Perceptions of Transitional Care Needs and Experiences in Pediatric Heart Transplant Recipients
This article is corrected by:
- Errata: Erratum Volume 9, Issue 7, 1698, Article first published online: 20 May 2009
* Corresponding author: Samantha J. Anthony, email@example.com
Survival following pediatric heart transplantation (HTx) continues to improve. The transition from pediatric to adult care is becoming a pivotal stage in the ongoing medical management of this population. Published data support enhanced outcomes for adolescent patients with increased attention to transitional care. The purpose of this study was to explore the ‘transition experience’ of adolescent HTx recipients and families.
All teens (12–18 years) and parents at a single-center HTx program were invited to participate in semistructured interviews. Qualitative, phenomenological methodology was used to build theoretical knowledge and guided the data collection and analysis. The study population included 14 patients (7 males) with a mean age of 15.7 ± 1.8 years (11.7–17.8 years) and at a mean of 4.1 ± 3.3 years post-HTx (0.3–9.2 years) at the time of study participation. Major themes identified included: (i) adolescent disinterest and apathy regarding transition to adult care versus parental anxiety about their child's eventual departure from the pediatric transplant center, (ii) perceived differences in pediatric versus adult care and (iii) identification of strategies described as helpful in facilitating the transition. Understanding the experiences and perceptions of adolescent HTx recipients and their parents is crucial to planning effective transitional care and necessary for evidenced-based practice.
Transplantation is an established therapeutic approach for children and adolescents with end-stage heart disease. The field of pediatric heart transplantation (HTx) has witnessed improved outcomes for transplant recipients resulting in increased survival into adulthood (1). Consequently, the transition of care from pediatric to adult practitioners is a pivotal and increasingly important stage in the ongoing medical management of adolescent HTx recipients. However, very little is known about the experience of transition for this patient population and its potential impact on health outcomes.
The concept of transition
Transition has been defined as the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems (2). It is a multifaceted, active process that should attend to medical, psychosocial and educational and vocational needs. Transition planning is recommended to begin at an early age and to focus on increasing the independence, knowledge and involvement of the adolescent in their own care in order to equip them for the adult care system (3). The goal of transition is to provide uninterrupted, coordinated, developmentally appropriate, psychologically sound and comprehensive care (2).
Experts in the development and care of adolescents with a chronic illness advocate for structured guidance throughout the transition process (3,4). The benefits of a formalized transition program have been well established in chronic conditions such as cystic fibrosis and rheumatologic diseases (5,6). Poor treatment adherence, deficiencies in knowledge about their care and limited self-care skills have been identified as general concerns for adolescents transitioning to adult care (2). Others have identified frequent emergency department visits and admission to hospital, treatment nonadherence, graft rejection, depression, episodes of aggression and dysfunctional social and family situations as being associated with the transition period (7,8). Only recently has the process of transition attracted research attention in the area of solid organ transplantation (9). The area of transitional care in the field of transplantation is ripe for research and research initiatives are eagerly and urgently awaited (10,11). Transitional care research is needed to enhance the psychosocial and clinical outcomes of adolescent transplant recipients (10).
The purpose of this qualitative study was to explore the perceptions and experiences of pediatric HTx recipients and their parents surrounding their future transfer of care to an adult care facility. This research begins to address a significant gap in knowledge surrounding the experience of transition for adolescent HTx recipients and their families, and lay the groundwork toward formalizing and evaluating an adolescent HTx transition program.
Research that attempts to understand the meaning or nature of persons’ lives, lived experiences, behaviors and emotions lends itself to qualitative methodology. Qualitative methods are able to obtain the intricate details about phenomena such as feelings and thought processes that are difficult to extract or learn about through more conventional research methods (12). Qualitative methods are inherently inductive; they seek to discover, not test, explanatory theories (13).
Similarities that exist between quantitative and qualitative methods are often overlooked. Both methods are empirical, and require systematic data collection to deduce findings, and conclusions (13). Systematic research can be flexible and need not be prescriptive and rigidly predictable. ‘Contrary to popular misconception, qualitative research is neither haphazard nor unfocused’ (13, p. 4).
