The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol

Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.

The transition from pediatric to adult rheumatology care through creating positive and productive patient-provider relationships: an opportunity often forgotten

Background The transition of patients with a chronic rheumatic disease from pediatric to adult care has been characterized by poor medical and patient-centered outcomes due to the lack of comprehensive transition programs and the paucity of evidence to guide practitioners. We describe a multidisciplinary transition program, data assessing patients’ preparedness for transition and perception of care providers, and the association between these outcomes. Content Patients aged 14–19 with childhood-onset systemic lupus erythematosus (cSLE) or juvenile idiopathic arthritis (JIA) were recruited from Rheumatology Transition Clinics and Young Adult Clinics at a single institution. Participants completed the TRANSITION-Q, which assesses healthcare self-management skills as a proxy for transition readiness, and the Consultation and Relational Empathy Scale (CARE) questionnaire, which measures patients’ perception of their providers’ care and empathy. Summary Among 63 participants, 87% had JIA (mean age 16.5 years). Age was the only patient characteristic positively associated with TRANSITION-Q scores. CARE scores revealed overwhelmingly positive interactions between patients and healthcare team members. TRANSITION-Q and CARE scores were positively correlated. Outlook The transition from pediatric to adult rheumatology care should be recognized as an opportunity to impact the trajectories of patients entering adult care where the patient-provider relationship may play an important role.

The individualized, accompanied transition program “TraiN” for adolescent kidney patients – a local initiative

Since the transition from pediatric and adolescent to adult care often proceeds unaccompanied and unplanned, young patients with chronic kidney disease may experience health risks and non-adherence after the transfer. The psychosocial team at the Department of Pediatric Nephrology at the University Hospital of Cologne has therefore developed its local transition program “TraiN” for patients with chronic kidney disease aged 13 years and older. It combines structure and flexibility through predefined content modules that can be individually adapted to the patients, offering continuity and sustainability through a transition contact person. In addition, the family members are offered regular psychological consultations. The timing of the transfer is chosen individually depending on the level of psychosocial and medical transition readiness. The aim of “TraiN” is to strengthen the patients’ transition competence and the responsibility for their disease management and to provide them and their families the best possible support during the transition in order to prevent possible health risks. In the near future, a scientific evaluation will be conducted aiming to determine whether “TraiN” can support young people in their independence and self-reliant disease management.

Protocol of the BEST SIBS study: a qualitative case study to investigate the roles and responsibilities of siblings of youth with a neurodisability during health care transition

Background Children and youth with neurodisabilities may experience different challenges during their transition to adulthood, such as pursuing postsecondary education, finding employment, and navigating a new adult health care system. Families, including siblings, have an important role in the process for when youth with neurodisabilities are transitioning to adulthood. Siblings are in a unique position, where they can have different roles such as a friend, mentor, or caregiver. Siblings can offer various supports to their brother or sister with a neurodisability, but they require knowledge and skills for these different supporting roles. Currently, there are limited programs available for siblings to learn how to support their brother or sister with a neurodisability during transition. A first step to develop these sibling support programs is to understand the experiences of siblings of youth with a neurodisability. The purpose of this report is to describe a protocol of a qualitative case study aimed at examining the experiences of siblings including their roles and responsibilities to their brother or sister with a neurodisability during health care transition. Methods An exploratory single case study design will be used. An integrated knowledge translation approach to conducting this study will be used by partnering with the Sibling Youth Advisory Council comprised of siblings who have a brother or sister with a disability throughout all study phases. Participants will include siblings (ages 14–40 years old) with a brother or sister (ages 14–21 years old) with a neurodisability in Ontario, Canada. Semi-structured interviews will be conducted, that will be augmented by photo elicitation and drawings of family tree diagrams. Data will be analyzed using reflexive thematic analysis. Discussion Findings from this study will be shared with siblings, families, researchers, and the broader community. It is important to understand the roles and responsibilities that siblings are choosing to have to support their brother or sister with a neurodisability, and how these roles may change over time as their sibling is growing up and transitions to adulthood. Siblings may require knowledge and skills in these roles, and an understanding about siblings’ experiences in certain roles can help to inform the development of a resource to support siblings during health care transition.

