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A support group intervention to facilitate young adults' adjustment

to cancer.

by Cleora S. Roberts , Lori Piper , John Denny , Gary Cuddeback


Psychological disturbance in response to the diagnosis of cancer is well
documented (Weisman, Worden, & Sobel, 1980). There is considerable
evidence that younger cancer patients suffer greater psychological distress
(Ganz, Schag, & Heinrich, 1985; Roberts, Rossetti, Cone, & Cavanagh, 1992;
Vinokur, Threatt, Vinokur-Kaplan, & Satariano, 1990). Cella and Tross (1986)
studied young adults (average age 31.1 years) who were survivors of
Hodgkin's disease and compared them to age-matched controls. The cancer
survivors were found to be more anxious, to have a poorer body image, and
to experience marked fears of recurrence. Many reported that their careers
had suffered. Twenty percent had sexual problems, and many had become
infertile as a result of treatments. The young cancer survivors were also more
socially isolated and had fewer intimate relationships than the age-matched
controls.
Both research studies and clinical observations point to the greater stress and
disruption that cancer imposes on young adults. Cancer treatments create life
changes that disrupt the normal psychological and social developmental tasks
of young adulthood. Gould (1972) and Levinson and Gooden (1985) cited
these developmental tasks as including establishing independence from
parents, getting started in a career, finding a mate, and becoming a parent.
Cancer diagnosis and treatment can interfere with developmental tasks in
multiple ways. Physical illness may make it necessary for the young adult
cancer patient to return to the parental home for care. Treatment expenses
and possible loss of employment may make the young person financially
dependent on parents as well. Education or career plans may need to be
postponed. The young adult who has married confronts somewhat different
problems. He or she may fear becoming less physically attractive to or a
burden on the spouse. The threat of infertility resulting from cancer
treatments is a source of concern for patients who have not completed plans
for a family.
The young cancer patient is confronted with an awareness of mortality, a
developmental issue not normally addressed until the sixth decade of life or
later. Even patients with a good prognosis experience considerable
psychological distress (Moos & Tsu, 1977). This suffering can create
resentment or grief over the possible loss of the opportunity to fulfill one's
dreams. Further, young adult cancer patients may worry about poor health or
dying, which alienates them from healthy peers, who usually avoid thoughts
or discussions of death.
In recent years psychosocial ontology researchers have begun to focus their

efforts on designing and evaluating psychological interventions to ameliorate


the stress of cancer and to assist survivors in coping with the disease. Most
intervention research has focused on techniques useful to patients with
particular types of cancer, such as breast cancer or melanoma, or in specific
stages of illness, such as newly diagnosed patients or those experiencing
recurrence of disease. Social workers caring for young adults with cancer
report that these patients feel that they have little in common with older
patients and that their concerns are specific to being young and struggling
with the consequences of the physical and psychosocial sequelae of cancer.
A survey of young adult cancer survivors regarding life changes and problems
they experienced following their cancer diagnosis and treatment revealed six
areas of concern: (1) anxiety about health, (2) loss of physical well-being, (3)
worry about children, (4) problems in relationships, (5) financial and
vocational concerns, and (6) feelings of unattractivenes (Roberts et al., in
press). Based on these survey results, a six-week, professionally led support
group intervention was designed to address the unique concerns of young
adults with cancer. The effectiveness of this intervention in reducing
psychological distress and enhancing the coping skills and quality of life of
these patients was evaluated. This article describes the intervention as it was
implemented, provides both qualitative and quantitative data regarding
effectiveness, and concludes with recommendations for social workers
planning similar support group interventions.
METHODS
Research Design
Our original plan was to recruit 20 cancer survivors ages 18 to 35, to pretest
all participants, then to randomly assign 10 of them to begin treatment and
assign the remaining 10 to a waiting list control group. The controls would
begin group treatment six weeks later. Despite intensive communitywide
recruitment efforts, only seven participants were located who were able to
attend the first series of group meetings. Therefore, a one-group pretestposttest design was used. An additional seven participants attended the
second series of sessions begun three months later.
Participants
Participants ranged in age from 24 to 34 years. Most were women who lived
with a spouse or partner. Nine of the 14 were unemployed or disabled. Most
were diagnosed within the past two years, and the type of cancer varied
widely. Eight of the 14 had completed therapy. Table 1 gives further
demographic and treatment information.
Procedures
Oncology social workers in a cancer center and three community hospitals
were asked to discuss the support group and to refer interested patients.

