CAN A MEDICAL SPECIALTY CAMP BECOME A VENUE OF PROVIDING

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CAN A MEDICAL SPECIALTY CAMP BECOME A VENUE OF PROVIDING
REINFORCEMENT PREPARATION EDUCATION REGARDING TRANSITION FROM
PEDIATRIC TO ADULT HEALTHCARE?
by
Sarah McEarl
A Senior Honors Project Presented to the
Honors College
East Carolina University
In Partial Fulfillment of the
Requirements for
Graduation with Honors
by
Sarah Jane McEarl
Greenville, NC
December 2014
Approved by:
Priti P. Desai, PhD, MPH, CCLS
Child Development and Family Relations, College of Human Ecology
CAN A MEDICAL SPECIALTY CAMP BECOME A VENUE OF PROVIDING
REINFORCEMENT EDUCATION REGARDING TRANSFER FROM PEDIATRIC TO
ADULT HEALTHCARE?
By: Sarah McEarl, December 2014
Director of Thesis: Dr. Priti P. Desai, PhD, MPH, CCLS
There is limited research available regarding preparation education for adolescents with a
congenital heart defect (CHD) approaching the transition from pediatric to adult healthcare.
Medical specialty camps have been proven as beneficial for children and adolescents with CHD
in providing opportunities for the development of interpersonal relationships between individuals
with similar diagnoses and experiences. Using individual interview techniques, the current study
explored the perceptions of five young adults with CHD between the ages of 18 and 21 years
who attended medical specialty camps in the past. Participants discussed their i) experiences
living with a complex CHD and resources used ii) knowledge regarding diagnosis and treatment
adherence iii) experiences in communicating with doctors and adhering to doctors’ orders iv)
opinions regarding experiences in the adult clinic v) parental role in medical care vi) thoughts
regarding the benefits of educational experiences focusing on the transition of care during a
medical specialty camp. Participants were in various stages in the transition process, with none
fully transitioned into independent adult CHD care. Though they identified minimal levels of
anxiety regarding the transition, all participants perceived preparation education as beneficial.
They unanimously stated that a medical specialty camp would be an appropriate venue for
providing transition education. Results showed that preparation education should tailor to the
specific anxieties reported by the adolescents receiving the preparation. Based on participant
feedback, a transition preparation journal activity was developed and trialed as a quality
improvement program at a medical specialty camp. Further research is indicated to assess the
usefulness of this education intervention.
ACKNOWLEDGEMENTS
First and foremost, I wish to acknowledge the support and help of my faculty mentor, Dr.
Priti P. Desai. I consider it an honor to have been provided with the guidance of an individual
with such a high level of professional expertise. I appreciate her guidance through the steps of
conducting my research and in the development of my professional writing skills. I would like
to recognize her for providing irreplaceable knowledge regarding research, professionalism, and
productivity. Without her thorough guidance and persistency, the development of this thesis
would not have been possible.
I would like to thank the five participants for volunteering their time and for being
valuable additions to the understanding of the transition from pediatric to adult healthcare. I am
grateful for the sharing of their personal testimonies and experiences, and for granting
permission to use their responses in the production of my thesis.
I wish to thank the two graduate students in the department of Child Development and
Family Relations for providing consistent support during the process of conducting my research
and in the writing of my thesis. I recognize the value of their time dedicated to helping me
practice skills pertaining to appropriate interview techniques and in refining the writing of my
thesis. Additionally, a special thanks to the pediatric cardiologist and the graduate student who
also assisted in the presentation of the transition education to adolescents with CHD.
It is with immense gratitude that I acknowledge the support of my parents. Their support
and constant words of encouragement gave me the determination to persevere through the
progression of my thesis. I am gracious for the support they have given me throughout my life,
which can be attributed to the confidence I have in my abilities, my academics, and my
motivation to succeed.
TABLE OF CONTENTS
TITLE PAGE……………………………………………………...……………………………….i
ABSTRACT………………………………………………………………………………………ii
ACKNOWLEDGEMENTS………………………………………………………………………iii
LIST OF TABLES………………………………………………………………………………..iv
CHAPTER 1: INTRODUCTION………….……………………………………………………..1
Theoretical Foundation…………………………..………………………………………..4
Theory in Healthcare Perspective…………………………………………………………5
Purpose……………………………………………………………………………………6
CHAPTER 2: REVIEW OF LITERATURE……………………………………………………..7
Adolescent and Adult Factors……………………………………………………………..8
Self-Esteem and Quality of Life…………………………………………………..8
Physical Functioning………………………………………………………………9
Family Factors………………………………………………………………………...…..9
Medical Factors………………………………………………………………………......10
Adaptation to Transition……………..………………………………………..…10
Treatment Adherence…………………………………………………………….11
Knowledge…………………………………………………………………….....11
Finance………………………………………………………………………...…12
Relationships and Communication with Healthcare Professionals……………...12
Concerns with Adult Care…………………………………………………….....13
Preparation……………………………………………………………………….13
Medical Specialty Camps………………………………………………………………..15
Gaps in Literature……………………………………………………………………......16
Factors Contributing to a Successful Preparation Program……………………...16
Other Venues for Preparation Education………………………………………...16
Study Rationale………………………………………………………………………......17
CHAPTER 3: METHODOLOGY…………………………………………………………........18
Background…………………………………………………………………………..…..18
Design………………………………………………………………………………..…..18
Tool…………………………………………………………………………..…..18
Participants…………………………………………………………………………..…...19
Procedure………………………………………………………………………….…......19
Analysis…………………………………………………………………………..……...20
CHAPTER 4: RESULTS………………………………………………………………..……....21
Experiences: Physical Condition and Limitations………………………….…..……..…23
Self-Image……………………………………………………………..……...….24
Growing up and living with CHD: Coping……………………………..…...…...25
Independence in Care…………………………………………………………..…...……26
Treatment Adherence…………………………………………………..…...……27
Communicating with Doctors and Nurses…………………………..………..….27
Knowledge about Condition……………………………………………..………28
Transition and Transition Preparation……………………………………………..…….29
Changing Doctors…………………………………………………………..……32
Resources and Support…………………………………………………………...………34
Medical Specialty Camps as a Venue of Preparation Education………………..……….35
CHAPTER 5: DISCUSSION……………………………………………………...…………….37
Study Limitations………………….………………………………………...…………...43
Conclusion and Implications……………………………………………………………..43
REFERENCES………………………………………………….………………………….……45
APPENDIX A: ECU UMCIRB APPROVAL LETTER………….……………………….…….50
APPENDIX B: COVER LETTER…………..……………………...……………….…….……..51
APPENDIX C: INFORMED CONSENT DOCUMENT………………..………………………53
APPENDIX D: INTERVIEW QUESTIONS…………..………….…………………….………55
APPENDIX E: TRANSITION PREPARATION JOURNAL (SAMPLE PAGES)…………….59
LIST OF TABLES
Table
Page
1. Participant Demographic Information……………………………………………………21
2. Participant Health Demographic Information……………………………………………22
3. Participant Preparation and Transition Status…………………………………………...32
4. Medical Specialty Camp as a Venue for Preparation Education………………………....35
CHAPTER 1: INTRODUCTION
Advances in medical treatment and surgical techniques have resulted in significant
improvement in the survival rate of infants born with CHD. Each year, about 40,000 newborns
in the United States are born with CHD, and with the medical and technological advances, about
ninety percent of these individuals will eventually make the transition to adulthood (Shearer,
Rempel, Norris, & Magill-Evans, 2013). It is recommended that approximately half of the adult
population with a complex congenital heart defect should see an adult cardiology specialist for
follow-up care in case of future complications that may occur (Reid et al., 2004). More than 25
percent of the patients reported that they received no follow-up care after turning 18 years of age,
which in the United States marks the typical and suggested age of transition (Reid et al., 2004).
Transitioning is the movement of adolescents and young adults with chronic illness from child
centered to adult centered care. This movement encompasses both physical and psychosocial
dynamics (Reid et al., 2004). Transitioning to adult healthcare is necessary for those with
chronic illnesses to ensure age-appropriate medical care (Reiss, Gibson, & Walker, 2005).
There is a need for improvement in the success of transition from pediatric to adult care.
The transition from pediatric to adult care is a process signaling the end of familiar relationships
with pediatric healthcare specialists, a switch from family centered care to patient centered care,
and in some cases a change in medical procedures. Factors of a successful transition are present
in many domains, which can be summed up into three categories: individual, family, and medical
(Reid et al., 2004). Pertaining specifically to young adults, the individual, family, and medical
dynamics are changing in correspondence to the young adult’s transition from adolescence to
adulthood. Young adults are in a period of identity crisis and in the search for their proper role
in society. Factors that contribute to identity and role development, such as self-esteem,
personality, and physical functioning are influenced by a young adult patient’s diagnosis with a
congenital heart defect (Rassart et al., 2013; Shearer et al., 2013). Congenital heart defects often
cause physical differences among young adults that act to differentiate them from their healthy
peers. CHD also affects individuals in terms of physical performance, causing them to tire more
easily than their peers. This in turn may lead to isolation and rejection due to their physical
differences resulting from scars and their potential physical limitations (Shearer et al., 2013).
Family and medical factors go hand in hand due to the family centered care approach to
pediatric health care (McCurdy et al., 2006). A family centered care approach assures the
wellness of a child and encourages mutual cooperation through open communication with his or
her family. This approach involves assessing the whole family and everything it encompasses:
strengths, culture, ethnicity, needs, etc. In pediatric care, a patient with CHD typically grows
accustomed to parental presence during appointments and procedures (McCurdy et al., 2006;
Shearer et al., 2013). Many adolescents report a sense of familiarity and support in the
involvement of their parents, however, in many cases the parent takes on the role as a mediator
between the healthcare specialists and adolescent, which is not beneficial towards a successful
transition from pediatric to adult care (Tuchman, Slap, & Britto, 2005). The parental role should
be a complementary role of support and education in advocating for autonomy in the young adult
patient in the adherence and self-management of follow-up adult care (Tuchman et al., 2005).
Two main predicting factors towards a successful transition from pediatric to adult care
are knowledge regarding diagnosis and treatment, and preparation for the transfer of care. Adult
CHD patients have a substantial gap in their knowledge regarding their condition (Moons et al.,
2001). The participants of the Moons et al. (2001) study were shown to have adequate
knowledge about their diagnosis and the treatment ordered by their doctor. However, many were
2
unaware about the reasoning behind their treatment, failed to recognize the symptoms of heart
failure, and were ignorant toward risk factors such as smoking and alcohol (Moons et al., 2001).
These findings show that young adults without adequate knowledge may be at risk for further
complications, revealing the importance of preparation for the transition and the adherence to
adult follow-up care.
