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Journal of Clinical Psychology in Medical Settings, Vol. 10, No. 3, September 2003 (°
C 2003)

A Self-Management Program for Adolescents and Children

With Renal Transplantation

Michelle A. Meade,1,3 Thomas L. Creer,1 and John D. Mahan2

This paper describes the development and implementation of a self-management program

designed to address noncompliance in adolescents with renal transplants. Transplantation pro-
vides the best treatment alternative for End-Stage Renal Disease (ESRD), but is a procedure
that subsequently demands recipients follow a life-long medication regimen. Nonadherance
to medical therapy is a serious problem for adolescents; it is one of the most common causes
of chronic graft rejection in this population. To improve compliance rates for this population,
a self-management program was designed: (1) to provide social support; (2) to review infor-
mation about medications and transplant management; and (3) to both teach and provide
transplantation patients the opportunity to practice self-management skills. Details about the
program, including recruitment issues and session content, are provided. Evaluations by par-
ticipants indicated that the program was effective in creating a supportive environment for
both patients and their parents, and in addressing health-related concerns.
KEY WORDS: self-management; end stage renal disease; pediatric; transplantation; kidney disease.

INTRODUCTION turn, be reinforced for their actions. Self-management

The problem of nonadherence with medical ther-
apy is well documented for children with renal dis-
ease (Beck et al., 1980; Dunn et al., 1990; Gagnadoux,
Niaudet, & Broyer, 1993; Hesse, Roth, Knuppertz,
Weinand, & Lilien, 1990; Korsch, Fine, & Negrete,
1987). In fact, noncompliance to treatment regimens
is a common cause of graft rejection in children and
adolescents. Research on treatment adherence with
other chronic disorders, such as asthma and hyperten-
sion, has demonstrated that acquisition of knowledge
by the patient is insufficient to ameliorate the problem
(Creer & Holroyd, 1997; Cromer & Tarnowski, 1989;
Varni & Wallander, 1984). Patients must demonstrate
that they can perform the skills they are taught and, in
1 Department of Psychology, Ohio University, Athens, Ohio.
2 Department of Pediatric Nephrology, Children’s Hospital, The
Ohio State University, Columbus, Ohio.
3 Correspondence should be addressed to Michelle A. Meade, PhD,
Virginia Commonwealth University, MCV Campus, Box 980542,
Richmond, Virginia, 23298-0542.
was chosen both because it provides a clear format for
the acquisition and performance of self-management
skills, and because it has produced encouraging re-
sults with other chronic disorders in children (Creer,
2000; Creer & Holroyd, 1997).
Self-management has been defined as “the per-
formance of therapeutic health-care activities, of-
ten in collaboration with health care professions”
(Holroyd & Creer, 1986, p. xx). It implies a patient’s
active participation in the management of his or her
illness by becoming a member of the health care team.
Basic self-management skills include self-monitoring,
medication compliance, environmental control, relax-
ation, and problem solving. Self-management pro-
grams attempt to provide individuals with chronic
conditions the knowledge, skills, and self-efficacy nec-
essary to take an active role in the management of
their medical condition. (A more complete discussion
of self-management can be found in the chapter by
Creer & Holroyd, 1997.)
The purpose of the current program was to de-
velop a self-management program for End Stage

