Running Head: HEAL ATLANTA PROJECT

Exploring Patient Perception of Barriers and Facilitators to Postpartum HIV Care Linkage:

HEAL Atlanta Project

Rosemary Kinuthia

Emory University Nell Hodgson Woodruff School of Nursing

HEAL ATLANTA PROJECT 2

Exploring Patient Perception of Barriers and Facilitators to Postpartum HIV Care Linkage:

HEAL Atlanta Project

Human Immunodeficiency Virus (HIV) medical care follow-up remains a significant

public health problem. Data from the Centers of Disease Control and Prevention (CDC) reports

that in the United States, only about 50% of persons diagnosed with HIV receive regular HIV

care (Centers for Disease Control and Prevention, 2013, para. 2). This global health issue

greatly impacts HIV treatment outcomes of the patients at the Grady Infectious Disease Program

(IDP) at Ponce De Leon Center, one of the largest, most comprehensive facilities dedicated to the

treatment of advanced HIV/AIDS in the United States (Grady Health System, 2015, para.1).

Most recent unpublished raw data from the clinic showed that despite addressing and

controlling for the typical known barriers to HIV care linkage such as cost of treatment and

access, only 48% of HIV-infected pregnant women that deliver at Grady Hospital follow-up at

the Grady Infectious Diseases Program (IDP) for HIV care within 6 months postpartum (A.

Sheth, personal communication, December 12, 2015). Delayed and poor linkage to HIV care

increases the risk for morbidity (Ulett, Willig, Lin, Routman, Abroms, Allison & Mugavero,

2009) and perinatal transmission of HIV during subsequent pregnancies (Camacho-Gonzalez et

al, 2015). For best outcomes it is important that individuals with HIV know that they are HIV

infected, link to and remain in HIV care, start and remain on ART, and adhere to treatment

(Mountain, Pickles, Mishra, Vickerman, Alary & Boily, 2014)

Addressing individual level as well as system level factors in order to reduce the barriers

to postpartum care engagement is significant in improving adherence to treatment and clinical

outcomes among HIV infected women after delivery (Buchberg, Fletcher, Vidrine, Levison,

Peters, Hardwicke & Bell, 2015).

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Definition of the Problem

Over 50% of HIV-infected pregnant women that deliver at Grady Hospital do not follow-

up at the Grady IDP for HIV care within six months postpartum (A. Sheth, personal

communication, December 12, 2015). Causes contributing to this problem are largely unknown.

Therefore the purpose of the HIV care Equity and Access through Linkage (HEAL) Atlanta

Project is explore the actual barriers and facilitators to linkage in HIV care after delivery at the

clinic in an effort to improve the health outcomes of HIV infected pregnant women.

A review of literature reporting findings from a similar problem was conducted to inform

potential causes of poor linkage to HIV care among postpartum women at Grady IDP. Buchberg

et al (2015) examined barriers to HIV postpartum care in underserved HIV positive women in

Southern United States. This research study identified lack of time, lack of social support,

transportation issues, and HIV related stigma as barriers to postpartum HIV care retention. A

qualitative study by Boehme et al (2015) examining factors impacting HIV care adherence that

was conducted in Alabama uncovered similar themes. Additional barriers to clinic visit

adherence identified in this study include clinic/copay expenses and duration of appointments

(Boehme et al, 2015).

Potential moderating factors supporting linkage to postpartum HIV care retention may be

attributed to knowledge about the importance of adherence to HIV care and having strong

relationships with providers (Buchberg et al, 2015). Boehme (2015) also found that intrinsic

motivation ranked highly as a facilitator for linkage to postpartum HIV care. Patients expressed

their desire to stay healthy and live long, as well as being present for their children.

Current evidence has shown that a mediating factor for the linkage to care issue includes

identifying actual barriers and facilitators to HIV care. Exploring patients perception of barriers
HEAL ATLANTA PROJECT 4

to postpartum HIV care follow-up and elements that support and enhance continuity of care

informs development of customized interventions to support HIV care linkage and retention, thus

improving health outcomes (Buchberg et al, 2015). Itislikelythatthetransformationofthe

linkagetoHIVcarepracticeissuewillrelyonaddressingsocialfactors/barriers(Baumanetal,

2013).

Needs Assessment

A needs assessment was conducted to determine the gaps (Issel, 2014) in postpartum HIV

care linkage at Grady Infectious Disease Program (IDP) at Ponce De Leon Center. The IDP is

one of the largest, most comprehensive facilities, dedicated to the treatment of advanced

HIV/AIDS in the United States. Since its founding in 1986, the center has had a long-standing

history of success in the HIV/AIDS arena and has therefore acquired an identity as well known

expert in the field. The outpatient center has received national recognition for expertise in the

management and treatment of HIV/AIDS (Grady Health System, 2015).