Table 1. Demographic and Clinical Characteristics of Sample


(N = 14)
Characteristic

Gender
Female
Male

9
5

Marital status
Single, live alone
Single, live with partner
Married, live with spouse
Other

1
4
8
1

Employment status
Employed
Unemployed or disabled

5
9

Ethnicity
White
Native American
African American

12
1
1

Time since diagnosis


Less than two years
More than two years

11
3

Type of cancer
Breast
Gynecologic
Leukemia
Lymphoma
Marfan's syndrome
Melanoma

4
1
4
3
1
1

Treatment status
Therapy completed
Under observation
Active chemotherapy

9
2
3

Mean age, 29.7 (SD = 3.56)


The research assistant contacted all patients to provide more information
about the meetings. The instruments and informed consent forms were mailed
to patients to complete and bring to the first meeting. At the last meeting,
posttest measurements were distributed to be completed and returned by mail
one to two weeks after the last session. Participants were reimbursed $15 for
each meeting they attended and an additional $15 for completing the posttest
measurements. The purpose of the reimbursement was to defray expenses for
transportation, baby-sitting, and so forth and to encourage regular attendance
so that the effectiveness of the complete intervention could be assessed. The
research assistant was introduced at the initial group meeting as a participant
- observer. He attended all meetings and recorded process notes, which were
made available for review by group members. Instruments
The Profile of Mood States (POMS) (McNair, Lorr, & Droppleman, 1971) consists
of 65 items or symptoms; patients indicate on a five-point agreement scale
(not at all to extremely) the extent to which they experienced each symptom
during the preceding seven days. The POMS has six subscales: tension anxiety, depression - dejection, anger - hostility, vigor - activity, fatigue inertia, and confusion-bewilderment. A total mood disturbance score sums the
scores of the six factors (weighting vigor negatively) and was used in this
study. Internal consistencies of the six subscales in normative samples were all
near .90 or above.
The Cancer Rehabilitation Evaluation System (CARES) (Schag & Heinrich,
1988), designed specifically for cancer patients, is a 45-item scale with five
subscales: physical, psychosocial, medical interaction, marital, and sexual
problems. The items are statements that patients respond to using a five-point
scale (not at all to very much) indicating how much this statement applied to
them during the past month. A global score combines the five subscales. The
CARES has been used with more than 2,000 cancer patients and has
established validity, reliability, and patient acceptance.
The Ways of Coping Checklist (Revised) (WCCL-R) is a 68-item scale developed
by Folkman and Lazarus (1980) to assess the use of different coping strategies
in response to specific stressors. Vitaliano, Russo, Carr, Mauiro, and Becker
(1985) improved the scale by administering it to a large sample of medical
students (N = 425) and factoring the item responses. Vitaliano et al. found
strong evidence for the construct and concurrent validity of the revised WCCLR. Alpha coefficients ranged from .74 to .88. In responding to the WCCL-R,
participants are instructed to focus on their most serious stressor, which in the
current study was cancer. They then rate how frequently they use each of the
43 coping responses using a four-point scale (never used to regularly used).
The five empirically derived WCCL-R scales are problem focused (15 items),
avoidance (10 items), wishful thinking (eight items), seeks social support (six
items), and blamed self (three items). Of particular interest in this study was