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
166
Renal Disease (ESRD) in order to increase the
involvement of adolescents with renal transplants
in the management of their condition and to decrease
the risk for noncompliance with treatment regimen.
The goals of the program were for the adolescents:
(1) to become partners with their physician and med-
ical team in the management of their transplant; (2) to
limit the impact that the renal transplant has on their
lives; and (3) to gain confidence in their ability to help
manage the transplant. A secondary objective of the
intervention was to reduce the risk of noncompliance
with medical regimens.
METHODS
Procedure
The intervention program used in this project
was adapted from asthma self-management programs
(Creer, Backiel, Ullman, & Leung, 1985a, 1985b;
Creer, Kotses, & Reynolds, 1991a, 1991b) which had
been proven effective in increasing self-efficacy, im-
proving compliance with medication regimens, and
lowering health care costs (Kotses et al., 1995; Taitel,
Kotses, Bernstein, Bernstein, & Creer, 1995). These
programs were altered with the assistance of the pedi-
atric nephrology team at Columbus Children’s Hospi-
tal to address the special needs of the pediatric renal
transplant population. Issues involved with effective
presentation and communication were also consid-
ered. The aim of the program was to provide infor-
mation, support, and an opportunity to practice self-
management skills related to renal transplantation.
The assumption was that the teens, if not already in
charge of their health care, must be responsible for
their own treatment; self-management training pro-
vided them the knowledge and the skills required to
assume that responsibility.
The program was designed to fit into two 4-
hr sessions. Travel time for participants made the
original format of eight 1-hr sessions (Creer et al.,
1988; Kotses et al., 1995) infeasible. By the same to-
ken, individuals—especially adolescents with little en-
thusiasm for such programs—have limited attention
spans; thus, it was also unlikely that marathon sessions
would be effective in providing self-management
training. Creer et al. (1988) had faced a similar prob-
lem in conducting a program in a remote part of Col-
orado and had successfully adopted the same strat-
egy. Two sessions, in particular, allowed participants
to establish a sense of familiarity and support with
14:22 Style file version June 24th, 2002
Meade, Creer, and Mahan
other group members. In addition, we hoped to al-
low participants the opportunity to practice the self-
management skills they were taught with members of
the project team.
For practical and conceptual reasons, the pro-
gram called for the inclusion of patients and their
families. This strategy was adopted because, on the
practical side, most participants were not old enough
to drive to the sessions by themselves. Incorporat-
ing parents into the program created an experience
in which both parent and child could become in-
vested (Creer et al., 1988). Conceptually, there is
significant support for the efficacy of involving par-
ents in intervention strategies (Anderson & Coyne,
1993; Iannotti & Bush, 1993; Johnson, 1993). Many
authors suggest that efforts to improve adherence
should consider and address environmental and so-
cial influences. Because parents influence their child’s
health behaviors in many ways (e.g., direct training,
supervision of health behavior, the parent–child rela-
tionship; Brooks-Gunn, 1993), their presence is cru-
cial if effective change in their children is to occur. In
addition, education, counseling, and support for par-
ents of chronically ill children are also seen as impor-
tant (Doherty, 1994; Iannotti & Bush, 1993; Reynolds,
Garralda, Postlethwaite, & Goh, 1990).
Results from previous studies (see articles by
Siegal, Mahan, & Johnson, 1994, and the chapter by
Schweitzer & Hobbs, 1995, for a complete review)
suggested specific dynamics that needed to be con-
sidered when designing an intervention program for
children and parents. For example, a key issue for chil-
dren and adolescents with renal transplants is their
relationship with their parents. Children with chronic
conditions often display reduced social interaction,
and lack of support from their peer group. Further-
more, many have overprotective parents and/or show
a lack of parent–child individuation. Children with re-
nal transplants may also be faced with the knowledge,
and sometimes a sense of guilt or responsibility, that
one of their parents donated the kidney that now must
be cared for by the child. These issues must be ad-
dressed with both patients and their parents if change
is to occur. It is also important to review and prac-
tice communication skills because poor communica-
tion within a family has been associated with reduced
compliance (Brooks-Gunn, 1993).
For these reasons, the current program (Meade,
Mahan, & Creer, 1996a) was designed for families
not only to review the information and to learn
self-management skills, but to allow patients and
P1: GCR
Journal of Clinical Psychology in Medical Settings pp955-jocs-471162
Self-Management of Renal Transplantation
