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A Self-Management Program For Adolescents and Children With Renal Transplantation
A Self-Management Program For Adolescents and Children With Renal Transplantation
Journal of Clinical Psychology in Medical Settings pp955-jocs-471162 August 21, 2003 14:22 Style file version June 24th, 2002
Journal of Clinical Psychology in Medical Settings, Vol. 10, No. 3, September 2003 (°
C 2003)
165
1068-9583/03/0900-0165/0 °
C 2003 Plenum Publishing Corporation
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Journal of Clinical Psychology in Medical Settings pp955-jocs-471162 August 21, 2003 14:22 Style file version June 24th, 2002
Renal Disease (ESRD) in order to increase the other group members. In addition, we hoped to al-
involvement of adolescents with renal transplants low participants the opportunity to practice the self-
in the management of their condition and to decrease management skills they were taught with members of
the risk for noncompliance with treatment regimen. the project team.
The goals of the program were for the adolescents: For practical and conceptual reasons, the pro-
(1) to become partners with their physician and med- gram called for the inclusion of patients and their
ical team in the management of their transplant; (2) to families. This strategy was adopted because, on the
limit the impact that the renal transplant has on their practical side, most participants were not old enough
lives; and (3) to gain confidence in their ability to help to drive to the sessions by themselves. Incorporat-
manage the transplant. A secondary objective of the ing parents into the program created an experience
intervention was to reduce the risk of noncompliance in which both parent and child could become in-
with medical regimens. vested (Creer et al., 1988). Conceptually, there is
significant support for the efficacy of involving par-
METHODS ents in intervention strategies (Anderson & Coyne,
1993; Iannotti & Bush, 1993; Johnson, 1993). Many
Procedure authors suggest that efforts to improve adherence
should consider and address environmental and so-
The intervention program used in this project cial influences. Because parents influence their child’s
was adapted from asthma self-management programs health behaviors in many ways (e.g., direct training,
(Creer, Backiel, Ullman, & Leung, 1985a, 1985b; supervision of health behavior, the parent–child rela-
Creer, Kotses, & Reynolds, 1991a, 1991b) which had tionship; Brooks-Gunn, 1993), their presence is cru-
been proven effective in increasing self-efficacy, im- cial if effective change in their children is to occur. In
proving compliance with medication regimens, and addition, education, counseling, and support for par-
lowering health care costs (Kotses et al., 1995; Taitel, ents of chronically ill children are also seen as impor-
Kotses, Bernstein, Bernstein, & Creer, 1995). These tant (Doherty, 1994; Iannotti & Bush, 1993; Reynolds,
programs were altered with the assistance of the pedi- Garralda, Postlethwaite, & Goh, 1990).
atric nephrology team at Columbus Children’s Hospi- Results from previous studies (see articles by
tal to address the special needs of the pediatric renal Siegal, Mahan, & Johnson, 1994, and the chapter by
transplant population. Issues involved with effective Schweitzer & Hobbs, 1995, for a complete review)
presentation and communication were also consid- suggested specific dynamics that needed to be con-
ered. The aim of the program was to provide infor- sidered when designing an intervention program for
mation, support, and an opportunity to practice self- children and parents. For example, a key issue for chil-
management skills related to renal transplantation. dren and adolescents with renal transplants is their
The assumption was that the teens, if not already in relationship with their parents. Children with chronic
charge of their health care, must be responsible for conditions often display reduced social interaction,
their own treatment; self-management training pro- and lack of support from their peer group. Further-
vided them the knowledge and the skills required to more, many have overprotective parents and/or show
assume that responsibility. a lack of parent–child individuation. Children with re-
The program was designed to fit into two 4- nal transplants may also be faced with the knowledge,
hr sessions. Travel time for participants made the and sometimes a sense of guilt or responsibility, that
original format of eight 1-hr sessions (Creer et al., one of their parents donated the kidney that now must
1988; Kotses et al., 1995) infeasible. By the same to- be cared for by the child. These issues must be ad-
ken, individuals—especially adolescents with little en- dressed with both patients and their parents if change
thusiasm for such programs—have limited attention is to occur. It is also important to review and prac-
spans; thus, it was also unlikely that marathon sessions tice communication skills because poor communica-
would be effective in providing self-management tion within a family has been associated with reduced
training. Creer et al. (1988) had faced a similar prob- compliance (Brooks-Gunn, 1993).
