcend due to the enduring effects of incarceration-related stigma as well as diminished

capacity to compete for jobs (Pager 2003; Pager 2007; Western 2002). With fractured

relationships between parents and increased risks of financial problems, major strains are placed

on the family unit as a result of incarceration.

Neighborhoods also face problems because of the far reaching effects of incarceration.

Approximately 500,000 people are released from prisons to rejoin communities each year

(Kaeble et al. 2015b) and there is a great deal of research which supports the conclusion that

incarceration weakens communities, especially communities that are already poor and

disadvantaged (Clear 2007; Morenoff and Harding 2014). Residential instability has strong ties

to incarceration, for example. Warner (2015) utilized a nationally representative dataset to

5
explore the relationship between residential mobility and incarceration. Warner concluded that

respondents with a history of incarceration were more likely to move after incarceration than

prior to incarceration, suggesting that incarceration contributes to residential instability. Other

scholars have reported that former inmates face disproportionate rates of homelessness, another

indicator of distress in neighborhoods (Metraux and Culhane 2006; Williams et al. 2010).

In addition to the collateral consequences outlined above, it is apparent that incarceration

has strong ties to health and well-being. There is a growing body of work that identifies

incarceration as a salient point of exposure to infectious disease and stress-related illness, for

example (Massoglia 2008). This is especially evident in that inmates have been shown to

contract Hepatitis C Virus at up to 20 times the rates of their community dwelling counterparts

(Macalino et al. 2004; Binswanger et al. 2009) and HIV at 2 to 5 times the rates of non-

incarcerated samples (Okie 2007; Wilper et al. 2009). Prisoners have also been found to have

1.5 times the risk of hypertension in comparison to those in the general population (Maruschak

and Berzofsky 2015).

In addition to heightened exposure to infectious disease and other stress-related illnesses,

there is evidence to suggest that incarceration has the potential to influence a variety of other

indicators of health. Schnittker and John (2007) analyzed a nationally representative dataset and

concluded that those with a history of incarceration were more than twice as likely to report

severe health impairments. Massoglia (2008b) found similar results, concluding that

incarceration was a significant predictor of physical health functioning at age 40, indicating long

term-effects of incarceration on health. Notably, the size of the effect of incarceration on

physical health functioning was even larger than other well-documented predictors of health such

as cigarette use, exercise, and educational attainment. Other research points to incarceration as a

6
risk factor for mental health problems (Schnittker et al. 2012; Schnittker 2014), chronic illness

(Binswanger et al. 2009; Wilper et al. 2009; Harzke et al. 2010; Maruschak and Berzofsky

2015), increased body mass index (Houle 2014), and dangerous levels of sodium intake (Herbert

et al. 2012).

Scholars have also shown how incarceration is tied to mortality. For example,

Bingswanger et al. (2007) reported increased mortality risks among those recently released from

a period of incarceration in comparison to the general population. Likewise, Rosen et al. (2011)

compared North Carolina Prison records with state death records between 1995 and 2005 and

concluded that there were more deaths than expected from viral hepatitis, liver disease, cancer,

chronic lower respiratory disease, and HIV among prisoners in comparison to non-incarcerated

groups. Patterson (2013) echoed these findings, concluding that for each year of incarceration

served, an individuals life expectancy may be reduced by an average of 2 years. Other research

offers support for an accelerated aging hypothesis, in that prisoners may physiologically age up

to 10 years faster than their community dwelling counterparts (Dawes 2002; Aday 2003; Loeb et

al. 2008; Chodos et al. 2014).

The findings explained above provide a brief outline of the range of collateral

consequences associated with incarceration. These collateral consequences include, but are not

limited to, the reproduction of racial inequality, damage to the family unit, damage to

neighborhoods, and declines in health. This growing body of research is important, and

criminologists must continue to explore the ways in which incarceration is stratifying to

individuals and communities. One area that is particularly important, yet underdeveloped in the

literature, involves understanding how incarceration is impacting a new and growing population

of prisoners: the elderly.

7
Aging Prisoners

Older prisoners represent the fastest growing age group within our prison system today

(Aday 2003). For example, the number of state prisoners 55 years of age and up increased 400

percent between 1993 and 2013, growing from 3 percent of the state prison population in 1993 to

10 percent in 2013 (Carson and Sabol 2016). Given our trend of high incarceration rates, in

addition to the U.S. Census Bureaus estimates that nearly 20 percent of the population will be at

least 65 years old by 2050 (Vincent and Velkhoff 2010), it is likely that the elderly prisoner

population will continue to expand in the coming years.

This is problematic for a variety of reasons. For one, incarceration already represents a

potent risk factor regarding a variety of negative health outcomes as outlined above. In addition,

aging is accompanied by declines in health status and increased morbidity in general (Adams and

White 2004). Given that age and stress have an interactive effect on the immune system,

prisoners are especially vulnerable to disease and premature mortality as they get older (Graham

et al. 2006; Patterson 2013).

Maruschak and Berzofsky (2015) offer an example of increased risk with age, as 72

percent and 35 percent of prisoners 50 years of age and older reported having a chronic health

condition or infectious disease in 2012, respectively, while 55 percent and 18 percent of

prisoners 35 to 49 years of age reported the same. When compared to their counterparts in the

community, prisoners 50 years of age and up are significantly more likely to have a disability

(Binswanger et al. 2009) and suffer from an average of 2 to 3 chronic health conditions at any

given time, again highlighting older prisoners vulnerability to poor health outcomes (Aday

2003; Loeb and Steffensmeir 2006).

8
 Another critical point is that prisons were not constructed or designed with the geriatric

prisoner in mind (Aday 2003). Prisons generally serve as poor models in regards to the

provision of care for older adults and this has serious implications. For example, older adults

tend to be more sensitive to changes in temperatures, yet prisons are typically ill equipped to be

responsive towards such needs (Reimer 2008). Temperatures are difficult to regulate and extra

blankets are viewed as privileges or threats to security. Bunk beds are also commonly used for

sleeping arrangements in prisons, which creates accessibility issues for older inmates who have a

hard time climbing as well as increases the risk for sustaining serious injuries such as falls. The

mattresses that are provided to inmates also tend to be very thin, and this can be particularly

problematic for older inmates who suffer from chronic pain.

Moreover, research has shown that many prisoners, despite having a serious chronic

physical illness, fail to receive medical care during incarceration (Wilper et al. 2009). Not

receiving medical attention can exacerbate illness. We also know that there are problems with

the provision of proper medications for inmates in prisons (Williams et al. 2010). Given the

massive size of prison campuses, it can also be difficult to respond quickly to medical

emergencies such as strokes and heart attacks. For example, the distance between the medical

unit and each cell block within a prison can vary substantially. Since many prisons are also

located in rural areas, commutes to the nearest hospital can be lengthy. These issues, perhaps

less pressing for young and healthy prisoners, become more problematic as aging and the

development of illness occur.

In combination, the aforementioned details are concerning for the future of corrections.

As they age growing numbers of incarcerated adults will require advanced medical care for

chronic disease management and associated morbidity. Declines in health are likely to be

9
coupled with more extensive medication needs, for example. Basic tasks like walking, bathing,

and getting dressed may also require assistance. Yet, these needs are difficult for prisons to meet

(Ahalt et al. 2013). Older inmates also cost approximately 3 times as much to incarcerate as

younger prisoners, in large part because of medical expenses associated with aging (Williams et

al. 2012). These expenses will continue to tax already strained correctional budgets during

incarceration and expenses associated with declining health will then be passed along to

communities and families upon release.

There will also be growing numbers of prisoners who require end of life care within

prison walls. In 2013 for example, 57 percent of state prisoner deaths were among prisoners 55

years of age and up, as compared to 34 percent in 2001 (Noonan et al. 2015). The vast majority

of those deaths, 80 percent, were due to illness. Yet, very few prisons have hospice or palliative

care programs in place within their institutions (Aday 2003; Linder and Myers 2007).

The Current Study

Despite the collision of the aforementioned factors, we lack comprehensive examination

in the literature regarding a range of health related problems associated with aging in prison.

This is the case for a variety of reasons. For one, the problem has not always been as pressing as

it is today. In the past, the average age of inmates was much younger and there was a smaller

percentage of people in older age groups serving time in prisons (Aday 2003; Carson and Sabol

2016). Additionally, the process of obtaining human subjects approval when proposing original

data collection with inmates can be cumbersome and the public has generally unsympathetic

feelings towards inmates as a population (Williams et al. 2012). Prisoners also reside in a very

hidden and difficult to access environment where outsiders are generally unwelcome. This

10
dissertation contributes to the literature by moving beyond these barriers and unpacking some of

the health related issues that older inmates face.

The focus of this dissertation was to answer the following overarching research question:

what does it mean to age in prison? To address this question, data were collected that

concentrated on 3 different (but related) components of aging within the context of the prison

environment and an empirical chapter was written about each component. These 3 components

include: overall health, chronic disease management, and end-of-life planning. Below, each of

the 3 chapters are briefly introduced.

Paper 1: Secondary Stressors as Predictors of Health for Elderly Offenders

The first empirical paper addresses the overall health of older inmates. Specifically, this

paper explores how health ratings among older inmates are related to three stressors tied to the

incarceration experience: unemployment, social isolation, and deprivation. We know from the

literature that incarceration is status stripping (Goffman 1963), depriving (Sykes 1958), and

heavily structured by coercion (Colvin 1992). We also know from the literature that stress is tied

to health and exposure to both primary and secondary stressors can fuel negative health

outcomes (see Pearlin 1989). Given what it means to be incarcerated, incarceration itself can be

seen as a primary stressor that also exposes its captives to a variety of secondary stressors, both

of which have ties to health.

In recent years scholars have identified a number of secondary stressors that are linked to

incarceration. For example, diminished social standing (Porter 2014), parenting problems

(Turney et al. 2012), unemployment (Pager 2003, Pager 2007), increased financial strife (Porter

2014), and relationship dissolution (Massoglia et al. 2011; Turney 2015) are all secondary

stressors with strong links to incarceration. Given the documented connection between chronic

11
stress and poor health (Pearlin et al. 1981; Turner et al. 1995; Turner and Lloyd 1999;

Landsbergis et al. 2003; Turner and Avison 2003; Aboa-Eboule et al. 2007; Chida et al. 2008;

Nielsen et al. 2008; Block et al. 2009; Finlayson et al. 2010; Buyck et al. 2011; Lunau et al.

2013), the fact that incarceration exposes inmates to a variety of secondary stressors makes it an

important area of inquiry.

However, thus far most research focuses on linking poor health to secondary stressors

that are measured post-incarceration. This paper considers stressors that were measured during

incarceration among a sample of older, incarcerated men. Estimates show that 1 in 9 prisoners

are now serving sentences of life (Nellis et al. 2013), which makes it important to consider

stressors that are experienced as regular components of prison life. Given the aging of the

prisoner population (Aday 2003), it is also worthwhile to examine the impact of these stressors

on aging inmates in particular. Data for this paper come from survey-led, quantitative interviews

with a sample of older inmates. Respondents were asked to assess their own health statuses and

provide demographic information about themselves. Data were also gathered to assess

respondents employment statuses, degree of social isolation, and exposure to deprivation.

Paper 2: If You Dont Know, They Treat You Like You Dont Know: Chronic Disease
Management and the Role of Cultural Health Capital for Older Inmates
The second paper addresses the issue of chronic disease management among older

inmates. The accelerated physiological aging hypothesis asserts that prisoners can be expected

to age approximately 10 years faster than their community dwelling peers, which has led

researchers to operationalize older inmates as those who are 50 years of age and up (Dawes

2002; Aday 2003; Loeb and AbuDagga 2006). There is empirical support for this hypothesis

when comparing inmate and community populations on the frequency and onset of conditions

such as chronic lung disease and injuries such as falls (Chodos et al. 2014) as well as self-

12
reported health statuses (Loeb et al. 2008). Co-morbidity is also common among older prisoners.

Estimates tend to report that as a group, older inmates suffer from an average of 2 to 3 chronic

health conditions at any given time (Aday 2003; Loeb and Steffensmeir 2006; Harzke et al.

2010).

It is clear in the literature that older inmates carry a high chronic disease burden. Yet,

there are weaknesses in terms of health promotion and maintenance within prisons. For

example, scholars have documented problems with prisoners not receiving medical attention

since being incarcerated (Wilper et al. 2009), not receiving appropriate medications (Williams et

al. 2010), and with consuming of excessive levels of sodium (Herbert et al. 2012). Prisoners also

have to navigate some pretty serious incarceration-specific barriers as they manage their health.

Inmates cannot take walks to burn calories and increase movement whenever they would like,

for example. They also generally cannot check their blood-sugar levels whenever they would

like or prepare their own meals to target dietary restrictions specific to their diseases.

We know very little in the literature about how older inmates manage chronic illnesses

within the depriving environments in which they live. It was important to explore chronic

disease management among older inmates for this reason, especially because the problem of

chronic disease management will only intensify as the prisoner population continues to age.

Data for this paper were taken from qualitative notes gathered during survey-led interviews with

older inmates. These qualitative notes focused on accounts respondents offered about their

experiences with incarceration and health care, the concerns they had about their health due to

incarceration, and the strategies they employed in hopes of improving their health during

incarceration.

13
Paper 3: An Exploration into End of Life Planning among a Sample of Older Male Prisoners

The third paper focuses on end-of-life planning. This component of aging was important

to explore because as discussed above, a growing number of prisoners are aging behind bars and

increasing numbers of prisoners are dying behind bars. In states like Pennsylvania, a life

sentence does not mean 25 years. Rather, a life sentence is essentially an arrangement for where

the sentenced will die: prison. Despite these facts, we know very little about end-of-life care in

prison settings, particularly from the perspective of older inmates themselves.

This gap in knowledge is important to address. We know from community settings that

when people do not decide early about what they want for end-of-life care, it costs more in

resources later and the quality of the care provided can become compromised. Moreover, if

preferences are not voiced in advance, there is a risk that preferences will not be honored in the

moment (Kelley et al. 2010). Given the uniquely depriving nature of the prison environment

(Skykes 1958), it is important that we have data to draw on from samples of incarcerated men

specifically when exploring the factors that might play a role in end-of-life decisions among

prisoners. Currently, there are only 2 empirical studies that offer such data and both involve

samples of 100 or fewer prisoners (Phillips et al. 2009; Phillips et al. 2011).

Data for this chapter come from survey-led quantitative interviews with inmates about

hypothetical illness scenarios, in which inmates were asked to imagine that their health reached

certain points of illness (i.e., severe stroke with no chance of recovery). Respondents were then

asked to consider what medical options (i.e., feeding tube, CPR) they thought they would want

given their state of health in each scenario. Five specific factors race, death distress, age upon

release, deprivation, and social support were explored to determine their potential association

14
with these preferences. Due to the particular dearth of information in the literature about this

issue, this chapter was designed to be more exploratory and descriptive in nature.

Conclusion
The use of mass incarceration in the United States has brought with it real and serious

consequences. Incarceration is already tied to a host of collateral consequences, and growing

numbers of people are facing these consequences as a result of their exposure to incarceration.

Given that the prisoner population is now aging, we are approaching a crisis in corrections.

Incarceration rates continue to be exorbitant and larger portions of the prisoner population are

approaching old age, many with significant health problems (and some with terminal conditions).

The collision of these factors has brought some scholars to lead a charge towards

understanding the problems facing older inmates and the correctional facilities that house them.

Ahalt et al. (2015), for example, completed an analysis of National Institute of Health (NIH)

grants from 2008 to 2012 and reported that out of 250,000 NIH funded grants, less than .1% (n =

180) focused on criminal justice health research. The authors concluded that the current state of

research funding towards addressing the health and health care needs of those involved with the

criminal justice system, including incarcerated populations, is poor and more funded research is

necessary.

Williams et al. (2012b) reviewed results from a meeting that convened 29 national

experts in correctional health care, academic medicine, nursing, and civil rights in order to

establish a policy agenda specifically targeted towards improving the medical care of older

inmates. The authors described this as necessary due to the growing intensity of the problem of

15
housing so many older adults behind bars. Ahalt et al. (2013: 2014) also emphasized the

importance of the problem by articulating the following:

because older prisoners are generally in worse health, come into more contact with the
correctional healthcare system, and generate higher healthcare costs than younger
prisoners, they represent a critical population in which to optimize healthcare value, yet
there remains a profound lack of data that can be used to evaluate and improve geriatric
prison healthcare value [emphasis added].
The research offered in this dissertation answers the calls outlined above by collecting

more data to help explore the health-related issues that older inmates are facing and by doing so

with a policy-driven focus. This dissertation also contributes to an emerging area of research

that considers the collateral consequences of incarceration. Here, the difficulties of maintaining

health and well-being while aging within the constraints of the prison environment are offered as

an additional set of collateral consequences for scholars in corrections to contemplate. In the

chapters that follow, I first offer a detailed explanation of the research methods utilized to collect

the data, and subsequently present each of the three empirical papers introduced above.

16
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 CHAPTER 2

RESEARCH METHODOLOGY

Setting and Participants

This study was approved by the Kent State University institutional review board as well

as the Research Review Committee within the state Department of Corrections (DOC).

Participants were recruited from three mens State Correctional Institutions (SCIs) within one

state in the northeastern United States. The three SCIs were stratified by security level: SCI 1 is

a minimum security facility; SCI 2 is a medium security facility; and SCI 3 is a super maximum

security facility. Table 1 highlights key descriptive information about each of the three

institutions, which was gathered from close-out interviews with the superintendents assistant at

each institution post-data collection as well as the state DOCs website.

SCI 2 and SCI 3 were both established in 1993 and are two of five prototypical prisons

dedicated within the state that year. By contrast, SCI 1 was established in 1978 and therefore has

a less modern design. In addition to differences in design, SCI 1 is a designated minimum

security facility, which gives the institution more of a campus feel than the other two institutions.

Many of the housing units actually resemble dormitories. Prized employment at SCI 1 involves

working for the Community Work Program (CWP).

29
 The CWP allows inmates who are close to completing their sentences and of the proper

clearance to perform labor in the community for minimum wage (currently $7.25). Other

programming also aids in the campus feel of the institution. The Corrections Adoptive Rescue

Endeavor (CARE) program, for example, involves pairing inmates with rescue dogs for several

weeks. During this time, inmates teach the dogs basic tricks and socialization skills that will

help make them more adoptable. The dogs reside with their assigned inmate owner during this

training period and are then sent back to the community animal shelter for adoption.

By contrast, SCI 2 and SCI 3 are medium and super-maximum security facilities,

respectively. These facilities not only have a higher security level designation, but feel

noticeably more restrictive. For one, both institutions enforce added security procedures at

check in. For example, before a visitor can enter SCI 3, he or she must submit to drug testing,

30
which involves allowing an officer to rub a cloth over both of the visitors hands. There are also

noticeably more rows of barbed wire surrounding the gates at both institutions. Whereas only

46.81 percent of full time employees at SCI 1 were correctional officers at the time of data

collection, 60.37 percent of full time employees were correctional officers at SCI 2 and 67.09

percent were correctional officers at SCI 3. Importantly, only 5.84 percent of full time

employees at SCI 3 were female at the time of data collection, a stark contrast between 22.00

percent and 23.80 percent at SCI 1 and SCI 2, respectively.

The capacity for inmates placed in the restricted housing unit (RHU), previously referred

to as solitary confinement, is also greater at both SCI 2 and SCI 3. At SCI 1, the capacity is only

56 inmates whereas for SCI 3 the capacity is 384 inmates. SCI 3 also houses the majority of the

states capital case inmates, with 128 cells for these inmates alone. Prized programming at SCI 2

and SCI 3 primarily involves work assignments with Correctional Industries (CI). CI positions

typically offer higher pay than other jobs within the institution as well as the potential for

bonuses. SCI 2 houses the CI Commissary Distribution Center. Here, inmate employees (n =

90) process, pack and ship commissary orders to prisons throughout the state. Conversely, SCI 3

is home to the CI Garment Factory, where inmate employees (n = 56) make inmate clothing

items, hats, and laundry bags for the state.

A total of 5,504 adult men were housed across the three facilities at the time of data

collection, with SCI 2 incarcerating the highest number of inmates (n = 2,301). The mean age of

inmates incarcerated at each institution ranged from 38.00 (SCI 3) to 40.51 years (SCI 2). The

percentage of the inmate population 50 years of age and older ranged from 20.39 (SCI 3) to

24.07 percent (SCI 2). By contrast, nationwide estimates for the percentage of state and federal

incarcerated men who are at least 50 years of age was 17.90 percent at year end 2013 (Carson

31
2014). Notably, despite the large populations incarcerated at these institutions and the

percentage of those populations that were older, the percentage of full time employees

designated as medical staff ranged from 5 percent at SCI 3 (n = 35) to 8 percent at SCI 2 (n =

43). Each facility also had a very limited number of beds available in the medical unit. Medical

bed space ranged from 12 beds at SCI 1 to 19 beds at SCI 3. Notably, this would accommodate

only .008 percent of the population at SCI 1 and .010 percent of the population at SCI 3 at any

given time. Related to diet, staff reported that inmates were served an average of 2,000, 2,575,

and 2,400 calories per day at SCI 1, SCI 2, and SCI 3, respectively.

Inclusion criteria for this study dictated that participants had to be at least 50 years of age

in order to participate, as this is the most common lower limit age criterion used in studies of

older inmates health (see Loeb and AbuDagga 2006). Participants were also required to be

English speaking because funding for a translator was not available. Participants were excluded

from sampling if they: (a) had a sentence of death; (b) had an IQ score that fell 2 standard

deviations below the mean; and (c) had a mental health classification within the state DOC that

indicated (1) the respondent had a mental health history and required significant monitoring by

the Psychiatric Review Team AND (2) the respondent was currently receiving treatment for a

substantial disturbance of thought or mood which significantly impaired judgement, behavior,

capacity to recognize reality, or cope with the ordinary demands of life. The IQ score and

mental health classification parameters were set so as to exclude any participants who had

cognitive or mental health impairment severe enough to potentially hinder their abilities to

provide informed consent, which was an established priority given that that prisoners are a

protected group in research. Based on the aforementioned inclusion and exclusion criteria, the

Research Review Committee chairperson at the DOC provided me with a computer-generated

32
listing of all eligible prisoners for recruitment. Of the 5,504 men housed across the three

facilities at the time of the study, 1,270 (23 percent) were at least 50 years of age and 1,158 (21

percent) met recruitment criteria.

Procedures
Data were collected over a 13 month period (October 2013 to November 2014) and were

gathered in three phases. Each phase involved the same procedural steps but occurred at

different points in time. Phase 1 was completed at SCI 2, Phase 2 was completed at SCI 1 and

Phase 3 was completed at SCI 3. At each SCI, I began by visiting the institution several weeks

prior to data collection for pre-recruitment. During this visit, I accompanied religious staff

throughout the day as they led worship services.

Prior to each scheduled worship service, staff allowed me to briefly introduce the

research to any prisoners who were in attendance and explain that they may be getting a letter in

the coming weeks inviting them to participate. At this time, attending prisoners were permitted

to ask questions about the goals and procedures of the research design. Examples of questions

asked included the following: why do you have to be at least 50 years old to participate, how

long does the survey take, and when will you be sending out the letters? In an attempt to

reach as many potential participants as possible, I attended a range of denominational worship

services, including Protestant, Catholic, Islam, Native American, and Jehovas Witness services.

Since all inmates attending religious worship would clearly not meet study inclusion criteria, I

also encouraged those present to pass along information about the study to those who might be

interested but were not present. In total, I had contact with approximately 215 prisoners across

the three SCIs at religious services during this phase of the research. A powerpoint slide

33
explaining the study was also placed on the rotation for the inmate run television channel at this

time.

After the pre-recruitment phase, I created recruitment letters using the computer-

generated list of eligible prisoners that the Research Review Committee chairperson at the DOC

provided. These letters were addressed to each eligible prisoner by name and placed in each

prisoners respective mail drawer. Within the letter, recruits were informed of the studys

purpose and told that participation was completely voluntary. The letter also explained to

potential participants that choosing or not choosing to participate would have no impact on their

parole status or privileges at the institution. If after reading the letter prisoners wished to

participate, they were instructed to write a note to the point of contact the researcher had

identified at the SCI (the superintendents acting assistant) explaining that they wished to

participate and would like to be scheduled for an interview with the researcher. Requiring

respondents to send in a note indicating that they would like to be scheduled for an interview

provided some confidence to me that respondents were not being coerced to participate, as some

initiative was required on their behalves.

