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 11 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. 13 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 REFERENCES Arnett, J. J. (2007). 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Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 generic core scales. Health and Quality of Life Outcomes, 5, 43 Zashikhina, A., & Hagglof, B. (2008). Family functioning and juvenile chronic physical illness in northern Russian. Division of Child and Adolescent Psychiatry, 98, 355-369. 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 55 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? 56 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. 58 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. 63