A phenomenological approach, rooted in the assumption that the individual's experience and meanings attached to this experience are pivotal to understanding a particular phenomenon, was utilized (14). A phenomenological theoretical framework allows the researcher to consider the experience as it is lived by the participants. The choice of methodology is rooted in the desire to illuminate the experience of adolescents and families whom are in the process of transitioning from pediatric to adult care and to gain an indepth understanding of the meanings they attribute to that experience. Each adolescent and parent will have a particular experience and unique perspective regarding transition, yet patterns can be determined that cut across this population. Research indicates that adult ‘proxies’, such as parents or teachers, are unlikely to accurately represent a child's or adolescent's world, no matter how well intentioned or informed (15). Including both adolescent transplant recipients and their parents in this study provides the opportunity to discover possible differences in their perceptions and experiences. A phenomenological approach to uncovering the key elements of adolescents and parents’ experiences provides important information and will inform future research.
Following institutional research ethics board approval, participants were recruited from the Heart Transplant Program at The Hospital for Sick Children, Toronto, Canada (SickKids), a large pediatric Tx center. At SickKids, care is transferred to an adult HTx program at 18 years of age. Most patients are transitioned to a HTx center across the street. In preparation for transition, adolescents are seen independently for part of each outpatient visit beginning at age 12. Transition is discussed with adolescents and parents in advance of the final pediatric visit, which is conducted jointly with a member of the adult care team. This practice was instituted based on research in other patient populations, but has not previously been examined in HTx. All adolescents who were a minimum of 3 months post-HTx and able to participate in open-ended interviews were invited to participate in this study, as were their parents.
Data collection centered on face-to-face semistructured interviews. The qualitative interview represents a conversation of sorts but is more structured than an ‘informal conversational interview’ and follows an ‘interview guide approach’ (16). The interview guide, based on clinical experience and available literature, included a list of broad question areas to address (e.g. what does transition mean to you? what would make the transition process easier?). The interview process remained flexible and open to change in order to respond to the answers and stories shared by participants. Interviews were conducted by a member of the healthcare team who had experience and training in the area of qualitative inquiry. Adolescent participants were interviewed independently from their parents. All interviews took place during regularly scheduled clinic visits, were approximately 1 h in length, were audiotaped and transcribed verbatim. Medical records and electronic patient charts were reviewed for pertinent patient demographics and clinical data (e.g. age, gender, geographical location, ethnicity, underlying diagnosis, date of transplant).
Interview transcripts were analyzed using open coding, the analytic process through which concepts are identified and their characteristics discovered in data, allowing significant statements, thoughts, ideas and meanings to be exposed (12). vanManen's phenomenological approach was applied by forming statements (codes) that captured the essence of families’ experiences paragraph by paragraph (17). Linking codes together and making statements of relationships among codes lead to the formulation of clusters of themes that provide insight into the essential elements of families’ perceptions regarding transition. All coding decisions were documented using ‘memoing’ (13). Memos make transparent the researchers’ ideas and beliefs about what is happening within the data. This step ensured that researcher bias and existing ideas were noted separately and bracketed out during the interview process. The coinvestigation team developed a coding framework for analyzing the transcripts and any differences in coding were solved by consultation in keeping with a qualitative paradigm.
Trustworthiness in qualitative naturalistic research refers to the use of techniques that ensure truth value, applicability, consistency and neutrality. The corresponding conventional terminology for these terms is internal validity, external validity, reliability and objectivity, respectively (13,18). Measures for ensuring quality and trustworthiness that were adhered to in this study included: prolonged engagement (sufficient interview time for engagement with participants’ perspectives); triangulation (interprofessional team informed study development and data analysis); negative case analysis (disconfirming or inconsistent cases relative to emerging phenomenon, theme or theoretical observation were sought); peer debriefing (numerous formal and informal discussions among the coinvestigation team to examine ideas, possible preconceived notions and potential alternative explanations), interrater reliability (all members of the investigative team were involved in data analysis and required 4/6 (66%) consensus on emerging themes); member checking (interviews concluded with a data summary and respondents were allowed to immediately correct errors of fact or challenge interpretations, as well emerging themes were presented and reviewed by a subsample of research participants in order to explore the viability of emerging findings); thick description (generated themes include rich descriptive accounts and quotes that present contexts and circumstances of sampled participants, findings and interpretations); and audit trail (minutes for all coinvestigator's meetings, field notes and final report) (13,18).