parents opportunities to discuss sensitive and age-
appropriate topics within peer groups. Because ed-
ucation about medications and the transplant were
important components in other programs for ado-
lescents with renal transplants (Beck et al., 1980;
Schweizer et al., 1990; Fennell, Foulkes, & Boggs,
1994), information on these topics were incorporated
into the program. One of the nurses on the trans-
plant team presented information on medications and
their side effects; a nephrologist conducted a question
and answer session about transplantation and trans-
plant care. In addition, a Patient Handbook (Meade,
Mahan, & Creer, 1996b) was given to each partici-
pant; the Handbook reviewed the information and
skills covered in the program.
Learning to communicate effectively and appro-
priately with health care professionals was one of the
self-management skills emphasized in the program.
Participants practiced these skills by preparing and
asking two questions about their specific concerns
to both the nurse and the nephrologist. In addition,
patients and facilitators had the opportunity to role-
play passive, aggressive, and assertive communication
styles. Patients played the role of doctors; the nephrol-
ogist, nurse, and other facilitators played the role of
patients. Effective communication was modeled, and
patients were able to see and process the impact of
each style.
Finally, past programs (e.g., Beck et al., 1980) ad-
vocated the use of medication calendars and charts
to improve compliance. The current program took
a somewhat different approach. First, the basics of
problem solving were reviewed with all participants,
then patients were asked to compete with their par-
ents in generating lists of ways to remember to take
their medication. The only limitation was that hav-
ing someone tell you to take your medication could
only be used once. This method was employed to per-
mit participants to practice problem-solving skills, to
personalize solutions, and to encourage group iden-
tification and support. Members of the winning team
in each group were given prizes.
Facilitators for the renal self-management pro-
gram were solicited from the renal transplant team, as
well as from colleagues with experience working with
children and families. Although it may be suggested
that the inclusion of members of the health care team
might limit discussion of problems with medication-
taking or dealing with medical personnel, these indi-
viduals provided needed expertise about the medical
aspects of transplants and ESRD.
August 21, 2003 14:22 Style file version June 24th, 2002
167
Participants
Potential participants for this study were children
and adolescents who received renal transplantations
at Children’s Hospital in Columbus within the past
10 years. The nephrology team at Children’s Hospital
compiled a list of eligible candidates; a recruitment
letter with an attached response form was sent to 42
potential participants. This mailing yielded two return
responses. This lack of response is common in self-
management programs, no matter the chronic disease
or disorder (e.g., Creer et al., 1988). A brochure about
the program was designed, incentives added, and a
second mailing occurred. Rather than ask potential
participants to return a form, they were personally
called to ask if they would participate in this study.
Twelve individuals agreed to participate, 17 declined,
and 12 patients could not be reached.
Several months of recruitment yielded 13 sub-
jects. Of these, 4 later dropped out of the study (3 due
to time restrictions and 1 because of unwillingness to
complete questionnaires). Six patients and their fami-
lies attended both self-management sessions whereas
three participating families were only able to partic-
ipate in the first session (two due to family commit-
ments and one due to illness).
The nine patients who completed the study
ranged in age from 11 to 17 years old (average age =
13.67 years). The number of years that patients had
transplants ranged from 3 months to 10 years; the age
at time of the transplant varied from 1 to 15 years
old. Transplant donors were mother (n = 6), father
(n = 1), or cadaver (n = 2). Table I presents specific
information on each participant.
There were varying levels of commitment to the
study on the part of both the patients and parents.
Some participated at the suggestion of their nephrol-
ogist and others to assist with a research project. One
patient appeared disinterested and had initially de-
clined participation in the study. His mother, how-
ever, wanted him and his family to participate. In
this situation, the patient’s openness to the sessions
was questionable. It appeared as if the most effec-
tive mechanism for recruiting the children and adoles-
cents, especially the preteens, was by asking for their
assistance in developing and evaluating the effective-
ness of a program that would help other kids with
kidney transplant. It was emphasized that they were
the only ones who knew the important and relevant
topics and, thus, they were the only ones who could re-
ally say if the program was helpful or not. This appeal
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168 Meade, Creer, and Mahan