the seeks social support subscale, because it was hypothesized that group
participation would increase use of this coping strategy.
Intervention
The intervention used standard group therapy techniques to provide
psychological support, establish group cohesion, and emphasize the
universality of young adults' problems (Yalom, 1970). Additionally, we
incorporated psychoeducational techniques such as providing information,
teaching stress management, and discussing problem solving. This structured
intervention was described by Fawzy et al. (1990) in their successful
structured six-week intervention with cancer patients. We followed the format
of the Fawzy et al. model (number of meetings, 90-minute length, introduction
of specific topics at each meeting, and allotment of time for therapeutic group
interaction and support). However, the content of the presentations was
tailored to the needs of young adults with cancer. The group was cofacilitated
by a female licensed clinical social worker and a male social work graduate
student. Meetings were held on weekday evenings, and light refreshments
were served. Some minor changes were made for the second series of
meetings (group B) on the basis of observations made during the first series
(group A).
Session 1: Anxiety about Health. Recognition by group members that anxiety
about health and fear of recurrence are realistic concerns shared by cancer
survivors was the goal of the first session. Group members assembled at the
designated meeting site and began conversations among themselves before
formal introductions were made. The group facilitators and the research
assistant were introduced, and their roles were explained. The facilitators
emphasized that excessive anxiety can be managed through the use of
relaxation and visualization techniques. The group was led through a
relaxation and visualization exercise by a member of the interdisciplinary
team. Members responded positively to these exercises. However, one
member stated,"I felt funny closing my eyes and doing this in front of people I
don't even know." Following the relaxation exercise, the cofacilitators directed
a discussion concerning the relaxation exercise. Without exception, the group
members found the exercise to be valuable. Group members offered
alternative methods of relaxation they found helpful.
Following the exercise and discussion of relaxation, the members introduced
themselves by giving their name, age when diagnosed, date of diagnosis, type
of treatment, marital status, number of children, and employment status. The
group was attentive and supportive while each individual spoke. Many of the
members also discussed how cancer had affected their lives. One member
stated, "I don't take anything for granted anymore," and others strongly
agreed. Another member commented, "My sister really minimized my
experience and downplayed what I had been through with my cancer and
treatment and all." This statement generated much discussion as the group
members shared similar experiences and validated their common bond. The

cofacilitators asked the group members about the support they received from
family and friends. All the members contributed to this discussion.
In this meeting as in others, the group often discussed topics - without
prompting - such as insurance, financial assistance, treatment, self-advocacy,
and relationships. One member was scheduled to go into isolation for
treatment the following day. Those who had been through isolation offered
reassurance. The cofacilitators ended the group meeting about 30 minutes
after the scheduled 90 minutes. Many of the group members stayed and
continued to talk after the group had formally ended.
Session 2: Anxiety about Health and Loss of Physical Well-Being. The goals of
session 2 were to continue discussion of management of health-related
anxiety and to focus on physical well-being by presenting strategies to
minimize fatigue, improve sleep habits, and pace activities. At this and
subsequent sessions, the facilitators began by asking how the week had gone,
giving members the opportunity to discuss current anxiety-laden issues such
as results of a biopsy, treatment progress, or pressing financial and insurance
problems. Following this dialogue, the cofacilitators introduced the topic of
discussion. The group members discussed difficulty in falling asleep, and each
identified problems with sleep experienced at one time or another since the
cancer diagnosis. One member observed that she had a lot of anxiety and
restlessness before undergoing treatments and procedures, which all agreed
was a universal reaction.
The cofacilitators presented an outline for good sleep hygiene. The group
members discussed these ideas and then moved on to a more general
discussion about how cancer had changed their lives. One commented, "I
never wanted to go out of the house." Others shared similar feelings and
validated the disruptive nature of the disease. One member vowed, "I will not
be controlled by my cancer. It is part of me, but it is not who I am." This
statement elicited emphatic approval and agreement. Some members
verbalized their belief that the lifestyles they led caused them to develop
cancer, but others strongly disagreed. One member stated, "My cancer has
really caused me to take inventory of my life. I don't get stressed out about
little things anymore." The group ended with a discussion of how cancer
helped them develop more meaningful lifestyles.
Session 3: Worry about Children. A medical oncologist with a warm
interpersonal style was the invited speaker for this session. The speaker asked
members to introduce themselves and encouraged them to choose the topics
for discussion. They asked questions concerning cancer and fertility, genetics,
and the chances of the cancer being passed on to the next generation. Many
of the members asked if their chemotherapy treatments could affect their
fertility. One member who was pregnant asked if chemotherapy and radiation
were harmful to her developing fetus, and others also asked questions
concerning the dangers of radiation and chemotherapy. The need for medical
information was expressed several times.