Psychosocial benefit and adherence of adolescents with chronic diseases participating in transition programs: a systematic review

Chronically ill young people must transition to the adult health care service after their 18th birthday. The transition from child centred paediatric care to the adult health care service is not simply limited to the change from familiar structures to something unknown, but includes the entire process of growing up, of individuals becoming independent from their parents and taking responsibility for their own disease management. Young people are at particular risk of losing the connection to medical care during this phase and the transition of young people with chronic conditions is associated with a high risk of declining adherence and worsening health status. Studies suggest that transition programs might be helpful, yet there is no evidence as to whether risks can be reduced or which intervention components are particularly conducive to better outcome. This study aimed to identify transition-specific interventions and evaluate their effect on the improvement of psychosocial parameters, such as health related quality of life and adherence of patients. A systematic literature review was conducted. Electronic databases (Cochrane, Embase, Pubmed, Web of Science) were searched by two independent reviewers for intervention studies aiming to improve transition. Grey literature was also searched. Studies were included if they evaluated transition-specific interventions aiming to improve psychosocial or adherence parameters of participants aged 12 years and older suffering from a chronic condition. Both controlled trials and studies with measurements before an after the intervention were included. The GRADE approach was used to assess the quality of evidence. The inclusion criteria was met by forty studies. Patients suffered from different chronic conditions, such as inflammatory bowel disease, type 1 diabetes or juvenile idiopathic arthritis. Transition interventions used several program components, such as transition coordinators, patient education programs or web-based interventions. Outcomes included quality of life, transition-specific knowledge, adherence and loss to follow up. Thirty-eight studies showed beneficial effects in the intervention group, respectively after intervention. The overall study quality was low. A large number of studies evaluating transition-specific interventions was included. Transition-specific interventions seem to have beneficial effects on psychosocial outcomes and adherence. The promotion of health literacy, appointment arrangement service and the use of technical elements (websites, SMS) seem to be particularly helpful in the transition process. As the patient population was diverse, the results can be transferred to other diseases. Even though the overall study quality was poor, it is possible to draw some conclusions. Future studies should aim to include large numbers of patients over extended periods of time in order to assess long-term outcomes.

Experiences of youth with medical complexity and their families during the transition to adulthood: a meta-ethnography

Youth with medical complexity (YMC) are a small subset of youth who have a combination of severe functional limitations and extensive health service use. As these youth become adults, they are required to transition to adult health, education, and social services. The transition to adult services is especially difficult for YMC due to the sheer number of services that they access. Service disruptions can have profound impacts on YMC and their families, potentially leading to an unsuccessful transition to adulthood. This meta-ethnography aims to synthesize qualitative literature exploring how YMC and their families experience the transition to adulthood and transfer to adult services. An in-depth understanding of youth and family experiences can inform interventions and policies to optimize supports and services to address the needs of this population at risk for unsuccessful transition to adulthood. Using Noblit and Hare’s approach to meta-ethnography, a comprehensive search of Medline, CINAHL, Embase, PsycINFO, Social Sciences Index, and Sociological Abstracts databases, supplemented by hand searching, was conducted to identify relevant studies. Included studies focused on the transition to adulthood or transfer to adult services for YMC, contained a qualitative research component, and had direct quotes from youth or family participants. Studies were critically appraised, and data were analyzed using meta-ethnographic methods of reciprocal translation and line of argument synthesis. Conceptual data from ten studies were synthesized into six overarching constructs: (1) the nature and process of transition, (2) changing relationships, (3) goals and expectations, (4) actions related to transition, (5) making sense of transition, and (6) contextual factors impacting transition. A conceptual model was developed that explains that youth and families experience dynamic interactions between their goals, actions, and relationships, which are bounded and influenced by the nature, process, and context of transition. Despite the tremendous barriers faced during transition, YMC and their families often demonstrate incredible resilience, perseverance, and resourcefulness in the pursuit of their goals. Implications for how the conceptual model can inform practice, policy, and research are shared. These implications include the need to address emotional needs of youth and families, support families in realizing their visions for the future, promote collaboration among stakeholders, and develop policies to incentivize and support providers in implementing current transition guidelines.