Preparation regarding the transition from pediatric to adult care is key to a successful
transition and should be an ongoing therapeutic process that begins prior to the transition (Reid
et al., 2004). In the process of preparation, it is important for a healthcare specialist to assess the
knowledge of the patient regarding his or her diagnosis, treatment, reasoning behind treatment,
and provide a correct understanding about adult care and the benefits of follow-up care. This
should be done in a setting familiar to the patient. Preferably, initial preparation should take
place in the pediatric setting and should consist of developmentally appropriate language (Reid
et al., 2004).
Medical specialty camps provide a venue for children and teens with CHD to escape the
discrimination and isolation that sometimes results from their physical differences and
limitations. These camps provide individuals with resources, the opportunity to form caring
relationships, leisure and recreation activities, and the exposure to individuals with similar
diagnoses and experiences (Desai, Sutton, & Stanley, 2013; Gillard, Witt, & Watts, 2011;
Simons et al., 2007). Medical specialty camps create a supportive environment that promotes
acceptance and opportunities to increase social and behavioral skills (Desai et al., 2013). Camps
were discussed as a means of reinforcing information initially provided by healthcare specialists
(Gillard et al., 2011). Additional opportunities should be offered during camp attendance to
encourage adolescents to share concerns and information about their condition, and to discover
3
the similarities they have with other campers (Briery & Rabian, 1999). Gillard et al. (2011)
reported that campers’ attitudes in regards to their diagnosis were shown to improve through
developing relationships with other campers and learning self-care during the camp experience.
Theoretical Foundation
Erik Erikson’s theory of psychosocial development is one of the main theories of human
development (Arnett, 2007). Erikson’s theory introduces ‘stages’ of development that occur
within an individual. The adolescence stage of development begins when the individual reaches
puberty and continues until his or her late teenage years. Following the adolescence stage, the
individual proceeds to the next stage of development, which is considered adulthood.
Jeffrey Arnett’s theory of Emerging Adulthood, however, indicates that individuals in
their late teenage years have indeed left the stage of adolescence, yet they cannot be considered
to be adults (Arnett, 2007). This theory states that there is a gap between the end of adolescence
(age 18 years) and the beginning of adulthood (age 25 years) (Munsey, 2006). Arnett has
defined this gap as emerging adulthood. Arnett reported that individuals entering into the period
of emerging adulthood are beginning to feel responsible, but are still dependent on their parents
and family (Munsey, 2006). Arnett describes these individuals as being part adult, but not quite
(Arnett, 2007).
An individual’s sense of wellbeing has been shown to increase within the stage of
emerging adulthood. This implies that people are successfully adapting to the challenges found
in the period of emerging adulthood (Arnett, 2007). However, especially vulnerable populations
of emerging adults, such as individuals with disabilities, may struggle with adjusting to the
challenges presented in this period (Arnett, 2007). Arnett has described the emerging adulthood
stage as a period of time for individuals to determine for themselves when they are ready for
4
adulthood. Once they feel ready to be an adult, they will gradually begin to accept the roles of
adulthood and independence (Arnett, 2007). Arnett (2007) defines the three criteria of universal
signs of adulthood as: accepting responsibility for oneself, making independent decisions, and
becoming financially independent.
Arnett declared that society should put forth an effort to help young adults transition into
careers and familial roles. Arnett’s co-editor, Jennifer Lynn Tanner, stated, “how well an
adolescent makes the transition through young adulthood into adulthood and becomes a fully
independent person depends in large part on the right balance of the adolescent pushing for
independence and parents and society giving the correct amount of support” (Munsey, 2006, p.
68). The focus of the current study, the transition from pediatric to adult CHD healthcare,
corresponds with Arnett’s theory of emerging adulthood. The transitioning period allows young
adults to practice the skills necessary to independently manage their condition while still
receiving support and guidance from their parents and healthcare providers. Mastering the skills
and responsibilities of independent self-care symbolizes the end of the emerging adulthood stage
as well as the transitioning process, given that they occur simultaneously.
Theory in Healthcare Perspective. The ten dimensions of illness were classified to
“characterize the nature of a crisis and the influence it has on a social system” (Lipman-Blumen,
1975, p. 100). They “provide a framework to classify the dimensions of an illness stressor that
govern the illness’s capability to cause family strain, stress, and crisis” (p. 100). Although these
dimensions were written to pertain to the effect on the whole family rather than an individual, the
theoretical concepts provided by Lipman-Blumen (1975) can be applied on the individual level.
The “stressor” portrayed in these dimensions can be viewed as the transition from pediatric to
adult healthcare and the loss of sense of control that often occurs reciprocally.
5
The dimensions that apply directly to our theoretical foundation are: control of the
stressor, severity of the stressor, onset of the stressor, predictability of the stressor, and the
resource demands of the stressor. The gradual process of transitioning to adult CHD healthcare
allows the patient a period for preparation and adjustment, rather than the transition producing a
sudden onset of stress. The severity of the stressor produced by the transition of care is
dependent on the amount of support available from the patient’s family and community. A
heightened sense of control and perceived support a patient has regarding the transition process
will decrease the impact of the stressor. Reinforcement education regarding the transition to
adult CHD healthcare increases the predictability and sense of control a young adult patient has
over his or her transition process by providing education, support, resources, and opportunities
for adjustment during the transition process.
Purpose
The goal of the current study was to examine the experiences of young adults with
complex congenital heart defects and their perspectives regarding their future involvement in
adult CHD follow-up cardiac healthcare. The data collected will provide an informal assessment
on the degree of knowledge a typical young adult (ages 18-21) patient with CHD has pertaining
to their condition, adherence to treatment, and independence in self-management of their
condition. This assessment will potentially contribute to existing research by defining the skills
necessary for transition from pediatric to adult care in correspondence to the independence skills
necessary for the transition from adolescence to adulthood. Participant responses will be used to
assess their perspectives on whether providing a transition related preparation education
component to a medical specialty camp for children and adolescents with CHD will be beneficial
in preparing them for the transition from pediatric to adult care.
6
CHAPTER 2: REVIEW OF LITERATURE
A congenital heart defect is a condition present from birth, therefore requiring the
individual to adapt throughout his or her life. The healthcare experience is built upon three
components of the individual: individual factors, family factors, and medical factors (Reid et al.,
2004). The focus of this review is on the young adult population of individuals with congenital
heart defects. Young adults show an eagerness to display their mastery of skills in terms of their
acceptance, maintenance, and familiarity with their condition; however, they are not yet capable
of independently managing their illness (Peter, Forke, Ginsburg, & Schwarz, 2009). They are
particularly vulnerable in the stage of adolescence because they must cope with the transition
from pediatric to adult care as well as the physical and emotional changes of becoming an adult
(Shearer et al., 2011).
Transitioning is essentially the movement from the family centered care provided by the
pediatric healthcare specialists to adult centered care. The transition to adult CHD healthcare
requires young adults to adjust to a new environment, new healthcare specialists, and in some
cases different procedures (McCurdy et al., 2006; Shearer et al., 2003). It is not a single
definable moment; rather it is a process requiring adaptation of the physical, emotional, and
psychosocial domains of the young adult (Reid et al., 2004). Preparation is key to a successful
transition, and involves a developmentally appropriate planning process prior to the time of
transition (Reid et al., 2004). Medical specialty camps are introduced as an opportunity for fun
and education that can also serve as a medium for the reinforcement of important concepts from
healthcare specialists (Gillard et al., 2001). CHD medical specialty camps are to be explored as
a possible venue for providing reinforcement education to adolescents approaching the transition
from pediatric to adult healthcare. Current research indicates that resilience is a building process
that can develop in any individual with the presence of specific dynamics that work to promote
adaptability in adverse situations (Scott, 2010). The understanding of these dynamics will make
it possible to facilitate future intervention programs for young adults to provide stability in their
growth and development throughout their transition into adulthood and into adult cardiac care.
The following section explores factors that contribute to successful transition from
pediatric to adult CHD healthcare.
Adolescent and Adult Factors
Self-esteem and Quality of Life. Individuals who perceive their experiences as unique
and not shared by others tend to feel isolated from their peers. Neff and McGehee (2010)
reported that when individuals experience isolation, they often show an increase in negative selfesteem when dealing with stressful circumstances. Self-esteem, whether it is positive or
negative, carries over into other life domains and may cause patients with chronic illness to feel
incapable of controlling and adapting to their condition (Juth, Smyth, & Santuzzi, 2008). In a
study by Shearer et al. (2013), some participants with CHD reported feeling insecure with their
physical appearance because of physical characteristics that differentiate them from their peers:
their cyanotic lips, small stature, and scar. However, Lewis and Khaw (1982) determined that
children with chronic illness did not differ from healthy children in terms of their self-esteem.
A study by Varni, Limbers, and Burwinkle (2007) determined that pediatric patients with
a chronic illness, especially those with a more severe condition, reported their perceived quality
of life as more impaired than healthy children (Varni et al., 2007). The amount of restricted
activity, the perceived severity, and unpredictability of symptoms increased the risk of poor
mental health for young adults with a chronic illness (Bjornstad, Spurkland, & Lindberg, 1993;
Ireys, Werthamer-Larsson, Kolodner, & Gross, 1993; Key, Brown, Marsh, Spratt, & Recknor,
8
2001). Adolescents with CHD reported a higher quality of life if they were able to fit in and feel
a sense of normality (Shearer et al., 2013). This is possible for individuals with CHD given that
their ability and desire to complete daily tasks and formulate their own routines are not all that
different from their healthy peers (Shearer et al., 2013).
Physical Functioning. Adolescents with congenital heart defects reported feeling
socially excluded and unpopular as a result of their inability to participate in certain activities
(Lee & Kim, 2012; Shearer et al., 2013). Some adolescents, however, reported that they allowed
themselves to participate in activities with their peers, but admitted requiring more frequent rest
breaks (Shearer et al, 2013). Lee and Kim (2012) stressed that limitations have the ability to
influence the adolescent’s social competence and motor development.
Hager and Hess (2005) and Gratz et al. (2009) reported that patients with CHD, as well as
their parents, overestimated the patients’ exercise capacity. Hager and Hess (2005) offer a
suggestion stating that given the nature of congenital heart defects being present from birth,
patients with CHD see themselves capable of performing to the standard of the norm. Lee and
Kim (2012) reported that parents often have high anxiety and a tendency to be overprotective
(Bjornstad et al., 1995; Lee & Kim, 2012; Lewis & Khaw, 1982; Simons et al., 2007) which
leads to the underestimate of the physical capacity and abilities of their children with CHD.
Family Factors
It was determined that chronically ill children had more behavior problems than health
children (Lewis & Khaw, 1982). However, a child’s behavior problem may not be a result of his
or her condition, but a result of the tendency for mothers to be overprotective of their chronically
ill child. This study concluded that family functioning should be perceived as a factor
influencing children’s ability to adjust to their chronic illness (Lewis & Khaw, 1982).