The superintendents assistant then compiled a list of those prisoners who submitted

letters and scheduled call-out lists for each day I would be conducting interviews. Designated

interview days were negotiated between myself and the superintendents assistant, with priority

given to days that were most convenient for the institution. I visited the SCI anywhere from 2-4

days per week until the list of prisoners who expressed a desire to participate had been

exhausted. Prior to participating in the interview each potential respondent was given an

informed consent document, which explained the studys purpose, the voluntary nature of the

study, and what the respondent would be asked to do. Before signing the informed consent

34
document, I walked through all components of the document and made sure the respondent

understood each item and had the opportunity to ask questions. Upon signing the informed

consent document, I conducted a survey-led interview with the respondent. Across the three

SCIs, interviews lasted an average of 50 minutes.

In total, 1,158 prisoners were asked to participate across the three SCIs, 374 submitted

notes expressing interest in participating, and 279 completed survey-led interviews, yielding an

overall response rate of 24 percent. The 24 percent response rate for the surveys is on the lower

end but comparable to other survey research with prisoners, which tends to be between 26 and 53

percent for general population inmates and 10 percent for inmates in administrative segregation

(see Table 2). A response rate of 24 percent is also in line with response rates among community

populations (see Table 2).

Table 2. Survey Research Response Rates

Response Rates Reported
Prisoners - Gen Pop
Blitz et al. (2008) 26.0% to 53.0%
Pickett et al. (2014) 38.8%
Rocheleau (2013) 52.0%
Prisoners - RHU
Wolf and Shi (2009) 10.0%
Community
Schrader et al. (2010) 21.0%
Bookwala et al. (2001) 25.0%
Musa et al. (2009) 39.6%
Carr (2012) 53.0%

Those who submitted notes but ultimately did not participate (n = 95) were either

scheduled to work on the day of the interview and did not want to miss their shifts, were too ill to

attend, or changed their minds. All interviews were conducted one on one between myself and

each respondent. Roughly 20 percent of interviews took place at tables inside the general

population visiting room, which is similar to a cafeteria type setting, and the remaining 80

35
percent occurred in the no-contact visiting area at each facility. In an attempt to proactively

address any reading, writing, or vision deficiencies on the part of inmates, as well as reduce the

amount of missing data, all survey questions were read aloud by me and responses were

transcribed directly onto the survey instrument for each interview.

In addition to the quantitative survey data gathered, I also took qualitative notes

throughout the interviews when respondents wanted to elaborate on an answer or emphasize a

point regarding their experiences with the prison health care system. Respondents were also

asked the following questions at the surveys conclusion: is there anything else you would like

to add today and do you have any other suggestions to help improve health care within the

prison system? The open-ended explanations and anecdotal accounts provided were transcribed

directly onto each survey instrument and were coded either as paraphrased or direct quotes. Of

the 279 respondents who completed interviews, 66 percent (n = 184) provided supplemental

comments or anecdotal accounts of this nature. Thus, in addition to the quantitative sample of

279 cases, an idiographic data sample of 184 cases was collected for analysis.

In order to maintain confidentiality and protect respondents, the names of respondents

were never recorded on their respective survey packets or attached to the qualitative data. Each

survey packet was handled only by me and all information collected on the survey packets was

protected by me and never shared with another party. At no point in time did SCI or DOC staff

have access to completed surveys. Inmates never had access to the completed survey packets of

other respondents either. Further, at no point in time were completed surveys left unattended or

within plain view of staff or inmates.

Tables 3, 4 and 5 display key frequencies and descriptive statistics for those who

participated in the research. Respondents were an average of 58 years, with the youngest

36
respondent being 50 years of age and the oldest respondent being 78. Forty-nine percent (n =

137) had completed high school or obtained a GED while 21.1 percent (n = 59) had less than 12

years of schooling. The racial distribution up of the sample was split between white and black

respondents, with 61.1 percent of respondents (n = 168) reporting white for their race and 38.9

percent (n = 107) reporting black. The majority of respondents (77 percent) reported having at

least one child, with respondents disclosing having an average of 2.5 children overall. Only 18.3

percent (n = 51) of the sample reported being married, with 39.8 percent (n = 111), 35.8 percent

(n = 100), and 6.1 percent (n = 17) designating themselves as divorced, never married, or

37
widowed, respectively. Overall, 60.6 percent (n = 169) were employed at the time of interview,

while 39.4 percent (n = 110) were currently unemployed.

Most respondents were incarcerated at either SCI 3 (40.5 percent) or SCI 2 (40.1

percent), while 19.4 percent (n = 54) were incarcerated at SCI 1. The sample was fairly evenly

divided between first and repeat prison terms. At the time of interview, 47.7 percent of

respondents (n = 133) were serving their first prison term, while 52.3 percent (n = 146) had

served time in a prison prior to this current period of incarceration. Most respondents (77.4

percent) were incarcerated for crimes of violence (sex offenses, homicide or manslaughter,

robbery, or assault), but 22.6% (n = 63) were serving time for non-violent offenses such as

property or drug crimes. At the time they were interviewed, respondents had served an average

of 164.4 months (13.6 years) for their most recent crimes and 24.4 percent (n = 68) were serving

sentences of life.

Table 4. Frequency Distribution (Offense and Sentencing)

n %
Prior Prison Term Served
Yes 146 52.3
No 133 47.7
Conviction
Violent 216 77.4
Sex 98 35.1
Homicide/Manslaughter 82 29.4
Robbery 26 9.3
Assault 10 3.6
Non-Violent 63 22.6
Property 17 6.1
Drug 34 12.2
Other 12 4.3
Sentence
Life 68 24.4
Other 211 75.6

38
 The majority of respondents (90 percent) were residing within the general population of

prisoners at their respective institutions. However, a particularly unique characteristic of this

sample is that 10 percent of respondents (n = 28) were being housed at the restricted housing unit

(RHU) within the super-maximum security institution (SCI 3). Those residing within the RHU

are confined to single cells, prohibited from participating in any programming or employment,

and are only able to leave their cells for 1 to 2 hours per day for physical activity. Respondents

could be sent to the RHU for either punishment or for administrative custody, a strategy

employed to help protect prisoners who may be at risk if living in the general population. Many

of the respondents I interviewed with these living arrangements had been residing in the RHU

for years. Due to the dearth of studies which examine the physical and mental health of

prisoners residing in solitary confinement within supermax institutions (see Pizarro and Stenius

2004; Arrigo and Bullock 2008) this is one of the most exclusive characteristics of the sample.

Table 5. Descriptive Statistics

M sd Range
Demographic
Age 58.3 6.4 50.0 - 78.0
Number of Children 2.5 2.5 0.0 - 14.0
Frequency of Prayer (per week) 10.6 10.5 0.0 - 56.0
Sentencing
Time Served (months) 164.3 142.9 7.0 - 576
Sentence Length (months) 211.5 185.3 18.0 - 1140.0
Health
# of Chronic Health Conditions 3.4 2 0.0 - 11.0
# of Medications 3.7 3.8 0.0 - 23.0

In terms of health, respondents disclosed suffering from an average of 3.5 chronic health

conditions, with high blood pressure, high cholesterol, arthritis, diabetes, and other heart

problems being the most common conditions reported. There was a fairly even divide between

respondents ratings of their own health, with 50.9 percent of respondents reporting either

39
excellent (10 percent) or good health (40.9 percent) and 49.1 percent reporting either fair (33.7

percent) or poor health (15.4%). On average, respondents disclosed taking a total of 3.8

medications at the time of their interviews, with a range of 0 to 23 medications consumed per

respondent.

Table 6 highlights available aggregate data. Among my sample, whites are

overrepresented (61 percent in my sample versus 56 percent within the overall sampling frame),

blacks are adequately represented (both at 39 percent), and Hispanics are underrepresented, as no

Hispanics are represented in my sample yet they comprise 5 percent of the overall sampling

frame. Further, inmates with life sentences are overrepresented in my sample, as they make up

24 percent of my sample and only 12 percent of the overall sampling frame.

Table 6. Sample vs. Sampling Frame Data

(sample) (sampling frame)
n % n %
Race
White 168 61.1 619 55.8
Black 107 38.9 438 39.5
Hispanic 0 0.0 52 4.7
Sentence
Life 68 24.4 136 12.2
Other 211 75.6 978 87.8
Institution
SCI 1 (minimum) 54 19.4 306 27.5
SCI 2 (medium) 112 40.1 526 47.2
SCI 3 (super-max) 113 40.5 282 25.3

Measures and Materials Quantitative Data

Quantitative questions were prompted with a 35-item survey instrument developed in

consultation with the literature. During the interview I gathered information about a range of

demographic factors, conviction and sentencing information, extent of social support among

family and friends, religiosity, trust in prison staff and the prison health care system, current

40
health, the extent of deprivation or hardships experienced while incarcerated, death distress,

expectations regarding aging, and preferences for medical treatment across several hypothetical

illness scenarios. Each measure is explained in more detail below.

A variety of questions were asked in order to capture respondents demographic

characteristics. Specifically, respondents were asked about their age, highest grade of

education completed, race, state or country of birth, and marital status. Respondents were also

asked whether or not they had any children, and if so how many.

To record respondents incarceration histories, I asked if they had ever been

incarcerated in a prison prior to this current period of incarceration, how many months they had

been incarcerated for their most recent offense, what they were convicted of, and what sentence

they were given. For those who did not receive sentences of life, I also asked about their

expectations regarding parole.

To assess the extent of social support respondents had, I asked how many times per

month they are visited by a friend or family member, how many times per month they have a

phone call with a friend or family member, and how many times per month they receive a letter

or package from a friend or family member. I also asked respondents to specify how many

friends they have that they could count on, how many family members they have that they could

count on, and how many staff at the institution were supportive of their needs.

To collect data on religiosity, I asked respondents what their religious affiliations were

(if any), how many times per week they attended religious services, and how many times per

week they engaged in prayer. I also asked respondents to answer whether or not they believed in

an afterlife.

41
 To understand respondents trust in prison medical staff and trust in the prison health

care system, I developed a scale to measure respondents beliefs about prison medical staff and

the health care system within the prison. Respondents were asked to provide likert scale

responses (1 = definitely false..2.3.4.5 = definitely true) for each of the following 6

statements (1) the prison medical staff care about my needs, (2) if I have a medical problem, I

do not have to wait long to see a doctor; (3) if a [medical] staff member tells me he/she is

going to do something in regards to my medical care, he/she will do it; (4) if I become

terminally ill while incarcerated, my wishes regarding how/when I want my life to end will be

respected; (5) inmates receive the same quality of health care as those living in the

community; and (6) the prison [medical] staff want me to be as healthy as possible. Those

with high scores on items 1, 3, and 6 on the scale have greater trust in medical staff, while those

with low scores on items 1, 3, and 6 have less trust in medical staff. Those with high scores on

items 2, 4, and 5 on the scale have greater trust in the prison health care system, while those with

low scores on items 2, 4, and 5 have less trust in the prison health care system. The only

research to date that has administered a scale to a sample of prisoners regarding trust and health

care merged questions about trust in physicians, trust in research and the medical community,

and perceptions about adequate health care (Phillips et al. 2011). As such, this scale will be a

new addition to the literature.

To capture respondents current health, I administered the Older Mens Health Program

and Screening Inventory (Loeb 2003). This scale includes a total of fifteen chronic conditions

(i.e., high blood pressure, cancer, arthritis, diabetes, etc.) as well as the option to write in

additional chronic health conditions that do not appear on the list (i.e., hepatitis C, anxiety,

epilepsy, celiac disease, etc.). Upon completion, items were summed to produce a total number

42
of chronic health conditions for each respondent. The Older Mens Health Program and

Screening Inventory (see Appendix A) has been widely used in both community (Loeb 2003)

and prison populations to assess health (Loeb, Steffensmeir and Kassab 2011; Loeb,

Steffensmeir and Priscilla 2007; Loeb and Steffensmeir 2006). Respondents were also asked to

choose one of four words that best described their health (excellent, good, fair, or poor) and

report the number of medications (excluding vitamins) they were currently taking.

To assess experienced deprivation or hardships while incarcerated, respondents were

asked to complete the Deprivation Scale (Rocheleau 2013), which was developed based on

Maitland and Sluders (1998) Prison Stress Scale. While the Deprivation Scale is a newer tool,

the Prison Stress Scale has produced Cronbachs alpha levels within acceptable limits for

research in the social sciences (see Maitland and Sluder 1998). Respondents responded to 19

statements about difficulties they had experienced while incarcerated (i.e, Missing family or

friends, Conflicts with prisoners, Quality of medical care, Concerns about my safety,

etc.) with a number from a likert scale (1 = this has not been hard at all for me,2.3.4....5

= this has been very difficult for me) and these responses were summed (see Appendix B).

Summed scores on the Deprivation Scale range from 19 to 95, with lower scores indicating a low

level of personal difficulty regarding exposure to incarceration-specific deprivation or hardships

and higher scores indicating a high level of personal difficulty regarding exposure to

incarceration-specific deprivation or hardships. Although the Deprivation Scale has been

administered in corrections populations (see Rocheleau 2013), this is the first study to utilize the

Deprivation Scale on a sample of older prisoners.

To collect data on death distress, respondents were asked to complete the Death Distress

Scale (DDS) (Abdel-Khalek 2011). Until now, prior studies have focused largely on death

43
anxiety by means of the Death Anxiety Scale (Templer 1970). The DDS, by contrast, has the

advantage of casting a wider net and captures three distinct constructs: death anxiety, death

depression, and death obsession. For the DDS, respondents were asked to respond to 24

statements about death (i.e, I find it greatly difficult to get rid of thoughts about death, I fear

dying a painful death, I lose interest in caring for myself when I think about death, etc.) with

a number from a likert scale (1 = the statement doesnt sound at all like me,2.3.4....5 =

the statement sounds very much like me) and these responses were summed (see Appendix C).

Summed scores on the DDS range from 24 to 120, with lower scores indicating low levels of

death anxiety, death depression and death obsession and higher scores indicating high levels of

death anxiety, death depression and death obsession. Although the DDS has been administered

in community populations (Abdel-Khalek 2011), this is the first study to utilize the DDS on a

sample of prisoners.

To capture respondents expectations regarding aging, respondents were asked to

complete the Expectations Regarding Aging Survey (ERAS-12) (Sarkisian et al. 2005). This

tool asks respondents to consider how much they believe or do not believe 12 statements about

aging (i.e., When people get older, they need to lower their expectations of how healthy they

can be, Its an expected part of aging to have trouble remembering names). For each statement,

respondents had to respond with a number from a likert scale (1 = the statement is definitely

true2.3.4 = the statement is definitely false). Within the 12 items, statements are included

to capture aspects of physical health, mental health, and cognitive health (see Appendix D). Low

scores on the ERAS-12 indicate low expectations in terms of the body maintaining good

physical, mental, and cognitive functioning as the individual ages. For example, those who score

low on the scale are likely to believe that pain, depression, and forgetfulness are normal aspects

44
of getting older. Conversely, high scores on the ERAS-12 indicate high expectations in terms of

the body maintaining good physical, mental, and cognitive functioning as the individual ages.

Although the ERAS-12 has been administered in community populations (Sarkisian et al. 2005;

Kim 2009; Davis et al. 2011; Meisner and Baker 2013), this is the first study to administer the

ERAS-12 on a sample of prisoners.

To collect data on respondents preferences for medical treatment, respondents were

asked to complete the Life Support Preferences Questionnaire (LSPQ) (Ditto et al. 2001). This

tool asks respondents to consider their preferences for antibiotics, cardio-pulmonary resuscitation

(CPR), tube feeding, and surgery options across a range of illness scenarios, including scenarios

involving end-of-life. The LSPQ details 9 hypothetical illness scenarios, each of which varies in

illness severity, prognosis, and level of pain. This measure has been used in community settings

(Bookwala et al. 2001; Ditto et al. 2001; Coppola et al. 1999) and has recently been used in

prison settings as well (Phillips et al. 2011; Phillips et al. 2009). In alignment with prior work

that incorporated only four of the nine original scenarios (Phillips et al. 2009; Phillips et al.

2011), I administered only six of the nine original scenarios in order to reduce respondent

burnout and to save time: current health, Alzheimers disease, severe stroke with no chance of

recovery, severe stroke with a slight chance of recovery, and terminal colon cancer with and

without pain. Treatment options for each scenario included antibiotics, CPR, surgery, and tube

feeding. For each treatment option, respondents selected a number between 1 and 5 to express

their desire for treatment (1 = definitely do not want234...5 = definitely want).

Measures and Materials Qualitative Data

Qualitative measures and materials were less structured than the quantitative measures

and materials. There were only two established questions that were asked with the intention of

45
gathering qualitative data. At the end of the survey, I asked respondents these questions, is

there anything else you would like to add today and do you have any other suggestions to help

improve health care within the prison system. In addition to these questions, however,

respondents were also given the opportunity throughout the structured survey to add anecdotal

accounts or comments to explain their answers or emphasize a concern. Specifically, I informed

respondents at the beginning of the survey that if they had any questions or wanted to add

anything as we moved through the survey, that they were welcome to do that.

I had no pre-established hypotheses or agenda in terms of my recording of the qualitative

comments that were given. Rather, my intention was for respondents to feel empowered to raise

points either not covered in the survey or not covered in enough detail. Indeed, many

respondents showed up to their interviews with their own notes or with concerns they wanted to

raise. Some respondents even wanted to raise points in an altruistic sense for prisoners they

knew who wanted to attend but could not or who they felt would have attended but were already

deceased or too ill to sit through an interview. I feel that taking notes actually enhanced my

rapport with respondents in a way that merely circling answers on the surveys would not have.

In fact, many respondents made comments throughout the interviews about how diligently I was

writing because they felt that was evidence I was taking their concerns seriously. As they made

points they felt were important, many respondents verbally told me, write this down. Thus,

this qualitative component of the research design offered methodological advantages over strictly

implementing the quantitative survey alone.

Data Analysis Plan

The analysis plan consists of three separate analyses with three distinct research

questions, each focused on one of 3 aspects of aging in prison: overall health, chronic disease

46
management, and end of life planning. Each analysis and its associated research question

occupies its own chapter in the body of this dissertation. It is important to note that Chapters 3

and 5 utilize the quantitative data while Chapter 4 focuses on the qualitative data. The data

analysis plan for each is introduced briefly below, then discussed in detail within each respective

chapter.

In Chapter 3 binary logistic regression analysis was utilized in order to understand the

potential influence of 3 different stressors associated with prison life unemployment, social

isolation, and extent of exposure to deprivation on the health ratings of older prisoners. Given

that the outcome variable has two categories (worse health/better health) and the predictors are a

combination of categorical and continuous variables, binary logistic regression was appropriate

for analysis in this chapter. Data for Chapter 3 were entered using SPSS version 22 and then

analyzed using the same software.

In Chapter 4, a modified grounded theory approach (Morse et al. 2009; Cutcliffe 2005) is

utilized to analyze the qualitative data. Since no specific hypotheses were tested, but rather the data

were analyzed with the intention of broadly exploring the concerns of older prisoners in regards to

health care, a modified grounded theory approach was incorporated. While grounded theory (see

Glaser and Strauss 1967) directs the researcher towards respondents accounts fully guiding the

research, modified grounded theory allows for the possibility that a researcher allows

respondents accounts to influence the research while also bearing in mind that the data may

have been collected with a broad research question in mind (i.e., what are the health care

related experiences of older prisoners?) (see Cutcliffe 2005).

Data for Chapter 4 were first transcribed in Microsoft Word, which produced over 200

pages of text. These data were then coded using the qualitative data analysis program QSR

47
NVivo, version 10. Content analysis was performed initially to identify emerging patterns

within the data (see Loftland et al. 2006). After initial patterns were identified, a more in depth

analysis was then be performed and refined coding was used to eliminate and collapse the full

list of themes identified initially. After refined coding, themes that were connected by sharing

focus on respondent concerns towards the management of chronic disease specifically were

selectively coded (see Loftland et al. 2006).

Finally, in Chapter 5 quantitative data were utilized again in order to assess the potential

influences of 5 specific factors (race, death distress, age upon release, deprivation, and social

support) on two binary outcome variables: desire for CPR (yes/no) and desire for tube feeding

(yes/no) in one of the hypothetical illness scenarios selected from the LSPQ (Ditto et al. 2001).

The hypothetical illness scenario chosen for Chapter 5 reads as follows: you have suffered a

severe stroke and have been in a coma for six weeks. In the opinion of your doctor, you have no

chance of regaining awareness or the ability to think, reason, and remember. Your current physical

condition is stable, but will slowly decline over time. You rely on others for help with feeding,

bathing, dressing, and toileting. You may live in this condition for several years.

This particular scenario was chosen because it captures two common fears regarding end of

life: loss of cognition and loss of independence. This scenario also clearly states that the doctor

believes there is no chance of recovery. Therefore, respondents were asked to consider their

preference for treatment in a situation where the doctor did not offer hope in terms of a recovery.

As in Chapter 3, binary logistic regression was selected for analysis because this approach is

commonly used for analyses involving a variety of predictor variables and a binary outcome

variable.

48
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Arrigo, Bruce A. and Jennifer Leslie Bullock. 2008. The Psychological Effects of Solitary

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Blitz, Cynthia L., Wolff, Nancy, and Jing Shi. 2008. Physical Victimization in Prison: The Role

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Loeb, Susan J. 2003. The Older Mens Health Program and Screening Inventory: A Tool for

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Loeb, Susan J., Steffensmeier, Darrell, and Cathy Kassab. 2011. Predictors of Self-Efficacy and

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53
 CHAPTER 3

UNEMPLOYMENT, SOCIAL ISOLATION AND DEPRIVATION:

EXAMINING SECONDARY STRESSORS AND HEALTH
AMONG ELDERLY PRISONERS

Introduction
With more than 1.5 million men and women currently incarcerated in state and federal

prisons throughout the United States (see Carson 2014) and nearly half a million individuals

filtering out of prisons each year (Kaeble, Maruschak and Thomas 2015), it is clear that

incarceration touches the lives of many adults in our country. However, the trend of exposing

excessive numbers of adults to incarceration in the U.S. is not new. Incarceration rates climbed

sharply roughly 40 years ago and have remained consistently high since that time (Travis,

Western, and Redburn 2014). After years of research, we also now know that incarceration is

tied to a host of damaging consequences. For example, incarceration reproduces racial

inequalities (Pettit 2012; Wakefield 2010) as well as a variety of health disparities (Massoglia

and Pridemore 2015; Porter 2014; Wildeman and Muller 2012; Schnittker et al. 2012; Massoglia

2008; Massoglia 2008b; Schnittker and John 2007).

Something that currently lacks comprehensive examination in the literature is

understanding the incarceration experiences of the fastest growing age group within the prison

system today: older prisoners (Aday 2003; Chettiar et al. 2012). Indeed, the prisoner population

54
is changing, with the number of older prisoners tripling between 2000 and 2013 alone (see Beck

and Harrison 2001 and Carson 2014). The risks for health declines that accompany aging in

general, coupled with the health disparities that the incarcerated face, make it important to

examine what it means to age in prison as our population of prisoners continues to get older.

This paper contributes to the literature by exploring the potential influence of 3 different

stressors associated with prison life unemployment, social isolation, and overall deprivation

on the health ratings of a sample of older inmates. Although exposure to incarceration

undoubtedly carries with it an array of collateral consequences, data in this paper indicate that

there are opportunities within the prison structure to diminish some of those consequences. For

example, prisoners in this sample who were unemployed were more than twice as likely to report

worse health outcomes than prisoners who were employed, which suggests that providing more

employment opportunities may be one avenue for enhancing the health of prisoners.

Review of Related Literature

Incarceration and Health

More than two million men and women are incarcerated in the United States and

approximately 70 percent of those individuals are serving time in either federal or state prisons

(Glaze and Kaeble 2014). The fact is, for the last four decades, the criminal justice system has

been overtaxed with inmates filtering in and out of prisons each year, which has generated a

great deal of scholarly attention over the last several years. Of particular interest are the efforts

scholars have made to identify and document an array of deleterious health outcomes that are

associated with exposure to incarceration (Massoglia and Pridemore 2015). For those who have

faced incarceration, negative outcomes include increased health risks in regards to infectious

55
disease and stress related illnesses (Bingswanger et al. 2009; Massoglia 2008), mental health

problems (Schnittker 2014; Schnittker et al. 2012), increased body mass index (Houle 2014), and

chronic illness (Wilper et al. 2009; Aday 2006; Aday 2003; Harzke et al. 2010).