The target population includes HIVinfectedpregnantwomenwhoareandarenot

retainedinHIVcareafterdelivery. This includes women of childbearing age (approximately 15-

44 years old). Majority of the patients seen at the IDP clinic are usually enrolled in the Ryan

White HIV/AIDS program, which provides services to individuals who do not have sufficient

health care coverage or financial resources to cope with HIV disease (Health Resources and

Service Administration, n.d.).

Providers at Grady IDP identified normative need (Issel, 2014) demonstrated by the gap

in linkage to HIV care after delivery, and have expressed concern over how the lower than

desirable HIV care follow-up rates may impact health outcomes of the patients. Review of

medical records and evaluation of patient data confirmed that 52% of women that deliver at
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Grady Hospital do not follow-up at the Grady IDP for HIV care within 6 months post partum (A.

Sheth, personal communication, December 12, 2015).

A microsystem assessment conducted through informal interviews with providers and

staff at the IDP, and observation of processes in the system identified potential gaps in the Ryan

White funding enrollment process. It is likely that this gap may be a contributor to the poor

linkage in care at the IDP. HIV infected pregnant women typically receive care under Medicare

until 6 weeks postpartum. It is intended that these patients transition to care under the Ryan

White program after delivery, however patients must resubmit documentation (photo ID, photo

ID, paperwork documenting proof of Georgia residency and proof of income). Obtaining these

documents may not be easy for some of the patients who may not have a permanent address due

to being in transitional housing or lack transportation to navigate to the various agencies that

could provide the required documentation. The process could be tedious and time consuming for

patients without resources to facilitate these requirements. The microsystem assessment

identified the need to improve and streamline processes within the system, in order to make

navigation within with system less complex for patients receiving care at the IDP.

Exploring additional specific barriers at the IDP will identify areas for quality

improvement, facilitate practice change, and build capacity at the IDP in order to improve the

health outcomes of populations served at the clinic.

Process Theory

Essential elements of the HEAL Atlanta project includes the organizational plan, service

utilization plan and specification of outputs (Issel, 2014). Issel (2014) explains that the

organizational plan as the resources necessary for implementation and sustainability of the

project. Organizational plan inputs for the HEAL Atlanta project include:
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Human resources- Personnel needed to carry out the HEAL Atlanta program includes one

Emory Doctor of Nursing Practice (DNP) student that is a Registered Nurse with a

Master of Public Health background. The DNP student investigator will be responsible

for gathering background information, conducting a literature review, developing survey

instruments, conducting semi-structured phone interviews with recruited study

participants to collect data, and analyze data. The DNP student investigator will operate

under the mentorship and direction of a three-way partnership team that includes the DNP

student investigators project chair, a DNP prepared Nurse Practitioner and Emory School

of Nursing (SON) faculty, and two other Emory faculty members; a doctorally prepared

(PhD) Nurse Practitioner and SON faculty, and a Medical Doctor who is also an Emory

School of Medicine faculty. Both also serve as providers at the clinical partner site, Grady

IDP. By May 1, 2016 the exact number of personnel involved in the HEAL Atlanta

project will be confirmed by the DNP student investigator.

Informational resources- The DNP students personal computer and computers at the

Emory SON will be used for this project. A list of additional equipment/software that will

be utilized to record, transcribe and analyze the interviews conducted with participants

will be finalized by the DNP student investigator by May 1, 2016.

Monetary resources- By April 30, 2016 the DNP student investigator will apply for grants

to cover participant support costs. Gift cards in the amount of $25 will be provided upon

completion of the interviews. A total of 50 participants is targeted. Total= 50 participants

x $25 = $1250
Physical resources- Voice recorders and a transcription machine are needed for the

interview process. Additional material resources, facilities, supplies and equipment

required will be determined and secured by the DNP student investigator by May 15,

2016.
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Transportation- The DNP student investigator will use her personal vehicle to travel to

the IDP if needed. Additional transportation needs will be determined by May 1, 2016.
Managerial resources- The DNP student investigator in collaboration with the three-

partnership team will provide leadership in the management of the DNP scholarly project.

Additional managerial resources will be confirmed by May 1, 2016.

Time resources- By May 15, 2016 till the end of the project the DNP student investigator

will develop a time allocation plan demonstrating how she will utilize her time to

implement the project.