9
Chronic conditions not only have an effect on the diagnosed individual, but also influence
family roles, responsibilities, interactions, relationships, and expectations for behavior. A
diagnosis of a chronic illness requires the family to adapt to the condition while continuing to
adapt to typical family development (Kools, Gillis, & Tong, 1999). Adolescents with more
severe chronic illnesses reported a greater number of limitations, which was found to have a
negative impact on family adaptation (Zashikhina & Hagglof, 2008). Herzer et al. (2010),
however, determined that the differences in treatment, course of disease, and prognosis did not
have a significant impact on family functioning.
Family involvement in a young adult patient’s healthcare is encouraged, however, the
family should allow the patient autonomy when learning responsible habits and skills necessary
for self-management and compliance (Kynas & Rissanen, 2001; Peter et al., 2009). McCurdy et
al. (2006) indicated that young adults require guidance and direction until they become more
responsible and independent in the management of their healthcare.
Medical Factors
Adaptation to Transition. Herman-Stahl and Peterson (1996) reported that adolescents
who have mastered “positive adaptation” showed an increase in their ability to adapt during their
transition. “Positive adaptation” was defined as the development of necessary skills for
successful adaptation and mastery in stressful life circumstances (Herman-Stahl & Peterson,
1996). Individuals with CHD reported a more successful transition when they were located close
to a cardiac health center (Reid et al., 2004). Transition from pediatric care to adult care was
reported to be more successful if the individual had frequent cardiac appointments as an
adolescent (Reid et al., 2004). Reid et al. (2004) determined that individuals who feared adverse
effects and had a fear of complications with their condition were more likely to adhere to cardiac
10
follow up care and have a successful transfer into adult care. Substance use was reported as an
indicator of unsuccessful transfer in medical care (Reid et al., 2004).
Successful healthcare transition is determined by “a trusting and reciprocal relationship
among providers, family members, and young adults” (Reiss et al., 2005). In this study, parental
and young adult resistance to the transition was noted as having a negative effect on successful
healthcare transition. Adolescents with CHD who are comfortable with their healthcare
specialists and that know what to expect during their appointments are more likely to have a
successful transition into adult care (McCurdy et al., 2006; Shearer et al., 2013).
Treatment Adherence. The results of the Sawicki et al. (2011) study determine that the
highest score in the Self-Management assessment was the individual’s maintenance of their
condition through taking medication and filling prescriptions. It was suggested that the
reasoning behind this score most likely resulted from frequent medication adherence throughout
childhood, which allowed them to master the “maintenance phase” of such skills at a young age
(Sawicki et al., 2011).
Compliance plays an important role in an adolescent patient’s ability to take
responsibility in the management of his or her condition. It was determined by Kynas and
Rissanen (2001) that support from nurses, physicians, parents and friends are all important
predictors of an adolescent’s good compliance. Adolescents were more likely to have better
medication compliance if their family was cohesive and had high adaptability (Reid et al., 2004;
Chaney & Peterson, 1989; Kynas & Rissanen, 2001).
Knowledge. Moons et al. (2001) determined that patients had adequate knowledge
“about their treatment, frequency of follow-up, dental practices, occupational choices,
appropriateness of oral contraceptives, and risks of pregnancy.” It was stated that patients had
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moderate knowledge in regards to “the name and anatomy of the heart defect and the possibility
of recurrent episodes of endocarditis during their lifetime, and the appropriateness of different
physical activities” (Moons et al., 2001) Patients reported a poor understanding of topics
concerning the reasoning behind their follow-up care, deterioration of the heart disease and
symptoms of this disease, endocarditis (characteristics and risk factors), smoking and alcohol
effects, and heredity of their condition (Moons et al., 2001). In a study by Lee and Kim (2012),
one participant revealed his insecurities in the management of his healthcare because he was
unaware of the reasoning behind certain tasks required for the management of his condition.
Finance. Adolescents with congenital heart disease who participated in the Sawicki et al.
(2001) study generated the lowest scores relating to health insurance and healthcare payments.
This is likely because parents usually manage insurance and healthcare financing and because
adolescents are unlikely to be covered by health insurance and employment-based insurance
(Reiss et al., 2005; Sawicki et al., 2011). This is detrimental for young adults with specific
health care needs requiring ongoing follow-up medical care (Reiss et al., 2005).
Relationships and Communication with Healthcare Professionals. Young adults with
CHD reported a sense of empowerment in gaining independence in their ability to manage their
illness and communicate with healthcare professionals on their own (Tuchman et al., 2005). The
highest scores in the Sawicki et al. (2011) study were reported to be the adolescent’s
communication with the healthcare specialists. It was suggested that adolescents should be
encouraged to communicate independently with the healthcare professionals to acquire the
necessary skills for transition (Reid et al., 2004; Sawicki et al., 2011; Shearer et al., 2013). Some
participants reported feeling concerned with communicating with their healthcare specialists
independently, because they could no longer rely on their parents as a translator. However, other
12
participants reported feeling a sense of empowerment in gaining independence in their ability to
manage their illness and communicate with healthcare professionals independently (Tuchman et
al., 2005)
According to Peter et al. (2009), the transition to adult care is especially stressful because
patients rarely see their pediatric doctors after the transition, which forces them to abandon close
relationships that may have formed throughout the young adult’s childhood. Reiss et al. (2005)
suggested that pediatric relationships should be terminated in a “therapeutic manner” in order to
encourage the development of new relationships with the adult healthcare professionals.
Concerns with Adult Care. McCurdy et al. (2006) determined that participants are
concerned with the shift in the module of care. Pediatric centers were described as having
family-centered care which identifies family as the center of a child’s life (McCurdy et al.,
2006). The transition to adult care means a transition to patient-centered care. The participants
of this study reported that with patient-centered care they sometimes felt intimidated and rushed
(McCurdy et al., 2006). A study by Scal and Ireland (2005) placed an emphasis on the benefits
of family-centered care promoting positive relationships between the patient’s parents and the
healthcare professionals. Healthcare services should be adapted to fit the family’s needs in both
care settings (Scal & Ireland, 2005).
Preparation. Many authors agree that preparation is essential to a successful transition
(McCurdy et al., 2006; Reid et al., 2004; Reiss et al., 2005; Tuchman et al., 2005). Transition
preparation has gained recognition within the past decade resulting in an increase in preparation
services (Scal & Ireland, 2005). Scal and Ireland (2005) determine it is more likely for
adolescents with more complex needs to be addressed in relation to preparation for their
transition.
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Reid et al. (2004) emphasizes the importance of preparation for the transfer of healthcare.
It was reported that adult care should be discussed in a familiar setting, preferably in the
pediatric setting. Preparation was discussed as a planned process requiring the use of
developmentally appropriate language, beginning well before the patient’s transfer of care (Reid
et al., 2004; Rosen, 2003). In this process, adolescent patients should be given clear details
about adult follow-up care and should have a clear understanding of the need for adherence to
adult-follow up treatment prior to the transfer (Reid et al., 2004). Tuchman et al. (2005)
suggested that opportunities to meet and start the development of new relationships with adult
healthcare specialists would be beneficial to a successful transition. McCurdy et al. (2006)
determines that preparation focusing on the adaption to new procedures and the shift in the
delivery of services would be beneficial to young adults approaching the transition of healthcare.
Reiss et al. (2005) determined that transition should be acknowledged as a developmental
process that involves many personal domains of the young adult’s hospitalization experience: the
family, the individual, the professionals, and larger healthcare systems. Children should begin
preparation for transition during childhood (Reiss et al., 2005). Doctors are encouraged to
discuss the future with children diagnosed with CHD as a way of preparing them for what they
will experience during the transition to adult care (McCurdy et al., 2006; Reiss et al., 2005).
Pediatric nurses reported often feeling challenged by initiating more adult-like discussions with
adolescents approaching the transition of care, which is necessary in the preparation for the
transfer (Kools, Gillis, & Tong, 1999).
Rosen (2003) developed a series of “requirements” necessary for the implementation of a
transition program:
14

Services need to be appropriate for both chronological age and developmental
attainment

Programs should be prepared to address common concerns of young people:
growth, development, sexuality, mood and other mental health disorders,
substance use, and other health promoting and damaging behaviors

Enhance autonomy, increase a sense of personal responsibility, facilitate selfreliance

Transition programs should be flexible to meet the needs of a wide range of
young people, health conditions, and circumstances

Designated professional should take responsibility for the process and act as a
coordinator and advocate who will help to facilitate their transition experience

Ongoing education for patients, families, and providers to highlight the
importance and value of a developmentally appropriate and coordinated
transition.
Medical Specialty Camps
Living with a serious heart defect can be a challenge that can negatively influence an
individual’s self-esteem and feeling of acceptance, oftentimes resulting in isolation from their
healthy peers (Shearer et al., 2011). Medical specialty camps help children and adolescents with
a chronic illness to develop skills, create positive attitudes, and increase their self-esteem (Desai
et al., 2013; Kiernan, Gormley, & MacLachlan, 2004). Campers are encouraged to participate in
activities that will improve their ability to form lasting peer relationships and provide education
about their medical condition (Briery & Rabian, 1999; Desai et al., 2013; Gillard et al., 2011).
Medical specialty camps provide individuals with exposure to others who share common
15
experiences, a decrease in feelings of isolation, and a means of distraction from the challenges of
their condition (Gillard et al., 2011; Simons et al., 2007).
Camps serve as a method of intervention focusing on long-term adjustment to the
challenges of living with a condition. They are becoming more recognized as a beneficial venue
for a therapeutic leisure experience for both the patient and, in some cases, their siblings
(Kiernan et al., 2004). Kiernan et al. (2004) indicated that individuals with an illness benefited
the most from the camp experience in regards to physical symptom distress. Individuals with an
illness experience a limited degree of autonomy and independence. For many, the camp
experience provides experiences for campers to practice autonomy, resulting in a greater sense of
accomplishment and power (Kiernan et al., 2004; Simons et al., 2007).
Gaps in Literature
Factors contributing to a successful preparation program. The transition from
pediatric to adult care is an emotional process that requires preparation and a process for
adaptation (Reid et al., 2004, Reiss et al., 2005; Sawicki et al., 2011). Future research focusing
on the factors contributing to successful preparation program for the transition to adult care,
medication adherence and the patient’s overall wellbeing would be beneficial to the development
and implementation of future preparation programs. There is also speculation concerning the
optimal timing, frequency, and setting of preparation (Reid et al., 2004).
Other venues for preparation education. Primary preparation education for the
transition from pediatric to adult healthcare is recommended to occur within the pediatric setting,
a setting in which young adult patients are familiar (Reid et al., 2004). Future research should
explore additional venues in which preparation can be provided to young adults.
16
Study Rationale
There is a need for improvement in the success of transition from pediatric to adult care
for young adults with CHD. It is important for young adults to be accurately educated about the
adult care setting, as well as their diagnosis and required treatment, prior to admittance to an
adult clinic. Preparation for the transition should be a planned process and is significant to the
success of the transition. Attendance at medical specialty camps with peers with similar cardiac
diagnoses has shown benefits for camp participants. This study focuses on the perceptions of
young adults with CHD who have previously attended medical specialty camps, regarding the
possible benefit of reinforcement education regarding the transition from pediatric to adult
healthcare during camp attendance.