Incarceration also poses a number of risks tied to overall health and mortality that have

been identified in the literature. For example, Massoglia (2008b) documented lower self-

reported health ratings among those who have faced incarceration and Bingswanger et al. (2007)

found heightened mortality risks among those recently released from incarceration in comparison

to the general population. Research has also shown that for each year of incarceration served, an

individuals life expectancy may be reduced by an average of 2 years (Patterson 2013).

Relatedly, there is evidence that indicates that prisoners are aging on average 10 years faster than

their community dwelling peers (Aday 2003; Dawes 2002; Chodos et al. 2014; Loeb et al. 2008).

Aging Prisoners
We not only know from the literature that incarceration is tied to a host of negative health

outcomes, but that our prisoner population is now aging (Aday 2003). Between 2000 and 2013,

the percentage of male prisoners at least 55 years of age more than tripled and by yearend 2013,

18 percent of the total male prisoner population was 55 years of age or older (Carson 2014). An

aging prisoner population carries with it a variety of challenges. For one, prisoners are at risk for

a variety of health related problems, as outlined above. Coupled with the declines in health and

increases in morbidity that are associated with aging in general (Adams and White 2004), older

inmates are likely to face a host of health issues at earlier ages than their peers living in the

community (Aday 2003; Dawes 2002). In addition, many would agree that prison is a high stress

environment. Since age and stress have been shown to have an interactive effect on the immune

56
system (see Graham et al. 2006; Patterson 2013), this places older inmates at increased risk for a

variety of poor health outcomes tied to weakened immunity.

Given their health risks, as well as the fact that prisons were never built to accommodate

the needs of geriatric populations, it is not surprising that older prisoners cost approximately 3

times as much to incarcerate as younger prisoners, which places significant financial strains on

the correctional system (Aday 2003; Chettiar et al. 2012; Williams et al. 2012). Additionally,

since many prisoners will eventually be released to re-join society, the financial costs to

communities will be significant if those individuals leave prisons sicker and more

disenfranchised (Schnittker et al. 2015). The costs of housing so many geriatric inmates

transcend these financial implications, however. Given their already disadvantaged statuses,

inequalities will become even further exacerbated if prisoners are not given adequate

opportunities to monitor and protect their health during incarceration.

While research has documented a host of deleterious health outcomes associated with

incarceration, as well as the rise in older prisoners, there remains a lack of attention to the

identification of factors embedded within the prison structure that worsen the health of inmates.

Identifying these factors and their ties to prisoner health is important, because doing may shed

light on interventions that can help reduce collateral health consequences during incarceration so

that inmates can age with less morbidity. Using the framework of stress proliferation theory, this

paper contributes to the literature by exploring how several stressors relevant to the structure of

prison living are associated with the health of older inmates.

57
Incarceration and Stress Proliferation Theory
For a variety of reasons, incarceration can be conceptualized as a stressful life event.

Prisoners are stripped of their prior statuses (Goffman 1963) and deprived of personal control,

prior relationships, and previously enjoyed goods and services (Sykes 1958). The lives of

prisoners are also heavily structured by coercion (Colvin 1992). We know from stress

proliferation theory, however, that the stress process is more complicated than the occurrence of

a single event such as incarceration. In particular, stress proliferation theory emphasizes the

importance of casting a wider net by considering both primary and secondary stressors when

examining the impacts of stress on the body (Pearlin 1989: 248).

Primary and secondary stressors refer mainly to an ordering of events. Primary stressors

occur first and secondary stressors occur later as a result of being exposed to the primary

stressor(s) (Pearlin 1989). Health research has shown that taking on caregiving responsibilities

(a primary stressor) may later lead to problems at work (a secondary stressor) (Pearlin et al.

1997). In corrections, a primary stressor may be incarceration, while a secondary stressor may

be increased exposure to conflicts with others due to living conditions that involve high levels of

stress, very close living quarters, and normative anti-social attitudes and beliefs among the

population of inmates. In this way, stress proliferation theory offers a helpful framework for

understanding how people touched by incarceration come to live with chronic strain by

becoming exposed to a clustering of stressors or cumulative adversity over time (Pearlin 1989:

248).

Researchers have documented a host of secondary stressors that occur following

incarceration. For example, using data from the National Longitudinal Study of Adolescent

Health, Porter (2014) showed how exposure to incarceration impacts physical health over time,

58
as formerly incarcerated individuals in their sample were more likely to consume fast food and

engage in smoking than their never-incarcerated peers, in part because of the emergence of

secondary stressors such as increased financial strife and diminished social standing. Using data

from the Fragile Families and Child Wellbeing Study, Turney et al. (2012) showed how exposure

to incarceration can impact mental health, as those currently and recently incarcerated were at

increased risk for major depression, operating through secondary stressors involved with

socioeconomic status and parenting. Likewise, Pager (2003, 2007) demonstrated how

incarceration leads to the secondary stressor of unemployment, particularly for formerly

incarcerated black men who face an added secondary stressor: racial discrimination. Researchers

have also found that incarceration is a potent risk factor for relationship dissolution, due at least

in part to the reduction of quality time spent together because of the incarceration sentence

(Massoglia et al. 2011; Turney 2015).

Inmates exposure to primary and secondary stressors is important because there is a

solid line of research that documents a link between chronic stress and an array of negative

health outcomes in community settings. For example, chronic stress is associated with poorer

oral health (Finlayson et al. 2010), increases in body mass index (Block et al. 2009), lower

cancer survival rates (Chida et al. 2008), increases in systolic blood pressure and heart problems

(Landsbergis et al. 2003; Aboa-Eboule et al. 2007), and higher mortality (Nielsen et al. 2008;

Chida et al. 2008). Chronic stressors are also strongly tied to depressive symptoms, another

indicator of poor health (see Pearlin et al. 1981; Turner et al. 1995; Turner and Lloyd 1999;

Turner and Avison 2003; Buyck et al. 2011; Lunau et al. 2013).

As outlined above, it is clear that stress negatively impacts the body. The literature has

also called attention to the salience of incarceration as a primary stressor, as well as the

59
implications of many secondary stressors being associated with incarceration. Yet, the literature

lacks an examination of how certain components of prison life, because of their potential to act

as secondary stressors, may be associated with prisoner health. Below, unemployment, social

isolation, and level of exposure to deprivation are explored as secondary stressors. Their

connection to the health ratings of a sample of older prisoners is then empirically tested.

Unemployment
We know from the literature that unemployment is a stressor that has strong ties to health

in community populations (see Wanberg 2012). For example, Linn et al. (1985) conducted a

study in which a group of 300 men were assessed on a variety of health related outcomes every 6

months. Despite the fact that the men had a similar number of health problems, those who were

unemployed made significantly more appointments to see their doctors, spent more days in bed

due to illness, and took more medications than those who were employed. McKee-Ryan et al.

(2005) reported similar findings in their meta-analysis of 104 empirical studies, as those who

were unemployed had reduced physical well-being in comparison to their employed peers.

Those facing unemployment are also at risk for lower self-reported health ratings (Fiorillo and

Sabatini 2011), reduced psychological well-being (Paul and Moser 2009; Artazcoz et al. 2004;

McKee-Ryan et al. 2005; Pharr et al. 2012) and suicide (Voss et al. 2004; Garacy and Vagero

2013).

Research investigating the potential association between unemployment and health for

inmates is sparse. However, we know from qualitative work that underemployment is a problem

in prisons. For example, deViggiani (2007) found that prisoners in his sample had a number of

concerns regarding the levels of underemployment they faced, including idleness and boredom.

The unequal distribution of employment opportunities and pay also created to a hostile climate

60
within the prison. Loeb, Steffensmeier, and Kassab (2011), in their analysis of a sample of older

prisoners, found that prisoners who reported being either unemployed or employed only part-

time immediately preceding incarceration were more likely to report worse health than prisoners

who reported full time employment.

In the prison environment in particular, employment offers a way for inmates to avoid

boredom, isolation, excessive sedentary periods, and experience a greater sense of control over

ones life. Since jobs are not available to everyone in prison, yet benefits such as commissary

items and phone calls require purchasing power for use, it is likely that employment is associated

with status in prison and we know that perceived social standing or status is highly predictive of

health outcomes in both prison (Friestad 2010) and community settings (Marmot 2005). Given

what we know about unemployment as a stressor and its impacts on health in community

populations, in addition to preliminary work with samples of prisoners, it is likely that prisoners

who are unemployed will report worse health ratings in comparison to prisoners who are

employed.

Social Isolation
Social isolation is another stressor that is recognized in the literature as having strong

connections to health among community samples, particularly among the elderly (see Tomaka,

Thompson, and Palacios 2006; Sintonen and Pehkonen 2014). Heffner et al. (2011) found that of

the 2,321 adults in their sample, the most socially isolated individuals had more than twice the

odds of suffering from coronary heart disease deaths in comparison to the most socially

integrated individuals, while Locher et al. (2005) concluded that adults in their sample with more

indicators of social isolation were at increased risk for nutritional problems. Pantell et al. (2013)

documented complimentary findings, concluding that among the nearly 17,000 adults in their

61
nationally representative sample, social isolation was highly predictive of mortality.

Specifically, individuals who were socially isolated had increased risks of death in comparison to

those who were less socially isolated and these rates were similar to several well-established

clinical risk factors, including smoking.

There are a variety of ways to capture social isolation, including number of social

contacts, participation in organizations and activities, and living arrangements. One of the

individual factors used to measure social isolation in Pantell et al.s (2013) study was frequency

of participation in religious services. Specifically, those who participated less frequently in

religious services had higher risks of mortality than those who participated more. Other studies

utilizing community populations report similar findings (see Oman and Reed 1998).

In prison settings, we know very little about how lack of participation in religious

services may act as a catalyst for social isolation that has implications in regards to prisoner

health. However, we do know that incarceration is isolating and there are few opportunities for

quality social interaction (Sykes 1958). Given these circumstances, religious group participation

is one of few opportunities inmates have on a predictable basis for social interaction, especially

as the security level of the institution increases. This means that those who do not participate in

religious services are likely to be more socially isolated than those who do. It is clear from the

literature that religion and spirituality are important coping mechanisms in prison settings and

can be predictive of mental health (Eytan 2011; Allen et al. 2013; Clear and Sumter 2002).

Given what we know in the literature with community samples about the health

implications of religious group participation, as well as the potential religious group participation

has to influence health in prison settings, it is likely that inmates who do not participate in

62
religious services during incarceration will report worse health ratings than inmates who do

participate because inmates who do not participate will be more socially isolated.

Another way to measure social isolation is by looking at the availability of social support

that respondents have. This measure is a well-established predictor of health in community

populations (Holt-Lunstad et al. 2010). Research has consistently documented that those with

less social support are at increased risk for a variety of negative health outcomes in comparison

to those with more social support, including lower health ratings (White et al. 2009; Richmond et

al. 2007; Melchoir et al. 2003; Montross et al. 2006), poorer cognitive aging (Seeman et al.

2001), and increased morbidity and mortality (Cacioppo and Cacioppo 2014; House et al. 1988).

Thus, being without social support is a major stressor that has serious implications for ones

health.

Given the context of incarceration, in which inmates become severed from prior

established connections to friends and family (Comfort 2008; Sykes 1958), inmates are

particularly at risk of exposure to a lack of availability of social support as a form of social

isolation. For example, Duwe and Clark (2011), in their sample of over 16,000 felony offenders,

39 percent received no visits during incarceration. Incarcerated men are at particular risk of

social isolation via poor social support, as men tend to receive fewer visits, phone calls, and

letters during incarceration than incarcerated women (Jiang and Winfree 2006).

In corrections, the literature shows clear detriments when inmates have poor social

support. Weak social support is tied to higher recidivism rates, prison violence, and escapes

(Spieldnes et al. 2012; Duwe and Johnson 2016; Colvin 2007; Colvin 1992). Yet, we know very

little about how social support for inmates may be associated with their health. Given what we

know from research in community settings about the link between social support and health, in

63
combination with the likely amplification of this stressor due to the context of the prison

environment, it is likely that inmates who do not have social support will report worse health

ratings than inmates who do have social support. In this study, social support is operationalized

as whether or not prisoners have visits with loved ones.

Deprivation
Prisoners face a range of stressors specific to the incarceration experience itself and

research has shown that the extent of these stressors, known more formally as deprivations, have

important impacts on health and well-being. For example, Johnson-Listwan et al. (2010)

demonstrated that inmates in their sample who experienced more coercion, via perceiving the

prison environment as threatening and hostile, witnessing victimization, and other such factors,

were more likely to report symptoms of trauma such as sleep disturbance and sexual problems.

Slotboom et al. (2011) reported similar findings by showing that inmates who felt disrespected

by prison staff or excluded by other inmates were more likely to experience depressive

symptoms and self-harm, even after controlling for prior mental health problems. Researchers

have also documented the negative effects of deprivation factors like loss of privacy and

overcrowding on reduced self-esteem and self-efficacy (deViggiani 2007), anxiety (Marshall et

al. 2000), and suicide (Wolff et al. 2016; Huey and McNulty 2005; Dye 2010).

Despite clear links being made between deprivation and psychological well-being,

researchers have yet to explore the potential influence of deprivation on overall ratings of inmate

health. Given what we know from the literature about the damaging effects of deprivation, it is

likely that inmates who are more exposed to depriving aspects of the prison experience will

report worse health than inmates who are less exposed to depriving aspects of the prison

experience.

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Methodology

Hypotheses
Using self-reported health ratings as the outcome of interest, three specific hypotheses

pertinent to the literature reviewed above are tested. The first hypothesis (H1) is that inmates

who are unemployed will be more likely to report worse health than inmates who are not

employed. The second hypothesis (H2) is that inmates who are more socially isolated, via (a)

not participating in religious services and (b) not receiving visits from loved ones, will be more

likely to report worse health than inmates who are less socially isolated. The third and final

hypothesis (H3) is that inmates who experience higher levels of exposure to the deprivations of

incarceration will be more likely to report worse health than inmates who experience lower

levels of exposure to the deprivations of incarceration.

Setting and Participants

This study was approved by the Kent State University institutional review board as well

as the Research Review Committee within the state Department of Corrections (DOC) that

collaborated on the project. Participants were recruited from three mens State Correctional

Institutions (SCIs) within one state in the northeastern United States. The three SCIs were

stratified by security level: SCI 1 is a medium security facility; SCI 2 is a minimum security

facility; and SCI 3 is a super maximum security facility. A total of 5,504 adult men were housed

across the three facilities at the time of data collection (October 2013 to November 2014).

Inclusion criteria dictated that participants had to be at least 50 years of age, as this is the

most common lower limit age criterion used in studies of older inmates health (see Loeb and

AbuDagga 2006). Participants were also required to be English speaking because funding for a

65
translator was not available. Participants were excluded from sampling if they: (a) had a

sentence of death; (b) had an IQ score that fell 2 standard deviations below the mean; and (c) had

a mental health classification within the state DOC that indicated (1) the respondent had a mental

health history and required significant monitoring by the Psychiatric Review Team AND (2) the

respondent was currently receiving treatment for a substantial disturbance of thought or mood

which significantly impaired judgement, behavior, capacity to recognize reality, or cope with the

ordinary demands of life. The IQ score and mental health classification parameters were set so

as to exclude any participants who had cognitive or mental health impairment severe enough to

potentially hinder their abilities to provide informed consent. The Research Review Committee

chairperson at the DOC provided a computer-generated listing of all eligible prisoners for

recruitment. Of the 5,504 men housed across the three facilities at the time of the study, 1,270

were at least 50 years of age and 1,158 met recruitment criteria.

Procedures
Data were gathered in three phases. At each SCI, the researcher began by visiting the

institution several weeks prior to data collection for pre-recruitment. During this visit, the

researcher accompanied religious staff throughout the day as they led worship services. Prior to

each scheduled worship service, staff allowed the researcher to briefly introduce the project to

any prisoners who were in attendance and explain to prisoners that they may be getting a letter in

the coming weeks inviting them to participate. Attending prisoners were also permitted to ask

questions about the project. In an attempt to reach as many potential participants as possible, the

researcher attended a range of denominational worship services, including Protestant, Catholic,

Islam, Native American, and Jehovahs Witness services. In total, the researcher had contact

with approximately 215 prisoners across the three SCIs at religious services during this phase.

66
The intention of attending these services was not to recruit directly from the pool of attendees,

but to use religious services as a forum to spread interest about the research throughout the

prison. A powerpoint slide explaining the study was also placed on the rotation for the inmate

run television channel at this time.

After the pre-recruitment phase, the researcher created recruitment letters using the

computer-generated list of eligible prisoners that the Research Review Committee chairperson at

the DOC provided. These letters were personally addressed to each eligible respondent and

placed in each prisoners respective mail drawer. Within the letter, recruits were informed of the

studys purpose and told that participation was completely voluntary. The letter also explained

that choosing or not choosing to participate would have no impact on their parole status or

privileges at the institution. If after reading the letter prisoners wished to participate, they were

instructed to write a note to the point of contact the researcher had identified at the SCI (the

superintendents acting assistant) explaining that they wished to participate and would like to be

scheduled for an interview with the researcher.

The superintendents assistant then compiled a list of those prisoners who submitted

letters and scheduled call-out lists for each day the researcher would be conducting interviews.

The researcher consistently visited the SCI anywhere from 2-4 days per week until the list of

prisoners who expressed a desire to participate had been exhausted. Prior to participating in the

interview each potential respondent was given an informed consent document by the researcher,

which explained the studys purpose, the voluntary nature of the study, and what the respondent

would be asked to do. Before signing the informed consent document, the researcher walked

through all components of the document and made sure the respondent understood each item and

had the opportunity to ask questions. Upon signing the informed consent document, the

67
researcher conducted a survey-led interview with the respondent. On average, interviews lasted

about 50 minutes. All interviews were conducted one on one between the researcher and the

respondent in either the no-contact visiting area or at a table inside the general population

visitation room.

Each completed interview document was handled by the researcher and the researcher

only and all information collected was kept confidential. At no point in time did any SCI or

DOC staff have access to completed surveys. In total, 1,158 prisoners were asked to participate

across the three SCIs, 374 submitted notes expressing interest in participating, and 279

completed interviews. Those who submitted notes but ultimately did not participate (n = 95)

were either scheduled to work on the day of the interview and did not want to miss their shift,

were too ill to attend, or changed their mind. As a supplement to the quantitative survey data,

qualitative notes were gathered during interviews as well.

Tables 7 and 8 show key descriptives and frequency distributions for those who

participated in the research. Respondents were an average of 58 years old and 49 percent (n =

137) had completed high school or obtained a GED. At the time of interviews, respondents had

served an average of 164 months (13.6 years) for their current offense(s) and 24 percent (n = 68)

were serving life sentences. Sixty-one percent of the final sample was white (n = 168) and 39

percent was black (n = 107). The majority of respondents were divorced (n = 111) or never

married (n = 100), with only 18 percent (n = 51) being married. Eighty percent of respondents

were incarcerated at either the super-maximum (n = 113) or medium security (n = 112) state

correctional institution, while 20 percent were incarcerated at the minimum security institution (n

= 54). The majority of respondents (77 percent) were also incarcerated for crimes of violence.

68
Measures and Materials
Interview questions were prompted with a 35-item survey instrument developed by the

researcher in consultation with the literature. The interview gathered information about a range

of factors designed to answer questions for a larger project regarding inmates experiences with

incarceration and health care. Data collected included demographic information, sentencing

information, experience with incarceration, current health, religiosity, trust in prison staff and the

prison health care system, extent of social support among family and friends, death distress,

expectations regarding aging, perceptions regarding deprivation, and desire for various medical

treatments across several hypothetical illness scenarios. The specific measures that are the focus

of this study are explained more fully below.

Self-Rated Health: During interviews, respondents were asked to describe their current

health status as either poor, fair, good, or excellent. For analyses, poor and fair

were combined and coded as 1 to represent worse health, and good and excellent were

combined and coded as 0 to represent better health. Self-reported health ratings have been

69
70
collapsed in this manner in other studies in order to make health ratings more meaningful during

analysis (see Chantelle et al. 2007; Carr 2012; Carr 2012b; Luth 2016).

Age: Age was measured by asking respondents to report their age at the time of interview.

Responses ranged from 50 to 78 years.

Race: Respondents were asked to select one or more racial categories to describe

themselves, including American Indian or Alaskan Native, Asian, Native American or

Other Pacific Islander, Black or African American, and White. However, 98% of

respondents (N = 275) selected either Black or African American, or White. For the sake of

coding and maintaining large enough numbers in each category to perform the analyses, the four

respondents who selected other categories were excluded from the analyses. For the analyses,

0 was coded as Black and 1 was coded as White.

Time Served: Time served was measured by asking respondents to report how long they

had been incarcerated for their most recent conviction. To increase accuracy, this information

was recorded in months rather than years. Responses ranged from 7 months (less than a year) to

576 months (48 years).

Education: Education was measured by asking respondents to report the highest grade

they had completed in school, with responses ranging from 8th grade or less to college

degree. For the analyses, the original 7 response options were categorized and collapsed into 3:

1 = 11th grade or less, 2 = 12th grade or GED, and 3 = some college and beyond.

Unemployment: Unemployment was measured by classification information provided for

each inmate during scheduled interviews. Respondents either had a current job assignment listed

71
or were classified as presently unemployed. For the analyses, 1 was coded as unemployed and

0 was coded as employed.

Social Isolation No Religious Group Attendance: Religious group attendance was

measured by asking respondents whether or not they attended religious services at the prison.

For the analyses, 1 was coded as does not attend services and 0 was coded as attends

services.

Social Isolation No Visits: Inmate visitation was measured by asking respondents how

frequently they were visited by friends or family in an average month. For the analyses,

responses were coded as 1 for respondents who reported no visits and 0 for respondents who

reported at least 1 visit per month.

Deprivation: To measure inmates perceptions of deprivation while incarcerated,

respondents were asked to complete the Deprivation Scale (Rocheleau 2013). The Deprivation

Scale was administered by asking inmates to respond to 19 statements about difficulties they

have experienced while incarcerated (i.e, conflicts with other prisoners, conflicts with staff,

concerns about my safety, overcrowding, etc.) with a number from a likert scale (1 = this

has not been difficult at all for me,2.3.4....5 = this has been very difficult for me). At

the end of the scale, all 19 item ratings were summed. Summed scores on the Deprivation Scale

range from 19 to 95, with lower scores indicating a low level of exposure to deprivation or

hardships associated with incarceration and higher scores indicating a high level of exposure to

deprivation or hardships associated with incarceration.

Data were coded as described above. Given that the dependent variable (self-rated

health) has a dichotomous outcome (1 = worse health; 0 = better health), binary logistic

regression was employed for hypothesis testing.

72
Results
Results of the binary logistic regression model are displayed in Table 9. The full model

predicting worse health ratings among inmates included unemployment, no attendance at

religious groups, no visits with loved ones, and level of exposure to deprivation. After

controlling for age, race, time served, and education, this model was significant and two of the

individual predictors had a significant association with inmate health. As predicted, there is a

statistically significant, positive relationship between respondents ratings of their health and

unemployment ( = .849; p < .01; OR = 2.337). Specifically, the model predicts that the odds of

reporting worse health are increased by a multiplicative factor of 2.337 for unemployed inmates.

Table 9. Binary Logistic Regression: Log Odds of Inmates Reporting Worse Health Ratings (N = 269)

Model 1 Model 2
O.R. SE O.R. SE
Controls
Age 0.023 0.978 0.020 0.061 1.062 ** 0.023
Black - 0.106 1.112 0.268 - 0.024 0.976 0.297
Time Served (in months) 0.000 1.000 0.001 - 0.001 0.999 0.001
Education (less than H.S./GED) 0.318 1.375 0.356 0.434 1.544 0.402
Education (H.S./GED) 0.440 1.553 0.290 0.676 1.966 * 0.320
Predictors
Unemployment 0.849 2.337 ** 0.288
No Religious Group Attendance 0.119 1.126 0.281
No Visits 0.299 1.348 0.275
Deprivation 0.069 1.072 *** 0.013
Intercept - 1.646 - 8.238
Model Chi-Square 3.692 52.919
-2LL 369.128 319.901
Nagelkerke R Square 0.018 0.238
***p.001, **p.01, *p.05

Also as predicted, there is a significant, positive relationship between respondents

ratings of their health and exposure to deprivation ( = .069; p < .001; OR = 1.072). This model

predicts that the odds of reporting worse health are increased by a multiplicative factor of 1.072

73
for each increase on the deprivation scale. It is important to note that the social isolation

measures (lack of religious group attendance and lack of visits with loved ones) failed to produce

statistically significant associations with respondents ratings of their health. Implications

regarding these findings are discussed in detail below.