Organizational plan outputs for the HEAL Atlanta project include:

Information system- Beginning May 1, 2016 the DNP student investigator will meet

monthly with the project team and prepare monthly reports describing progress/updates.
Budget- If grant monies are awarded to support the HEAL Atlanta project, a budget will

be developed by May 15, 2016 by the DNP student investigator under mentorship of the

project team to ensure awarded funds will be used appropriately to meet the intentions of

the project. Other than potential grant awards to support the project, no revenue will be

generated from this initiative.

Timeline- By April 30, 2016, a program timeline will be developed by the DNP student

investigator and approved by the project team to ensure all activities from initiation of the

project to dissemination of findings occur systematically over the next 12 months.

Operations manual- By May 31, 2016 the DNP student investigator will have completed

development of an operations manual that will contain the policies, procedures,

guidelines, and protocols related to the HEAL Atlanta project.

Organizational chart- By May 31, 2016 the DNP student investigator will have completed

development of an organizational chart to depict the relationships among all individuals

involved in the project.

HEAL ATLANTA PROJECT 8

The service utilization plan constitutes the nuts and bolts of providing and implementing

the program and ensuring delivery of the intervention as planned to the target audience (Issel,

2014). Service utilization plan inputs for the HEAL Atlanta project include:

Participants- By September 15, 2016 patient care providers involved in this HEAL

Atlanta project at the IDP will have recruited up to 25 HIV-infected women who have at

least 1 HIV care visit by 90 days postpartum and 25 women who do not have at least 1

HIV care visit by 90 days postpartum and. Participants will be recruited until thematic

saturation is achieved. Patients will be excluded if they are less than 18 years old, non-

English speaking, or are unwilling to provide verbal informed consent.

Queuing- Interviews will take place on an appointment basis only; however by May 15,

2015 the DNP student investigator will have developed a plan to handle to interview wait

times/waiting lists in the event they occur.

Intervention delivery- By November 15, 2016, the DNP student investigator will conduct

50 semi-structured phone interviews with HIV-infected women who have delivered at

Grady Memorial Hospital and are now postpartum.

Social marketing- A social marketing method to reach the target audience will be

developed by the DNP student investigator by May 15, 2016.

Service utilization plan outputs for the HEAL Atlanta project include:

Units of service- A list including the amount of time spent interviewing all participants

(hours per participant) will be compiled by the DNP student investigator by December

31, 2016.
Service completion- A list including the number of postpartum HIV infected women

interviews for the project be compiled by the DNP student investigator by December 31,

2016.
Material produced- A participant survey instrument will be developed to conduct the

interviews by the DNP student investigator by May 1, 2016.

HEAL ATLANTA PROJECT 9

Workflow- A workflow plan to ensure work is done in a coordinated manner will be

developed by the DNP student by May 1, 2016.

For a summary of the HEAL Atlanta process theory elements see Appendix A and

Appendix B for diagrams showing the components of the organizational plan and services

utilization plan.

Effect Theory

The vision of the HEAL Atlanta project is to enhance the quality of life for all HIV

infected women that deliver at Grady Hospital and referred to the Grady IDP for postpartum HIV

care. The focus will be on elimination of perceived barriers and supporting factors that facilitate

continuity of HIV care to improve health outcomes. TheHEALAtlantaprojectthereforeaimsto

explore barriers and facilitators to postpartum HIV care linkage in HIV-infected pregnant women

that deliver at Grady Hospital do not follow-up at the IDP. The proposed intervention is to

conduct semi-structured phone interviews with up to 50 HIV-infected women who have

delivered at Grady Memorial Hospital and are now postpartum. Interviews will be conducted

with women who are and are not retained in HIV care after delivery.

In an effort to moderate the problem Grady IDP utilizes a multidisciplinary approach to

care, and the various departments at Grady IDP work collaboratively. The center provides access

to HIV health education, social workers, and case managers who assist the clients served by

connecting them to essential services such as housing and transportation. The IDP center also

houses several other agencies such as AID Atlanta and ADAP, which assist clients by providing a

broad range of HIV and AIDS services, and free medications for the treatment of HIV/AIDS.

Providing access to these resources in-house strengthens the capacity of the IDP.
HEAL ATLANTA PROJECT 10

In addition to the mediating factors identified in the review of literature, another factor

that could potentially mediate poor linkage to postpartum HIV care is the HEAL Atlanta project.

The project will explore the actual barriers and facilitators to postpartum HIV care linkage in

HIV-infected pregnant women that deliver at Grady Hospital do not follow-up at the IDP, and

make recommendations for an evidence-based intervention that would improve linkage to HIV

care in postpartum HIV infected women.