Study Objectives
1. What are the experiences and perspectives of young adults with CHD regarding
transitioning from pediatric to adult healthcare?
2. What are the perceptions of young adults with CHD who have previously attended
medical specialty camps, regarding the usefulness of providing reinforcement education
about transitioning from pediatric to adult healthcare during camp?
17
CHAPTER 3: METHODOLOGY
Background
The aim of this exploratory, qualitative study was to gain an in depth view of the
experience of young adults with CHD regarding their perspective on whether a medical specialty
camp could be a venue for providing reinforcement preparation education for the transition from
pediatric to adult healthcare. This study received IRB approval (Appendix A).
Design
This study takes on the qualitative approach of utilizing and interpreting data provided
through self-report interview techniques. Interviews were the ideal method of data collection for
this study because the purpose of this study was to acquire the experiences, concerns, beliefs,
perspectives, and attitudes of a specific population regarding a particular aspect of their life and
experience (Opdenakker, 2006). Through face-to-face interview techniques, the interviewer and
the interviewee are given opportunities to directly react on the responses of the other. This
encourages more spontaneous reflections from the interviewees, without extended reflection.
These techniques also allow the analysis of social cues demonstrated by the interviewee for the
gathering of extra information (Opdenakker, 2006).
Tool
A semi-structured questionnaire (Appendix B) was developed. A short written section
preceding the interview asked demographic questions (age, marital status, place of residence,
education/employment, and educational attainment) and questions related to their diagnosis and
treatment. The interview questions included i) experiences living with a complex CHD and
resources used ii) knowledge regarding diagnosis and treatment adherence iii) experiences in
communicating with doctors and adhering to doctors’ orders iv) opinions regarding experiences
in the adult clinic v) parental role in medical care vi) thoughts regarding the benefits of
educational experiences focusing on the transition of care during a medical specialty camp. The
questions asked during the interview were based upon the participants’ experience living with a
CHD, their self-reported degree of independence in the self-management of their condition, and
their perception on providing reinforcement preparation education for the transition to adult care
at a medical specialty camp. The primary investigator, an undergraduate in the department of
Child Development and Family Relations, was the facilitator during the interview.
Participants
Participants in this study were young adults (ages 18-21 years) with a complex congenital
heart defect that have attended a weekend medical specialty camp within the past three years.
Participants were recruited through the records of past attendees of a medical specialty camp.
Eligible participants were mailed a letter (Appendix C) inviting them to participate in the study.
They each received a follow-up phone call 4-5 days after the mailing of the letters to provide
additional information about the purpose of the study, what is requested of the participants
should they choose to participate, and to inquire about their interest in participation. The phone
was the preferred means of recruitment for time efficiency, given the distance of several
participants. Seven participants were invited and five agreed to participate. The interview dates
and times were then determined in the convenience of the participant and the researcher.
Procedure
Each participant met with the researcher for an individual interview. The researcher
asked the questions provided in the questionnaire (Appendix B), and probed for further questions
determined by participant responses. The interviews were audio-recorded. At the beginning of
the interviews, the researcher made initial introductions and stated her role in the project. The
19
participants were thanked for their willingness to participate in the study, and were given
reinforcement information regarding the purpose of the study. The participants were then asked
to sign the consent form (Appendix D) before proceeding with the interview. Participants were
given a written questionnaire to determine demographic information including their age,
diagnosis, and past camp experience. Following the completion of the questionnaire, the
researcher began the interview. After the interviews were concluded, participants were given a
gas card of $10 toward reimbursement for transportation expenses.
Analysis
The researcher transcribed the individual interviews. The participants were coded as
Participant 1, 2, 3, 4, and 5. The researcher and a research team member, a graduate student in
the department of Child Development and Family Relations, reviewed the transcripts
individually for information relating to the research objectives. Statements and phrases
particularly essential in revealing the participants’ experiences and perceptions regarding coping,
self-management, preparation, transitioning, and medical specialty camps, were obtained. Both
team members met to compare their individual analysis of the data, and the data were coded into
five themes. Any disparities in analysis were discussed until consensus was achieved.
20
CHAPTER 4: RESULTS
The five participants were each individually interviewed, with the interviews ranging
from 22 minutes to one hour and 38 minutes in duration. The results are based on participant
responses with a focus on their experiences and perceptions in regards to transition preparation,
the transition process, and the possibility of a CHD medical specialty camp as a venue for
transition preparation. Table 1 provides participants’ demographic information (age, gender,
marital status, place of residence, education/employment, and educational attainment). Table 2
provides participants’ health demographic information regarding their diagnosis, additional
concerns, medication, number of visits to the clinic (pediatric and adult), and approximate
distance travelled to appointments.
Table 1
Participant Demographic Information
Participant
Age
(years)
Gender
Marital
Status
Place of
Residence
1
20
Female
Single
University
residence
2
21
Male
Single
3
18
Male
Single
4
18
Male
Single
5
21
Male
Single
Living with
parents
Living with
parents
Living with
parents
Living with
parents
Education/
employment
Status
Student and
Working
Working
Student and
working
Student and
working
Student and
working
Educational
Attainment
Some University
Some Community
College
In Grade 12
In Grade 12
Community College
graduate/University
Table 2
Participant Health Demographic Information
Participant
Primary
congenital
heart
diagnosis
Any
additional
health
concerns or
conditions
Medication
Number
of visits to
the clinic
recommended by
the doctor
Number
of visits to
the clinic
since 18
years of
age
Approximate
distance
travelled to
clinic
appointments
1
Sub Aortic
Ridge
None
None
One
10 minutes
2
Tetralogy of
Fallot
Pulmonary
valve
replacement,
Scoliosis,
and
Asperger’s
None
Once
every two
years
Once a
year
Four
40 minutes
3
Transposition
of the Great
Arteries
None
None
Once
every two
years
None
25 miles
4
Pulmonary
Atresia
None
Yes
Once
every six
months
None
50 miles
5
Marfan
None
Syndrome and
associated
heart
condition
Yes, but
chooses
not to
Once a
year
One
50 minutes
The data were analyzed and coded into five themes i) experiences: physical condition and
limitations ii) independence in CHD healthcare iii) transition and transition preparation iv)
resources and support and v) CHD medical specialty camp as a venue.
22
Experiences: Physical Condition and Limitations
Participant 1 was the only participant to report having no physical limitations growing up,
while the other four participants all had physical limitations at a young age. Participants 2, 3, 4,
and 5 reported having poor endurance, feeling out of breath, or experiencing heart pain. It was
recommended by their doctors that they not play sports, although participants 3, 4, and 5 all
participated in some sports, however, cautiously. One of the participants could not play any
sports or run around with any of the other children growing up. He reported that he had a
difficult time making friends, which made him feel isolated. Today, participants 1, 3, 4, and 5
have all been cleared to play any sport or participate in any activity while remaining
conscientious.
Participant 3 claims that if he had not had the surgery, if he were born without a
congenital heart defect, he would be better at a lot of things, but he believes he still does things
pretty average. He states that there is no real risk in doing a lot of things that other people can
and that “living with a congenital heart defect is no different than living as a regular person, you
are just a little more careful.” His doctor told him that if he gets lightheaded or if his heart rate
gets too high to drink water, sit down, and take it easy. Participant 5 says it could be a lot worse,
but he is alright for now. He states that there really is not anything he cannot do, although he
was recommended not to engage in high intensity sports. Overall, he says the management of his
condition is easier now that he is older and knows his body. He stated, “now that I am an adult, I
can pick and choose what I want to do.”
All participants reported feeling great, physically, most of the time. Participants 3 and 4
reported experiencing pain at times, but their doctors responded that nothing was wrong.
23
Participant 2 stated that he gets tired often, but other than that he feels fine. Participant 5
claimed that his condition affects his joints, causing him to feel stiff at times, but he does not
have chest pains. Participants 3, 4, and 5 all mentioned that they perceive their heart condition
has not held them back from leading complete lives.
Self-Image. The topic of self-image and ridicule did not initially emerge in the
participants’ personal accounts of their experience living with a CHD. However, when the
subject of self-image was brought up as a specific entity by the researcher, participants 1, 3, and
4 all described scenarios in which they felt ridiculed or self-conscious. Participant 3 stated that
people in middle school would sometimes make fun of him when playing sports because he
sometimes could not run and keep up with the others. Participant 5 reported that people would
always try to get him to play sports, however he never connected these incidents to feeling
ridiculed or bullied. He claimed, “ I just let them say what they wanted” and did not let it affect
his self-image. When questioned on whether or not their scars created a degree of negative selfimage, participants 1 and 4 stated that they were initially self-conscious of their scars, however,
they have developed an acceptance of this differentiating physical characteristic.
Both participants 1 and 4 mentioned feeling self-conscious about their scars at some time
in their life, especially when exposed by revealing clothing, such as a bathing suit. However,
both participants 3 and 4 shared the perspective of “scars are like stories,” with their rendition of
that quote being almost identical. Participant 3 reported never feeling ashamed of his scars. He
feels confused as to “why someone would pick on another person because of their scars.” He
emphasized that his heart defect, as well as other individuals experiencing similar defects, was
present from birth in which he had no control, “so why would anyone make fun of that?”
24
The topic of self-image built on the participants’ experience of living with a CHD
branched to the topic of sharing personal information about their CHD. Participants 3 and 5
reported that they enjoy informing people about their heart condition because they believe it to
be fascinating and get pleasure from informing others about a part of their personal life.
Participant 4 stated that he usually does not offer information about his heart defect, but as he
builds relationships with others, he begins sharing more personal information.
Growing up and living with CHD: Coping. All of the participants displayed positive
adaptation to their condition, claiming it has been a crucial aspect to their character development.
The interview questions focusing on “coping methods” were sometimes met with confusion and
misunderstanding. Participant 1 and 3 both expressed that they have not had to cope with their
condition because it has not negatively affected their lives. Participant 3 elaborated on feelings
of greater accomplishment in the things he is capable of doing, because he was not predicted to
have the ability to do these things. He admitted that there are aspects of CHD that require
personal limitations, but he has the goal to work every day to push those limits rather than sit
back and have a negative attitude about his condition and his inabilities.
Participants 4 and 5 discussed coping with their condition as an evolution of perspective.
Both participants talked about their primary perception of CHD as a misfortune, but have stated
that they now view it as a blessing to be alive. Participant 4 mentioned that sometimes he wishes
he had an ordinary heart, but ends up contradicting these feelings because he recognizes that an
ordinary heart “wouldn’t be mine.” This reiterates the focus of character development and the
integration of the participants’ condition into their identity and sense of self. Participant 2
perceived his condition as being a blessing that has helped him build his character. Participant 5
described ways he has used this opportunity (living with CHD) to reach out to other people. He
25
believes he has been able to help many people and influence the community. He talked about
reaching out to those with other conditions to provide support in an effort to change their
negative attitudes.