Discussion

We know from the literature that incarceration is associated with a multitude of collateral

consequences and deleterious health outcomes are amongst those consequences. However, we

know very little about how stressors specific to prison life are tied to the health of older inmates.

This is important, as our prisoner population is graying. With nearly 1 in 5 male prisoners now

being at least 55 years of age (Carson 2014), we can expect that a significant number of prisoners

in the United States will approach old age during incarceration.

Findings demonstrate that at least two elements of the incarceration experience inmate

employment and level of exposure to the deprivations characteristic of imprisonment are

related to worse reported health ratings among older, incarcerated men. The fact that

unemployed inmates were more than twice as likely to report worse health as employed inmates

provides support for existing research which identifies unemployment as a stressor that has

powerful ties to health in community settings (Wanberg 2012; Garacy and Vagero 2013; Pharr et

al. 2012; Paul and Moser 2009; McKee-Ryan et al. 2005; Artazcoz et al. 2004; Voss et al. 2004;

Linn et al. 1985).

It is likely that the strains of unemployment are exacerbated in the prison environment, as

many protective factors that are readily available in the community, such as social support, are

74
stripped from the individual upon entering prison (Sykes 1958; Comfort 2008). Additionally, we

know that perceived social standing is predictive of health among prisoners (Friestad 2010).

Living within an incredibly depriving environment, obtaining a job is one option that can help

inmates enhance their social standing, as doing so allows them to pay for commissary items and

phone calls with their friends and family members. Specifically related to health, inmates with

jobs can more easily afford to make medical appointments when they are sick, as the department

of corrections now requires a $5 fee for each medical appointment and a $5 fee for each

medication. Thus, inmates who have opportunities to work may enhance opportunities for aging

successfully by increasing their perceived social standing and increasing their ability to pay for

their medical needs. Qualitative data that were collected during the study support this

conclusion, particularly because some inmates reported that they would intentionally forgo

medical appointments and medications when sick due to their inability to afford them, which was

a major source of stress for them.

Prisoners in this study were also at significantly increased odds of reporting worse health

as level of exposure to deprivation increased. This finding offers support to an emergent area of

work that has started to identify a range of consequences that depriving aspects of incarceration

lead to, including increased recidivism rates (Johnson-Listwan et al. 2013), diminished

psychological well-being (Johnson-Listwan et al. 2010; Slotboom et al. 2011; Marshall et al.

2000), increases in rule violations and violence (Rocheleau 2013), and increases in suicide

(Wolff et al. 2016; Huey and McNulty 2005; Dye 2010). Findings in this study contribute by

concluding that perceived exposure to a range of incarceration-specific deprivations or stressors

is related to prisoners ratings of their health. This is the case because inmates who reported

75
more extensive exposure to depriving elements of the prison environment were at significantly

increased odds of reporting worse health.

Although support was found for hypotheses 1 and 3, support was not found for

hypothesis 2. I predicted that prisoners who were more socially isolated would be at increased

odds of reporting worse health. However, the data did not support this prediction, as inmates

who did not attend religious services, as well as inmates who did not have visits with loved ones,

were not at increased odds of reporting worse health. These findings may be the result of

measures that do not fully capture the meaning of social isolation. Specifically, the measures at

hand captured whether or not respondents attended religious services and whether or not

respondents had visits with friends and family rather than capturing the quality of religious group

participation and the quality of respondents relationships with friends and family. There is

research in community samples that indicates that satisfaction with relationships is more

predictive of health than the number of physical meetings someone has with friends and family,

for example (see Fiorillo and Sabatini 2011).

The null finding regarding social isolation may also provide support for stigma as a

fundamental cause of disease (Hatzenbuehlet, Plelan and Link 2013). Specifically, for inmates

who have committed crimes of violence in particular, as most of the men in this sample did,

interacting with friends and family may not offer the typical dose of health protection normally

associated with social support. It is possible that while not seeing loved ones is a major stressor,

it is also a stressor to see loved ones if seeing them is a reminder of the stigma attached to their

crimes. It will be important for future researchers to collect additional measures of inmate

visitation, such as the quality of visits and the quality of relationships with friends and family, as

well as additional measures of inmate participation with religious services that incorporate

76
quality in order to tease this out further. More qualitative data is also needed to help untangle on

whom exactly older men rely for social support while incarcerated. Given the divisive and

isolating features of incarceration, social support may be more potent coming from sources

within the prison environment rather than coming from sources external to the prison

environment. For example, inmates may be relying more heavily on each other for social

support than family members.

This study has limitations. Since convenience sampling was used, selection bias cannot

be ruled out. It is possible that men who participated do not actually represent the average

experience of older incarcerated men within the state department of corrections at hand. Yet,

because inmates were interviewed across 3 different, varying security level state correctional

institutions, this is unlikely. Another limitation is that the sample consists entirely of black and

white men, which means other racial groups, as well as women, were excluded. This is

especially problematic in regards to Hispanic men, as they make up a considerable portion of

todays prisoner population (Carson 2014). Future researchers will need to make concerted

efforts to include this group in particular. Finally, since the data from this study were taken from

one point in time only, time ordering cannot be established. As such, results must be seen as

association specific rather than causal at this time, offering a starting point for future research to

depart from.

Despite these limitations, this study offers important and new contributions to the

literature. The costs of so many adults aging in our correctional facilities are extensive. Older

inmates cost significantly more to incarcerate, which places tremendous strain on already

burdened correctional budgets (Aday 2003; Chettiar et al. 2012; Williams et al. 2012). In

addition, upon their release those costs will eventually be passed along to communities and

77
families (see Schnittker et al. 2015). Although incarceration is targeted towards punishment, we

must also remember that punishment must stay within the parameters of providing access to

basic human rights such as opportunities to maintain health. Thus, it is beneficial for a variety

of reasons to identify opportunities for prisoners to age as successfully as possible while

incarcerated.

Conclusion

Results of this study, although preliminary, offer promise that there are opportunities

available within a correctional policy framework for prisoners to improve their health while not

interfering with the goals of punishment or security. For example, increasing the number of

available jobs for inmates could not only help improve inmate health, but offer additional

benefits such as inmates learning a trade and having increased opportunities to practice prosocial

skills and responsibility. If the number of paid positions cannot be increased, creating more

opportunities for volunteer work is another option. Here, inmates could volunteer their time and

earn credits within the institution that they could use to earn privileges like phone calls. Among

other benefits, research has shown promise that giving to others can help reduce mortality

(Poulin et al. 2013).

It will also be important for correctional administrators to pursue opportunities to reduce

the perceived deprivations associated with incarceration for inmates. Although certain

incarceration-specific deprivations are unavoidable, such as loss of freedom, others can be

alleviated if efforts are made to incorporate promising programming ideas. For example,

policies that improve communication between managers and correctional officers can help

reduce correctional officer stress and burnout (Finney et al. 2013), which may in turn offer a

78
reduction in the number of conflicts between inmates and staff. Likewise, increasing

employment and volunteer opportunities as described above offers potential for reducing

isolation and boredom. These policies, as well as additional hypothesis testing focused on

identifying other aspects of prison life that may have an impact on the health of inmates, are

future directions that will be vital to pursue.

79
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 CHAPTER 4

IF YOU DONT KNOW, THEY TREAT YOU LIKE YOU DONT KNOW:
CHRONIC DISEASE MANAGEMENT AND THE ROLE OF CULTURAL HEALTH
CAPITAL FOR OLDER INMATES

Introduction
Nearly 1.6 million men and women are currently incarcerated in federal and state prions

throughout the U.S. (Carson 2014) and for nearly four decades the U.S. has heavily relied upon

incarceration to address its crime problem. This dependence on incarceration is unique in

comparison to other countries, as the U.S. leads the world in incarceration rates (International

Centre for Prison Studies 2015). Problems associated with high incarceration rates, such as

overcrowding and violence, have burdened correctional facilities for years. Yet, these well-

documented problems are now being met with another issue that requires attention: an aging

prisoner population with significant health problems (Aday 2003; Chettiar, Bunting and Schotter

2012).

Over the last couple of decades the elderly prisoner population has grown tremendously

and this population is currently the fastest growing age group within our prison system (Aday

2003). This alone is cause for concern, as aging is associated with declining health and increased

morbidity in general (Adams and White 2004).

94
 However, due to a variety of factors, prison administrators must be prepared to address

declining health among its population earlier in the life course than administrators in community

health settings. Prisoners have been hypothesized to experience accelerated physiological aging,

for example, which means that their health may decline up to 10 years earlier than their

community dwelling peers (Aday 2003; Dawes 2002). Additionally, older prisoners are

significantly more likely to have a disability or chronic health condition than those residing in

the community (Dawes 2002; Aday 2003; Binswanger, Krueger and Steiner 2009) and many

older inmates report declines in health since incarceration (Loeb, Steffensmeier and Kassab

2011).

Given the continued reliance on mass incarceration as a social control strategy, the aging

of the prisoner population, and the generally poor health of prisoners as a group, it is imperative

that efforts are made to examine health related issues for older, incarcerated adults. Mitka (2004:

423), explained the pressing nature of the problem by stating, its clear that the [prison] system

is on the verge of a health care crisis. One aspect of health that is especially important to

address among this population is chronic disease management. Expanding upon the theory of

cultural health capital (Shim 2010), this paper attempts to understand what specific health

promotion strategies are available to and utilized by older inmates to help them manage chronic

disease within the constraints of the prison environment.

Review of Related Literature

The Aging Prisoner Population

According to the Bureau of Justice Statistics, 1 in every 110 U.S. adults are currently

serving time in either jails or prisons across the country (Glaze and Kaeble 2014). With

95
approximately 1.6 million men and women incarcerated in state and federal prisons throughout

the U.S. (Carson 2014), it is clear that incarceration is a lived reality for a significant portion of

Americans today and this has been the case since the 1970s (Austin and Irwin 2000; Garland

2001). Relying on incarceration as a social control mechanism for such a long period of time

carries with it certain problems. One such problem is the fact that the prisoner population is now

aging.

In fact, the elderly prisoner population represents the fastest growing age group within

our prison system today (Aday 2003). For example, the percentage of prisoners 55 years of age

and up incarcerated at state or federal institutions more than tripled between 2000 and 2013

(Carson 2014). Given the U.S. Census Bureaus estimates that nearly 20 percent of the

population will be at least 65 years old by 2050 (Vincent and Velkhoff 2010), it is likely that the

elderly prisoner population will continue to expand in the coming years. This is problematic for

a variety of reasons, not least of which is the fact that that prisons were not originally constructed

or designed with the geriatric prisoner in mind. Older adults tend to be more sensitive to changes

in temperatures, for example, yet prisons are typically ill equipped to meet such needs (Reimer

2008). Bunk beds are also frequently used for sleeping arrangements in prisons, which creates

accessibility issues for older inmates who have a hard time climbing as well as for those who

have certain medical conditions, such as epilepsy.

In general, prisons are also poor environments for establishing and maintaining good

health. Research has shown that an individual can expect to lose an average of 2 years of life for

every year of incarceration served, for example (Patterson 2013). Stress related illnesses and

infectious diseases are more likely to be contracted by prisoners than those living in the

community (Massoglia 2008), as are mental (Schnittker, Massoglia and Uggen 2012), and

96
chronic illnesses (Aday 2006; Aday 2003; Loeb, Steffensmeier and Kassab 2011; Wilper et al.

2009). Some researchers have even hypothesized that prisoners physiologically age

approximately 10 years faster than their peers living in the community (Aday 2003; Dawes

2002). In short, the negative impacts of incarceration on health are significant and have been

shown to persist throughout the life course and after release (London and Myers 2006; Schnittker

and John 2007). These circumstances highlight how important it is for prison administrators to

be prepared to address chronic diseases among inmates at earlier stages in the life course.

Chronic Disease Management

Over the last decade researchers have documented the prevalence of chronic health

conditions among prisoners. For example, prisoners have been shown to have rates of Hepatitis

C Virus up to 20 times the rates of their community dwelling counterparts (Binswanger, Krueger

and Steiner 2009; Macalino et al. 2004), while HIV rates among prisoners have been

documented to be 2 to 5 times the rates of non-incarcerated samples (Wilper et al. 2009; Okie

2007). Prisoners have also been shown to have increased odds of arthritis, asthma, and

hypertension compared to their non-incarcerated peers (Binswanger, Krueger and Steiner 2009).

Mortality rates among those who have experienced incarceration are also heightened when

considering substance use, HIV, liver disease, liver cancer, and conditions related to smoking

such as lung cancer and ischemic heart disease (Rosen, Schoenback and Wohl 2008; Binswanger

et al. 2014).

The accelerated physiological aging hypothesis asserts that prisoners can be expected to

age an average of 10 years faster than their community dwelling peers, which means that older

may be defined as early as 50 for incarcerated samples (Aday 2003; Dawes 2002; Loeb and

AbuDagga 2006). Empirical support has been found for this hypothesis. For example, inmates in
97
one sample, who had a mean age of 59 years, reported rates of chronic lung disease and recent

falls that were tantamount to community dwelling adults who were an average of 71 years of age

(Chodos et al. 2014). In another study, Loeb et al. (2008) found that the prisoners in their sample

reported health that was comparable to community populations of adults 15 years their senior. In

short, prisoners 50 years of age and up are particularly vulnerable to chronic disease and in

general can be expected to suffer from 2 to 3 chronic health conditions on average at any given

time, making co-morbidity quite common among this group (Aday 2003; Loeb and Steffensmeir

2006; Harzke et al. 2010).

The aforementioned body of work demonstrates that prisoners, and in particular older

prisoners, have significant health needs and are generally not a healthy group. Despite the

documentation of this problem, weaknesses in the promotion and maintenance of health among

this group exist within the prison population. For example, Herbert, Plugge and Doll (2012)

found that sodium intake among their sample of prisoners was 2 to 3 times the recommended

daily intake amount. Additionally, among state prisoners in Wilper et al.s (2009) sample who

reported a persistent medical problem, 20 percent disclosed that they had received no medical

examination since being incarcerated. Loeb et al. (2008) also found that prisoners in their

sample participated in fewer health promotion behaviors and programs than their community

dwelling peers.

These weaknesses, in combination with the high chronic disease burden that older

prisoners endure, make it important to examine chronic disease management and health

promotion options for older inmates. However, little is known thus far about chronic disease

management and health promotion behaviors among this population. Existing literature to date

does indicate that older prisoners who have greater confidence in their abilities to manage their

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health are more likely to report improved health since being incarcerated, participate in more

health-promoting activities, and report better health overall (Loeb and Steffensmeier 2006; Loeb,

Steffensmeier, and Kassab 2011). Research has also shown that prisoners who display low

confidence in their abilities to manage their health were likely to do so due to lack of resources

or due to perceptions that prison administrators were unresponsive to their health care needs

(Loeb, Steffensmeier, and Myco 2007). Although this line of work is a promising start, there

remains a gap of knowledge regarding the management of chronic disease among older,

incarcerated adults, particularly from a qualitative perspective (see Loeb, Steffensmeier, and

Lawrence 2008) and with attention to prisons of varying security levels (see Loeb, Steffensmeier

and Myco 2007).

Chronic Disease Management and Health Capital

Pierre Bourdieu (1977) was a pioneer in explaining the importance of ones social

location in life and how this location determines access to various resources. For example, an

individual living in a wealthy suburb will have access to more prestigious schools and

educational opportunities than an individual living in a poor neighborhood in an inner city and

these opportunities will propel that person towards subsequent opportunities later in life.

Inequalities are therefore both established and perpetuated based on ones social location and

exposure to resources (Bourdieu 1977).

Bourdieu (1986) specifically termed resources capital and articulated that capital may

take three forms. Economic capital consists of income, property, and other material items.

Social capital is less tangible, but involves access to relationships that provide networking

opportunities and allow a person to link him or herself to the opportunities that others may

provide. Cultural capital, the third form of capital, involves skills or knowledge a person
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develops over time such as the ability to speak multiple languages, understand art, or discuss

food and wine competently (Bourdieu 1986). In general, the more access a person has to these

forms of capital, the more power that person will have in establishing and maintaining enhanced

life chances in comparison to those who do not have similar access.

An important point that Bourdieu makes is that having access to any of the three forms of

capital provides a cumulative effect because the three forms of capital drive one another

(Bourdieu 1986). For example, if an individual has more cultural capital, that person will also

have more social capital. Social and cultural capital in particular are important when looking at

social location because they often translate into increased (or decreased) economic capital

(Bourdieu 1986). This means that having more social and cultural capital is often associated

with having more economic capital. Bourdieu also coined the term symbolic capital, which

again highlights the cumulative effect of the three forms of capital. Symbolic capital is

accomplished when economic, social or cultural capital are converted into prestige or honor

(Bourdieu 1984). For example, a millionaire business person has economic capital due to the

income he or she has made. However, the income he or she has made may also translate into

symbolic capital if that business person is perceived as a worthy investment partner by others

due to his or her successes.

Bourdieus (1986) theory provides a useful context for understanding inequalities and has

been applied to understand a variety of them. Only in recent years, however, has the theory been

expanded to include inequalities in health. Most commonly, Bourdieus (1986) theory of capital

has been used to consider how health inequalities are perpetuated via social capital. These

applications include access to safe drinking water and sanitation (Bisung and Elliott 2014),

neighborhood environment and health (Browne-Yung, Ziersch and Baum 2013; Carpiano 2007),

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food and other health choices (Kamphuis et al. 2015; Collyer et al. 2015), and perceptions of

mental and physical health (Pinxten and Lievens 2014; Veenstra 2007).

A more under-developed extension of Bourdieus (1986) theory of capital as it relates to

health is the idea of cultural health capital. Shim (2010) introduced the term, which involves

skills and behaviors that can be used by patients or health care providers in health settings to

improve outcomes. An example of cultural health capital would involve a patients

understanding of his or her medications, what each medication targets, and what the expected

side effects might be. This knowledge acts as a resource because ultimately, communication

between the patient and his or her provider will be enhanced as a result (Shim 2010).

Researchers have started to apply this fourth form of capital specifically to better

understand health inequalities. Dubbin, Chang, and Shim (2013) utilized the cultural health

capital framework in order to explore how patient-centered care can be enhanced, for example.

One of their findings was that patients in their sample who were able to communicate their

medical problems from a biomedical framework, such as being able to identify irregularities in

ones blood pressure, were held in higher regard by providers and received more satisfying

patient-centered care.

Patients possession of cultural health capital is becoming more and more important, as

patients are expected in modern day to not merely be consumers of health care, but to advocate

for their health needs, be well informed about their conditions, follow prescribed courses of

treatment, and make important choices such as selecting an appropriate insurance provider and

coverage plan to meet their needs (Shim 2010). This means that without cultural health capital

as a resource, patients today are at a disadvantage. For example, patients who do not understand

that when a medical claim is denied by their insurance provider that they still have options are

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likely to pay much more for their medical treatment or stack up unpaid medical claims that can

damage their credit. Conversely, patients who understand that they have the option to call their

insurance provider and inquire as to why the claim was denied, for example, and then call their

doctor and discuss re-coding the treatment so that the code is consistent with ones insurance

coverage, have a distinct advantage in terms of protecting themselves from exorbitant medical

bills.

Thus far, cultural health capital has not been applied to the prison setting. Yet, cultural

health capital provides a promising framework to explain how inmates choices (or lack thereof)

regarding the management of their chronic illnesses are influenced by the prison environment.

Prisons provide a theoretically distinct environment for studying chronic disease management

because in many ways choices about health in prisons are different than choices about health in

the community. Meals are planned for inmates and inmates do not have a say in what the meals

will be or even what time they will be eating those meals, for example. Doctors are also selected

by the prison administration rather than by the receiver of care and second opinions are not

typically an option. This paper contributes to the literature by providing insight into how

inmates choices regarding the management of their health are driven by cultural health capital

and privilege, all in the context of a highly constrained prison environment.

Methodology

Research Design
This research is part of a larger study that involved face-to-face, survey-led interviews

with older incarcerated men for the purpose of understanding their experiences with

incarceration and health care. The specific focus of this paper is on the qualitative data, which

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was taken from open-ended explanations respondents gave for their survey responses as well as

anecdotal accounts respondents shared to help explain their concerns about health care. These

qualitative data were examined without a pre-conceived research question. Yet, the themes that

emerged provided a shared focus towards explaining the specific health promotion strategies that

are available to and utilized by older prisoners and how these strategies help them manage

chronic disease within the constraints of the prison environment.

Setting and Participants

This study was approved by the Kent State University institutional review board as well

as the Research Review Committee within the state Department of Corrections (DOC).

Participants were recruited from three mens State Correctional Institutions (SCIs) within one

state in the northeastern United States. The three SCIs were stratified by security level: SCI 1 is

a medium security facility; SCI 2 is a minimum security facility; and SCI 3 is a super maximum

security facility. A total of 5,504 adult men were housed across the three facilities at the time of

data collection (October 2013 to November 2014).

Inclusion criteria dictated that participants had to be at least 50 years of age, as this is the

most common lower limit age criterion used in studies of older inmates health (see Loeb and

AbuDagga 2006). Participants were also required to be English speaking because funding for a

translator was not available. Participants were excluded from sampling if they: (a) had a

sentence of death; (b) had an IQ score that fell 2 standard deviations below the mean; and (c) had

a mental health classification within the state DOC that indicated (1) the respondent had a mental

health history and required significant monitoring by the Psychiatric Review Team AND (2) the

respondent was currently receiving treatment for a substantial disturbance of thought or mood

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which significantly impaired judgement, behavior, capacity to recognize reality, or cope with the

ordinary demands of life. The IQ score and mental health classification parameters were set so

as to exclude any participants who had cognitive or mental health impairment severe enough to

potentially hinder their abilities to provide informed consent. The Research Review Committee

chairperson at the DOC provided a computer-generated listing of all eligible prisoners for

recruitment. Of the 5,504 men housed across the three facilities at the time of the study, 1,270

were at least 50 years of age and 1,158 met recruitment criteria.

Procedures
Data were gathered in three phases. At each SCI, the researcher began by visiting the

institution several weeks prior to data collection for pre-recruitment. During this visit, the

researcher accompanied religious staff throughout the day as they led worship services. Prior to

each scheduled worship service, staff allowed the researcher to briefly introduce the project to

any prisoners who were in attendance and explain to prisoners that they may be getting a letter in

the coming weeks inviting them to participate. Attending prisoners were also permitted to ask

questions about the project. In an attempt to reach as many potential participants as possible, the

researcher attended a range of denominational worship services, including Protestant, Catholic,

Islam, Native American, and Jehovahs Witness services. In total, the researcher had contact

with approximately 215 prisoners across the three SCIs at religious services during this phase.

A powerpoint slide explaining the study was also placed on the rotation for the inmate run

television channel at this time.

After the pre-recruitment phase, the researcher created recruitment letters using the

computer-generated list of eligible prisoners that the Research Review Committee chairperson at

the DOC provided. These letters were personally addressed to each eligible respondent and

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placed in each prisoners respective mail drawer. Within the letter, recruits were informed of the

studys purpose and told that participation was completely voluntary. The letter also explained

to recruits that choosing or not choosing to participate would have no impact on their parole

status or privileges at the institution. If after reading the letter prisoners wished to participate,

they were instructed to write a note to the point of contact the researcher had identified at the SCI

(the superintendents acting assistant) explaining that they wished to participate and would like

to be scheduled for an interview with the researcher.

The superintendents assistant then compiled a list of those prisoners who submitted

letters and scheduled call-out lists for each day the researcher would be conducting interviews.