At the time of study enrollment, there were 17 adolescent HTx recipients between the ages of 12 and 18 years. Fifteen of 17 adolescent patients met inclusion criteria (two adolescents were unable to participate in interviews due to physical and cognitive impediments). One adolescent declined to participate. Fourteen adolescents and 17 parents (13 mothers and 4 fathers) agreed to participate in the study. Of 14 adolescent participants there were 7 males (50%), with a mean age of 15.7 years (ranging from 11.7 to 17.8 years) and a median time post-HTx of 4.1 years (ranging from 0.3 to 9.2 years). Cardiomyopathy (CM) was the pretransplant diagnosis of 9 patients (64%) and 5 (36%) had congenital heart disease (CHD). The patients with CM were an average of 7.36 years (+/− 4.4 years) postdiagnosis at the time of the interview, while the patients with CHD were an average of 16.3 years postdiagnosis (at birth). The sample was culturally diverse and eight participants lived within 100 km of our transplant center.
Of 17 parents who participated, 3 were parents of adolescents who did not participate in the study.
The themes as reported reflect the codes that were initially identified in our review of transcripts. Following established means of qualitative research, codes were reviewed relative to their content. As codes emerged with similar meaning, they were reclassified in an overall thematic group and general themes were identified. These emergent themes were verified as and upheld as key notions within the data. For example, initial codes included ‘not worried’, ‘not concerned’ and ‘who cares’ and ultimately transpired into the theme of ‘perceptions of transition’ and ‘adolescent apathy’.
Three overarching themes emerged from the data analysis. The themes involved (1) perceptions of transition; (2) perceived differences between pediatric versus adult care and (3) suggestions for transition program development.
Theme 1: Perceptions of transition: Differences between adolescents and parents
Adolescent perceptions of transition did not differ based on age, gender, underlying diagnosis or years posttransplant. During study interviews, the predominant attitude of the adolescent subjects (12/14) was apathy. When asked about the transfer of care at age 18 years, one adolescent replied ‘I realized it (transition to adult care) but it didn't much matter to me’. Others echoed this sentiment saying ‘I just take it as it comes’. and ‘Who really cares…I’m still not really too interested’. The adolescents hadn't considered that they might have a role in planning for or influencing the transition process—‘They’re a hospital too so they probably know what they’re doing. So I’m not really worried’. One adolescent noted that ‘(I) just hope for the best’.
The adolescents’ lack of concern regarding transition was in contrast to parents’ (14/17) perceptions of worry and anxiety. Parents consistently used language such as ‘Afraid’, ‘Scared for him’, ‘Worried’, ‘Overwhelmed’, ‘Panicked’ to describe their feelings about the prospect of transition. Parents worried whether their child would receive the same kind of care that they were used to from the pediatric transplant team. One parent described being…‘sick and anxious about the different levels of care and understanding of my child’. Parents felt that they would need to be vigilant in ensuring that the adult health care team had adequate knowledge about their child, ‘The anxiety of worrying about schooling someone new is sometimes overwhelming’.
Theme 2: Perceptions of transition: Adult care expectations
Adolescents and their parents shared more common views regarding the perceived differences between pediatric and adult care. Adolescents (11/14) expected a busier and more serious atmosphere at the adult center, stating ‘They don't see the individual as much. A lot of patients and much more crowded.’ and ‘So they wouldn't treat you the same…I don't know, no joking around & things.’ as well as fewer diversions ‘No books, no toys, no TV, no listening to music…not anything’.