Independence in Care
Independence in care was assessed through questions geared towards the participants’
perceptions of his or her ability to participate in the duties that will be required of them as adults.
These include: attending appointments alone, being knowledgeable of their condition and of
ways to keep their heart healthy, adhering to treatment and medication, being consistent in
attending future appointments, communicating with doctors and nurses, and taking responsibility
in maintaining their condition.
Participants were asked whether they currently attended their appointments alone or with
their parents (Table 3). Participants 1 and 5 reported that they attend their appointments on their
own, without a family member present. Participant 5 admitted that he had initial feelings of
anxiety without his mother’s presence, however, her presence at his first adult appointment eased
his anxiety about future appointments. In his mother’s absence, he reported that he fills out his
own paperwork during appointments. Participants 2, 3, and 4 all reported having a family
member present at every appointment. However, they all indicated that they would feel
comfortable attending appointments on their own, but their family members like to be involved
in medical appointments. Participant 3 stated that he does not see how his mother’s involvement
will hurt anything, “I’m the one who is living with it and has it and my mom is the one who
raised [me] and has to deal with her child having it.” He mentions that he likes his mom to be
present because she fills out the “medical question sheet” in the beginning of every appointment,
sets the date for the appointments, and helps him decide how they are going to get to the
26
appointment. Participant 4 explained that his mother and grandmother’s involvement is out of
support for his CHD. Participants 2, 3, and 4 all displayed an understanding that they will have
to eventually attend appointments on their own and all discussed how it will be different, but
manageable. None of the participants predicted this change to produce much anxiety.
All participants indicated that they are confident in their consistency of attending future
appointments and plan to attend as many times as they are required. Participant 2 reported his
uncertainty in his ability to remember to make his appointments without his parents reminding
him. Participant 3 displayed his confidence in his future attendance by exclaiming, “I have
always been going to the doctor since the heart surgery so why would I stop?”
Treatment Adherence. Participants 4 and 5 are both prescribed medication, however,
participant 4 is the only one who takes it consistently. Participant 4 explained that he always
remembers to take his medicine because it was something he had to learn to do as a child, and he
has continued with that responsibility since. He mentioned that sometimes he struggles with
understanding the necessity of taking his medication when “he felt like his heart was doing just
fine.” However, he pointed out that lately he has been consistent in the adherence of his
medication to ensure the health of his heart. Participant 5 explained that he made the decision to
stop taking his medications as a result of unpleasant side effects. He stated his understanding
that as an adult it is his choice above any other individual and he feels comfortable in his ability
to manage his condition. Participants 1, 2, and 3 have not had to recently partake in any kind of
treatment, aside from attending appointments.
Communicating with Doctors and Nurses. All participants displayed a degree of
comfort in communicating with their doctors and nurses. However, the participants’ individual
experiences in communicating with doctors helped to differentiate them. Participant 1 and 5
27
attend their appointments alone, without their parents being present. Participant 1 reported
receiving more direct attention from the doctor when she attends appointments by herself as
compared to when she would attend them with a family member. Participant 5 expands on this
notion by expressing the freedom he feels when communicating with a doctor without his mother
present, because he can speak to the doctor more personally and “on a more man-to-man level,”
which he perceives as a positive aspect of attending his appointments alone.
Participants 2, 3, and 4 all attend appointments with another family member present.
This allows for joint information sharing between the doctor, the participant, and his family
member. Participant 2 reported that the doctors in the adult clinic speak to him more directly
than his mother. Participant 3 reported that the doctor addresses him and his mother equally to
ensure equal comprehension of the information given and that they both acquire adequate
answers to their questions. Participant 4 admitted that the doctors focus more attention on his
mother because she is more interested in the content of the appointment than he claims to be.
However, even as he admits being less intrigued with the information his doctor is sharing with
him, he feels like it is his responsibility to ask questions and perceives himself as more
independent when he speaks to his doctor about concerns he has for his health.
Knowledge about condition. All participants demonstrated having knowledge about
their CHD and were able to explain in detail the specifics of their condition and possible effects.
Participants 3 and 4 discussed the manner in which their doctors provided a detailed explanation
about their condition, verbally and with the use of diagrams. Participant 3 stated that during his
ultrasounds his doctor would show him his heart, point out the scar tissue from the surgery, and
compare the appearance of his heart to that of an ordinary, healthy heart. Participant 5 reported
looking up information about his heart condition and talking with doctors about it. He said he
28
“feels like he knows about 95% of what is going on” and that he would “be comfortable being
his own doctor if he could be.” Participant 3 discussed one of his biggest struggles with having a
CHD and with having past surgery is the uncertainty of whether he will have to receive future
surgery. Participants 3, 4, and 5 all demonstrated an understanding that even if the doctor does
not predict future surgery, it is still a possibility.
Knowledge that is critical for independence in self-care is the understanding of treatment
and the reasoning behind it. Participant 1 understands that she must attend her appointments and
take antibiotics when she goes to the dentist. She did not demonstrate a confident understanding
as to the reasoning for having to take antibiotics before she goes to the dentist, only that it
positively contributes to the stability of her health with having a CHD. Participant 4
demonstrated his knowledge of the medications he is required to take by describing the purpose
of each medicine.
Transition and Transition Preparation
All participants view transition as necessary for the management of their condition.
Participant 3 explained the reasoning behind the necessity of transitioning from the pediatric to
the adult CHD clinic as “a kid’s heart and an adult’s heart will do different things, so they just
want to make sure that it is doing the right things as an adult,” thus requiring a specialist in adult
CHD. Participant 4 stated, “When it comes to your health, it is necessary to do what it takes.”
Table 3 displays the participants and whether they have transitioned to the adult CHD clinic or
whether they still attend their pediatric CHD clinic. Out of the five participants, Participant 2
and 5 are the only participants to have transitioned to the adult CHD clinic. Both participants
described their transition as simple, claiming the transition generated minimal anxiety.
Participant 2 and 5 each experienced similar transitions; their adult clinics are located in the
29
same location as their pediatric clinics, so they did not have to adjust to a new environment.
Participant 2 reported that his CHD doctor sees both pediatric and adult patients, so he was not
required to change doctors as part of his transition. When asked to reflect on his experience post
transition, Participant 5 discussed the goals of the adult CHD clinic being similar to that of the
pediatric CHD clinic- focusing on his health.
Participants 1, 3, and 4 have not yet transitioned to the adult CHD clinic, however, they
are all aware that they are going to have to eventually make this transition. Participant 1
mentioned that she is stalling to transition due to her laziness to take the necessary steps to do so.
Participant 3 reported that his next appointment would be made with an adult CHD doctor. He
reported that the most difficult aspect of having to transition from pediatric to adult CHD
healthcare was adjusting to a new, unfamiliar routine. When the subject of anxiety for the
transition emerged in the interviews, participants 1, 3, and 4 all responded that they were
“playing the waiting game,” meaning they are waiting to see how the transition turns out instead
of growing anxious about it.
All participants perceived preparation for the transition from pediatric to adult CHD care
to be beneficial. Participant 3 reported that the purpose of preparation is to give you a better
understanding about “who you are going to see, where you are going, how you are going to get
there, etc.” Table 3 displays the ages at which the participants believed preparation for
adolescents should start. All participants reported receiving a degree of preparation ranging from
merely discussing it with his or her doctor to extensive preparation programs. Participant 3 and
4 both declared that their doctor has been preparing them from childhood by helping them
understand their heart conditions and how to care for themselves while managing their CHD.
Participant 5 was the only individual to have participated in a preparation program, which was
30
specific to his condition of Marfan’s Syndrome. Participant 5 reported having been adequately
prepared for his transition. He described the preparation program he attended,
One of the things was more so for adults, as opposed to when you were in the
younger class they were talking to you as a child, now they are telling you more things
they would tell an adult. Like its getting more serious, like they will tell you about
problems more, like the things they were telling your parent, they are telling you now….
I could see it being scary for some people going from their parents handling everything to
them doing it…There is a legal class in terms of your legal rights as an adult, from being
switched over from child to an adult…There were some other ones, there was even one
for parents giving advice to their children if their children were going from the child
program to the adult program.
He said that after he attended this program, he felt “right where he needed to be” in
terms of knowing what to expect when transitioning to a new doctor and in the transition from
his legal rights as a child to an adult. He spoke positively about the program he attended, and
reported feeling more confident in his transition to the adult CHD clinic. Although he has
already made the transition to the adult CHD clinic and participated in a preparation program
prior, he stated that he still feels as if he is uncertain as to what will occur in the adult clinic.
Participants 2, 3, and 4 all viewed the amount of transition preparation provided to
adolescent patients should be determined by the specific feelings they have regarding their
transition and their ability to adjust to adversity. Participant 3 stated that he believed it would be
beneficial for the doctor to discuss with the patient and his or her family about any concerns and
address the specific concerns of those particular individuals. When asked to expand on his
perspective, Participant 3 exclaimed, “Whenever you are catering to the patients, you are
catering to the patients needs.” He does not believe it is necessary for him, personally, to view
the facility and meet the new doctor prior to his first appointment at the adult clinic, “but if there
is someone who is more worried about moving to the adult clinic, maybe go[ing] up and
meet[ing] the doctor, the area, and the facility, and the people within the department- who they
31
will be speaking to and seeing on a yearly visit,” would be beneficial. Participant 4 stated that
preparation depends on the facility the individual is currently located and the medical facility in
which they are preparing to transition.
Table 3
Participant Preparation and Transition Status
Participant
Transitioned
to adult
clinic
Attends
appointments
alone or with
parents
Received
preparation;
at what
age?
Age
preparation
should start
for an
adolescent.
Plan to continue
attending
appointments in
the future?
1
No
Alone
Yes;
Unknown,
16-18 years
old
Yes
2
Yes
With parents
Yes;
18 years
18-20 years
depending on
the individual
Yes
3
No
With parents
No;
Not
applicable
6 months
before the
individual
turns 18 years
old
Yes
4
No
With parents
Yes;
17 years
17 years old
Yes
5
Yes
Alone
Yes;
17 years
16 years old
Yes
Changing doctors. Transitioning to a different CHD health facility or institute often
coincides with having to change to a new CHD doctor. Participants 1, 3, 4, and 5 all expressed
their wishes to remain with their pediatric doctor. Participant 2 continued to see the same doctor
because his doctor specialized in both pediatric and adult CHD care. However, he did state that
32
“anything that is new is not going to be easy the first time, but you are going to get used to it
after a while.” Participant 3 reported that it is a more “homely feeling” to see his pediatric doctor
due to the ties patients create with their doctor whom has over the years been able to “know you,
know your files, background, and everything about you from a medical standpoint.” Participant 5
said he has been used to going to the same doctor and expressed his desire to not have to get
adjusted to a new one, even after he has transitioned to the adult CHD clinic. However, he
mentioned that he has no doubt he will warm up to the new doctor after some time. He discussed
the trust between a patient and doctor as having to build up over time. He stated, “After that
trust is built, the individual will feel more comfortable opening up about certain things.” He also
reported that he can talk with his pediatric doctor about anything and it would only be a matter of
time before he could talk with similar trust to his new doctor.