The researcher visited the SCI anywhere from 2-4 days per week until the list of prisoners who

expressed a desire to participate had been exhausted. Prior to participating in the interview each

potential respondent was given an informed consent document by the researcher, which

explained the studys purpose, the voluntary nature of the study, and what the respondent would

be asked to do. Before signing the informed consent document, the researcher walked through

all components of the document and made sure the respondent understood each item and had the

opportunity to ask questions. Upon signing the informed consent document, the researcher

conducted a survey-led interview with the respondent and interviews lasted an average of 50

minutes. All interviews were conducted one on one between the researcher and the respondent

in either the no-contact visiting area or at a table inside the general population visitation room.

In addition to the quantitative survey data gathered, the researcher transcribed qualitative notes

and direct quotes on surveys throughout the interviews when respondents wanted to elaborate on

an answer or express a concern regarding their experiences with the prison health care system.

These idiographic data are the source for this project.

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 Each completed interview document was handled by the researcher and the researcher

only and all information collected was kept confidential. At no point in time did any SCI or

DOC staff have access to completed surveys. In total, 1,158 prisoners were asked to participate

across the three SCIs, 374 submitted notes expressing interest in participating, and 279

completed survey-led interviews. Those who submitted notes but ultimately did not participate

(n = 95) were either scheduled to work on the day of the interview and did not want to miss their

shift, were too ill to attend, or changed their mind. Of the 279 who completed interviews, 184

(66%) provided supplemental comments or anecdotal accounts. The transcribed notes and

quotes from these 184 interviews are the focus of this paper.

The sample of prisoners that are the focus of this paper had the following demographic

characteristics: 60.6% were White (n = 149); 39.4% (n = 97) were Black; 80.9% (n = 199) had at

least a high school diploma or equivalent; and 81.3% (n = 200) were currently single. Fifty-one

percent (n = 126) had served a prison sentence prior to the current sentence; 23.2% (n = 57) were

incarcerated for non-violent offenses; and 24.8% (n = 61) were serving sentences of life.

Respondents had served an average of 14 years for their current offenses and their mean age was

58.3 years. On average, respondents reported suffering from 3.5 chronic health conditions and

were taking an average of 3.9 medications. Eighty percent of respondents were incarcerated at

either a super-maximum (n = 104) or medium security (n = 91) state correctional institution,

while 20 percent were incarcerated at a minimum security institution (n = 51). A particularly

unique aspect of this sample is that nearly 10 percent of respondents (n = 24) were being housed

in isolation at the restricted housing unit (RHU).

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Measures and Materials
The larger survey involved 35-items, which were developed by the researcher in

consultation with the literature. The interview gathered information about a range of factors,

including the respondents age, education, race, marital status, most recent offense, number of

years incarcerated for the most recent offense, sentence length for the most recent offense,

expected parole status, religiosity, current health conditions, current number of medications, self-

rated health status, trust in prison staff and the prison health care system, extent of social support

among family and friends, death distress, expectations regarding aging, the extent of experienced

deprivation or hardships while incarcerated, and desire for various medical

treatments across several hypothetical end-of-life illness scenarios. Respondents had

opportunities throughout the survey to explain an answer in more depth or provide anecdotal

examples to make a point. At the surveys conclusion, respondents were also asked the

following less-structured questions: is there anything else you would like to add today; and do

you have any other suggestions [to help improve health care within the prison system]?

Data Analysis
Since no specific hypotheses were tested, yet the data were collected with the intention of

exploring broadly the experiences of older prisoners in regards to health care, a modified

grounded theory is utilized as the analytical technique (Cutcliffe 2005; Charmaz 2009). While

grounded theory (see Glaser and Strauss 1967) directs the researcher towards respondents

accounts fully guiding the research, modified grounded theory allows for the possibility that a

researcher allows respondents accounts to influence the research while also bearing in mind that

the data may have been collected with a broad research question in mind (i.e., what are the

health care related experiences of older prisoners?) (see Cutcliffe 2005). Data were first

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transcribed in Microsoft Word, which produced over 200 pages of text. Data were then coded

using the qualitative data analysis program QSR NVivo v.10.

Open coding was performed initially to identify emerging patterns within the data (see

Loftland et al. 2006). After initial patterns were identified, refined coding was used to eliminate

and collapse overlapping codes (Loftland et al. 2006). Codes that shared focus on respondent

concerns regarding the management of chronic disease were further refined and are the focus of

this study.

Results
Results highlight the tension that exists between inmates engagement in chronic disease

management strategies and the privilege (or lack thereof) that enables these behaviors to occur.

There is a general acknowledgement among inmates of the existence of an unequal playing field

within the prison environment regarding the ability to manage chronic health issues. Three

distinct themes emerged that highlight the range of health promotion strategies utilized by

inmates: controlling food and diet options, making connections to medical knowledge, and

advocating for ones medical needs, either through personal attempts or by enlisting the

assistance of others. Importantly, results show how privilege, or cultural health capital, fuels the

use of these strategies.

Controlling Food and Diet Options

Respondents expressed concerns regarding the availability of food and diet options that

would allow them to better manage their chronic diseases. For example, a common concern

among diabetics was how many carbohydrates or starches they are fed during meals instead of

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foods that are less likely to exacerbate the disease. Thomas 1, age 61, an African American with

a range of medical problems including diabetes and high blood pressure, articulated that

diabetics are not supposed to eat potatoes, corn and noodles. Yet, these foods are served

regularly in the prison and there are no special diets offered regardless of whether or not an

inmate has the disease.

In his words,

The way they [prison staff] feed diabetics is wrong too much starches. I used to get
tuna fish as a substitute [when I worked on the food line].

Thomas struggles with these circumstances and disclosed that he has lost twenty pounds

since being incarcerated. Thomas has lost weight because he frequently skips meals in order to

avoid certain foods. He understands that this is not good for his health either, but he sees it as

less harmful than consuming foods that he knows will accelerate his condition. Notably, it was

easier for Thomas to manage his diet when he worked in kitchen because he could substitute

foods like potatoes or noodles with healthier options such as tuna fish. However, when he was

given a different job assignment, this advantage was no longer an option for Thomas.

Skipping meals and substituting food items at work were not the only strategies

referenced by respondents for combatting the undesirable foods made available to them. Jason, a

58 year old white man with a host of health problems including osteoarthritis and a prostate

condition, disclosed that when he can afford it he will make his own meals with black market

food items. Jason also explained a process of selectively choosing which items to eat during

chow times based on the relative health benefits of the items offered. In his words,

1
The names of all respondents have been changed in order to protect their identities. All names referenced
throughout this paper are fictitious.

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 They [prison staff] keep talking about this heart healthy diet, but I get servings of
potatoes filled with grease. So I just go for the vegetables and fruit.

Purchasing items from the commissary was another strategy highlighted by respondents

which helped them address concerns that the foods provided to them during meal times fell short

of meeting their nutritional needs. Norbert, a 52 year old white man who suffers primarily from

chronic back problems, explained that before he came to prison he used to drink a glass of milk

every morning to help with his protein intake. In prison, that is not an option. In Norberts

words,

I buy mixed nuts from commissary to get protein. Because you cant get much from the
food line. You have to have nutrition. If the foods not giving it to you, how the hell you
gonna get it? But I can afford to do that. Theres guys who cant afford to do that. And
they look like crap. You cant eat pasta coated in butter every day. Sometimes they [the
prison] serve pasta 3 times a day.
Notably, Norbert acknowledges that while he can afford to purchase extra items from the

commissary in order to get enough protein, other inmates cannot. Norbert disclosed that he has

one of the highest paying jobs in the prison, which gives him disposable income that other

inmates do not have. In his description above, it is apparent that Norbert feels that inmates who

cannot afford to purchase healthy food items from commissary such as nuts are at a

disadvantage, as they do not look well physically. Other respondents not only commented about

using commissary as a strategy to eat healthier, but also discussed how the food quality has

declined at the prison over time. Jim, a 51 year old African American who suffers from diabetes

and asthma, explained that when he first became incarcerated, there were diets specifically

available for diabetics, the prison had diet lines for prisoners with various health conditions, and

there were fresh food options. However, these options are no longer available. In his own

words:

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 When I first fell out [got to prison], it [the food] was much better. Everything now is
processed meats. And that contributes to heart disease, cancer. Theres nothing fresh,
the quantity is low. You rely mainly on commissary to eat healthy.

Other respondents noted not only the availability of commissary as an option to eat

healthier, but also other inmates as a resource. Ron, a 56 year old African American who suffers

from a range of conditions including an auto-immune disease, diabetes, and heart problems,

explains:

So you got the commissary. You try to go there and buy the stuff you need to buy, like
tuna fish. Or if you know guys [inmates] who will provide you with stuff, like oatmeal.

It is relevant to note the influence of cultural health capital and the utility of privilege that

underlie the execution of strategies cited above. For example, inmates who are not aware of the

dietary needs their diseases require would be unable to recognize the dangers of frequently

consuming starches and greasy items. Likewise, inmates who never worked in the kitchen or

who do not have allies within the prison to obtain extra food items from would not have the

option to acquire oatmeal or tuna fish as substitutes for unhealthy items. Commissary is also

connected to privilege, as only those who have money via either a job within the prison or by

someone outside of the prison depositing funds are able to purchase these extra items.

Acquisition of Medical Knowledge

Respondents also described attempts to address their chronic health concerns by making

connections to medical knowledge. One strategy cited by respondents that aided them in

meeting their health needs involved reflecting on previously acquired medical knowledge or

experience. Respondents cited educational attainment such as advanced medical degrees,

medical training via the military, and medical careers such as EMT or nursing assistant positions.

Nicholas, a 56 year old white man who suffers from high blood pressure, osteoarthritis, and a

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chronic back injury, discussed not only being a physician prior to being incarcerated, but a

professor as well. Nicholas expressed feeling that this gives him an advantage when

communicating with medical staff about his health concerns. In his words:

They [medical staff] know I was a doctor, a professor at a medical university. So I get
pretty good [medical] care.

Respondents also reported reaching out to family and friends outside of the prison who

have medical training or experience in order to better address their medical concerns. Brendan, a

53 year old white man who suffers from heart and kidney problems, explained that he has

multiple family members available to help him when he has a medical question. In his own

words:

My mom sends me copies of medical books. I read and study them. My mom is an
anesthesiologist, my sister is a nurse. I call them frequently to ask medical questions.
Respondents also explained the importance of reading up on their health conditions

personally. Respondents went to great lengths to obtain access to medical reading materials,

from requesting materials from government agencies such as the Centers for Disease Control

(CDC), to looking up reading materials in the prison library, to having family or friends send in

medical reading materials. Matthew, a 60 year old African American with high blood pressure

and cholesterol, diabetes, arthritis and kidney problems, emphasized the importance of staying

informed about ones medical conditions. He stated:

Ive read a lot about case law. When I have an ailment, what Ill normally do is go to the
medical encyclopedia. I try to be as informed as I can, especially as Ive gotten older. If
you dont know, they [medical staff] treat you like you dont know.

Matthew discussed the gravity of the situation if medical staff perceive an inmate as

uninformed regarding their medical condition(s). Matthew felt that medical staff perceived lack

of knowledge among inmates as a free pass to not be aggressive with medical care, which is why

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he felt it so important to stay informed about his conditions. Other respondents emphasized the

importance of being informed about ones medical conditions because medical staff will not take

the time to explain things like medication side effects. Rob, a 62 year old African American who

suffers from high blood pressure, liver disease, and kidney problems, expressed a decrease in the

amount of information provided from prison medical staff about inmate medical concerns over

the years. Specifically, Rob states:

They [medical staff] used to give you a paper for every medicine that you had with
listed side effects. So you could make a conscientious decision on whether you wanted to
take it. Not hereif I didnt have medical books, pill books to look it up on my own?
This stuff [medications] would be killing me.

Respondents also reported accessing medical knowledge from each other and sharing

medical knowledge with one another. This strategy is utilized for a variety of reasons. For one,

there are prisoners who not only lack access to medical knowledge but would not even be able to

read such knowledge if it was obtained. Austin, a 59 year old African American who suffers

from diabetes and high cholesterol, offered accounts of inmates who did not understand the

results of their lab work, or who had no knowledge of what medications should be used to target

specific conditions. Austin explained:

I study a lot of medical stuff, read a lot of books. Most guys [inmates] cant read their
lab work, so I read it for them. Tell them what to do. I got all kinds of medical books,
pill books.

Other prisoners expressed the need to help one another with medical knowledge because

without going to medical appointments prepared with possible explanations or reference to

medical language, many respondents feel that they will not be taken seriously by medical staff.

Cory, a 70 year old white man who suffers from high blood pressure explained:

I have an anatomy book in my cell, my ex was a surgical nurselots of guys [inmates]

come to me with symptoms before going to medical because a lot of times it feels like
youre getting the run around.

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 Cory provided examples of inmates getting what he termed the run around by medical

staff. In particular, he mentioned an inmate who complained for months about bad stomach

aches. Medical staff responded by providing antacids and Motrins, despite the inmates

symptoms worsening. After losing nearly 60 pounds, he was finally diagnosed with stomach

cancer. Phil, a 53 year old African American with diabetes, urinary problems, and arthritis,

offered a personal account. Phil explained that it wasnt until citing a medical book and

suggesting that an ultrasound be ordered to detect a suspected urinary tract infection that he was

finally able to get medically diagnosed and treated for the urinary tract infection that he indeed

developed post-op. For Phil, being able to reference a medical procedure and connect it to a

reliable resource granted him some credibility with medical staff, which ultimately led him to

receive the treatment he needed.

Again, the influence of cultural health capital and the utility of privilege connected to

accessing medical knowledge are evident in the accounts offered above. For example, inmates

who have medical training have a distinct advantage when communicating with medical staff.

These inmates are likely able to communicate clearly about their medical concerns, in a language

that medical staff respect, and medical staff may in turn take them more seriously. Similarly,

only inmates who know how to look up medical research and read it, as well as inmates who

understand the value of medical research, are able to connect to that resource. Additionally,

inmates who have social contacts in and outside of the prison are able to acquire medical

knowledge that is otherwise not available. It is important to note that respondents reference

pretty severe disadvantages that exist for inmates who do not have access to medical

information, such as Cory and Phils examples above. Most notably is that inmates who lack

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access to medical knowledge may not get the medical care they need and therefore are at risk for

being diagnosed at later stages of illness.

Health Advocacy
Respondents also described attempts to address their chronic health concerns by either

self-advocating or by reaching out for assistance from sources outside of the prison.

Respondents shared sentiment regarding the importance of speaking up, asking questions and

being assertive, as well as by keeping a critical eye on the explanations medical staff provided.

John, 57 years old and white, suffers from a range of conditions including high cholesterol and

degenerative bone loss. John described the importance of being assertive about medical care, as

inmates who are not able to do so are pushed aside. In his words:

If you need itit goes without saying in hereyou gotta prove why you need it. If you
need a cane, you better start explaining [emphasis added].

For John, it isnt enough to simply communicate what you need to medical staff. Rather,

ones needs must be communicated persuasively and with solid information. Other respondents

cautioned not only on the importance of being able to speak up for ones needs, but also on

keeping a critical eye on the assessments medical providers give. Jerrod, a 60 year old African

American who suffers from diabetes, high blood pressure, and arthritis, explained:

A lot of complications that happen here are because guys [inmates] dont know how to
speak for themselves. They go to medical and accept whatever they say and then the
condition gets worse.

To protect himself, Jerrod explained that he does not accept what the medical staff tell

him about his conditions until he sees test results and lab work in writing. He also mentioned

consulting medical journals and books about his condition so as to ensure the medical providers

assessments are reliable. Another form of self-advocacy referenced by respondents was being

sure to take initiative and follow up with medical providers after lab work, scans, or tests are

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ordered. Many respondents explained that results will not be shared unless an inmate makes the

effort to follow up with medical staff. Justin, a 59 year old white man with high blood pressure,

heart problems, and arthritis, explained:

Theyll [medical] do the test. But they wont follow up and call you up to go over the
test [results]. You have to write to them and then theyll call you up and go over it.

When respondents failed to get the medical attention they needed through the

aforementioned avenues, they explained how filing grievances was another possibility. Caleb, a

51 year old and African American, reported being in good health but reflected on an incident

where he had a great deal of back pain following an injury. Caleb explained the ordeal he went

through in order to obtain the medical treatment he needed for this problem. He complained to

medical staff regularly about severe back pain, but he was never referred out for assessment. It

wasnt until he pursued the grievance process that he was finally able to receive the referral he

needed. In his words:

It took a whole year, after filing a whole bunch of grievances about medical staff, to get
seen at a hospital.

When Caleb was finally sent out to the hospital for assessment, the doctor diagnosed him

with nerve damage that required follow up care. Caleb believed that had he not filed the

grievances he did, he would have never received proper assessment or treatment for his

condition. Terrance, 70 years old and white, shared a similar experience. Terrance suffers from

an array of medical problems including high blood pressure, high cholesterol, arthritis, and

prostate problems. Due to his prostate problems, age, and family history of prostate cancer,

Terry expressed concern with keeping up with regular prostate exams like he did before being

incarcerated. Terrance explained that it wasnt until complaining via filing a grievance that he

was able to obtain a prostate exam. In his words:

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 I got into a discussion with the doctor. When I was on the outside [in the community], I
got my prostate examined 2 times a year. I was told they [medical staff] dont do that in
here. I complained. They finally got that done hereit gets done, but its a war. Like
everything in here, you need to fight for it.
Sometimes even the process of filing a grievance was unsuccessful for respondents as

they attempted to get their medical concerns addressed. In this vein, respondents also discussed

the advantages of having outside sources who are willing to advocate on their behalves.

Respondents offered examples of how attorneys, family members, and organizations intervened

in order to get their medical concerns addressed. David, a 58 year old white man who suffers

from several conditions including osteoarthritis, prostate problems, and chronic back pain,

offered an account as an example of how he failed to get his medical concern addressed until he

sought assistance from an attorney. David explained:

I was prescribed gel insoles for severe arthritis. They [DOC] changed providers then
they [medical staff] no longer wanted to give them to me. I filed multiple grievances and
appeals. It wasnt until I got an attorney involved that they said, yeah, you can have the
insoles no problem.

John, 57 years old and white, suffers from high cholesterol and degenerative bone loss.

In his interview, John offered a particularly upsetting example of an inmate he knew who

suffered with a broken foot for years until he involved an attorney. In Johns words:

This guy had a broken foot for 2 years. They [medical staff] wouldnt x-ray it, made
him walk on it. It wasnt until legal proceedings were started that they x-rayed it and sent
him to a specialist. He needed emergency surgery with 5 pins placed. This is the type of
stuff that happens in an ongoing manner [in here].

Family members were another source of advocacy respondents reported relying on to

help them get their medical needs met. Derek, a 62 years old and African American, suffers

from a range of medical conditions including high blood pressure, arthritis, and tuberculosis.

Derek shared an experience he had where he was suffering with a great deal of pain following a

vertebrae injury. Derek explained that he was unable to get the scans he needed to assess his

117
injury and determine a course of treatment until he solicited the help of his family. In Dereks

words:

If you dont get family involved [in your medical care], you dont get nothing [emphasis
added]. For me, they [medical] gave me x-rays and pills. They werent doing anything. I
was in so much pain I didnt want no one to even touch me. I needed an MRI and a CT
scan, but I had to wait for Boise 2 [central office] for approval. I called my brother, sister,
and mother and had them call. Then my brother had his attorney call. After that, I got the
scans and theyve [medical] been really nice.

Harrison, 58 years old and white, shared a similar experience. Harrison suffers from high

cholesterol, pancreatic problems, and a rare auto-immune disease. Harrison discussed the

importance of having someone on the outside to advocate on your behalf when there is a medical

issue, as he believes that without such help, he would still be fighting to obtain the diagnostic

work he needed to confirm his medical condition. As stated by Harrison:

I feel like I never would have got it [blood test to diagnose condition] without my family
repeatedly calling. Thats whats going on with many guys [inmates]. Without someone
on the outside you arent gonna get the care. And I learned that by talking to other
inmates in here. They said, what you really need is someone on the outside.

In addition to attorneys and family members, respondents disclosed soliciting help from

outside organizations when they were desperate to receive medical treatment. Alan, 57 years old

and white, suffers from multiple health problems including a lung condition, cancer, and heart

problems. Alan described a time where he was unsuccessful for a year, even after filing

grievances, to get the treatment he needed for a huge bulge he had in his intestine that was

coupled with severe pain. Alan explained that after enlisting the help of the Inmate Assistance

Center 3, an advocacy organization for the incarcerated, he was finally able to acquire the

necessary medical treatment. In Alans words:

2
The names of all cities have been changed in order to protect the identities of the respondents and the research
sites. All cities referenced throughout this paper are fictitious.
3
The name of this organization has been changed in order to protect the identities of the respondents and the
research sites. The name of this organization is fictitious.

118
 I got the inmate assistance center involved. They lit a fire under someones butt.
Because the next thing I knew I was on a bus to Oakland [for my surgery].
In the descriptions offered above, the influence of cultural health capital and privilege on

obtaining advocacy, whether self-advocacy or outside advocacy, is apparent. For example,

inmates who do not understand the grievance process within the institution are unlikely to be

successful at utilizing this option to address their medical needs. Some inmates are not aware that

grievance decisions can be filed at all or later appealed, for example. Other inmates are unable

to read or write, which limits their ability to engage in the grievance process at all. Inmates who

do not have confidence regarding their conditions, experience asking medical providers

questions, or experience witnessing negative medical outcomes other inmates have had may be

less likely to speak up or assert themselves.

In his accounts provided above, John also cautioned that inmates need to know how to

assert their needs in the right way, as those who offend or irritate medical staff in the process of

explaining their concerns may be sent to the hole for punishment. John explained that he himself

spent a great deal of time in the hole over his attempts to assert his needs to medical staff until he

understood how to phrase his concerns in a manner that medical providers would be receptive to.

Other respondents reported being sent to the hole for punishment after interactions with medical

staff as well. Thus, walking the line between advocating for oneself and upsetting medical staff

is an ongoing challenge where cultural health capital is especially relevant.

Finally, only inmates who have family or attorneys who are willing to advocate for them,

and to spend money to do so, are able to incorporate that strategy into the management of their

health. However, cultural health capital plays a role in that inmates must not only have these

resources, but understand that utilizing them is likely to lead to positive results. As Harrison

119
explained above, it wasnt until talking to other inmates that he gained an understanding for how

he could utilize family as a resource to get his medical needs met.

Discussion

Prior work has shown that prisoners not only carry a high disease burden (see Macalino

et al. 2004; Okie 2007; Rosen, Schoenback and Wohl 2008; Binswanger, Krueger and Steiner

2009; Wilper et al. 2009; Binswanger et al. 2014), but are likely to experience morbidity and

mortality earlier in the life course than other groups (see Aday 2003; Dawes 2002; Chodos et al.

2014; Loeb et al. 2008; Loeb and Steffensmeir 2006; Harzke et al. 2010). These factors, coupled

with a rapidly growing, aging prisoner population (see Aday 2003; Chettiar, Bunting, and

Schotter 2012), make understanding chronic disease management and health promotion

behaviors among older prisoners a pressing area of inquiry for prison administrators and social

science researchers alike.

Research to date has shown us that personal confidence is related to health outcomes in

older prisoners. Specifically, older prisoners who feel more confident about being able to

manage their health are more likely to have positive outcomes such as improved health since

incarceration and involvement in more health-promoting activities (Loeb and Steffensmeier

2006; Loeb, Steffensmeier and Kassab 2011). Conversely, we know that lower levels of

confidence among older prisoners regarding their abilities to manage their health stem at least in

part from their belief that prison administrators are unresponsive to their health needs (Loeb,

Steffensmeier, and Myco 2007). This work offers an auspicious starting point, yet a sizeable gap

remains in understanding how older prisoners think about and live with chronic disease within

120
the constraints of their environment. Theory building in this area is particularly under-

developed.

This study offers the first attempt to apply the cultural health capital framework to a

prison setting. This is also the first study to include a sample of older men incarcerated across

multiple, varying security level prisons to the discussion of chronic disease management. Prior

work has pointed out the lack of research we have regarding chronic disease management among

older, incarcerated adults from a qualitative perspective in particular (see Loeb, Steffensmeier,

and Lawrence 2008), so this study helps to address that gap in the literature as well. These

contributions are important, as we still know very little about how aging men grapple with

chronic disease while incarcerated.

Results of this study provide evidence that despite living in an extremely restrictive and

depriving environment, older prisoners in this sample were still able to find solutions to address

their chronic health needs. Specifically, I found that cultural health capital operates in three

ways. Prisoners make concerted efforts to modify food intake and dietary behaviors, to connect

their medical concerns to medical knowledge, and to advocate for their medical needs.