Table I. Participant Characteristics (at Time of Program)

Age at
Subject Gender Age transplant Donor Grade Dialysis pretransplant? Cause of ESRD
1 Female 11 1 Mother 5th Peritoneal for 1 year Kidneys shut down at 6 months
2 Male 17 10 Mother 10th 1-month peritoneal; Blocked posturethra valve
2-months hemodialysis
3 Female 11 4 Mother 5th Peritoneal for several months Not specified
4 Male 17 11 Cadaver 12th 2 years on CAPD Kidneys never grew
5 Male 15 15 Cadaver 9th CAPD for 14 months Born with only one functional
kidney that then damaged
6 Male 13 11 Father 8th Peritoneal for 6 months Nephrotic syndrome
7 Female 14 12 Mother 9th Peritoneal for 6 months Horse-shoe kidneys that never
developed properly
8 Male 12 11 Mother 6th 1 week Unknown
9 Male 13 5 Mother 7th Never Born with a piece of one kidney
10 Male 17 14 Father 11th Peritoneal for 6 months Renal cancer at young age then
undetermined problem with
functional kidney
11 Male 12 11 Mother 6th Hemodialysis (8 times) Polycistic kidney disease
12 Female 16
13 Male 11

to the children’s expertise, altruism, and compassion
seemed to be what led a great proportion to join.
RESULTS
Evaluation of Program
Following the second session, both patients and
parents were asked to complete an program evalu-
ation form (Appendix) to determine their percep-
tion of the usefulness of the program and its various
components. Evaluations suggested that all partici-
pants: (a) viewed the program as worthwhile; (b) that
patients gained knowledge or skills that would help
them manage ESRD and their health; and (c) that
the program addressed their health-related needs. As-
pects of the program rated as “very helpful” were
talking with peers, the question-and-answer session
with the nephrologist, and the presentation by the
nurse on medications. Problem solving, stress man-
agement, and communication role-play components
were generally viewed as helpful by both patients and
parents.
Adolescents and preteens involved in the study
reported that they enjoyed questioning the nephrol-
ogist and nurse, talking to other kids with the same
problem, and the people, friendliness, and acceptance.
Parents wrote that they enjoyed talking with the doc-
tors, discussing common concerns with other parents
and transplant recipients, and helping adolescents to
recognize their responsibilities in ESRD. Few indi-
viduals disliked anything about the actual program,
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-
joy the relaxation exercises. Parents found schedul-
ing difficult and disliked some of the role-playing.
One parent found the program somewhat repetitive;
this can sometimes be a problem because most self-
management programs, including the present, are de-
signed to reiterate key concepts.
DISCUSSION
The program was developed with the aims of
improving quality of life and reducing the rate of
noncompliance in adolescents with renal transplants.
Specific program goals were for adolescents: (1) to
become partners with their physician and medical
team in the management of their transplant; (2) to
limit the impact that the renal transplant had on their
lives; and (3) to gain confidence in their ability to help
manage the transplant. All goals were accomplished.
It appeared as if adolescents felt more a valued
member of their medical treatment following inter-
vention. A goal was that adolescents would be, if not
already, the ones who helped control their condition
through the performance of self-management activi-
ties. One of the skills necessary for this is the ability
to communicate with members of their medical team.
During the development of the program, the inter-
actions between patients and medical personnel had
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Self-Management of Renal Transplantation
been observed. In most cases, children and adoles-
cents tended to let their parents do most of the talking.
This suggested an inability on the part of the patients
to communicate effectively or possible a perception
of being less involved with their health or medical
decisions. It was for this reason that the program pro-
vided the adolescents both the knowledge and the
opportunity to develop and perform skills necessary
to accomplish this goal.
The concept of personal responsibility and in-
volvement with treatment decisions was also mod-
eled and taught through role-playing. In these sce-
narios, the patients pretended to be the doctor, and