Although Participants 1, 3, 4, and 5 all expressed their desires to remain with their
pediatric doctors, they all demonstrated minimal concern in connecting with their new doctors.
Participant 1 stated that although she is shy and it takes her longer to warm up to people, she
understands that regardless, she must see a doctor so she will go where she is required.
Participant 3 displayed his displeasure in not being able to see the doctor he has grown
comfortable with, but stated, “Now I get to go make relationships with another doctor. It is just a
new chapter in the book.” He reported that meeting new people creates anxiety in some
individuals because they have not yet developed a level of trust. However, he stated that he has
no problem with communicating with new doctors about his CHD. He stated, “If I don’t ask, it
is just never going to be answered. I’m going to ask it, it’s the only way I’m going to be able to
find out.” Participant 1 mentioned that she would feel better about transitioning if her pediatric
CHD doctor gave her a recommendation for an adult doctor. Participant 3 had a similar position
33
and stated that he would rather know that he would be attending a clinic that his pediatric doctor
trusted. Participant 3 and 5 reported that their pediatric doctor told them names and contact
information for adult CHD specialists, however, Participant 1 did not report receiving such
information from her pediatric CHD doctor.
Resources and Support
All participants mentioned a medical specialty camp as being a positive support in their
experience of living with a CHD. When asked about her experiences in attending a medical
specialty camp, Participant 1 stated, “We are like a big family and it’s like the one place where
all the kids that have these conditions have someone that understands them and connect with
them on a level that people who don’t have the condition cannot.” Participant 2 described his
camp experience as a blessing that made him feel less isolated. Participant 3 referred to camp as
the “best thing that has happened to him,” and expressed his desire to have known about the
camp sooner. He described camp as “the best thing you can do for a kid that’s had heart surgery.
Just putting them around people that kind of know what they are going through and know who
they are… they tend to respect each other a lot more often, and they tend to be there and stick
together.” Participant 4 reported his belief that “more organizations in the medical field should
pay [medical specialty camps] more attention because it is making a difference in the lives of
kids.” In addition, all participants mentioned the positive effect of communicating and building
relationships with people that share similar experiences in living with a CHD. Participant 5
stated, “People are my number one resource,” in reference to the resources and support he has
had in living with a CHD.
34
Medical Specialty Camps as a Venue of Preparation Education
Table 4
CHD Medical Specialty Camp as a Venue for Preparation Education
Participant
Number of
years
participant
has attended
a medical
specialty
camp
Will
providing
preparation
education on
the transition
at camp be
beneficial?
What
activities can
be used to
provide the
preparation
education?
How old
should the
participants
be?
Who should
facilitate the
educational
activities?
1
10 years
Yes
Game and
lecture
14-18 years
Cardiologist
and nurses
2
10 years
Yes
Game and
lecture
14-18 years
Doctor or
nurse
3
4 years
Yes
Lecture
16-17 years
Doctor or
nurse
4
9 years
Yes
Lecture
Did not say
Counselors,
doctors, and
cardiologists
5
5 years
Yes
Lecture
Everyone in
high school
Adult doctor
Table 4 shows the participants’ responses to providing a reinforcement preparation
education component for teenaged participants at a CHD medical specialty camp. All
participants reported that it would be beneficial for a medical specialty camp to have a
preparation component for adolescents regarding their transition from pediatric to adult care. All
of the participants included doctors or cardiologists in their responses regarding the individual(s)
who should provide the preparation education. Participant 4 stated that adolescent campers will
benefit from this preparation education because many adolescents are dependent and close to
their parents. He also added that many of the campers that attend his medical specialty camp are
35
from small towns where they are comfortable and familiar with everyone, so it may be harder for
them to adjust to the new environment and adult CHD doctors.
In regards to how this education should be administered, the participants’ responses vary.
As seen in Table 4, some participants recommended integrating a preparation related game and
lecture style techniques, while some participants adamantly stated their dislike of games when
discussing an important, serious topic. Participant 1 stated that it would be beneficial to include
a game prior to a lecture or a game after the lecture to reinforce what was discussed. Participant
2 said that a game would increase adolescent involvement in the discussion, which would
improve their attention and learning. Participants 3, 4, and 5 were adamant about the use of
question and answer techniques to provide the preparation education rather than game or activity
style techniques. Participant 3 reported that he could not perceive how a game would be
effective, but admits that it depends on those participating. Participants 3 and 4 discussed the
role of a discussion leader being present at the preparation education session to guide the
conversation and present the topics. Participant 4 concluded that games are a great way to focus
the adolescents and grab their attention, but the lecture should be the actual “breakdown of what
it is that you are telling them to give them a better understanding.”
36
CHAPTER 5: DISCUSSION
The participants’ responses to the interview questions regarding the dynamics of
transition from pediatric to adult CHD healthcare made it apparent that they were at varying
stages in the transition process. Of the five participants, all 18 years of age or older, none were
classified as fully transitioned. It was apparent that the participants had mastered certain skills,
such as an awareness regarding the medical attributes of his or her condition and independence
in self-care. However, other aspects showed varying degrees of progress such as relocation of
follow-up care appointments to an adult CHD healthcare facility and independently attending
appointments.
The majority of participant responses suggested that they had positive experiences
regarding their transition from pediatric to adult healthcare. Peter et al. (2009) describes a young
adult as eager to display their mastery of skills in terms of their acceptance, maintenance, and
familiarity of their condition. The participants of the current study had similar eagerness,
demonstrating adequate knowledge regarding their treatment, frequency of appointments,
limitations, specific symptoms, past procedures, and possible future prognosis. Their ability to
recognize and control specific symptoms, such as shortness of breath and minimal heart pain, is
an important quality in independently managing their heart health. By understanding the
importance of attending adult CHD follow-up care in the maintenance of their heart health, these
young adults are more likely to be consistent in their attendance to adult CHD follow-up
appointments and adhere to current and future treatments. This is unlike the participants of the
Moons et al. (2001) study who showed a lack of understanding regarding the reasoning behind
follow-up care, which may result in a discontinuance in follow-up care (Lee & Kim 2012).
Erikson’s theory of human development states that adolescents are within a period of
identity formation. By integrating the defining characteristics of their condition into their
identity, participants of the current study positively adapted to their diagnosis. These individuals
showed little indication of self-consciousness, apart from varying insecurities in revealing their
scars. Shearer et al. (2011) reported that some adolescents are insecure in the definable
characteristics of CHD such as: cyanotic lips, small stature, and physical limitations, which have
the potential to lead to self-criticism and shame. The participants of the current study identified
themselves as young adults inevitably born with a heart condition that required consistent heart
health monitoring, which differentiated them from their healthy peers. The same participants
discussed their desire to be consistent in the adherence to future adult follow-up care. Accepting
and integrating all aspects of a diagnosis into one’s identity can contribute to positive perceptions
of follow-up care.
Sawicki et al. (2001) indicated that adolescents show great ability in their adherence to
taking medication due to the continued practice of self-management skills throughout their
childhood. This demonstrates the importance of children and adolescents integrating selfmanagement skills into their daily living habits. Only two participants of this study are required
to adhere to medication, and only one participant has remained consistent in his adherence. The
other chose to give up his medication due to negative side effects (drowsiness). He stated that as
an adult, he felt comfortable in his ability to make decisions regarding his healthcare. Adopting
the roles of an adult gives young adults the ability to independently make decisions regarding the
self-management of their condition. Though this can be viewed as an attribute of selfmanagement, young adults should understand that talking to healthcare specialists about
decisions regarding their healthcare is not a sign of dependence, rather it is important in the
38
management of their health. Young adults should be provided with the proper skills and
information for making appropriate decisions in regards to their health.
Earlier studies have discussed that preparation is essential for reducing anxiety that has
been found to result from transitioning (McCurdy et al., 2006; Reid et al., 2004; Reiss et al.,
2005; Shearer et al., 2011; Tuchman et al., 2005). Preparation education increases the
predictability and sense of control a young adult patient has over his or her transition process,
which has been proven to decrease anxiety (Lipman-Blumen, 1975). The participants of the
current study, however, reflected minimal anxiety for the transition of care. The two transitioned
participants described the transition process as simple, producing little anxiety. Those
participants who are anticipating transition expect to have anxiety when meeting a new doctor
and adjusting to a new routine, however, they have no doubt in their ability to adjust over time.
This suggests that preparation should not have a “one size fits all” design, but should adhere to
the individual person and his or her specific anxieties. Though the participants had varied
responses regarding the content of a preparation program, an important aspect that was agreed
upon by all subjects was that they would like to receive their pediatric cardiology doctor’s
recommendation for an adult CHD doctor. The recommendation from a familiar doctor would
provide them with reassurance, as participants felt they could then trust the new doctor even
more.
Peter et al. (2009) noted the importance of family involvement in the patient’s medical
care. The degree of anxiety produced during the transition process is dependent on the amount
of support available from the patient’s family (Lipman-Blumen, 1975). However, the adolescent
patient should be encouraged to demonstrate autonomy when learning responsible habits and
skills necessary for self-management and independence (Peter et al., 2009). Adolescents should
39
be encouraged to communicate independently with healthcare professionals to acquire the
necessary skills for transition (Reid et al., 2004; Sawicki et al., 2011; Shearer et al., 2013). A
participant of the current study admitted feeling more responsible and independent when
speaking to a doctor about his own concerns he has for his health, rather than relying on his
mother. By allowing him to communicate independently, his mother is providing the
opportunity to practice skills essential for the self-management of his condition.
Coincidentally, out of the five participants of this study, only two attended their
appointments independently. The participants with parent(s) who continued to be present during
their appointments, however, did not perceive parental presence as something that negatively
affected them. These participants reported feeling equally addressed by healthcare specialists,
and comfortable in communicating with them about personal concerns they have for their health,
regardless of the presence of their parent(s). Peter et al. (2009) stated that healthcare specialists
support active parental involvement while the patient is in the process of developing
independence. In conjunction with Arnett’s theory of emerging adulthood, the majority of the
participants of this current study demonstrated that they are still in the process of developing
independence in the management of their healthcare and are not yet ready for adulthood, though
they are all 18 years of age or older (Arnett, 2007).
Gillard, Witt, and Watts (2001) described medical specialty camps as an opportunity for a
fun and educational experience that can reinforce information given by healthcare providers.