However, these solutions are acquired as a result of a great deal of effort and work by these men

and occurs most successfully when cultural health capital is present.

Cultural health capital fueled the choices men made in this sample to control their diets,

make connections to medical knowledge, and employ advocacy efforts. This is apparent because

many of the solutions disclosed by respondents would not have been possible or available

without their use of lay and formal medical knowledge available in the prison, as well as their

knowledge of how healthcare is organized in prison. Such cultural health capital meant that

these men knew how and to whom they could appeal for care when needed. Even something like

121
inmate knowledge that prison administrators do not like negative media attention offers an

advantage because options such as filing a grievance or involving an attorney can act as leverage

in order to get ones medical needs met.

It is important to note that many respondents provided examples of neglect when

discussing their health related concerns. A case that was raised repeatedly was an older man

who had cancer and died with extensive bed sores covering his body due to medical staff failing

to frequently turn his body. This mans family member later sued the prison for medical neglect

and the case received a great deal of media attention locally. Cases like these were referenced by

respondents regularly as motivation for getting access to health care treatment. There are deep

and real fears that this often hidden population grapples with, and respondents in this sample

seemed to recognize that if they do not make efforts to take their medical care into their own

hands, a real possibility is ending up like one of the neglected men they shared stories about.

Results also provide evidence of the reproduction of inequality in prison. Some men

bring cultural health capital with them to prison, such as prior medical training, and some acquire

the capital in the prison itself, such as learning that working in the kitchen provides opportunities

to substitute unhealthy food items for healthier items. We know from the literature that

incarceration perpetuates inequalities in regards to race (Pettit and Western 2004; Western 2007;

Wakefield and Wildeman 2014; Patterson and Wildeman 2015), economic wages and

employment (Western 2007; Pager 2007; Lyons and Pettit 2011), and educational attainment

(Wakefield and Wildeman 2014; Pettit and Western 2004). Researchers have also moved

towards explaining how structural conditions within the prison environment itself drive

inequalities. Nick de Viggiani (2007), for example, in his ethnography of prison life, found that

the differential wage scale established within the prison perpetuated income and status

122
inequalities, as some prisoners made wages that allowed them to purchase desired goods while

other prisoners lack of wages led them to accrue debt and be exploited by prisoners who were

financially secure with high interest loans.

Results of my study offer a contribution to the inequalities literature by showing another

way in which inequalities are reproduced within the prison environment, namely that access to

health management opportunities are structured, at least in part, by cultural health capital.

Prisoners who enter into the prison with cultural health capital as well as those prisoners who

learn to acquire cultural health capital during incarceration have the advantage when seeking to

address their medical concerns.

A potential policy implication is to train peer health mentors in the prison who can work

in tandem with medical providers so that even those without cultural health capital have a

resource for addressing their health concerns. Another option for increasing cultural health

capital is for the prison to allow community health advocates to visit the prison and offer regular

health seminars to educate prisoners about their medical conditions. The medical providers

staffed at the prisons have extremely large caseloads, and many respondents commented about

how they wanted to ask medical providers questions about their conditions but were never given

the time. Health seminars put on by volunteers would help alleviate this issue and would be

inexpensive to implement.

Conclusion

Notably, this research tells the story of respondents who, for the most part, were able to at

least partially address their health care concerns. These respondents appeared to be aided in their

123
efforts by their acquisition of cultural health capital. It will be important for future research to

target respondents who are suffering in the prison system and do not have the cultural health

capital to resolve their concerns. Their accounts could help provide additional insight into the

problem at hand. Future studies should also make concerted efforts to include Hispanic men as

well as incarcerated women, both of which are demographic groups this study was unable to

include.

Despite these limitations, this study offers new and important contributions to the

inequalities literature. Cultural health capital looks to be a promising framework for

understanding how older prisoners grapple with serious health issues while living in an

environment that is very limiting. Policies that help to increase cultural health capital among

older prisoners, as well as access to health management strategies in general, will be important to

consider in future discussions of prison health policy.

124
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 CHAPTER 5

AN EXPLORATION INTO END OF LIFE PLANNING AMONG A SAMPLE OF

OLDER MALE PRISONERS

Introduction
The population is aging. Due in large part to the baby boomers, the U.S. Census Bureau

has estimated that by 2030 nearly 20 percent of the population will be at least 65 years of age

and by 2050 the number of Americans aged 65 and older will rise to 88.5 million, more than

double what their number was in 2010 (Vincent and Velkoff 2010). The United States also leads

the world in its incarceration rates, with 1 in every 110 adults currently incarcerated in either

prisons or jails (Glaze and Kaeble 2014).

The aging of the population at large coupled with an era of mass incarceration has led to

an aging prisoner population, with the number of older prisoners more than tripling between

2000 and 2013 (see Beck and Harrison 2001 and Carson 2014). In fact, older prisoners represent

the fastest growing age group among the prison population today (Aday 2003; Chettiar and

Schotter 2012). According to the Bureau of Justice Statistics, over 270,000 men and women 50

years of age and older are currently under the jurisdiction of state or federal prisons, comprising

18 percent of the total U.S. prison population (Carson 2014).

132
 Prisoners are not only aging, they are highly susceptible to both chronic and infectious

disease. Research has shown that prisoners in general are not a healthy group (Aday 2003; Loeb

and AbuDagga 2006) and most older prisoners report declines in health since incarceration

(Loeb, Steffensmeier and Kassab 2011). In addition, prisoners 50 years of age and older are

hypothesized to age approximately 10 years faster than their community dwelling peers and are

significantly more likely to have a disability or chronic health condition (Dawes 2002; Aday

2003; Binswanger, Krueger and Steiner 2009). A total of 3,479 prisoners died in custody in

2013 and roughly 90 percent of these deaths were due to illness (Noonan, Rohloff, and Ginder

2015). Deaths of older prisoners are increasing in particular, as the percentage of deaths of

prisoners age 55 years and up has increased by 8 percent on average each year since 2001

(Noonan, Rohloff, and Ginder 2015).

Given the current sentencing structure, the aging of the prison population, and the

generally poor health of inmates as a group, it is critical to examine options related to the

provision of health related services for older, incarcerated adults. One aspect of health that is

particularly important to aging populations is end-of-life care. As it stands, end-of-life decision

making among prisoners is poorly understood and we know little about the factors that play a

role in decisions surrounding end-of-life for older prisoners. This study contributes to the

literature by providing a descriptive look at end-of-life decision making among this generally

neglected and marginalized population, which will offer a starting point for medical providers

and correctional administrators to build from. Five specific factors are explored in relation to the

preferences of end-of-life care for a sample of older, incarcerated men: race, death distress, age

upon release, deprivation, and social support.

133
Review of Related Literature

Health and Aging in Prisons

Nearly 1.6 million men and women are currently incarcerated in state and federal prisons

across the U.S. today (Carson 2014) and 1 in every 110 adults are serving time in either jails or

prisons (Glaze and Kaeble 2014). Indeed, mass incarceration has been a key feature of our

criminal justice system since the 1970s and is the result of a multitude of factors, including

sentencing reforms, the war on drugs, and higher rates of probation and parole revocation

(Austin and Irwin 2000; Garland 2001; Travis, Western, and Redburn 2014). Our era of mass

incarceration has led many scholars to examine not only the explosion of the prison population,

but the collateral consequences of incarceration on health and well-being over the last few years.

The effects of incarceration are significant and have been demonstrated to threaten health

throughout the life course and after release (London and Myers 2006; Schnittker and John 2007).

When compared to their community dwelling counterparts, those who are incarcerated have an

increased risk of acquiring stress related illness and infectious disease (Massoglia 2008), chronic

illness (Aday 2006; Aday 2003; Loeb, Steffensmeier and Kassab 2011; Wilper et al. 2009), and

mental health problems (Schnittker, Massoglia, and Uggen 2012). Research has also shown that

for each year of incarceration served, an individuals life expectancy may be reduced by an

average of 2 years (Patterson 2013). Despite these vulnerabilities, many prisoners with serious

chronic illnesses go untreated or are under-treated while incarcerated, exacerbating their

conditions as they age (Wilper et al. 2009). Frost and Clear (2012), in their review of the last

decade of research in corrections, argued that much research is still needed on the impact of mass

incarceration on both individuals and families.

134
 An important but relatively unexplored area involves analyzing the effects of mass

incarceration on increasing numbers of older adults who reside within prison walls. The elderly

prisoner population represents the fastest growing age group within our prison system today

(Aday 2003). At yearend 2013, 18 percent of the state and federal male prisoner population was

at least 55 years of age, a figure that has more than tripled since 2000 (Carson 2014). This

graying of the prisoner population presents significant challenges for correctional

administrators, particularly in regards to the provision of health care related services (see Reimer

2008; Rikard and Rosenberg 2007). Older prisoners cost approximately 3 times as much to

incarcerate as younger prisoners, for example, in part because of the high levels of health care

services that older prisoners require (Aday 2003; Chettiar and Schotter 2012; Williams et al.

2012). In addition to the financial consequences, housing a graying prisoner population carries

with it a great deal of responsibility for medical providers and correctional administrators who

must be prepared to accommodate a range of medical needs for prisoners at earlier stages in the

life course than might be required in community populations.

Aging is accompanied by declines in health status and increased morbidity in general

(Adams and White 2004). Yet, prisoners experience accelerated physiological aging and have

been hypothesized to age approximately 10 years faster than their community dwelling peers

(Aday 2003; Dawes 2002). This is due to a host of factors. For one, many prisoners have

histories riddled with victimization and trauma (Abram et al. 2007; Maschi et al. 2011; Zgoba

et al. 2012), substance abuse (Rowell-Sunsolo et al. 2016), and poverty (Wakefield and Uggen

2010). In addition, research has shown that age and stress have an interactive effect on the

immune system (Graham, Christian and Kiecolt-Glaser 2006; Patterson 2013). Given their

histories and the stressful environments in which they reside, prisoners are particularly

135
vulnerable to disease and premature mortality as they age. By default, prisons also consist of

living conditions that enhance the spread of stress related illnesses and infectious disease, as

they involve large numbers of people living in close quarters amidst a high stress environment

(Massoglia 2008).

Despite their health-related vulnerabilities, many prisoners with serious chronic

illnesses go untreated or are under-treated while incarcerated, exacerbating their conditions as

they age (Wilper et al. 2009). These circumstances have led some scholars to conclude that

geriatric prisoners should be defined as those who are 50 years of age and older (Loeb and

AbuDagga 2006). When compared to their counterparts in the community, prisoners 50 years

of age and older are significantly more likely to have a disability (Binswanger, Krueger, and

Steiner 2009) and suffer from an average of 2 to 3 chronic health conditions at any given time

(Aday 2003; Loeb and Steffensmeir 2006).

Deaths of older prisoners have also been increasing steadily each year since 2001 and

this pattern is likely to continue in the coming months and years (Noonan, Rohloff, and

Ginder 2015). The expanded use of life sentences (Nellis and King 2009; Nellis 2013) means

that a significant portion of the prisoner population will not only age and grapple with chronic

disease while incarcerated, but eventually die behind bars (Chettiar, Bunting, and Schotter

2012). Given that the demographic makeup of prisons is changing, as well as prisoners

vulnerability to illness, it is becoming more pressing to gain a solid understanding of the end-

of-life needs of older prisoners. This is particularly necessary since prisons were never

designed to act as de-facto nursing homes and chronic care facilities in their implementation.

136
Prisons and End-of-Life Decision Making for Older Adults
There has been some focus in recent years on addressing the health care needs of older

prisoners. Yet, this research has focused primarily on self-efficacy and health promoting

behaviors (Loeb, Steffensmeier and Kassab 2011; Loeb, Steffensmeier, and Myco 2007; Loeb

and Steffensmeier 2006) and on implementing hospice care (Hoffman and Dickinson 2011;

Yampolskaya and Winston 2003) and palliative care programming within the prison system

(Linder and Myers 2009). Research that explores the perceived needs of older prisoners

regarding end-of-life decision making is without comprehensive examination and for the reasons

reviewed above, it is an important gap in the literature to address.

What we do know from the existing literature is that prisoners do not universally desire

life-extending measures such as cardio pulmonary resuscitation (CPR), surgery, and tube

feeding. In fact, many prisoners are open to both receiving hospice care and providing hospice

care as volunteers to other inmates when faced with illness (Dawes 2002; Aday 2003; Wion and

Loeb 2016). Initial studies also show that certain factors, such as race, sentence length, death

anxiety, and functional status, appear to be influential aspects of end-of-life decision making

among prisoners (Phillips et al. 2009; Phillips et al. 2011).

It is important to explore the perceived needs of prisoners regarding end-of-life care more

fully. Medical providers in the prison system will benefit from this information, as will

correctional administrators. Additionally, prisoners are frequently neglected from end-of-life

related research, which further contributes to their marginalized statuses. Given that prisons are

such a unique setting in which to provide and receive end-of-life care, the preferences of

prisoners and the factors that are related to their decisions about end-of-life may look different in

this setting than they would in the community.

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 By design, prisons are incredibly depriving and coercive environments. Upon arrival,

prisoners are stripped of their freedom and autonomy, their identities, and a multitude of goods

and services (Sykes 1958). In addition, coercion is often relied upon by prison staff in order to

gain compliance, so prisoners regularly face threats regarding the removal of what few privileges

remain (Colvin 1992). The threat of victimization is another consistent stressor, as physical

assault, stabbing, and theft rates can be higher in prisons than in the community at large

(Wooldredge and Steiner 2014). Any pre-existing relationships may also be strained or severed

by the prison environment (Comfort 2008; Massoglia et al. 2011).

Research thus far has shown that these deprivations increase offender recidivism rates

(Johnson-Listwan et al. 2013), reduce psychological well-being among prisoners (Johnson-

Listwan, Colvin, Hanley, and Flannery 2010), and increase prisoner rule violations and violence

(Rocheleau 2013). Theoretically, these circumstances make prisons unique institutions for

understanding the provision and receipt of end-of-life care. Given the extreme environmental

differences between prison and community settings, it is important that we do not rely upon

findings in community settings alone to guide policy on end-of-life in prison settings. Thus, this

study acknowledges research on end-of-life decision making in community populations, yet tests

specific hypotheses in order to explore how several factors are tied to end-of-life decision

making among a sample of older prisoners specifically. Below, the theoretical importance of

each factor is discussed prior to hypothesis testing.

Race
One factor that is likely related to the choices older prisoners make about end-of-life care

is race. Research in community settings has found that Black patients tend to want more

aggressive or curative focused care at the end of life when compared to their white (Johnson,

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Kuchibhatla, and Tulsky 2008; Smith, Davis, and Krakauer 2007; Winter and Parker 2007;

Winter, Dennis, and Parker 2007; Kwak and Haley 2005; Bullock 2006), and Hispanic peers

(Kelly, Wenger and Sarkisian 2010). Black patients engage less frequently in advance care

planning (Carr 2011) and enroll in hospice care at later stages of illness (Miesfeldt et al. 2012).

Black patients also tend to report significantly lower-quality patient-physician relationships than

their white counterparts (Smith, Davis, and Krakauer 2007) and many Black patients have

serious concerns about trusting doctors (Martin et al. 2010). This apprehension or lack of trust in

doctors goes hand in hand with the benefits Black patients see in certain end-of-life options over

others, as they have concerns that physicians may cease treatment prematurely if given the

option (Lind, Nortvedt, Lorem, and Hevroy 2012).

Research that examines the influence of race on end-of-life decision making in prison

settings is limited. However, Phillips et al. (2009), in their sample of 73 older prisoners, found

that Black prisoners were significantly more likely to prefer the use of a feeding tube to sustain

their lives in the illness scenarios provided whereas White prisoners were significantly more

likely to prefer palliative (comfort) care only. Moreover, Phillips and colleagues (2011) sampled

94 older prisoners and found that if they believed they would be paroled, Black prisoners

reported desiring more days of life in the context of the hypothetical illness scenarios provided

than White prisoners.

Black prisoners may be more likely than White prisoners to prefer certain end-of-life

options (CPR, surgery, and feeding tube) be utilized on their behalf in the hypothetical illness

scenarios provided for a couple of reasons. First, Black men face sentences of incarceration at

particularly disproportionate rates (Bales and Piquero 2012) and lengths (Doerner and Demuth

2010) when compared to their white and Hispanic peers. Black men are also disproportionately

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affected by sentencing reforms (Harmon 2011). These disparities, coupled with the nature of the

prison environment and trust issues the Black community already has towards medical providers,

may make it likely that Black prisoners will want to utilize end-of-life options that are more

likely to extend their lives. In a way, doing so could help ensure that prison medical providers

do not discontinue medical treatment prematurely.

Death Distress
Another context that is likely related to the choices older prisoners make about end-of-

life care is death distress. Research in community settings has found that the way in which

individuals process thoughts of death can be an important predictor of end-of-life planning.

Dobbs et al. (2012), for example, found that those with greater fears of death were less likely to

complete living wills. Research in community settings has focused most heavily on the impact

of death anxiety on end of life decision making. This work has found that patients with higher

levels of death anxiety are more likely to desire treatment options that will hasten their deaths

(Mystakidou et al. 2005; Villiavicencio-Chavez et al. 2014).

There is very little research to date that examines death distress among older, incarcerated

adults and how it relates to end-of-life planning. Aday (2006) found that death anxiety was

slightly higher among older prisoners than their community dwelling peers. Phillips et al. (2009)

concluded that prisoners with higher levels of death anxiety were more likely to prefer end-of-

life options that would extend their lives in the hypothetical illness scenarios provided, such as

feeding tubes. Similarly, Phillips et al. (2011) found that prisoners with greater fears of death

desired more days of life overall in the hypothetical illness scenarios provided.

I am unaware of any research to date that considers the role of death distress on end-of-

life planning among prisoners when death distress is defined as three distinct constructs: death

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anxiety, death depression, and death obsession. Prisoners with higher levels of death distress

may be more likely than prisoners with lower levels of death distress to prefer life extending end-

of-life options be utilized on their behalf because those with greater death distress may feel less

prepared to die, as thoughts of dying provoke feelings of significant psychological discomfort.

Incarceration also provides an environment where death distress may be even more magnified

than it would be in community settings, as fears of dying alone, dying while estranged from

significant relationships, and dying while branded a felon are real and potent fears (Aday 2003).

Thus, those with high levels of death distress may wish to utilize end-of-life options that help to

sustain life in order to postpone an event that causes a significant amount of psychological

discomfort: death.

Social Support
Social support is another factor that is likely to be related to the choices older prisoners

make about end-of-life care. In community settings, social support and family involvement have

been identified as critical pieces to end-of-life planning (Lind, Nortvedt, Lorem, and Hevroy

2012; Kahana, Kahana, and Wykle 2010). Research has found that patients with solid social

supports are more likely to engage in end-of-life care planning, as the support of loved ones act

to buffer the stress of planning for death and planning for death is actually perceived by patients

as a way to protect loved ones (Ai, Hopp, and Shearer 2006). Social support also plays an

important role in how well patients cope with dying and declining health (Neimeyer et al. 2011).

The prison setting provides a context where social supports can be especially difficult to

maintain or establish, so pre-existing weaknesses in this area can be exacerbated by the prison

environment itself. Family members who visit loved ones endure many hardships in order for

the visits to occur (see Comfort 2003; Comfort 2008) and intimacy between couples is difficult

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to maintain (Comfort et al. 2005). The stigma of incarceration can also pit individuals who have

an incarcerated family member against their own neighbors, incentivizing families to reduce

contact with their incarcerated loved ones over time (Braman 2004). Prisoners can also be

placed with no regard for the location of their family. Many prisoners are incarcerated hundreds

if not thousands of miles away from home, for example (McKay et al. 2016).

Research has found that the less social support an individual has, the greater his or her

fears of death are in both community (Fry 2003) and prison settings (Aday 2006; Aday 2003).

Prisoners with more extensive social support may be less likely to desire options that extend life

such as feeding tubes and CPR because they feel more supported and therefore more at ease with

the idea of dying. They may also see choices to not extend their lives in dire medical situations

as a way to protect their loved ones (see Ai, Hopp, and Shearer 2006). By contrast, those with

poor social supports may feel less at peace. They may have lost connections with loved ones,

been denied forgiveness, missed opportunities to repair relationships, or had relationships end

entirely. Those with weaker social supports may therefore be more likely to desire options that

extend life not only because they are less comfortable with death and planning for death, but also

because they may be less concerned with how life-extending measures may impact loved ones

since those relationships are no longer at the forefront.

Age upon Release

Another context that is likely related to the choices older prisoners make about end-of-

life care is the age at which the prisoner can be released and re-join the community. Research

thus far has found that prisoners who believe they will be paroled or who are projected to be

paroled prior to age 75 are more likely to desire more days of life in hypothetical illness

scenarios and that end-of-life options that include feeding tubes and CPR be used on their behalf

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(Phillips et al. 2009; Phillips et al. 2011). Prisoners who are projected to be younger at their

calculated release dates may be more likely to desire these options because those who are

projected to be younger at their calculated release dates may wish to preserve their chances of

returning to the community. Conversely, those who are projected to be older, as well as those

who are serving life sentences, may be less likely to desire end-of-life options that involve the

preservation of life because they are aware that rejoining the community is never going to be a

realistic possibility.

Experienced Deprivation

Experienced hardships or deprivation is another factor that is likely to be related to the

choices older prisoners make about end-of-life care. We know from the existing literature that

the deprivations prisoners face while incarcerated have negative effects. The deprivations of

incarceration increase recidivism rates (Johnson Listwan et al. 2013), reduce psychological well-

being (Johnson Listwan, Colvin, Hanley, and Flannery 2010), and increase prisoner rule

violations and violence (Rocheleau 2013). Prisoners who report higher levels of experienced

hardships while incarcerated (i.e., missing freedom, not feeling safe, having conflicts with staff

and other inmates, having poor health care, etc.) may be less likely to desire end-of-life options

that involve tube feeding and CPR in the hypothetical illness scenarios provided because those

with higher levels of experienced deprivation are living more painful lives with poor prospects of

improvement and, in the midst of declining health, may have little desire to continue life in the

context of those hardships.

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Methodology

Hypotheses

Five specific hypotheses pertinent to the literature reviewed above are tested in this

article. The first hypothesis (H1) is that Black prisoners will be more likely than white prisoners

to desire CPR and tube feeding in the hypothetical end-of-life scenario provided. The second

hypothesis (H2) is that prisoners with higher levels of death distress will be more likely than

prisoners with lower levels of death distress to desire CPR and tube feeding in the hypothetical

end-of-life scenario provided. The third hypothesis (H3) is that prisoners who have higher levels

of social support will be less likely than inmates with lower levels of social support to desire

CPR and tube feeding in the hypothetical end-of-life scenario provided. The fourth hypothesis

(H4) is that prisoners who will be older on their predicted release date will be less likely than

prisoners who will be younger on their predicted release date to desire CPR and tube feeding in

the hypothetical end-of-life scenario provided. Finally, I hypothesized that (H5) prisoners who

report higher levels of experienced deprivation while incarcerated will be less likely than

prisoners who report lower levels of experienced deprivation to desire CPR and tube feeding in

the hypothetical end-of-life scenario provided.

Setting and Participants

This study was approved by the Kent State University institutional review board as well

as the Research Review Committee within the state Department of Corrections (DOC) that

collaborated on the project. Participants were recruited from three mens State Correctional

Institutions (SCIs) within one state in the northeastern United States. The three SCIs were

stratified by security level: SCI 1 is a medium security facility; SCI 2 is a minimum security

144
facility; and SCI 3 is a super maximum security facility. A total of 5,504 adult men were housed

across the three facilities at the time of data collection (October 2013 to November 2014).

Inclusion criteria dictated that participants had to be at least 50 years of age, as this is the

most common lower limit age criterion used in studies of older inmates health (see Loeb and

AbuDagga 2006). Participants were also required to be English speaking because funding for a

translator was not available. Participants were excluded from sampling if they: (a) had a

sentence of death; (b) had an IQ score that fell 2 standard deviations below the mean; and (c) had

a mental health classification within the state DOC that indicated (1) the respondent had a mental

health history and required significant monitoring by the Psychiatric Review Team AND (2) the

respondent was currently receiving treatment for a substantial disturbance of thought or mood

which significantly impaired judgement, behavior, capacity to recognize reality, or cope with the

ordinary demands of life. The IQ score and mental health classification parameters were set so

as to exclude any participants who had cognitive or mental health impairment severe enough to

potentially hinder their abilities to provide informed consent. The Research Review Committee

chairperson at the DOC provided a computer-generated listing of all eligible prisoners for

recruitment. Of the 5,504 men housed across the three facilities at the time of the study, 1,270

were at least 50 years of age and 1,158 met recruitment criteria.