For group A, the physician presentation was followed by a social worker's


presentation on how to communicate with children about cancer. The
members in group A were less attentive to this presentation and asked fewer
questions afterward. At the end of the session, members did not stay and talk
as they usually did. The facilitators felt that two presenters in one session
overwhelmed the members and left no time for group interaction. Therefore,
only the physician was scheduled for this session for group B, and its members
participated fully and asked many questions.
Session 4: Financial and Vocational Concerns. A representative from the Social
Security Administration was invited to this session. Members were asked to
describe their financial or vocational concerns. The discussion addressed
problems such as eligibility for disability benefits, returning to work, and
medical insurance coverage. Also, a brief outline of the different social
security programs available was provided. Members asked questions
concerning Medicaid, Medicare, disability, work incentives, amount of money
they could make while maintaining benefits, and whether benefits were based
on family income. Other questions regarded the application and appellation
process and the length of time it takes to get the first payment after being
approved for benefits. Members agreed that the speaker and the information
provided were very helpful.
Session 5: Problems in Relationships. Group A watched portions of a videotape
concerning communication and problems in relationships. In group B,
however, the tape was not used because the facilitators found that the group,
which had established good cohesiveness by this point, did not need a prompt
to begin discussions of relationships. Each group member was asked to
describe the reactions of family and friends to their cancer diagnosis and
treatment. Some members reported that they received too much support and
too little private time. Other members reported that some friends and family
members withdrew or experienced difficulty in communicating after the onset
of cancer. One member stated, "A good number of my friends never discussed
it with me. They just kind of dropped out." Another member stated, "I really
found out who my friends were."
The members expressed positive feelings about the valuable support they
were receiving from the group experience and verbalized a desire to reach out
to other young cancer survivors. In contrast, one member expressed
frustration at being called on to talk to other young adults with cancer at times
when she had only enough energy to meet her own needs. Another member
stated, "I feel kind of cheated. I am aging prematurely. I wanted to have
children, but the cancer robbed me of that opportunity."
Both positive and negative relationships with doctors and nurses were
discussed. All group members unanimously agreed that they did not get
enough information from their doctors. One member stated, "My doctor got
frustrated with me at times. I would not let him leave the room until all of my
questions were answered." Group A ended with a discussion concerning the

differences between men and women as patients and information seekers.


Session 6: Feelings of Unattractiveness. Group A participated in two art
exercises. The first involved drawing things that described themselves. The
drawings were discussed with an emphasis on positive self-esteem. Next, the
group participated in an exercise with clay. Members were asked to mold clay
into small pots. The leaders emphasized that each individual pot would be
different, yet still valuable. This exercise led to a discussion of feelings of
unattractiveness. Participants shared experiences of being disfigured or
physically affected in some way as a result of their cancer treatment. A
common experience was the loss of hair as a result of chemotherapy or
radiation.
Members of both group A and group B decided to bring in food to share for
their final meeting. Group A was resistant to termination and expressed
dissatisfaction that the group could not continue to meet. They decided to
continue to meet informally at a local restaurant. The cofacilitators decided to
spend more time on closure and termination during group B by introducing the
topic at the fifth session and allowing more time to discuss feelings of loss at
the sixth and final session.
Additional Meeting. When the second series ended and after posttest data
were collected, members of both groups were invited to a joint meeting. Eight
young adults and the cofacilitators attended. After introductions, and with no
prompting from the facilitators, the group members discussed their common
concerns and their desire to continue meeting and to reach out to other young
adults with cancer. The facilitators distributed a list of telephone numbers and
provided information about an upcoming statewide conference for cancer
survivors. It was suggested that the young adults might wish to arrange a
special interest group meeting at that conference.
RESULTS
Of the 14 subjects who completed pretest and posttest measures, three
attended three or fewer meetings and thus were eliminated from the data
analysis. Matched-pair t tests were used to analyze changes in pretest and
posttest scores. With this very modest sample size (N = 11), statistically
significant results would be difficult to achieve; therefore, the significance
level was established at .10. Significant improvement was made on the
subscales of fatigue (p = .072) and confusion (p = .058) and in total mood
disturbance (p = .080) (Table 2).
Pretest and posttest scores on the WCCL-R revealed no significant changes in
coping mechanisms. Although group members expressed many positive
feelings about the support they received from the group, their scores on the
seeks social support subscale did not show significant change.
Analysis of CARES scores revealed a significant change on the medical
interactions subscale (p = .031) and changes approaching significance on the

psychological symptoms subscale (p = .114) and the total score (p = .14).