Diagnosis specific medical specialty camps provide an opportunity for individuals with similar
experiences to connect and engage with one another without fear of being ridiculed (Desai et al.,
2011). Participants in this study unanimously indicated that a CHD medical specialty camp
could be an appropriate venue for reinforcement preparation education regarding the transition
40
from pediatric to adult care. Though the perceived benefit was universal, the overall content of a
preparation education program is still undetermined due to the participants having unique
concerns regarding transition. Future research could focus on the development of a tool to
determine individual concerns regarding transition. As a result, preparation education programs
could tailor to specific concerns along with providing adolescents with general education
regarding the process of transitioning.
The results of this study were used toward a continuous quality improvement program for
a weekend medical specialty camp serving children and adolescents with complex CHD. The
researcher, along with a graduate student with camp leadership experience, and a pediatric
cardiologist, facilitated a reinforcement preparation education session regarding the transition to
adult care. This session was provided to campers who were 15 years and older during their
attendance at a medical specialty camp. This was done to informally evaluate the effects of a
preparation program as a component of camp. The educational content included a PowerPoint
presentation and discussion regarding the transition from pediatric to adult CHD care, and an
interactive journal (See Appendix E), which was provided to and reviewed with the campers.
The interactive journal was developed based on literature review and participant feedback
regarding the process of transitioning and the skills necessary to independently manage their
condition. It provided a component of the preparation education session that could tailor to the
individuality of the campers. The campers were encouraged to focus on the aspects of the
presentation that pertained to their unique thoughts and concerns regarding the transition of care,
and to record them in their journal. Campers were expected to take the journal with them to use
as a resource during the transition process. The journal provides spaces for the adolescents with
CHD to reflect on prior knowledge, the skills necessary for independent self-management of
41
their conditions, and questions/concerns regarding the transition. Information outlining the steps
towards successful transition is presented with a space provided for individual reflection,
allowing the campers to interpret the information and apply it to their own unique feelings
towards transitioning. One camper expressed how useful the journal was, as he is currently in
the process of transitioning, claiming he could perceive its future benefit as a resource.
The PowerPoint presentation was presented to the campers using lecture style techniques.
The researcher began the session by relating the transition from pediatric to adult CHD
healthcare to other transitions in life, such as the transition between grades, schools, jobs, etc,
which all require change and adjustment. The researcher discussed the benefits of transitioning
to adult care as relating to better health as an adult, self-sufficiency and independence, and
prevention of a secondary condition. The criteria for being fully transitioned was presented as:
you must attend the CHD adult healthcare facility independently, meet and begin to build a
relationship with your new adult doctor, schedule and manage your own appointments, have a
full understanding of your medical condition including typical and atypical symptoms, manage
your own medications, be able to fill your own prescriptions, know your personal limitations,
and be able to recognize when you should limit yourself.
Following the introduction to the process of transitioning, the graduate student discussed
the skills necessary for independence and their correspondence with the skills necessary for selfmanagement of their condition. Campers were encouraged to participate in a discussion
regarding the skills essential for independent self-management. The researcher and graduate
student elaborated on the previously mentioned criteria for becoming fully transitioned and
discussed the basic responsibilities of a young adult with CHD approaching the transition of
CHD healthcare.
42
In evaluation of the preparation education session, the researcher noted that although the
majority of the participants of this study indicated lecture style techniques as the favorable
method of administration, the information might be more engaging for adolescent campers
through the use of lecture presentation techniques while integrating interactive activities for
camper participation.
Study Limitations
This study has a small sample size of five participants. However, the interview data
facilitated an in-depth analysis of the transition experience of five individuals with CHD. Of the
five participants interviewed, four were male and one was female. All of the participants attend
the same clinic and medical specialty camp. A larger sample size including individuals from
various locations, transition experiences, and medical specialty camp experience could provide
information that can be applied to a larger population. In addition, the experiences and
perceptions of a larger number of participants could be beneficial in the development and
implementation of future preparation programs to facilitate transition of individuals with CHD
from pediatric to adult healthcare.
Conclusion and Implications
The participants in this study unanimously perceived a CHD medical specialty camp to
be an appropriate venue of providing reinforcement preparation education to adolescents
regarding their transition from pediatric to adult care. Future research could indicate other
possible venues that would be perceived as beneficial for providing preparation education.
While the current study, participants did not report specific anxieties regarding their own
personal transition, they were able to acknowledge the possibility of transition related anxieties
developing in other individuals. Participant responses also indicate that they are at various levels
43
of transition, none being fully transitioned. The varying degrees of anxiety and positions in the
transitioning process imply that preparation education programs should not have a “one size fits
all” format. Future research could also focus on the development of a tool to determine the
specific anxieties of the adolescents receiving the preparation education as a means of tailoring
to concerns specific to each individual. Providing reinforcement education to adolescents with
CHD regarding the transition from pediatric to adult healthcare during medical specialty camp
attendance may be another helpful strategy to promote a successful transition.
44
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49
APPENDIX A: ECU UMCIRB APPROVAL LETTER
EAST CAROLINA UNIVERSITY
University & Medical Center Institutional Review Board Office
4N-70 Brody Medical Sciences Building· Mail Stop 682
600 Moye Boulevard · Greenville, NC 27834
Office 252-744-2914 · Fax 252-744-2284 · www.ecu.edu/irb
Notification of Initial Approval: Expedited
From:
To:
Social/Behavioral IRB
Sarah McEarl
CC:
Priti Desai
Date: 3/3/2014
UMCIRB 14-000283
Re:
Can a medical specialty camp become a venue of providing reinforcement education regarding transfer from pediatric to
adult healthcare? A pilot study with young adults with congenital heart defects.
I am pleased to inform you that your Expedited Application was approved. Approval of the study and any consent form(s) is for
the period of 3/3/2014 to 3/2/2015. The research study is eligible for review under expedited category #6, 7. The Chairperson
(or designee) deemed this study no more than minimal risk.
Changes to this approved research may not be initiated without UMCIRB review except when necessary to eliminate an apparent
immediate hazard to the participant. All unanticipated problems involving risks to participants and others must be promptly
reported to the UMCIRB. The investigator must submit a continuing review/closure application to the UMCIRB prior to the date
of study expiration. The Investigator must adhere to all reporting requirements for this study.
Approved consent documents with the IRB approval date stamped on the document should be used to consent participants
(consent documents with the IRB approval date stamp are found under the Documents tab in the study workspace).
The approval includes the following items:
Name
Focus group questionnaire
Focus group questionnaire
Protocol Summary
Recruitment letter and consent form
Recruitment letter and consent form
Description
Interview/Focus Group Scripts/Questions
Surveys and Questionnaires
Study Protocol or Grant Application
Consent Forms
Recruitment Documents/Scripts
The Chairperson (or designee) does not have a potential for conflict of interest on this study.
IRB00000705 East Carolina U IRB #1 (Biomedical) IORG0000418
IRB00003781 East Carolina U IRB #2 (Behavioral/SS) IORG0000418
50
APPENDIX B: COVER LETTER
Date:
Dear___________________,
We are writing to invite you to participate in a research study as a young adult (ages 18-21 years)
who has a complex congenital heart defect. This study will be focusing on the participant’s
knowledge and perspectives regarding diagnosis, transition to adult care, adherence to follow-up
treatment, and their reflections towards potentially providing a reinforcement education
experience for young adult attendees of Camp WholeHeart. Sarah McEarl is the principal
investigator of this study. Joining Sarah McEarl as co-investigator is Kristin Kirby, a graduate
student in the Child Development and Family Relations department at East Carolina University.
The faculty mentor is Dr. Priti Desai, an assistant professor at East Carolina University, and a
certified child life specialist.
As part of this research project, participants will be involved in a focus group consisting of 3-6
participants, all diagnosed with complex congenital heart defects and have attended Camp
WholeHeart within the past 3 years. A focus group consists of a group of individuals that share a
commonality. The researchers will use a questionnaire to guide the discussion. Participants are
encouraged to answer the questions as well as respond to the answers of other participants.
Participants will be asked to discuss certain topics regarding his or her diagnosis focusing on his
or her experiences and perspectives. This experience has the potential to provide the participant
with different perspectives and insight regarding his or her diagnosis, transition of care, and
independence in self-management of treatment. The outcome of this study will indicate the
potential for adding an educational component to the camping experience contributing to the
preparation of young adults for the transition from pediatric to adult care.
The study will be greatly benefited by your voluntary participation. You may refuse to
participate or discontinue at any time in the study. The focus group interview will take no longer
than 2 hours of your time. You may choose not to answer any questions that make you
uncomfortable. The recorded interview will be transcribed. All data will be kept in a locked
cabinet in the faculty mentor’s office and only those individuals associated with the study will
have access to the data. The identity of any participant will not be revealed in the study results.
You will not have any costs from participating in this study. The benefits of this study include
self-awareness, insight, and a potential therapeutic process of talking about experiences with
CHD with individuals with similar diagnoses and experiences. This may lead to an addition to
knowledge regarding a young adult with complex CHD’s experiences and concerns in living
with a CHD, in the transition to adult care, and independence in the adherence of follow-up
treatment. This knowledge may be beneficial to the participant as well as healthcare specialists.
There are no foreseeable risks or discomforts for you to participate in this study. I am requesting
permission from you to use the information you provide in the focus group interviews in our
research study. We will call you 2-5 days after the mailing of this letter to see if you have any
additional questions about the study. Please understand that your permission is entirely
51
voluntary. Whether you choose to participate in this study will not affect your medical treatment
or future camp experience.
The study will take place in the ECU Rivers Building. If you cannot make it to the location on
the determined date and time, we will discuss the possibility of your involvement in an
individual interview. An official consent form will be provided to you prior to your participation
in the study for you to sign (attached is a copy of the consent form). Thank you for your interest
in this valuable research study.
If you have any questions or concerns, please feel free to contact me at 919-805-1545 or by
emailing me at mcearls10@students.ecu.edu. You may also contact Priti Desai at 252-328-2866.
If you have any questions about your rights as a research participant, you may contact The
University and Medical Center Institutional Review Board at 252-744-2914.
Please review the Informed Consent provided below to give your consent for participation in the
study.
Sarah J. McEarl
Principal Investigator
Undergraduate Student
Child Development and Family
Relations Department
East Carolina University
Kristin Kirby
Co-Investigator
Graduate Student
Child Development and Family
Relations Department
East Carolina University
Priti P. Desai, PhD, MPH, CCLS
Faculty Mentor
Assistant Professor
Child Development and Family
Relations Department
East Carolina University
Study ID:UMCIRB 14-000283
Date Approved: 3/3/2014 Expiration Date: 3/2/2015
52
APPENDIX C: INFORMED CONSENT DOCUMENT
CONSENT TO PARTICIPATE
Title of research study: Can a medical specialty camp become a venue of providing
reinforcement education regarding transfer from pediatric to adult healthcare? A pilot study with
young adults with congenital heart defects.