Procedures
Data were gathered in three phases. At each SCI, the researcher began by visiting the

institution several weeks prior to data collection for pre-recruitment. During this visit, the

researcher accompanied religious staff throughout the day as they led worship services. Prior to

each scheduled worship service, staff allowed the researcher to briefly introduce the project to

any prisoners who were in attendance and explain to prisoners that they may be getting a letter in

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the coming weeks inviting them to participate. Attending prisoners were also permitted to ask

questions about the project. In an attempt to reach as many potential participants as possible, the

researcher attended a range of denominational worship services, including Protestant, Catholic,

Islam, Native American, and Jehovahs Witness services. In total, the researcher had contact

with approximately 215 prisoners across the three SCIs at religious services during this phase.

The intention of attending these services was not to recruit directly from the pool of attendees,

but to use religious services as a forum to spread interest about the research throughout the

prison. A powerpoint slide explaining the study was also placed on the rotation for the inmate

run television channel at this time.

After the pre-recruitment phase, the researcher created recruitment letters using the

computer-generated list of eligible prisoners that the Research Review Committee chairperson at

the DOC provided. These letters were personally addressed to each eligible respondent and

placed in each prisoners respective mail drawer. Within the letter, recruits were informed of the

studys purpose and told that participation was completely voluntary. The letter also explained

that choosing or not choosing to participate would have no impact on their parole status or

privileges at the institution. If after reading the letter prisoners wished to participate, they were

instructed to write a note to the point of contact the researcher had identified at the SCI (the

superintendents acting assistant) explaining that they wished to participate and would like to be

scheduled for an interview with the researcher.

The superintendents assistant then compiled a list of those prisoners who submitted

letters and scheduled call-out lists for each day the researcher would be conducting interviews.

The researcher consistently visited the SCI anywhere from 2-4 days per week until the list of

prisoners who expressed a desire to participate had been exhausted. Prior to participating in the

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interview each potential respondent was given an informed consent document by the researcher,

which explained the studys purpose, the voluntary nature of the study, and what the respondent

would be asked to do. Before signing the informed consent document, the researcher walked

through all components of the document and made sure the respondent understood each item and

had the opportunity to ask questions. Upon signing the informed consent document, the

researcher conducted a survey-led interview with the respondent. On average, interviews lasted

about 50 minutes. All interviews were conducted one on one between the researcher and the

respondent in either the no-contact visiting area or at a table inside the general population

visitation room.

Each completed interview document was handled by the researcher and the researcher

only and all information collected was kept confidential. At no point in time did any SCI or

DOC staff have access to completed surveys. In total, 1,158 prisoners were asked to participate

across the three SCIs, 374 submitted notes expressing interest in participating, and 279

completed interviews. Those who submitted notes but ultimately did not participate (n = 95)

were either scheduled to work on the day of the interview and did not want to miss their shift,

were too ill to attend, or changed their mind. As a supplement to the quantitative survey data,

qualitative notes were gathered during interviews as well.

Tables 10 and 11 show key descriptives and frequency distributions for those who

participated in the research. Respondents were an average of 58 years old and 49 percent (n =

137) had completed high school or obtained a GED. At the time of interviews, respondents had

served an average of 164 months (13.6 years) for their current offense(s) and 24 percent (n = 68)

were serving life sentences. Sixty-one percent of the final sample was white (n = 168) and 39

percent was black (n = 107). The majority of respondents were divorced (n = 111) or never

147
married (n = 100), with only 18 percent (n = 51) being married. Eighty percent of respondents

were incarcerated at either the super-maximum (n = 113) or medium security (n = 112) state

correctional institution, while 20 percent were incarcerated at the minimum security institution (n

= 54). The majority of respondents (77 percent) were also incarcerated for crimes of violence.

Measures and Materials

Interview questions were prompted with a 35-item survey instrument developed by the

researcher in consultation with the literature. The interview gathered information about a range

of factors designed to answer questions for a larger project regarding inmates experiences with

incarceration and health care. Data collected included demographic information, sentencing

Table 10. Frequency Distribution (N = 279)

n %
Education
11th grade or less 59 21.1
12th grade or GED 137 49.1
Some college+ 83 29.7
Race
White 168 61.1
Black 107 38.9
Offense Type
Violent 216 77.4
Non-violent 63 22.6
Life Sentence
Yes 68 24.4
No 211 75.6
Marital Status
Married 51 18.3
Divorced 111 39.8
Never Married 100 35.8
Widowed 17 6.1
Number of Friends
None 117 41.9
1-3 86 30.8
4-9 39 14
10+ 37 13.3

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information, history of incarceration, current health, religiosity, extent of social support among

family and friends, death distress, perceptions regarding deprivation, and desire for various

medical treatments across several hypothetical illness scenarios. The specific measures that are

the focus of this study are explained more fully below.

Desire for Tube Feeding and CPR: The Life Support Preferences Questionnaire (LSPQ)

(Ditto et al. 2001) was used to assess respondents desire for medical treatments such as CPR

and tube feeding across a range of illness scenarios, including scenarios involving end-of-life.

The LSPQ details 9 hypothetical illness scenarios, each of which varies in illness severity,

prognosis, and level of pain. This measure has been used in community settings (Bookwala et al.

Table 11. Descriptive Statistics (N = 279)

Mean S.D. Minimum Maximum
Outcome Variables
Desire for Tube Feeding 0.37 0.48 0 1
Desire for CPR 0.38 0.49 0 1
Independent Variables
Black 0.39 0.49 0 1
Death Distress 36.37 13.62 24 84
Predicted Age Upon Release 75.47 19.59 50.5 105
Number of Friends 0.98 1.05 0 3
Deprivation 55.93 12.28 19 86
Controls
Education 2.09 0.71 1 3
Frequency of Prayer 10.68 10.51 0 56
Current Health 3.47 2.08 0 11

2001; Ditto et al. 2001; Coppola et al. 1999) and has recently been used in prison settings as well

(Phillips et al. 2011; Phillips et al. 2009). In alignment with prior work that incorporated only

four of the nine original scenarios (Phillips et al. 2009; Phillips et al. 2011), I administered only

seven of the nine original scenarios in order to reduce respondent burnout and to save time:

current health, Alzheimers disease, severe stroke with no chance of recovery, severe stroke with

a slight chance of recovery, and terminal colon cancer with and without pain.

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 In this paper, I focus on desire for treatment in the context of the severe stroke with no

chance of recovery scenario. Treatment options for this scenario included cardio-pulmonary

resuscitation (CPR) and feeding tube. For each treatment option, respondents selected a number

between 1 and 5 to express their desire for treatment (1 = definitely do not want; 2 = probably do

not want; 3 = unsure; 4 = probably want; 5 = definitely want). For the analyses, responses 3, 4,

and 5 were collapsed and coded as 1, want the treatment and responses 1 and 2 were collapsed

and coded as 0, do not want the treatment. Unsure responses were coded as want the

treatment because if it is not clear that a patient does not want a treatment, the default response

is typically to provide said treatment.

Race: Respondents were asked to select one or more racial categories to describe

themselves, including American Indian or Alaskan Native, Asian, Native American or

Other Pacific Islander, Black or African American, and White. However, 98% of

respondents (N = 275) selected either Black or African American, or White. For the sake of

coding and maintaining large enough numbers in each category to perform the analyses, the four

respondents who selected other categories were excluded from the analyses. For the analyses,

responses were coded as 1, Black and 0, White.

Death Distress: To measure death distress, respondents were asked to complete the Death

Distress Scale (DDS) (Abdel-Khalek 2011). Until now, prior studies have focused largely on

death anxiety by means of the Death Anxiety Scale (Templer 1995; Templer 1970). The DDS,

by contrast, has the advantage of casting a wider net and captures three distinct constructs: death

anxiety, death depression, and death obsession. To administer the DDS, respondents were asked

to respond to 24 statements about death (i.e, I find it greatly difficult to get rid of thoughts about

death, I fear dying a painful death, I lose interest in caring for myself when I think about

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death, etc.) with a number from a likert scale (1 = the statement doesnt sound at all like

me,2.3.4....5 = the statement sounds very much like me) and these responses were

summed. Summed scores on the DDS range from 24 to 120, with lower scores indicating low

levels of death anxiety, death depression and death obsession and higher scores indicating high

levels of death anxiety, death depression and death obsession. Although the DDS has been

administered in community populations (Abdel-Khalek 2011), this is the first study to utilize the

DDS on a sample of prisoners.

Social Support: Social support was captured by asking respondents how many friends

they currently have that they can count on. Responses are coded as follows: 0 = no friends; 1

= 1-3 friends; 2 = 4-9 friends; and 3 = 10 or more friends. Respondents were also asked

how many family members they currently have that they can count on, but these results were not

significantly different from the number of friends respondents reported. Thus, although number

of friends is the focus in this study for social support, results would be similar if number of

family was the measure used.

Estimated Age upon Release: Respondents estimated ages upon release were predicted

by taking the mean of each respondents minimum and maximum sentence (in months) and

subtracting the number of months already served. This provided an estimate for how much time

(in months) the respondent had remaining in his sentence. This number was then added to the

respondents age. The exception was lifers, who were all coded as 105 years (N = 72) since

this group has no possibility of parole.

Deprivation: To measure experienced hardships or deprivation while incarcerated,

respondents were asked to complete the Deprivation Scale (Rocheleau 2013). To administer the

Deprivation Scale, respondents were asked to respond to 19 statements about difficulties they

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have experienced while incarcerated (i.e, Missing family or friends, Conflicts with prisoners,

Quality of medical care, Concerns about my safety, etc.) with a number from a likert scale (1

= this has not been hard at all for me,2.3.4....5 = this has been very difficult for me)

and these responses were summed. Summed scores on the Deprivation Scale range from 19 to

95, with lower scores indicating a low level of experienced deprivation or hardships and higher

scores indicating a high level of experienced deprivation or hardships. Although the Deprivation

Scale has been administered in corrections populations (see Rocheleau 2013), this is the first

study to utilize the Deprivation Scale on a sample of older prisoners.

Education: Education was measured by asking respondents to report the highest grade

they had completed in school, with responses ranging from 8th grade or less to college

degree. For the analyses, the original 7 response options were categorized and collapsed into 3:

1 = 11th grade or less, 2 = 12th grade or GED, and 3 = some college and beyond.

Religiosity: Religiosity was measured by asking respondents to report how many times

they pray in a typical week. This measure was chosen because it accommodates a range of

denominations as well as people that are religious but may not necessarily attend religious

services, which is particularly relevant in prison settings where solitary confinement, problems

with other prisoners, and safety issues are ongoing realities.

Current Health: Current health was assessed by summing the number of current chronic

health problems respondents reported from the Older Mens Health Program and Screening

Inventory (Loeb 2003). This scale includes a total of fifteen chronic conditions (i.e., high blood

pressure, cancer, arthritis, diabetes, etc.) as well as the option to write in additional chronic

health conditions that do not appear on the list (i.e., hepatitis C, anxiety, epilepsy, celiac disease,

etc.). The Older Mens Health Program and Screening Inventory has been widely used in both

152
community (Loeb 2003) and prison populations to assess health (Loeb, Steffensmeir and Kassab

2011; Loeb, Steffensmeir and Priscilla 2007; Loeb and Steffensmeir 2006).

Data were coded as described above. Given that the dependent variable (desire for

treatment) has a dichotomous outcome (0 = do not want the treatment; 1 = want the treatment),

and a combination of continuous and categorical predictors, binary logistic regression was

utilized for hypothesis testing.

Results

The results of the two regression analyses are displayed in Tables 12 and 13. The full

model predicting preferences for feeding tube included race, death distress, predicted age upon

release, social support, and experienced deprivation. After controlling for education, religiosity,

and current health, this model was significant and three of the individual predictors had a

significant association with respondents preferences for feeding tube (see Table 12).

As predicted, there is a significant, positive relationship between respondents

preferences for feeding tube and race ( = 1.408; p < .001; OR = 4.087). Specifically, the model

predicts that the odds of desiring a feeding tube in the hypothetical stroke scenario are increased

by a multiplicative factor of 4.087 for Black men. Also as predicted, there is a significant,

negative relationship between respondents preferences for feeding tube and experienced

deprivation ( = -.026; p < .05; OR = .974). This means that for each increase in deprivation,

desire for feeding tube in the hypothetical stroke scenario decreased by .974 units.

There is also a statistically significant relationship between respondents preferences for

feeding tube and social support, but in the opposite direction predicted ( = .308; p < .05; OR =

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1.36). Here, the model predicts that the odds of desiring a feeding tube in the hypothetical stroke

scenario are increased by a multiplicative factor of 1.36 each time respondents reported having

more friends that they could count on.

The full model predicting preferences for CPR included race, death distress, predicted

age upon release, social support, and experienced deprivation. After controlling for education,

religiosity, and current health, the same predictors in the first model remain significant in the

second model: race, social support, and experienced deprivation (see Table 13). There is a

significant, positive relationship between respondents preferences for CPR and race, however

the effects are even stronger for CPR preferences than they were for feeding tube preferences (

= 1.526; p < .001; OR = 4.598). Black men were actually four and a half times as likely to desire

CPR in the hypothetical stroke scenario provided than white men. Also as predicted, there is a

significant, negative relationship between respondents preferences for CPR and experienced

deprivation, but the effects are even stronger for CPR preferences than they were for feeding

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tube preferences ( = -.035; p < .01; OR = .966). For each increase in deprivation, desire for

CPR in the hypothetical stroke scenario decreased by .966 units.

There is also a significant relationship between respondents preferences for CPR and

social support, but, as in the first model, in the opposite direction predicted ( = .300; p < .05;

OR = 1.350). Here, the model predicts that the odds of desiring CPR in the hypothetical stroke

scenario are increased by a multiplicative factor of 1.35 each time respondents reported having

more friends that they could count on. It is important to note that two of the individual

predictors failed to have a significant association with respondents preferences for both feeding

tube and CPR: death distress and predicted age upon release. Implications regarding the above

findings are discussed in detail below.

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Discussion
This study contributes to the literature by exploring the potential relevance of 5 factors on

the end-of-life planning preferences of a sample of older men incarcerated across multiple,

varying security level prisons. This is important because aging and death are not confined to

geriatric or infirmed specialty prisons alone. Yet, prior samples had not been drawn from general

population inmates across multiple, varying security level prisons until now. Recruiting samples

solely from infirmed or specialty institutions left a gap in the literature because a large

population that still grapples with aging and death within the prison environment, but may not be

sent to a specialty prison for targeted medical care, was excluded. This study also contributes to

the literature the largest sample of older men to date on this topic and explores factors that had

not yet been considered, most notably social support and deprivation.

Findings reveal that at least three factors are related to end-of-life preferences among

older, incarcerated men: race, experienced deprivation, and social support. The fact that black

men were four to four and a half times as likely to desire feeding tube and CPR as white men in

the hypothetical stroke scenario provides support for existing research on end-of-life planning

among older, incarcerated men. Specifically, black men appear to see greater value in utilizing

certain end-of-life options than white men (Phillips et al. 2009; Phillips et al. 2011). Teasing out

the specific reasons for why this is the case among older incarcerated men via strong qualitative

research designs will be an especially important avenue for future research.

Respondents in this study were also significantly less likely to desire feeding tube and

CPR options in the hypothetical stroke scenario as experienced levels of deprivation increased.

This finding offers support to a growing line of research that has begun to explore the

consequences depriving prison environments have on a host of behaviors, including inmate rule

156
violations and violence (Rocheleau 2013), recidivism (Johnson-Listwan et al. 2013), and

psychological well-being (Johnson-Listwan, Colvin, Hanley, and Flannery 2010). It is clear that

depriving prison environments not only have immediate consequences on the well-being and

safety of prisoners, they potentially have long term impacts on health and well-being, as

prisoners are making long-term health related decisions in the context of the depriving and

extreme conditions in which they are housed.

At least among this sample, the extent to which prisoners are exposed to depriving facets

of the prison system is related to the preferences prisoners have about certain end-of-life options.

It is worth noting that this finding does not suggest that these men are choosing palliative over

curative care, but rather that they are already so deprived that they do not want to extend life

unnecessarily. Thus, it is possible that the measure of deprivation is also tied to a degree of

fatalism among inmates.

I predicted that respondents with higher levels of social support would be less likely to

desire tube feeding and CPR in the hypothetical stroke scenario provided because they would be

more at ease about death due to the social support they have and perhaps more compelled to

protect their families from the implications of requesting life-extending measures. Interestingly,

respondents with higher levels of social support were actually more likely to desire tube feeding

and CPR in the hypothetical stroke scenario provided. This could be because prisoners are not

actually thinking about their own comfort with death or about how avoiding life-extending

measures may protect their families. Rather, perhaps the concerns respondents with greater

social support have center around how their loved ones will ultimately cope with their deaths

(i.e., Will my loved ones be okay; How will my death affect my loved ones; Will my family be

able to bury me?).

157
 We know from research in community populations that there is a relationship between

what familes want for patients and what patients want for themselves in terms of end of life care

(Oorschot et al. 2012) and that the ability to be involved in end of life treatment decisions is

important to the loved ones of patients (Robinson, Gott, and Ingleton 2014). Thus, it may be that

respondents with more social support have preferences for the end of life options they perceive

would best protect and minimize harm to their family. Dying in prison is particularly

stigmatizing, not only for the incarcerated but for the incarcerateds loved ones. Dying in prison

also tends to occur in a detached or isolated manner those who die behind prison walls often

miss opportunities to be surrounded by and say goodbye to loved ones. With these factors in

mind, it may be very important for inmates with social supports to authorize any treatment they

believe may offer a chance for survival in order to protect their loved ones or give them the

opportunity to be involved in end of life decisions for as long as possible.

In community samples we also know that patients and their family members struggle

between wanting to discuss end-of-life planning and just focusing on conversations about life as

they regularly would, so as to minimize any distress about the topic (Horne, Seyour, and

Shepherd 2006; Oorschot et al. 2012). Thus, it is possible that prisoners in this sample with

more social support preferred life-extending options only, as other possibilities may be

distressing to think about both personally and in terms of the implications such decisions could

have on loved ones. This relationship between social support and older inmate preferences for

end of life treatment needs to be explored further in future work.

This study has limitations. Convenience sampling was used so selection bias cannot be

ruled out. Since the study was first introduced at religious services, it is possible that men who

signed up were more religious than the average prisoner, for example. Further, the sample

158
consists entirely of Black and White men, so findings cannot be generalized to other racial

groups or to women. Since Hispanic men in particular make up a considerable portion of todays

prison population (see Carson 2014), it will be important for future researchers to make

concerted efforts to include this population in their designs. Finally, the results of this study are

based on respondents understanding of an end-of-life vignette, not an actual medical diagnosis.

Thus, it is possible that respondents actual preferences for end-of-life options could shift when

faced with a real as opposed to a hypothetical end-of-life prognosis.

Conclusion

Despite these limitations, this study offers new and important contributions to the

literature. This is the first time a sample of older prisoners housed across three different prisons,

each stratified by security level, was incorporated into a research design looking at end of life

preferences of older, incarcerated men. Studies that have investigated this topic thus far are

sparse and much is still unknown about the end of life preferences of older, incarcerated men.

Findings from this study do reveal that race, experienced deprivation, and social support are

significantly related to older incarcerated mens preferences for tube feeding and CPR treatment

options in the context of decision making surrounding end of life. These findings are important

because prisoners do not universally desire end of life options such as feeding tube and CPR.

There are things that prison administrators can do to increase the liklihood that prioner

preferences regarding end of life are honored, including the facilitation of early and regular

discussions about end of life between patients and medical providers, the implementation of

programs that minimize the barriers to involving loved ones, and hospice and palliative care

volunteer programs. These policies, as well as the exploration of additional factors that may

159
have an impact on prisoner preferences for end of life treatment options among more racially

diverse samples, will be important avenues for future research in the years to come.

160
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 CHAPTER 6

SUMMARY AND POLICY IMPLICATIONS

Summary of the Problem

The United States leads the world in incarceration rates, with 1 in every 100 adults

currently incarcerated in either prisons or jails (Walmsley 2007; International Centre for Prison

Studies 2015; Kaeble et al. 2015). Rates of incarceration saw dramatic shifts starting in the

1970s as mandatory sentencing guidelines, tough on crime stances, and life sentences became

normative responses to criminal behavior (Austin and Irwin 2000; Garland 2001; Nellis 2013;

Travis et al. 2014). These responses have remained popular spanning 4 decades, which has

fueled dramatic increases in budgetary spending (Kyckelhahn 2012) as well as a growing

reliance on private prisons to supplement state run correctional facilities (Carson 2015). With

more than 1.5 million adults throughout the U.S. now serving time in prisons alone (Kaeble et al.

2015), at costs of $28,323 on average per prisoner (Kyckelhahn 2012), state correctional

expenditures are exceeding 42 billion dollars. More than 30 percent of state prison systems are

also operating beyond their maximum capacities, some as high as 150 percent above capacity

(see Carson 2015).

Managing the sheer volume of prisoners, in addition to the financial costs of doing so, are

hefty challenges on their own. However, the problem does not end there. Years of research

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allow us to now confidently conclude that there are a range of inequalities and collateral

consequences that are tied to our heavy use of incarceration. The depth of these damages is

extensive and their impacts cannot be underestimated.

We know that incarceration perpetuates inequalities, as rates are concentrated among men

of color with little education (Pettit and Western 2004; Western 2006; Wakefield and Uggen

2010; Carson 2014). Incarceration also exerts a damaging blow on families, heightening risks

for relationship and marriage dissolution (Lopoo and Western 2005; Massoglia et al. 2011;

Turney 2015), increasing rates of debt (Harris et al. 2010) and unemployment (Western 2002;

Pager 2003; Pager 2007). Incarceration also leaves children with incarcerated parents at higher

risk for a host of mental health (Swisher and Roettger 2012) and behavioral problems (Clear

2007; Wildeman 2010; Murray et al. 2012; Swisher and Roettger 2012; Geller et al. 2012; Hagan

and Foster 2012). Neighborhoods face collateral damage as a result of incarceration as well. For

example, there is a transient population of individuals filtering in and out of prisons each year

(see Kaeble et al. 2015b), making rates of residential instability (Warner 2015) and homelessness

high (Metraux and Culhane 2006; Williams et al. 2010).

We also know that incarceration exerts a variety of negative consequences related to

health. Incarceration exposes its captives to stress-related illnesses and infectious disease

(Massoglia 2008), driving rates of Hepatitis C (Macalino et al. 2004; Binswanger et al. 2009),

HIV (Okie 2007; Wilper et al. 2009), and hypertension (Marushak and Berzofsky 2015), to name

a few. Incarceration is also tied to a host of other health problems, including severe impairments

(Schnittker and John 2007), chronic illness (Binswanger et al. 2009; Wilper et al. 2009; Harzke

et al. 2010; Maruschak and Berzofsky 2015), weight gain (Houle 2014), mental health problems

(Schnittker et al. 2012; Schnittker et al. 2014), accelerated physiological aging (Dawes 2002;

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Aday 2003; Loeb et al. 2008; Chodos et al. 2014), and early mortality (Binswanger et al. 2007;

Rosen et al. 2011; Patterson 2013).

The identification and understanding of the aforementioned collateral consequences has

arguably been one of the most important areas of inquiry in criminology over the last decade.

Our long-term and extensive reliance on incarceration has led to these and other damages that are

only recently becoming clear. More empirical attention is needed to understand them

completely. One area that has become important to comprehend, but remains underdeveloped, is

realizing the effects of incarceration on a new and growing population of captives: geriatric

prisoners.