Chronic illness and transition from paediatric to adult care: a systematic review of illness specific clinical guidelines for transition in chronic illnesses that require specialist to specialist transfer

IntroductionA quarter of a century has passed since the importance of transition from paediatric to adult care for chronically ill adolescents was highlighted by the American Society of Adolescent Health and Medicine. Despite discussions, the development of generic guidelines and some cohorting of age groups in paediatric speciality care, adolescents continue, unacceptably, to fall through the care gaps with negative clinical outcomes. Government bodies and international organisations have developed clinical practice guidelines (CPGs) for specific chronic physical illness although it remains unclear as to what extent these discuss transition from paediatric to adult care. This study systematically reviewed scientific and grey literature to determine how effectively transition has been incorporated into chronic illness specific CPGs.MethodsFive bibliographical databases; Medline, Embase, PsycINFO, CINAHL and Web of Science plus an extensive grey literature search from the internet were used to identify published guidelines between 2008 and 2018 using key words adolescents, transition, guidelines, together with the names of over 20 chronic physical illnesses which require specialist to specialist care after transitioning from paediatric care. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. In addition a measure of trustworthiness for CPGs was included. Guidelines were benchmarked against a published set of Australian transition principles embodying the comprehensive recommendations from National Institute for health and Care Excellence (NICE) transition guidelines discussing key transition aspects on: a systematic and formal transition process; early preparation; transition coordinators, good communication and collaboration between health professionals; individualised transition plan, enhancing self-management and active follow up after transition.ResultsInitially, 1055 articles were identified from the literature searches. Eight hundred and sixty eight articles were selected for title and abstract review. One hundred and seventy eight articles were included for full text review. Ultimately, 25 trustworthy CPGs were identified and included across 14 chronic physical illnesses. Five articles exclusively discussed illness specific transition recommendations and two included all the seven key transition principles. Three provided a minimal discussion of transition to adult care due to lack of high level evidence. Follow up and evaluation was the least addressed principle with recommendations in only seven CPGs.ConclusionsA limited number of chronic physical illnesses have illness specific CPGs that address transition from paediatric to adult care. The CPGs’ content emphasises the need for empirical data in order to develop quality transition recommendations for adolescents with chronic physical illness to ensure long term engagement and retention within health services.

Transition Task Force: Early efforts towards comprehensive pediatric to adult transition services in an academic medical center

BackgroundThe process of transitioning from a pediatric to adult health models of care is a significant challenge associated with heightened morbidity and mortality, particularly for patients with medical complexity.MethodsOur institution has no formal standardized transition services for patients transitioning from pediatric to adult models of care. The Transition Task Force was created as a community of practice to support interprofessional teams in creating a standard, yet individualized, approach to pediatric to adult transition across multiple departments of an academic center.ResultsThe Transition Task Force has been meeting for approximately 4 years, and almost three-quarters of participants report that participation resulted in changes to their clinical process, in spite of recognition of common barriers to effective transition.ConclusionsThe development of a transition-focused community of practice can effectively support implementation of quality improvement projects collaboratively in both a standardized and individualized fashion.

Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review

BackgroundTransition from pediatric to adult healthcare for adolescents with chronic health conditions has emerged as a critical period influencing health outcomes. Suitable transition readiness measures are necessary to facilitate effective planning. Currently, there is little consensus about well-validated transition readiness measures. The purpose of this systematic review was to identify best practices in transition readiness measurement for adolescents and young adults with chronic health conditions.Data sourcesAcademic databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, Google Scholar and Athabasca University Library’s Discover.Study selectionArticles were included that discussed the development and psychometric properties of transition readiness measures for adolescents and young adults (11–25 years) with chronic health conditions and/or that utilized a previously developed measure.Data extractionThe primary and secondary reviewers extracted data from the selected articles as per the data extraction tool developed for this review.ResultsForty-eight articles, representing 19 tools, were included in the review. Ten of the tools were disease-specific; nine were disease-neutral. According to the Cohen criteria, eight measures were “well-established assessments”. The Transition Readiness Assessment Questionnaire was deemed the best measure of transition readiness available. The literature search included only articles published in peer-reviewed journals; measures nearing completion or awaiting publication were not included. In addition, only English manuscripts were included, many from North America.ConclusionsDespite national practice guidelines and ongoing policy development, there is slow movement towards achieving a gold standard or best-practice measure of transition readiness.