Principal Investigator: Sarah J. McEarl
Institution: East Carolina University, Department of Child Development and Family Relations
Address: Rivers West 124, East Carolina University, Greenville 27858
Telephone #: 919-805-1545
I have read the information regarding this study, provided by the consent letter, asked questions
and have received satisfactory answers in areas I did not understand. (A copy of this signed and
dated consent form will be given to the individual signing this form). I understand this study is
voluntary, there will be no penalty for my decision regarding participation, I can withdraw from
this study at any time, and the information that I offer will remain confidential. My identity will
not be linked to any results
I, __________________________________________________________,
(write your name here)
☐
Grant my permission to Sarah McEarl and the Co-Investigator to use my
information provided in the focus group interview in their educational research
project to understand the experiences and perspectives of young adults living with
complex congenital heart defects regarding their diagnoses and transition to adult
care. I voluntarily consent to Sarah McEarl and the co-investigator to use any of
the data gathered from me in their study and in the educational program
enhancement of Camp WholeHeart. I fully understand that the data will not affect
my future medical care, will be kept completely confidential and will be used only
for the purposes of their research study.
☐
Do NOT grant my permission for Sarah McEarl and the co-investigator to use my
information in their research project to understand the experiences and
perspectives of young adults living with complex congenital heart defects regarding
their diagnoses and transition to adult care and in the program enhancement of
Camp WholeHeart.
53
Signature of Participant:
________________________________________ Date: _______________
Name of Participant (PRINT)
PERSON ADMINISTERING CONSENT: I have conducted the consent process and orally
reviewed the contents of the consent document. I believe the participant understands the
research.
Person obtaining consent (PRINT)
Signature
Date
Study Investigator
Signature
Date
(PRINT)
Study ID:UMCIRB 14-000283 Date Approved: 3/3/2014 Expiration Date: 3/2/2015
54
APPENDIX D: INTERVIEW QUESTIONS
INTERVIEW QUESTIONS
Introductions
A. Introduce myself and co-investigator. State role in project.
B. Thank the participants for being part of the study. Tell them the purpose of this study.
C. Ask participants to introduce themselves. State their first names (last names are not to be
used), identify age of participant, what type of congenital heart defect diagnosis they
have, the number of times they attended camp, and any other information they wish to
share about themselves. (Note: Monitor the time, but do not rush anyone.)
D. Indicate to the group that they are part of a special group who has come together to
discuss topics regarding their experience living with a complex congenital heart defect.
However, their names will never be used in any written information.
Tell the participant that the discussion will be audio-tapped so that we can gauge better their
comments. However, any time that they do not want to be recorded, they say “off the
record” (or a similar phrase), at which time the recorder(s) will be turned off.
1. One person will speak at a time. Each person has a right to be heard.
2. All comments will be treated equally. No one person will monopolize the discussion
or topic.
3. If you get off track, I will get the group back on track.
4. Each person has a story or idea to share and we want to hear him or her.
E. Turn the participants’ attention to the written questionnaire in front of them. Ask them to
fill out the questionnaire to the best of their ability. Assure them that they are able to
leave certain questions blank if they do not wish to fill them out.
F. Written Questions: (to be filled out in the beginning of the interview session and
collected by researchers)
a. Name:
b. Age:
c. Marital Status (please circle):
i. Single
ii. Married
iii. Other:__________________________
d. Place of residence (please circle):
i. Living with parents
ii. Living with spouse, partner, friend, college/university residence, other
family member, or family friend
iii. Living on your own
e. Education/employment status (please circle):
i. Student
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ii. Student and working
iii. Working full time
iv. Working part time
v. Unemployed but looking for work
vi. Unable to work due to medical reasons
vii. Unemployed, homemaker, and unable to work due to medical reasons
f. Educational attainment (please circle):
i. Grades 9-11
ii. High school graduate
iii. Trade or technical school
iv. Some community college
v. Community college graduate
vi. Some University
vii. Completed University (Bachelor’s, etc)
g. What is your primary congenital heart diagnosis:
h. Do you have any other additional health concerns or conditions:
i. What, if any, does your current treatment plan include?
j. How many visits to the cardiology clinic have you had since you were 18 years
old?
k. Number of visits to the clinic recommended by your doctor:
l. Approximate distance travelled to clinic appointments:
m. At what age were you prepared for the transition to adult care? Were you prepared
before your transition?
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n. At what age do you believe preparation for transition to adult care would be
beneficial?
(Questions c, d, e, f, attained from Reid et al., 2004)
G. Begin interview.
a. (Interview questions include the broad questions and some possible probes. Other
probes may be added depending on participant responses.)
H. Begin with: we would like to understand your experience of transitioning from pediatric
to adult medical care. We want to then learn if you think camp may be a potential setting
for some additional transition related education.
a. At what age were you prepared for the transition to adult care? Were you prepared
before your transition?
b. At what age do you believe preparation for transition to adult care would be
beneficial?
c. Tell me about your experiences living with a complex congenital heart defect as a
young adult. Include both life and medical experiences.
i. How does your condition make you feel physically?
ii. Do you experience any limitations in the way you live your daily life? Are
they doctor-ordered, or self-administered?
iii. What has been beneficial to you in coping with your condition?
iv. Has your condition impacted your self-image, how you view yourself?
v. Have you experienced any issues or differences regarding your sexual or
reproductive health?
vi. Tell me about your biggest struggle in regards to your condition? In
regards to treatment adherence?
d. Tell me about the resources that have benefitted your experience with a complex
congenital heart defect.
i. What level of support have you received throughout the duration of your
condition?
ii. What types of resources have you had access too? Human, medical, etc.
iii. How have these resources impacted you?
e. Tell me about how knowledgeable you feel in regards to your diagnosis and
reasoning behind the treatment required of you.
i. What measures do you take to protect your heart?
ii. Did you know anyone with CHD growing up? Did you wish you knew
someone else with CHD? Besides Camp WholeHeart, have you ever
participated any other organization for individuals with CHD?
iii. Are you comfortable communicating with doctors and nurses?
iv. What are your goals for the future regarding your diagnosis, career,
abilities, and self-management of your condition?
57
f.
g.
h.
i.
j.
k.
l.
m.
v. What further information would you like to receive regarding your
diagnosis or treatment? How would you be able to get answers to these
questions?
What is your opinion about the adult cardiac clinic? Tell me about your
experiences with adult care?
i. When did you start going to the adult clinic (if applicable)?
ii. Did you have the choice on whether or not to move to the adult clinic?
What influenced your decision?
iii. Did anyone influence your choice to move to the adult clinic (ie: parents,
doctors, etc)?
iv. In what ways is the adult clinic similar to the pediatric clinic? Different?
v. Tell me about how you were prepared to move to the adult clinic.
vi. Do you have any concerns regarding the adult care clinic? In what ways
can these concerns be resolved?
vii. What recommendations do you have for healthcare professionals to make
the transition from pediatric care to adult care easier?
Tell me about the role your parents currently play in your treatment and
appointments.
i. At what age did you start coming to appointments without your parents (if
you come without your parents)?
ii. How do your parents respond to your diagnosis? To your doctor’s orders?
Tell me about your experiences in communicating with doctors.
Tell me about your experiences regarding treatment and medication.
i. What kinds of doctor’s orders have you had to follow?
ii. How often do you follow a doctor’s order?
iii. Have you ever not followed a doctor’s orders? If so, what was your
reasoning?
iv. Why/when do you usually schedule an appointment (follow-up care, when
an issue or complication occurs)
v. What type of issues or complications has occurred which prompted you to
call for an appointment?
We would like to learn from you regarding how Camp WholeHeart might be used
as a venue for educating teenagers about the transition.
i. Do you think educational activities will be beneficial to adolescent
campers to prepare them for the transition from pediatric to adult care?
ii. What activities would you find to be beneficial in preparing individuals
for the transition to adult care that can be incorporated into the camp
experience?
iii. Who should deliver the activities? Camp nurses, doctors, older campers,
other?
iv. I have developed a couple of educational activities. Can you give me your
suggestions regarding how useful they might be?
What advice would you give to other young adults with CHD?
Do you have any additional comments?
Thank you for your time. Your participation in this study has been helpful.
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APPENDIX E: TRANSITION PREPARATION JOURNAL (SAMPLE PAGES)
My Transition to Adult Healthcare Journal
My name is
_______________________________________________________________________
I am _______________________ years old
59
There are many
transitions in
life:
School
Work
Independence
Health
We are going to
focus on your
health care
transition. Health
care transitionTaking
is
steps to move toward adult health care:
related to: 1. Start early
Better health as2.an Know how to explain your health care needs.
3.
Keep a record of your appointments, important
adult
medical history, phone numbers of doctors and your
Self-sufficiency and
medications.
independence4. Begin to make your own medical appointments.
Prevention of5. Write down questions for your doctor or nurse
practitioner before your visit.
secondary condition
6.
Discuss your health concerns with your doctor
independently.
7.
Learn about your health insurance and health care
finances.
8.
Talk to your pediatric doctor or nurse practitioner
about when is a good time for you to transfer your care.
9.
See your primary care provider on a regular basis
to help you stay healthy.
10.
Meet adult providers before you begin your
transitions
60
The Transition Process
What is transitioning from pediatric to adult CHD healthcare?
Transitioning is essentially the movement from pediatric healthcare to adult
healthcare. However, transitioning involves more than just the movement of
healthcare. The transition to adult healthcare occurs when you begin to enter
adulthood. As an adult, you must acquire skills necessary for independence.
These skills are important in the management of your medical condition
When do I transition?
You begin the transition process before you turn 18
years old. You formally begin the transition process
when you turn 18.
What does it mean to have transitioned?
Transition does not occur at a single specific moment, it is a
process. You can begin practicing the skills for independence
in managing your health condition even before you turn 18.
You will not be required to have control over the management
of your health condition right as you turn 18. To be fully
transitioned you will:
1. Attend the adult congenital heart defect clinic
2. Meet and begin to form a relationship with your new,
adult doctor
3. Attend your appointments by yourself, without your
parents
4. Schedule and manage your own appointments
5. Have a full understanding of your medical condition;
typical and atypical symptoms
6. Manage your own medications, and be able to fill your
own prescriptions
7. Know your own limitations and be able to recognize
when you should limit yourself, on your own
61
My health condition is:
It is important for you to be
knowledgeable about your condition
and have the ability to recognize the
symptoms of your condition and
possible limitations. It is equally as
important that you are aware of the
signs of possible complications, as
well. Please use the space provided
to write down everything you know
about your condition, your
symptoms, limitations, and signs to
look out for and what they may
indicate.
62
Independence Skills
Transitioning from pediatric to adult
care is about developing the necessary
skills in independence. First begin by
writing down skills you believe are
necessary for living independently as
an adult, relating to your condition as
well as your daily life.
Next, circle the skills you believe you are completely comfortable
with and have mastered. Let’s discuss these skills and what they
involve.
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