lem in conducting a program in a remote part of Col- For these reasons, the current program (Meade,
orado and had successfully adopted the same strat- Mahan, & Creer, 1996a) was designed for families
egy. Two sessions, in particular, allowed participants not only to review the information and to learn
to establish a sense of familiarity and support with self-management skills, but to allow patients and
P1: GCR
Journal of Clinical Psychology in Medical Settings pp955-jocs-471162 August 21, 2003 14:22 Style file version June 24th, 2002
to the children’s expertise, altruism, and compassion viduals disliked anything about the actual program,
seemed to be what led a great proportion to join. though there were some complaints about the envi-
ronment (e.g., “cold room”) and the distance to attend
it (e.g. “the drive”). One child said that he did not en-
RESULTS joy the relaxation exercises. Parents found schedul-
ing difficult and disliked some of the role-playing.
Evaluation of Program One parent found the program somewhat repetitive;
this can sometimes be a problem because most self-
Following the second session, both patients and management programs, including the present, are de-
parents were asked to complete an program evalu- signed to reiterate key concepts.
ation form (Appendix) to determine their percep-
tion of the usefulness of the program and its various
components. Evaluations suggested that all partici- DISCUSSION
pants: (a) viewed the program as worthwhile; (b) that
patients gained knowledge or skills that would help The program was developed with the aims of
them manage ESRD and their health; and (c) that improving quality of life and reducing the rate of
the program addressed their health-related needs. As- noncompliance in adolescents with renal transplants.
pects of the program rated as “very helpful” were Specific program goals were for adolescents: (1) to
talking with peers, the question-and-answer session become partners with their physician and medical
with the nephrologist, and the presentation by the team in the management of their transplant; (2) to
nurse on medications. Problem solving, stress man- limit the impact that the renal transplant had on their
agement, and communication role-play components lives; and (3) to gain confidence in their ability to help
were generally viewed as helpful by both patients and manage the transplant. All goals were accomplished.
parents. It appeared as if adolescents felt more a valued
Adolescents and preteens involved in the study member of their medical treatment following inter-
reported that they enjoyed questioning the nephrol- vention. A goal was that adolescents would be, if not
ogist and nurse, talking to other kids with the same already, the ones who helped control their condition
problem, and the people, friendliness, and acceptance. through the performance of self-management activi-
Parents wrote that they enjoyed talking with the doc- ties. One of the skills necessary for this is the ability
tors, discussing common concerns with other parents to communicate with members of their medical team.
and transplant recipients, and helping adolescents to During the development of the program, the inter-
recognize their responsibilities in ESRD. Few indi- actions between patients and medical personnel had
P1: GCR
Journal of Clinical Psychology in Medical Settings pp955-jocs-471162 August 21, 2003 14:22 Style file version June 24th, 2002
been observed. In most cases, children and adoles- ing the current effort. First, participants should be
cents tended to let their parents do most of the talking. grouped according to developmental stage or age
This suggested an inability on the part of the patients group. In both groups, there was one individual who
to communicate effectively or possible a perception was outside of the other’s age ranges and so likely did
of being less involved with their health or medical not benefit as much as he could have. Implementing
decisions. It was for this reason that the program pro- a program according to developmental or age group,
vided the adolescents both the knowledge and the however, would be dependent upon recruiting more
opportunity to develop and perform skills necessary subjects than were available in the current project. A
to accomplish this goal. second change would be in the relaxation/stress man-
The concept of personal responsibility and in- agement component of the program. Although the
volvement with treatment decisions was also mod- parents enjoyed this section, the preteens did not ap-
eled and taught through role-playing. In these sce- pear to understand or benefit from this part of the
narios, the patients pretended to be the doctor, and program. A better way to provide information of re-
one of the facilitators (the nephrologist, nurse, or an- laxation would be to present it as a proven methods
other group leader) played the role of patient. The for coping with painful medical procedures. A third
patient acted aggressive (“Its your fault”), passive change would be the addition of more role-playing.