Areas of Helpfulness
Group members were asked in what ways they felt their support group
experience was helpful. They identified four major areas of helpfulness. These
therapeutic mechanisms and illustrative comments are as follows:
Universality of Shared Experiences.
* "... to hear we all have similar problems."
* "It helps to talk to other young people going through the same thing."
* "Seeing someone who has gone through some of the same things makes you
feel like you belong."
* "... helped me realize I wasn't the only person living with cancer."
Meeting Cancer Survivors in Own Age Group.
* "... finding people closer to my age."
* "... nice to network with other cancer patients my age."
* "It makes you feel like you belong and are not the only one in the world to
have dealt with something so scary in life and at such a young age."
Therapeutic Group Atmosphere.
* "... easy to talk to everyone."
* "... allowed me an arena in which to convey my thoughts about my
situation."
* "... provided opportunity to ventilate without worrying about being judged."
* "... helpful and therapeutic to talk to people who understood my situation
firsthand."
* "... knowing there are people willing and able to provide support."
Receiving Information.
* "It answered a lot of questions that were bothering me."
* "Topics were very informative."
* "... gave me a better insight into different side effects of cancer."
* "... enjoyed having different speakers to keep us from talking about the same
things."
Table 2. t Test Analysis of POMS Pretest and Posttest Scores

(N = 11)
Score
M

Subscale

Difference
SD
M
SD

Tension-anxiety
Pretest
Posttest

9.64
8.27

6.02
5.37

1.36

4.08

1.11

.147

Depression
Pretest
Posttest

12.73
13.54

11.82
13.01

-.82

5.64

-.48

.321

13.64
12.73

12.79
10.64

.91

9.62

.31

.380

13.00
13.18

6.29
5.58

-.18

5.08

-.12

.454

10.18
7.18

6.27
7.44

3.00

6.28

1.59

9.72
7.82

5.97
5.46

Anger
Pretest
Posttest
Vigor
Pretest
Posttest
Fatigue
Pretest
Posttest

.072

Confusion
Pretest
Posttest

1.91

3.67

1.72

.058

Total mood disturbance


Pretest
Posttest

68.91
57.45

38.89
32.97

11.45

24.98

1.52

.080

Members were also asked how the group could have been more helpful. Five of
the 14 participants indicated that they would make no changes to the format;
others suggested allowing more opportunity for discussion and fewer formal
presentations. Overall Assessment of Goal Achievement
Another approach to analysis of results is to synthesize the quantitative
measures and qualitative observations, including members' feedback, and
relate these aggregated findings to the six topics the group was designed to

address. How successful and in what manner was the support group
intervention in meeting its objectives?
Anxiety about Health. Group members showed improvement in the fatigue and
confusion subscales of the POMS. Further, they noted in their posttest
evaluations that receiving information about cancer and treatments was
helpful.
Loss of Physical Well-Being. This topic is closely related to anxiety about
health; therefore, the above findings apply. Chronic fatigue and lingering
effects of treatment are common in cancer patients. Perhaps the greatest
value of the intervention was helping the group members realize that their
diminished sense of physical well-being was "normal" and shared by their
peers.
Concern about Children. The question-and-answer session with the medical
oncologist regarding fertility was very well received. General discussion of this
sensitive information in a group setting may be less anxiety producing than an
individual consultation.
Problems in Relationships. The impact of cancer on relationships with spouses,
family, and friends was a recurrent theme of group discussion. Our data could
not offer definitive answers as to whether or how the support group experience
alleviated interpersonal problems. However, it is clear that participants valued
the supportive relationships they formed with one another.
Financial and Vocational Concerns. Group members were appreciative of the
information they were given on disability benefits and vocational rehabilitation.
The opportunity to ventilate and to share frustrations about derailment of
career plans may have had as much therapeutic value as the factual
information.
Feelings of Unattractiveness. The exercises used to promote self-acceptance
appeared helpful but may have been superfluous. Concern about personal
appearance was spontaneously addressed at the first meeting by group
members who, on introduction to a member wearing a hat, began to share
their own experiences with baldness. The universality of the hair loss
experience was openly discussed and joked about. Group members' mutual
acceptance of altered appearance appeared to be therapeutic.
CONCLUSIONS
The positive changes in psychological well-being after this six-week structured
group intervention were gratifying and indicate that continued research with a
larger sample is warranted. With no control group, a possible threat to the
internal validity of this experiment is maturation; the young adults might have
had less distress merely with the passage of time. However, the study by
Fawzy and colleagues (1990) showed improvement on the POMS in the
intervention group but no change in the control group, strengthening our
conclusion that maturation was not responsible for the decrease in