one of the facilitators (the nephrologist, nurse, or an-
other group leader) played the role of patient. The
patient acted aggressive (“Its your fault”), passive
(“I don’t want to bother you”), or assertive (“Yes,
I do have some questions”), while trying to tell the
physician about a problem he or she was having in
taking medications. The adolescents’ perceptions of
each of these styles (e.g., “He was rude,” “I didn’t
know what he wanted”) and their thoughts regard-
ing if each patient would take his medication (e.g., “I
doubt it,” “I don’t know”) were processed. Partici-
pants then generated their own questions to ask the
nephrologist and nurse. The combination of learning
appropriate communication styles, having the oppor-
tunity to joke and laugh about possible problems, and
practicing the skills while receiving positive feedback
increased the adolescents’ confidence in their abil-
ity to discuss concerns with the medical team. At the
same time, it reinforced that the participants for their
behavior.
The goal of limiting the impact of the transplant
on their lives had mixed results. During a discussion
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
their height or continually having to take a lot of med-
ication. In contrast, all the parents felt that the disease
process impacted all areas of both their own and their
children’s lives.
Finally, the program appeared helpful in pro-
moting communication between families about issues
such as medication taking, overprotectiveness, and
fear of graft rejection and death. These and other top-
ics were emphasized through peer interactions and
guided discussions. To paraphrase one of the partic-
ipants, “the program provided us with a sense of ac-
ceptance of transplants.”
Suggestions for future programs can be made
based on the experience of designing and implement-
August 21, 2003 14:22 Style file version June 24th, 2002
169
ing the current effort. First, participants should be
grouped according to developmental stage or age
group. In both groups, there was one individual who
was outside of the other’s age ranges and so likely did
not benefit as much as he could have. Implementing
a program according to developmental or age group,
however, would be dependent upon recruiting more
subjects than were available in the current project. A
second change would be in the relaxation/stress man-
agement component of the program. Although the
parents enjoyed this section, the preteens did not ap-
pear to understand or benefit from this part of the
program. A better way to provide information of re-
laxation would be to present it as a proven methods
for coping with painful medical procedures. A third
change would be the addition of more role-playing.
Almost all patients appeared to display increased con-
fidence following training that they would be able to
tell the nephrologist if they regularly forgot to take
their medication. Because this specific situation was
addressed through role-playing, it seems likely that
additional role-playing to model parent–child interac-
tions or other aspects of communication might prove
helpful. Finally, a self-management program should
be given to preteens and adolescents who had re-
cently had their transplants, as well as those who had
transplants more than 5 years earlier. The program es-
tablished a norm for patients, parents, and the health
care team that the adolescents had a crucial role in
the management of their own health. It also set ex-
pectations with regard to health and transplant man-
agement, whereas promoting comfort and familiarity
with both the health care team and mental health pro-
fessionals in discussing issues and problems related to
transplants.
ACKNOWLEDGMENTS
The authors thank Ellen Siegal, MSW, Laurie
Takacs, RN, Mary Ann Stang, MS, Nicole Bryant,
PhD, Lori Sauer, PhD, and Connie Cottrell, PhD,
for facilitating the self-management sessions. Our
appreciation also goes to Mark Menster, MD, and
Martin Turman, MD, for their support and advice
in program development and recruiting participants.
Finally, thanks to the American Psychological As-
sociation Dissertation Awards Committee for their
support and funding of this project as well as to
Sandoz pharmaceuticals for providing funding for
refreshments and travel expenses for patients and
families.
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170 Meade, Creer, and Mahan