Between 1993 and 2013 alone, the number of state prisoners 55 years of age and up

increased by 400 percent (Carson and Sabol 2016). This means that 1 in every 10 prisoners are

at least 55 years old. This class of older prisoners is now the fastest growing age group within

todays prison system, leading to serious problems for the future of corrections (Aday 2003;

Chettiar, Bunting, and Schotter 2012). For one, older prisoners cost approximately 3 times as

much to incarcerate as younger prisoners (Williams et al. 2012). Prisons were also never

designed with the geriatric prisoner in mind, making them challenging sites for implementing

quality geriatric medical services (Aday 2003). Even simple provisions common to geriatric

care, such as temperature adjustments, are difficult to accommodate in a prison setting (Reimer

2008).

As reviewed above, incarceration already serves as a potent risk factor for a number of

negative health outcomes. In addition, age and stress have an interactive effect on the immune

system, making prisoners particularly vulnerable to disease and early mortality as they age given

the high stress environments in which they reside (Graham et al. 2006; Patterson 2013). Coupled

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with the declines in health status and increased morbidity that tend to accompany aging in

general (see Adams and White 2004), prison administrators can anticipate that their aging class

of prisoners will get progressively sicker with more extensive health needs in the coming years.

It is important that empirical efforts are made to understand this emergent crisis in

corrections. This is particularly the case because scholars have already documented various

weaknesses in correctional health care. Many prisoners with chronic illnesses fail to receive

medical care during incarceration, for example (Wilper et al. 2009). Inconsistencies with the

provision of proper medications for prisoners is another documented problem (Williams et al.

2010b). In addition, despite increases in life sentences (Nellis 2013) and deaths among prisoners

55 years of age and older due to medical issues (Noonan et al. 2015), there are few programs in

place to address hospice or palliative care issues within prisons (Aday 2003; Linder and Myers

2007; Hoffman and Dickinson 2010). Notably, none of the three prisons included in this

research had hospice or palliative care programs on site. If these and other weaknesses are not

addressed, the aging prisoner population threatens to overhaul our correctional system, as it will

become more and more difficult to sustain over time with more economic and social

consequences emerging along the way.

It was my goal in this dissertation to shed light on a problem that thus far we know little

about. I wanted to gain an understanding for what it means to age in prison. To do this, I

addressed 3 different but related components of aging within the context of the prison

environment: overall health, chronic disease management, and end-of-life planning. Using

original data gathered from survey-led, quantitative interviews as well as qualitative accounts

with incarcerated men at least 50 years of age, I was able to provide some empirical

understanding regarding each of those 3 components. Although there are many additional

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aspects of aging, for example pain management and cognitive decline, the 3 addressed in this

dissertation offer a promising starting point. Below, I review the key findings of each of the 3

targeted areas.

Key Findings

Overall Health
In the first paper I analyzed how 3 secondary stressors specific to the day in and day out

experiences of prison life unemployment, social isolation, and deprivation are associated

with the health ratings of older inmates. This was important to explore, as most existing research

focuses on secondary stressors experienced post-incarceration and during reintegration rather

than on secondary stressors faced while incarcerated. Given the aging of the prisoner population

(Aday 2003; Chettiar, Bunting, and Schotter 2012) as well as the fact that 1 in every 9 prisoners

are now serving life sentences and will never again rejoin their communities (Nellis 2013),

failing to examine secondary stressors tied specifically to prison life constitutes an important gap

in the literature.

Two of the three stressors examined in the analysis, unemployment and deprivation,

successfully predicted the health ratings of older inmates at a statistically significant level. In

particular, unemployed inmates were more than twice as likely to report worse health as

employed inmates in the sample. This finding provides support for existing research which

identifies unemployment as a stressor that has powerful ties to health in community settings

(Wanberg 2012; Garacy and Vagero 2013; Pharr et al. 2012; Paul and Moser 2009; McKee-Ryan

et al. 2005; Artazcoz et al. 2004; Voss et al. 2004; Linn et al. 1985). It is likely that

unemployment was linked to worse health outcomes in this sample because, as with community

176
samples (see Marmot 2004), employment is tied to perceived social standing in prisons and

perceived social standing is influential of health. Prisons are already depriving (Skyes 1958) and

status stripping (Goffman 1963), so unemployment may exacerbate the marginalization prisoners

face by making the few goods and services that are available in prisons, such as phone calls with

loved ones and medical appointments, unattainable.

Prisoners in this study were also at significantly increased odds of reporting worse health

as exposure to deprivation increased. This finding offers support to an emergent area of work

that has started to identify a range of consequences that depriving aspects of incarceration create,

including higher rates of recidivism (Johnson-Listwan et al. 2013), reduced psychological well-

being (Johnson-Listwan et al. 2010; Slotboom et al. 2011; Marshall et al. 2000), increased rule

violations and violence (Rocheleau 2013), and suicide (Wolff et al. 2016; Huey and McNulty

2005; Dye 2010). The finding in this sample offers evidence that the deprivations of prison life

have long-term impacts not only on behavioral outcomes already supported by the literature, but

on health as well. Prisoners in this sample who reported less extensive exposure to the

deprivations associated with incarceration were arguably better adjusted to the pains of

imprisonment. These prisoners were less likely to report worse health. Conversely, prisoners

who reported more extensive exposure to the deprivations of incarceration were at heightened

risk of reporting poorer health statuses.

Chronic Disease Management

In the second paper I utilized qualitative data to understand how older prisoners

overcome the barriers involved with living in very restrictive and depriving conditions in order to

manage their chronic health conditions. This was an important area to explore because we know

177
very little about how aging prisoners grapple with chronic disease and attempt to maintain their

health during a time when personal choices are so limited. We particularly lack such

understanding from a theoretical perspective. Given the aging of the prisoner population (Aday

2003; Chettiar, Bunting, and Schotter 2012), as well as the high disease burden that prisoners

carry (see Macalino et al. 2004; Okie 2007; Rosen, Schoenback and Wohl 2008; Binswanger,

Krueger and Steiner 2009; Wilper et al. 2009; Binswanger et al. 2014), it is imperative that we

make efforts to better understand chronic disease management and health promoting behaviors

among older prisoners.

Results showed that among this sample of older prisoners, men worked hard to navigate

beyond the barriers involved with incarceration to find solutions to protect their health and

address their chronic health needs. Using the theoretical framework of cultural health capital

(Shim 2010), I found that prisoners made concerted efforts to modify food intake and dietary

behaviors, connect their health concerns to medical knowledge, and advocate for their medical

needs. Notably, these solutions operated most successfully when cultural health capital was

present. Without their use of lay and formal medical knowledge regarding the prison

environment, as well as their knowledge of how healthcare is organized within prisons, the men

in this sample would have likely been far less successful at managing their conditions.

The finding regarding the role that cultural health capital plays in prisoners management

of their chronic health conditions contributes to the literature by providing further evidence that

inequalities are reproduced in prisons (deViggiani 2007). Some prisoners bring cultural health

capital with them to prison, such as prior medical training, and some acquire the capital in the

prison itself, such as learning that working in the kitchen provides opportunities to substitute

unhealthy food items for healthier ones. Regardless of whether cultural health capital is brought

178
into the prison or learned in prison, however, access to health management opportunities are

structured by ones ability to access cultural health capital and put that capital to use.

End-of-Life Planning
Given the particular lack of empirical information we have on end-of-life planning

among prisoners (see Wion and Leob 2016), in the third paper I utilized a descriptive approach

to explore how 5 different factors might play a role in the end-of-life planning preferences of

older inmates. The 5 factors included in the analysis were race, death distress, age upon release,

deprivation, and social support. It was important to examine factors related to end-of-life

planning among prisoners not only because of how poorly we understand the end-of-life needs of

prisoners, but because the prisoner population is aging (Aday 2003; Chettiar, Bunting, and

Schotter 2012) and approximately 11 percent of prisoners are currently serving life sentences

(Nellis 2013). The fact that so many prisoners are aging and serving life sentences means that

many will eventually die behind bars and require care when they near the end of life. Current

estimates show us that the percentage of deaths of prisoners 55 years of age and up has increased

by an average of 8 percent each year since 2001 (Noonan, Rohloff, and Ginder 2015). It is

important that scholars make attempts to understand what older prisoners need as they approach

death so that correctional administrators and medical providers can consider policies that are

informed by data.

Three of the five factors examined in the analysis race, deprivation, and social support

successfully predicted the end-of-life preferences of older inmates in a hypothetical illness

scenario involving a stroke with no chance of recovery. For one, black men were 4 and 4.5 times

as likely as their white counterparts to desire use of a feeding tube and CPR in the hypothetical

stroke scenario, respectively. This finding is consistent with existing research that incorporated
179
small samples of less than 100 prisoners (Phillips et al. 2009; Phillips et al. 2011) as well as

research with community samples that found that black patients tend to want more aggressive or

curative focused care at the end of life when compared to their white peers (Johnson,

Kuchibhatla, and Tulsky 2008; Smith, Davis, and Krakauer 2007; Winter et al. 2007; Kwak and

Haley 2005; Bullock 2006). Given their already marginalized statuses, particularly in the

context of corrections, in which tremendous sentencing disparities exist (see Doerner and

Demuth 2010; Harmon 2011; Bales and Piquero 2012), black prisoners may choose end-of-life

options that will extend their lives for as long as possible as a form of assurance that medical

providers and prison staff will be compelled to do everything they can as opposed to

discontinuing medical care prematurely.

Respondents in this study were also significantly less likely to desire feeding tube and

CPR options in the hypothetical stroke scenario as levels of deprivation increased. This finding

compliments results found in paper 1, in which more exposure to deprivation as a stressor

predicted worse overall health among inmates in the sample. Here, prisoners were making long-

term health related decisions in the context of the depriving and extreme conditions in which

they were housed. Findings in both papers contribute to existing literature that cautions about

negative consequences that are brought about by exposing prisoners to such depriving

environments (see Johnson-Listwan et al. 2010; Johnson-Listwan 2013; Rocheleau 2013). At

least among this sample, prisoners who were more deprived were less likely to desire medical

options that would extend their lives, presumably because they were already so disenfranchised

that they did not wish to extend life unnecessarily. Given their extremely marginalized statuses,

it is possible that being able to say no to certain medical options is actually empowering, as so

few choices actually remain for these men. It is also possible that prisoners who were more

180
deprived were less likely to desire medical options that would extend their lives as a reflection of

them possessing a higher degree of fatalism.

Results also showed that prisoners who reported having more social support were

significantly more likely to desire use of a feeding tube and CPR in the hypothetical stroke

scenario. This finding was in the opposite direction predicted, but could be reflective of

prisoners with more social supports having more concerns about how their choices regarding

end-of-life care may impact their loved ones. We know from research in community settings

that there is a relationship between what familes want for patients and what patients want for

themselves in terms of end of life care (Oorschot et al. 2012) and that the ability to be involved

in end of life decisions is important to the loved ones of patients (Robinson, Gott, and Ingleton

2014). We also know that dying in prison is especially stigmatizing and generally occurs in an

isolated manner where loved ones are unable to be. Thus, it may be important for inmates with

social supports to authorize only treatments they believe may offer a chance for survival in order

to delay any pain their loved ones would endure.

Limitations and Future Directions

Despite the contributions offered in this dissertation, there are also some limitations

worth acknowledging, particularly because these limitations can offer guidance for future

research. First, convenience sampling was used. This means that results cannot be generalized

beyond the sample of inmates who participated in this study. It will be important for future

projects to incorporate random sampling where possible so that findings can be generalized to

larger groups. Other scholars have called attention to the lack of quality data we currently have

on criminal justice health research in general (see Ahalt et al. 2015) and on correctional health

181
care for older prisoners in particular (Ahalt et al. 2013; Wion and Loeb 2016). As stated by

Ahalt and colleagues (2013: 2015-2016),

improving older prisoner healthcare value requires data about cost, quality of care, and
health outcomes, but prisoners of all ages are excluded from most of the nations major
health datasets, and quality measures used by prisons vary across systems and facilities.
We need more government funded research, ideally that would support a national,

longitudinal database for gathering information regarding inmates health behaviors, their

experiences with the prison health care system, and their medical conditions. Doing so would

allow us to build knowledge over time and enhance our understanding of the long-term

consequences of imprisonment as they relate to health (Travis and Western 2014). This would

also overcome another limitation of this project, which is an inability to establish time-order due

to data being collected at one point in time only. This weakness is significant because results

must be seen as association specific rather than causal at this time.

The use of convenience sampling also means that selection bias cannot be ruled out. It is

possible that men who chose to participate in the research are not actually representative of the

average older inmate experience within the state department of corrections at hand. Since

recruitment efforts started with introductions during religious services, it is also possible that

respondents who participated were more religious than the average prisoner. However, this is

unlikely given that participation at religious events was merely one of several recruitment

components and 20 percent of the sample (n = 57) reported having no religious beliefs at all.

Yet, incorporating random sampling in future studies will help to ensure that the risk for

selection bias is diminished.

Another limitation is that the sample consists entirely of black and white men, which

means other racial groups, as well as women, were excluded. This is especially problematic in

182
regards to Hispanic men, as 1 in 5 incarcerated men are now Hispanic (Carson 2014). Future

researchers will need to make concerted efforts to include this group in particular so as to ensure

Hispanic men are not further marginalized moving forward. There may be health care problems

or concerns specific to this group that lack of data make us unaware of. This question will

continue to plague us if Hispanic prisoners are not given adequate opportunities to participate in

research. Importantly, this likely means that translators or interviewers who are multi-lingual

will be necessary, as will efforts to build trust between researchers and prisoners.

Although not a limitation per se, this study consisted of interviews with prisoners only.

While prisoners accounts are imperative to understand, there is another side to the issue of

health and aging in prison the perspective of medical providers. Our lack of research in this

area constitutes a sizable gap in knowledge, yet one that is crucial to understand. In order to

move forward with meaningful policy implications for correctional facilities, we must also

understand the constraints that medical providers in prisons are confronting. Typically, medical

departments in prisons are critically understaffed with limited resources and equipment. Some of

the prisoners in this study offered qualitative accounts whereby they acknowledged that

oftentimes the hands of the medical providers are tied because they are only allowed to authorize

so many specialty referrals in a month, for example, or because they can only prescribe

medications from a very narrow list. Exploring the perspective of medical providers empirically,

especially from a qualitative standpoint, will be an important area of inquiry to pursue moving

forward.

Policy Implications
Despite the limitations reviewed above, the findings in this dissertation offer some

preliminary guidance in terms of correctional health policy. Given the connection between
183
deprivation and health, chronic disease management, and end-of-life planning, if we want to

improve health outcomes for inmates it will be important to support policies that help to reduce

feelings of deprivation among prisoners. Although certain incarceration-specific deprivations are

unavoidable, such as loss of freedom, others can be alleviated by implementing promising

programming ideas. For example, policies that improve communication between managers and

correctional officers can help reduce correctional officer stress and burnout (Finney et al. 2013),

which may in turn offer a reduction in the number of conflicts between inmates and staff. Placing

an upper limit on the number of overtime hours correctional officers are allowed to work may

also be beneficial. I spent 13 months inside of these prisons and observed that it was very

common for correctional officers to log a great deal of overtime hours. Some officers saw this as

a perk because of the salary benefits, but the heightened stress and lack of sleep that such

circumstances create should not be overlooked.

Another promising idea is to find ways to increase employment and volunteer

opportunities for prisoners. Doing so offers potential for reducing isolation and boredom as well

as increasing perceptions of social standing and self-worth among inmates. In the context of the

state department of corrections in this study, unemployment had real consequences for inmates

who were interviewed. Thirty-nine percent (N = 110) were unemployed, which meant they had

budgets of only $12 per month from unemployment pay to purchase what they needed. At least

in this state, additional employment opportunities would provide inmates with enhanced abilities

to make medical appointments ($5 per visit), pay for medications ($5 per medication), and have

phone calls ($8 per call) or virtual visits ($30 per visit) with loved ones. The qualitative data

support the idea that prisoners want to work and are unhappy that they cannot due to the limited

number of jobs available within each prison. Thus, this may be one area where policy shifts

184
could have powerful implications. Prisoners would be happier, experience health benefits, and

have more of their time filled with prosocial activities, for instance.

One particularly promising avenue for increasing work and volunteer opportunities for

inmates is to incorporate inmate caregiver programs in prisons. Other scholars have recently

advocated for this option as well, finding that prisoners who provide care for their incarcerated

peers feel that the experience is transformative, that staff acknowledge benefits of inmates

serving as caregivers, and that mistrust of prison health care staff among inmates can be

diminished (see Wion and Loeb 2016). Given current weaknesses in the availability and

delivery of palliative and hospice care programming in prisons (Aday 2003; Linder and Myers

2007; Hoffman and Dickinson 2010; Burles, Peternelj-Taylor, and Holtslander 2016), this is one

policy that may assist correctional facilities a great deal as they move forward. As of 2010, there

were only 69 known prison hospice programs throughout the United States, and the majority

reported they could only accommodate 1 to 9 prisoners at a time in their respective programs

(Hoffman and Dickinson 2011). Being open to and increasing the number of inmate volunteers,

or providing paid positions for inmates in these programs, could help to increase capacity, which

will be increasingly important as the population of inmates continues to age. It is worth noting

that 78 percent (n = 219) of respondents in this sample expressed interest in becoming a

volunteer if a hospice program were to be created in the prison they lived in and many of those

men offered qualitative comments about how it would make them feel good to participate in such

a program.

Given the unequal distribution of cultural health capital among prisoners, and the

importance of having it to manage health, another suggestion for policy is to create opportunities

for prisoners to increase their access to cultural health capital. For example, prisons could train

185
peer health mentors who can work in tandem with medical providers so that even those without

cultural health capital have a resource for addressing their health concerns. Another option for

increasing cultural health capital is for the prison to allow community health advocates to visit

the prison and offer regular health seminars to educate prisoners about their medical conditions.

The medical providers staffed at the prisons have extremely large caseloads, and many

respondents commented about how they wanted to ask medical providers questions about their

conditions but were never given the time. Health seminars put on by volunteers, or having an

available team of peer health mentors, would help alleviate this issue and would be inexpensive

to implement.

Finally, there are things that prison administrators can do to increase the liklihood that

prisoner preferences regarding end of life are honored, including the facilitation of early and

regular discussions about end of life between patients and medical providers, and the

implementation of programs that minimize the barriers to involving loved ones. During

interviews, many respondents commented that they had never had a conversation with a medical

professional about their choices surrounding end-of-life or advanced care planning since being

incarcerated. Some explained that they had living wills in their respective communities prior to

entering prison, but were unsure of how to create a living will within the prison system. Many

also commented that they would like their families to be involved in decisions surrounding end-

of-life. Prison administrators and medical providers must begin to anticipate these concerns and

develop plans for addressing them as standard practice.

Conclusion
Our correctional system is nearing a crisis. The number of older prisoners in the United

States has been steadily increasing for over a decade. These prisoners cost substantially more to
186
incarcerate as their younger peers and carry with them a high disease burden. At best, these

prisoners will need assistance managing a multitude of chronic health concerns during

incarceration and at worst, they will ultimately die behind bars and require assistance with end-

of-life care. Those who are eventually released will bring their health problems with them to

their communities when they re-join them. In short, the financial and social costs of this

mounting problem are tremendous, and there is much we still need to understand moving

forward.

It was my goal in this dissertation to shed light on what it means to age in prison by

addressing 3 different but related components central to the experience of aging: overall health,

chronic disease management, and end-of-life planning. To do this, I spent 13 months facilitating

survey-led interviews with 279 older, incarcerated men across 3 prisons in one state. To my

knowledge, this is the first study to tackle the issue of aging in prison with such a broad

application, with a mixed-methods design, and with data gathered from prisons stratified by

security level. Scholars in criminal justice know that as we conduct more research, the collateral

consequences of mass incarceration are becoming more numerous. This dissertation provides

insight into the barriers of aging in prison as yet another collateral consequence and cautions that

more empirical attention and policies focused towards this problem are necessary.

187
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 APPENDICES

Appendix A: The Older Men's Health Program and Screening Inventory (Loeb 2003)

Read the list of health problems below and check the ones that you have.
_____ High blood pressure
_____ Heart problems
_____ High cholesterol/triglycerides
_____ Trouble hearing
_____ Vision problems
_____ Cancer
_____ Arthritis
_____ Osteoperosis
_____ Lung problems
_____ Urine problems
_____ Stomach/bowel problems
_____ Diabetes
_____ Depression
_____ Dental problems
_____ Other (please describe)_________________________
___________________________________________

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Appendix B: The Deprivation Scale/Prison Stresses (Rocheleau 2013)
How Hard Has Each of the Following Been for You?
Not Hard at All Very Hard
a. Missing family or friends 1 2 3 4 5
b. Missing certain activities 1 2 3 4 5
c. Conflicts with prisoners 1 2 3 4 5
d. Regrets about the past 1 2 3 4 5
e. Concerns about the future 1 2 3 4 5
f. Missing personal posessions 1 2 3 4 5
g. Boredom 1 2 3 4 5
h. Lack of privacy 1 2 3 4 5
i. Excessive noise 1 2 3 4 5
j. Quality of medical care 1 2 3 4 5
k. Missing freedom 1 2 3 4 5
l. Conflicts with staff 1 2 3 4 5
m. Not being able to make my own decisions 1 2 3 4 5
n. Quality of food 1 2 3 4 5
o. Environment where we eat 1 2 3 4 5
p. Cleanliness of the facility 1 2 3 4 5
q. Following prison rules 1 2 3 4 5
r. Overcrowded conditions 1 2 3 4 5
s. Concerns about my safety 1 2 3 4 5
s. Concerns about my safety 1 2 3 4 5

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Appendix C: The Death Distress Scale (Abdel-Khalek 2011)
Show how each item aplies or not to your feelings, behavior, and opinions by circling the appropriate number.
No A Little Moderate Much Very Much
Death Obsession
1. The idea that I will die dominates me. 1 2 3 4 5
2. I fail to dismiss the notion of death from my mind. 1 2 3 4 5
3. Thinking about death preoccupies me. 1 2 3 4 5
4. I find it greatly difficult to get rid of thoughts about death. 1 2 3 4 5
5. The idea of death overcomes me. 1 2 3 4 5
6. I have exaggerated concern with the idea of death. 1 2 3 4 5
7. I find myself rushing to think about death. 1 2 3 4 5
8. I think about death continuously 1 2 3 4 5
Death Anxiety
9. I am very much afraid to die. 1 2 3 4 5
10. It does not make me nervous when people talk about death. 1 2 3 4 5
11. I am not at all afraid to die. 1 2 3 4 5
12. I am not particularly afraid of getting cancer. 1 2 3 4 5
13. The thought of death never bothers me. 1 2 3 4 5
14. I fear dying a painful death. 1 2 3 4 5
15. I am really scared of having a heart attack. 1 2 3 4 5
16. The sight of a dead body is horrifying to me. 1 2 3 4 5
Death Depression
17. When I think about death, I lose interest in activities of daily life. 1 2 3 4 5
18. I lose interest in caring for myself when I think about death. 1 2 3 4 5
19. When death is on my mind, my body seems to lose energy and slow down. 1 2 3 4 5
20. The thought of death saps my energy. 1 2 3 4 5
21. It is hard to concentrate when death is on my mind. 1 2 3 4 5
22. When I think about death, even the easiest of tasks becomes difficult. 1 2 3 4 5
23. Death makes me feel discouraged about the future. 1 2 3 4 5
24. Death makes me feel hopeless. 1 2 3 4 5

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Appendix D: The Expectations Regarding Aging Survey ERA-12 (Sarkisian et al. 2005)
Please check the one box to the right of the statement that best corresponds with how you feel about the statement.
Definitely True Somewhat True Somewhat False Definitely False

Physical Health
1. When people get older, they need to lower their expectations of how healthy they can be. 1 2 3 4
2. The human body is like a car: when it gets old, it gets worn out. 1 2 3 4
3. Having more aches and pains is an accepted part of aging. 1 2 3 4
4. Every year that people age, their energy levels go down a little more. 1 2 3 4
Mental Health
5. I expect that as I get older, I will spend less time with friends/family. 1 2 3 4
6. Being lonely is just something that happens when people get old. 1 2 3 4
7. As people get older they worry more. 1 2 3 4
8. It's normal to be depressed when you are old. 1 2 3 4
Cognitive Functioning
9. I expect that as I get older I will become more forgetful. 1 2 3 4
10. It's an accepted part of aging to have trouble remembering names. 1 2 3 4
11. Forgetfulness is a natural occurrence just from growing old. 1 2 3 4
12. It is impossible to escape the mental slowness that happens with aging. 1 2 3 4

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