psychological symptoms. On the other hand, a brief intervention such as this


one appears to have no effect on coping mechanisms or overall quality of life.
The ease and rapidity of the formation of group cohesion underscored the need
for a support group for this relatively small and frequently isolated cohort of
cancer survivors. The use of cofacilitators who represented both genders and
who were themselves young adults was likely a factor in recruiting and
maintaining group members.
PRACTICE RECOMMENDATIONS
Intensive advertising, recruitment, and planning efforts are needed to
implement a support group for young adults. We recommend expanding the
intervention to eight weeks with one session for introductions and one session
for termination. A less-structured format with more time and emphasis on an
expressive or social support model yet loosely organized around the six topics
is recommended. A recent study reported by Evans and Connis (1995)
demonstrated more positive long-term changes in cancer patients using an
eight-week social support model when compared to a. cognitive - behavioral
model of the same duration.
A closed-ended group with an attendance contract promotes group cohesion
and reduces members' anxiety when a member does not attend. This anxiety
is found in all groups but is exacerbated in a cancer survivors group, because
group members fear for the absent member's physical well-being. However,
requiring an attendance contract is not always feasible with patients who may
be undergoing treatments, may have to travel considerable distances, or may
have concomitant stressors in their lives that preclude regular attendance. We
suggest that telephone conference calls be used to allow off-site participation.
If this option is available, it seems reasonable to ask all participants to agree to
be present or to participate by telephone in each session.
Faced with staff reductions and increased workloads, health care social workers
who facilitate support groups may find it increasingly necessary to adopt
time,limited models such as this one. A major advantage is the cost-efficiency.
However, it is difficult to deal with the resistance to termination and the
feelings of guilt about "turning away" clients who want and need services.
We feel, however, that there are some previously unrecognized advantages to
clients of participation in a time-limited group. By starting at the same point in
time, all group members are on an equal footing, and the leader does not have
to struggle with integrating new members into the core group. Further, all
members can be screened to ensure that they are in relatively good health.
Thus, it is unlikely that the group will lose a member during the intervention.
Cancer support group facilitators frequently find that attendance and
membership dwindle over time because of loss of interest, poor health, and
death of members. It is arguable whether valuable staff resources can be
allocated to support groups that are very poorly attended. New recruits may
feel uncomfortable attending a group with only one or two members. Further,

in the case of a group losing members to death, a first-time attendee seeking


support and hope can easily be frightened away by discussion of the death of a
member. Unlike the open-ended group, the time-limited intervention virtually
assures all members a positive group experience, which can be repeated in
future group involvement if the clients seek it.
Clinical social workers vary in their interest, experience, knowledge, and skill in
facilitating support groups. This structured intervention was successfully
implemented by facilitators who had relatively little prior experience with
cancer support groups. Both found it rewarding and plan to lead similar groups
in the future. We encourage other clinicians to design, implement, and
evaluate similar interventions targeted at other subgroups of cancer patients.
Social workers, the professionals who organize and lead the majority of support
groups for cancer patients, should take a leadership role in research on
treatment effectiveness as well.
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Cleora S. Roberts, PhD, ACSW, is associate professor of social work, University
of South Florida, and research social worker, H. Lee Moffitt Cancer Center and
Research Institute, 12902 Magnolia Drive, Tampa, FL 33612-9497. Lori Piper,
LCSW, is clinical social worker II, Department of Psychosocial Oncology, H. Lee
Moffitt Cancer Center, Tampa, FL. John Denny, MSW, and Gary Cuddeback,
MSW, were student interns, University of South Florida School of Social Work,
at the time of the research project. This research was supported by the
American Cancer Society, Florida Division.
-1Questia Media America, Inc. www.questia.com
Publication Information: Article Title: A Support Group Intervention to
Facilitate Young Adults' Adjustment to Cancer. Contributors: Cleora S. Roberts author, Lori Piper - author, John Denny - author, Gary Cuddeback - author. Journal
Title: Health and Social Work. Volume: 22. Issue: 2. Publication Year: 1997. Page
Number: 133+. COPYRIGHT 1997 National Association of Social Workers;
COPYRIGHT 2002 Gale Group