(“I don’t want to bother you”), or assertive (“Yes, Almost all patients appeared to display increased con-
I do have some questions”), while trying to tell the fidence following training that they would be able to
physician about a problem he or she was having in tell the nephrologist if they regularly forgot to take
taking medications. The adolescents’ perceptions of their medication. Because this specific situation was
each of these styles (e.g., “He was rude,” “I didn’t addressed through role-playing, it seems likely that
know what he wanted”) and their thoughts regard- additional role-playing to model parent–child interac-
ing if each patient would take his medication (e.g., “I tions or other aspects of communication might prove
doubt it,” “I don’t know”) were processed. Partici- helpful. Finally, a self-management program should
pants then generated their own questions to ask the be given to preteens and adolescents who had re-
nephrologist and nurse. The combination of learning cently had their transplants, as well as those who had
appropriate communication styles, having the oppor- transplants more than 5 years earlier. The program es-
tunity to joke and laugh about possible problems, and tablished a norm for patients, parents, and the health
practicing the skills while receiving positive feedback care team that the adolescents had a crucial role in
increased the adolescents’ confidence in their abil- the management of their own health. It also set ex-
ity to discuss concerns with the medical team. At the pectations with regard to health and transplant man-
same time, it reinforced that the participants for their agement, whereas promoting comfort and familiarity
behavior. with both the health care team and mental health pro-
The goal of limiting the impact of the transplant fessionals in discussing issues and problems related to
on their lives had mixed results. During a discussion transplants.
in the first session, it was evident that the adolescents
saw the effect of ESRD and the transplant as limited
to discrete areas of their lives, for example, affecting ACKNOWLEDGMENTS
their height or continually having to take a lot of med-
ication. In contrast, all the parents felt that the disease The authors thank Ellen Siegal, MSW, Laurie
process impacted all areas of both their own and their Takacs, RN, Mary Ann Stang, MS, Nicole Bryant,
children’s lives. PhD, Lori Sauer, PhD, and Connie Cottrell, PhD,
Finally, the program appeared helpful in pro- for facilitating the self-management sessions. Our
moting communication between families about issues appreciation also goes to Mark Menster, MD, and
such as medication taking, overprotectiveness, and Martin Turman, MD, for their support and advice
fear of graft rejection and death. These and other top- in program development and recruiting participants.
ics were emphasized through peer interactions and Finally, thanks to the American Psychological As-
guided discussions. To paraphrase one of the partic- sociation Dissertation Awards Committee for their
ipants, “the program provided us with a sense of ac- support and funding of this project as well as to
ceptance of transplants.” Sandoz pharmaceuticals for providing funding for
Suggestions for future programs can be made refreshments and travel expenses for patients and
based on the experience of designing and implement- families.
P1: GCR
Journal of Clinical Psychology in Medical Settings pp955-jocs-471162 August 21, 2003 14:22 Style file version June 24th, 2002
As I mentioned when describing the study, this is an experimental program designed to provide teenagers
with the information and skills that they need to be able to manage their own transplants. Since you are part of
the first group to go through the program, we need your feedback about what we did right or wrong and what
you liked or didn’t like. This information will allow us to make the program better or more relevant for Families
with Transplants in the future. So please, answer honestly. Thanks.
I am a: Teenager Parent
Who attended the following sessions: JUNE 7 JUNE 14 JUNE 21 JUNE 28
I thought that there were sessions.
Too many
Too few
Just the right number (of)
The sessions lasted:
Too long
Not long enough
Just the right amount of time
Do you think that you gained some knowledge or learned some skills that will help you/your child to manage
your (or their) health?
Yes No Sort of
Do you think the program was worthwhile?
Yes No Sort of
Did this program address your needs with regards to managing your health (or having your child manage theirs)?
Yes No Sort of
Please rate the program as a whole and each of the sections with the following scale:
1 = Very Helpful
2 = Helpful
3 = Not Very Helpful
4 = A waste of time
NA = Not Applicable
Problem Solving 1 2 3 4 NA
Stress Management/Relaxation 1 2 3 4 NA
Talking with other teens and/or parents 1 2 3 4 NA
Communication Role-plays 1 2 3 4 NA
Questions and Answers with the Nephrologist 1 2 3 4 NA
Medication Presentation by the Nurse 1 2 3 4 NA
Session 1 1 2 3 4 NA
Session 2 1 2 3 4 NA
The Program as a Whole 1 2 3 4 NA