APPENDIX: PROGRAM EVALUATION FORM

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

What did you particularly like about the program?

What did you dislike?
What should we make sure to include or add for families who go through this program in the future?
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Self-Management of Renal Transplantation
REFERENCES
Anderson, B. J., & Coyne, J. C. (1993). Family context and com-
pliance behavior in chronically ill children. In N. Kasnegor, L.
Epstein, S. B. Johnson, & S. Yaffe (Eds.), Developmental as-
pects of health compliance behavior (pp. 77–90). Hillside, NJ:
Erlbaum.
Beck, D., Fennel, R., Yost, R., Robinson, J., Geary, D., & Richards,
G. (1980). Evaluation of an educational program on compli-
ance with medication regimens in pediatric patients with renal
transplants. The Journal of Pediatrics, 96, 1094–1097.
Brooks-Gunn, J. (1993). Why do adolescents have difficulty ad-
hering to health regimens? In N. Kasnegor, L. Epstein, S. B.
Johnson, & S. Yaffe (Eds.), Developmental aspects of health
compliance behavior (pp. 125–152). Hillside, NJ: Erlbaum.
Creer, T. L. (2000). Self-management and the control of chronic
pediatric illness. In D. Drotar (Ed.), Promoting adherence to
medical treatment in chronic childhood illness: Concepts, meth-
ods, and interventions (pp. 95–129). Hillsdale, NJ: Erlbaum.
Creer, T. L., Backial, M., Burns, K. L., Leung, P., Marion, R. J.,
Miklich, D. R., et al. (1988). Living with asthma: Part I. Genesis
and development of a self-development program for childhood
asthma. Journal of Asthma, 25, 335–362.
Creer, T. L., Backiel, M., Ullman, S., & Leung, S. (1985a). Liv-
ing with asthma. Part I. Manual for teaching parents the self-
management of childhood asthma (NIH Publication No. 86-
2364). Washington, DC: U.S. Department of Health and
Human Services.
Creer, T. L., Backiel, M., Ullman, S., & Leung, S. (1985b). Liv-
ing with asthma. Part II. Manual for teaching children the self-
management of asthma. Washington, DC: U.S. Department of
Health and Human Services.
Creer, T. L., & Holroyd, K. A. (1997). Self-management. In A.
Baum, C. McManus, S. Newman, J. Weinman, & R. West
(Eds.), Cambridge handbook of psychology, health, and behav-
ior (pp. 255–258). Cambridge, England: Cambridge University
Press.
Creer, T. L., Kotses, H., & Reynolds, R. (1991a). A handbook for
asthma self-management: A guide to living with asthma for
adults. Athens, OH: Ohio University Press.
Creer, T. L., Kotses, H., & Reynolds, R. (1991b). A handbook for
asthma self-management: A group leader ’s guide to living with
asthma for adults. Athens, OH: Ohio University Press.
Cromer, B. A., & Tarnowski, K. J. (1989). Noncompliance in ado-
lescents: A review. Developmental and Behavioral Pediatrics,
10, 207–215.
Doherty, P. (1994). Patient and family support groups: What is their
role? In H. McGee & C. Bradley (Eds.), Quality of life follow-
ing renal failure (pp. 259–264). Switzerland: Harwood Aca-
demic Publishers.
Dunn, J., Golden, D., Van Buren, C. T., Lewis, R. M., Lawen,
J., & Kahan, B. D. (1990). Causes of graft loss beyond
two years in the cyclosporine era. Transplantation, 49, 349–
353.
14:22 Style file version June 24th, 2002
171
Fennel, R. S., Foulkes, L.-M., & Boggs, S. R. (1994). Family-based
program to promote medication compliance in renal trans-
plant children. Transplantation Proceedings, 26, 102–103.
Gagnadoux, M. F., Niaudet, P., & Broyer, M. (1993). Non-
immunological risk factors in paediatric renal transplantation.
Pediatric Nephrology, 7, 89–95.
Hesse, U., Roth, B., Knuppertz, G., Weinand, P., & Lilien, T. (1990).
Control of patient compliance in outpatient steroid treatment
nephrologic disease and renal transplant recipients. Transplan-
tation Proceedings, 22, 1405–1406.
Holroyd, K. A., & Creer, T. L. (Eds.). (1986). Self-management of
chronic diseases. A handbook of interventions and research.
New York: Academic Press.
Iannotti, R. J., & Bush, P. J. (1993). Toward a developmental theory
of compliance. In N. Kasnegor, L. Epstein, S. B. Johnson, &
S. Yaffe (Eds.), Developmental aspects of health compliance
behavior (pp. 59–76). Hillside, NJ: Erlbaum.
Johnson, S. B. (1993). Chronic diseases of childhood: Assessing
compliance with complex medical regimens. In N. Kasnegor,
L. Epstein, S. B. Johnson, & S. Yaffe (Eds.), Developmental
aspects of health compliance behavior (pp. 157–184). Hillside,
NJ: Erlbaum.
Korsch, B., Fine, R., & Negrete, V. (1978). Noncompliance in chil-
dren with renal transplants. Pediatrics, 61, 872–876.
Kotses, H., Bernstein, I. L., Bernstein, D. I., Reynolds, R., Korbee,
L., Wigal, J. K., et al. (1995). A self-management program for
adult asthma. Part I. Development and evaluation. Journal of
Allergy and Clinical Immunology, 95, 529–540.
Meade, M., Mahan, J., & Creer, T. L. (1996a). Trainer’s manual for
the self-management of renal transplantation. Columbus, OH:
Children’s Hospital.
Meade, M., Mahan, J., & Creer, T. L. (1996b). Patient’s manual for
the self-management of renal transplantation. Columbus, OH:
Children’s Hospital.
Reynolds, J., Garralda, M., Postlethwaite, R., & Goh, D. (1990).
Changes in psychosocial adjustment after renal transplanta-
tion. Archives of Disease in Childhood, 66, 508–513.
Schweitzer, J. B., & Hobbs, S. A. (1995). Renal and liver disease:
End-stage and transplantation issues. In M. Roberts (Ed.),
Handbook of pediatric psychology (pp. 425–445). London:
Guilford Press.
Schweizer, R. T., Rovelli, M., Palmeri, D., Vossler, E., Hull, D., &
Bartus, S. (1990). Noncompliance in organ transplant recipi-
ents. Transplantation, 49(2), 374–377.
Siegel, E. G., Mahan, J. D., & Johnson, R. S. (1994). Solid or-
gan transplantation in adolescents: The blessing and the
curse. Adolescent Medicine: State of the Art Reviews, 5, 293–
309.
Taitel, M. S., Kotses, H., Bernstein, I. L., Bernstein, D. I., & Creer,
T. L. (1995). A self-management program for adult asthma.
Part 2. Cost–benefit analysis. Journal of Allergy and Clinical
Immunology, 94, 672–676.
Varni, J. W., & Wallander, J. L. (1984). Adherence to health-related
regimens in pediatric chronic disorders. Clinical Psychology
Review, 4, 585–596.