Parents also anticipated a busy atmosphere and less individualized attention paid to their child. One parent commented ‘I don't think there will be as much care, personally and physically towards them. It may be a lot harder to have regular contact with the doctor’. Although some parents could see a positive side to increasing their child's independence, most (14/17) viewed this aspect of transition as negative, ‘Less emphasis on the emotional needs of children, more independent and higher expectations from the patient’. Parents (10/17) were also very concerned about their role at the adult center. Parents were often used to being the primary spokespersons and advocates for their child. Most parents still oversaw their child's medication administration and kept track of appointments. Since adolescents had often had their transplant at a young age, their parents knew their medical history better than they. Parents worried that they would not know the plan of care for their child at the adult center, ‘Parents will have less say. Care will be different’.
Theme 3: Perceptions of transition: Transition program development
Adolescents and parents had clear ideas about the best way to manage transition. Both groups felt strongly about the need for collaboration between the pediatric and adult centers. They felt there should be good communication between these centers and some sort of overlap in care. One adolescent commented, ‘The doctors that you would be seeing in the adult hospital should get together with you when you’re in the kids’ hospital and then kind of get to know them before they actually have to go. That's one thing that would make it easier. Getting to know the doctors before you actually go there’. and another noted ‘I’d like to see the place before I go…If I can get a tour while I’m still here to see what I’m getting into…’.
Similarly, parents (12/17) identified collaboration between pediatric and adult practitioners as important. This ranged from several early joint visits with adult and pediatric practitioners present to desiring many months of joint visits. ‘Introducing us to the new doctors and nurses. Joining us in the first few visits or combining some of the visits to get familiar with the new hospital & faculty would be beneficial’. Additional parent suggestions included a ‘Prepare(d) information sheet with summary of milestones’; ‘One assigned staff member on the new transplant team to answer questions & help with transition’ and group sessions to familiarize adolescents with the adult center and let them know they are‘…not the only one who is different.’ Half of the adolescents (7/14) also noted that having transition information on a website that they could access anytime would be helpful.
This study employed a qualitative approach utilizing phenomenological underpinnings to reveal the perceptions of adolescents and their parents regarding the transition from pediatric to adult care post-HTx. The age and approach to the transition from pediatric to adult care varies from one transplant center to another. However, at some point, most adolescent HTx recipients are transferred to a completely new health care environment with new providers and a different approach to care (9). Understanding the perceptions of adolescents and their parents regarding transition is a key step in ensuring a planned and effective transition process.
Three primary themes emerged from data collected. Adolescents and their parents demonstrate varied feelings around transition, with adolescents expressing apathy and parents expressing fear and anxiety. Both adolescents and parents perceive a negative difference in the overall quality of care and atmosphere at an adult center, pointing to a need to address these misperceptions in the development of a coordinated transition process.
For many adolescents, participating in this study was the first time they had really considered the prospect of transition. The degree of apathy regarding transition expressed by adolescents was surprising to the investigators and striking in its’ contrast to the overwhelming fear and anxiety expressed by parents. Attaining independence is a key developmental task in adolescence (19). None of the adolescents in this study expressed a strong desire to be more independent in their own care or identified this as a benefit of the transition process. Two of the adolescents had previously attended an information day at the adult care facility. Both of these teens had more detailed knowledge of the adult facility ‘You have to pay for television and phone and also private rooms…I won't have a private room, probably share a room and that's different…’ but did not mention the opportunity for greater autonomy in their care as a benefit.
It isn't surprising that the youth in this study were, on the whole, unworried about transition and transfer. Adolescents may have difficulty projecting themselves into the future because ‘executive functions’ that are seated in the prefrontal cortex are still developing. These functions include planning and organization, including the ability to imagine a future based on foreseeable issues (20,21).