The risk of poor linkage to HIV care among infected pregnant women that deliver at

Grady Hospital and do not follow-up at the Grady IDP for HIV care within 6 months post

partum, indicated by only 48% of postpartum HIV care follow-up, is caused by lack of time, lack

of social support, transportation issues, stigma, lack of adherence knowledge, and cost but is

mediated by adherence knowledge, strong provider relationships, the desire to stay healthy, given

that a multidisciplinary approach for clinical care, Ryan White funding, resources such as AIDS

Drug Assistance Program (ADAP), housing, and AID Atlanta moderate the causes and that a

HIV/AIDS diagnosis and pregnancy exist prior to the causes.See Appendix C which illustrates

key elements of the HEAL Atlanta Effect.

Impact Theory

The impact goal of the HEAL Atlanta project is to identify the actual barriers and

facilitators to postpartum HIV care linkage in HIV-infected pregnant women that deliver at

Grady Hospital do not follow-up at the IDP. Another impact goal of the project is to make

recommendations for an intervention(s) that addresses the gaps identified. Intended outcome

objectives of the HEAL Atlanta project include:

HEAL ATLANTA PROJECT 11

By January 15, 2017, after completion of interviews, and transcription and analysis of the

qualitative data is finalized, the DNP student investigator will have a comprehensive list

of concepts identified as barriers and facilitator to HIV care linkage at Grady IDP
By January 31, 2017, after reviewing the concepts identified through the interviews, the

DNP student investigator will identify and recommend at least 3 evidence-based practices

that are effective in facilitating linkage to postpartum HIV care.

By February 15, 2017, the DNP student investigator will have a complete report on all of

the data and outcome objectives to share with the clinical partner.
By March 15, 2017, the DNP student investigator will develop a manuscript suitable for

the publication and dissemination of the HEAL Atlanta project outcomes.

Qualitative data obtained after conducting at least 50 semi-structured phone interviews with

postpartum HIV-infected women is nominal data. The outcomes of the project will be

disseminated to providers and the leadership at the Grady IDP to facilitate the implementation of

an evidence-based intervention. The goal is that the intervention will improve linkage to HIV

care within 6 months postpartum, and ultimately lead to improved health outcomes of the

populations served at the IDP, and perhaps other facilities with a similar problem on a local and

national level. (See appendix C for a diagram of the impact theory).

Conclusion

Identifyingpatientperceivedbarriersandfacilitatorsspecifictothepopulationatthe

GradyIDPwillfacilitatedevelopmentandapplicationofevidencebasedinterventionsthatwill

addresstheidentifiedgaps.TheHEALAtlantaprojectwillplayanintegralroleinfacilitating

accessandcontinuityofHIVcarebytransforminghowhealthservicesaredeliveredtoand

improvingthehealthoutcomesofHIVinfectedpostpartumwomeninAtlanta,GA.
 HEAL ATLANTA PROJECT 12

SuccessachievedatGradysIDPclinicasevidencedbyachievingdesiredoutcomes(improved

linkagetopostpartumHIVcare)willbedisseminatedtofacilitateplanforSCALEUp,

replication,learningorcontinuousimprovement.

Appendix A

Process Theory

Organizational Plan Service Utilization

Inputs Inputs Plan Inputs

DNP Student
Investigator + Eligibility criteria,
three-way enroll women
partners Outputs
Outputs

Wait list
Monthly
Computers +
meetings/ reports
software for
Amount of time
analysis of Social marketing spent interviewing
qualitative dta
each participant
IDP allotment
Time & SON Revenue (grants)-
Operations
Voice recorder,
leadership Project
Organizational
start
expense & end
totals Deliver Survey
# of instrument
women
Grants
(approx. 1 (if
year)
Transportation to manual
transcription chart
date intervention per Workflow
used plan
interviewed
for interviews
awarded)
IDP
machine protocol
HEAL ATLANTA PROJECT 13

Appendix B

GANTT Chart
HEAL ATLANTA PROJECT 14

Appendix C

Effect Theory

Causal Theory ImpactTheory

Lack of time
Improved
Lack of social support
HIV/ AIDS linkageto HIV Improved
Transportation issues
diagnosis carewithin 6 health
Stigma
Pregnancy months outcomes
Lack of adherence
postpartum
knowledge.
Adherence
Cost
knowledge
Duration of appt.
Strong
provider
Multidisciplinary relationship
approach Desireto stay
RW funding healthy
ADAP drugassistance
Housingassistance
AIDAtlanta
SW & CaseManagement
Health educators

Eliminatingbarriers and supportingfacilitators

(Speci ic intervention will beinformed by qualitative
interviews).

Intervention Theory

Figure1:Effect Theory for ImprovingLinkageto HIV Carefor PostpartumWomen at Grady IDP

HEAL ATLANTA PROJECT 15

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