Transition Needs of Parents of Adolescents and Emerging Adults With Special Health Care Needs and Disabilities

Betz, Cecily Lynn; Nehring, Wendy M.; Lobo, Marie L.

doi:10.1177/1074840715595024

Cited by 63 publications

(47 citation statements)

References 75 publications

(337 reference statements)

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“…Parents were more concerned about transition than AYAs, and renegotiation of responsibility for health care was often challenging for parents, which has been reported elsewhere (Betz, Nehring, & Lobo, ; Lewis & Noyes, ; Walsh, Wynne, O’Hara, O’Donnell, & Geoghegan, ). Health professionals preferred to see YAs on their own to encourage and facilitate communication skills and independent healthcare management.…”

Section: Discussionmentioning

confidence: 58%

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

Coyne

Sheehan

Heery

et al. 2019

Journal of Clinical Nursing

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Aim and objectives To examine the needs and perspectives regarding healthcare transition for adolescents and young adults (AYAs) with the following long‐term conditions: diabetes, cystic fibrosis and congenital heart disease. Background Transition of AYAs within healthcare services has become increasingly important as more children are surviving into adulthood with long‐term conditions. Yet, limited empirical evidence exists regarding transition experiences. Design Qualitative study fulfilling the completed consolidated criteria for reporting qualitative studies criteria (see Appendix S1). Methods Semi‐structured interviews with AYAs aged 14–25 years (n = 47), parents (n = 37) and health professionals (n = 32), which was part of a larger mixed‐methods study. Sample was recruited from two children's hospitals and four general hospitals in Ireland. Results Transfer occurred between the ages of 16–early 20s years depending on the service. None of the hospitals had a transition policy, and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self‐management. The transition process was smooth for some young adults, while others experienced a very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses reported following‐up adolescents who struggled with treatment adherence and clinic attendance, whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young adults’ prerogative. Conclusions The amount of preparation and the degree to which the shift in responsibility had occurred prior to transition appeared to influence successful transition for AYAs and their parents. Relevance to clinical practice Nurses in collaboration with the multidisciplinary team can help AYAs develop their self‐management skills and guide parents on how to relinquish responsibility gradually prior to transition.

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Section: Discussionmentioning

confidence: 58%

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

Coyne

Sheehan

Heery

et al. 2019

Journal of Clinical Nursing

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“…The added presence of negative externalizing behaviors, common in adolescents diagnosed with Mild to Borderline Intellectual Disabilities, further contributed to a reduced sense of parental competence, less acceptance of the child, and diminished closeness with the child (Schuiringa et al 2015). The view of their parenting as flawed is further perpetuated as parent-child relations are realigned, including possible adjustments in role responsibilities and decision-making, during the complex process of transitioning from childhood to adolescence and then from adolescence to young adulthood (Betz et al 2015).…”

Section: Parentsmentioning

confidence: 99%

Adolescents with Disabilities

Maxey

Beckert

2016

Adolescent Res Rev

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Adolescents with disabilities face many challenges common to their typically developing peers. However, the ways that they resolve them may differ. The focus of this narrative overview was to summarize results from the disabilities in adolescence literature, highlight common research directions, evaluate the overall big picture of this literature, and draw conclusions based on general interpretations. Evidence suggests that the literature in this field of study is lacking. Suggestions for improvement include increasing the number of studies that focus specifically on adolescence across the various types of disabilities, establishing a theoretical base to anchor research, forming cohesion across disabilities among researchers, and taking a comprehensive approach to intervention studies. By addressing these issues in future research, scholarly knowledge will be increased, but more importantly, the lives of young people with disabilities can be greatly enhanced.

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“…The vast majority of the studies regarding emerging adulthood have concentrated on the experiences of the emerging adults themselves (Arnett, 2000(Arnett, , 2001Cherlin et al, 1997;Galland, 1997). However, in recent years a growing number of studies is focusing on the parents of emerging adults and the ways they cope with their children's transition to adulthood (Betz, Nehring, & Lobo, 2015;Mendonça & Fontaine, 2014;Shannon, Barry, DeGrace, & DiDonato, 2016).…”

Section: Discussionmentioning

confidence: 99%

Prolonged Co-Generational Living: The Case of Israeli Arab Parents and Their Emerging Adult Children

Dor¹

2017

WJSSR

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Parents’ feelings and attitudes toward Prolonged co-generational living—emerging adult children (young adults in their mid-late twenties or more) living at their parents’ home, are the topic of this qualitative study. The research population included 14 Israeli Arab parents (seven mothers, seven fathers, from different families) who have at least one child age 21-30 living with them. Findings from the semi-structured, open interviews indicated that Arab parents highly valued family reputation and expected their children to respect social norms, including leaving home only upon marriage. At the same time, parents themselves support marriage at a later age than traditionally accepted. This blend of new and old is discussed in relation to the Arab society in Israel, which shows a gradual openness to modernization while maintaining traditional values and culture.

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Transition Needs of Parents of Adolescents and Emerging Adults With Special Health Care Needs and Disabilities

Cited by 63 publications

References 75 publications

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

Adolescents with Disabilities

Prolonged Co-Generational Living: The Case of Israeli Arab Parents and Their Emerging Adult Children

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