Adolescent apathy and lack of interest was maintained in the context of overwhelming parent anxiety. Several parent statements indicated that they perceived themselves to be the key individuals in their child's health care including ‘schooling someone new’ in their child's care and having ‘regular contact with the doctor’. Parents who have been vigilant for years regarding their child's care will also need support to transition responsibility to the adolescent. Overprotective parenting conveys a message that the adolescent is not mature enough or can't be trusted to be more independent with their own care (10). Overprotectiveness may encourage the adolescent to disengage with the transition process because, as with other things, their parents will take care of it. Some evidence indicates that young adult survivors of CHD may not have adequately mastered the developmental tasks of adolescence due to limited parental and health care provider expectations, minimization of adolescent concerns and reluctance to discuss key issues related to adulthood such as sexuality, vocation and social independence (22). Preparation for transition over time will allow adolescents to take on greater independence for their care with a safe degree of parental support and will build their confidence in these behaviors. Adolescents need to practice adult roles and responsibilities in order to build independence (23).
Adolescents and their parents perceived differences between pediatric and adult care. Overall, the perceptions of adult care were more negative—not enough communication, very serious, not attending to the adolescents’ emotional needs and exclusive of parents. None of the adolescents in this study had yet transitioned to an adult center that is intriguing given the consistent, negative and often inaccurate impressions. One young adolescent thought that parents would not be allowed to visit at an adult center and that food would be provided only weekly. This is consistent with previous research that identified contrasting perceptions of the pediatric and adult care centers, with the pediatric center often viewed more positively. It has been suggested that these contrasts may relate to differences in the models of care (family-centered pediatric center vs. patient-centered adult center) (9). Similarly, recent findings indicate that patients are concerned that adult clinicians will not be attuned to or understand their needs and they may feel rushed, intimated and treated like just another patient (9,24).
The importance of cultivating positive attitudes toward ongoing care at an adult center has been identified. Research regarding adolescents with CHD found that those who had appropriate beliefs about adult care were more likely to attend follow-up at an adult care center (25). The source of participant views of adult care were not explored in our study, but may come from previous experience of a parent or adult family member or ‘hear-say’ from patients who had transitioned. It is also possible that pediatric practitioners convey a negative view when discussing transition with families.
Parents bring experience of their personal health care to the process of transition. Typically, adults see their family practitioners on their own. Parents in this study worried that they would not be included in the plan of care for their child at the adult center. They also worried about having to convey key information about their child's medical history and response to therapy to a new medical team. The negative and often inaccurate perceptions of adult care need to be addressed to provide a successful transition. Pediatric practitioners can represent their adult colleagues as experts in the care of adults with heart transplants. Pediatric care is typically family centered whereas adult care is patient centered. This does not mean that only the patient is included in health care planning and decision making. Patient-centered care focuses on respecting the patient's perspective and incorporating what matters most to them into the decision-making process (26). When parents are an important part of their adolescent's life, they will be included in a patient-centered model of care.
The desire for opportunities to meet staff from the adult care center in advance of transition was clearly articulated by both adolescents and parents. They expressed the need to know who would be taking over the transplant care, wanting to meet those practitioners in advance and ensuring that the adult practitioners would have the necessary medical information to continue care. Prior personal contact with adult care practitioners may be an important determinant of clinical outcome. Evidence suggests that diabetic young adults are more likely to attend outpatient clinic at an adult care center after transition if they have previously met the adult diabetes consultant (27). Others have also identified the importance of providing choice of adult care facilities or practitioners where possible, arranging a joint patient visit with pediatric and adult staff in advance of the transition and ensuring transfer of all medical and other information relevant to that adolescent and his / her care (8,27). The adolescents in this study also noted the desire for information about transition being available online. In order to engage this population in the process of transition, information must be presented in ways that will be meaningful to them.
Examining the ‘transitional experiences’ of pediatric HTx recipients and their families has enhanced our knowledge of the subjective experience of this distinct clinical population. Understanding the experiences of this group is crucial to the development of future descriptive and explanatory studies addressing the biopsychosocial impact of transition in the transplantation population. There remains a need for larger, prospective studies of the transition process, as well as increased research at the adult-care end of the transition continuum (10,11). This study provides a theoretical framework for future investigation and ultimately provides an evidence base from which strategies for enhancing services to this population can be built.