Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities.
ABSTRACT The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context.
We conducted semi-structured individual interviews with 15 youth and 15 adults with cerebral palsy, spina bifida, and acquired brain injuries of childhood, and their parents (n = 30). Respondents discussed their health care services, their experience with clinical transition, and contributing factors. We analyzed the transcripts using qualitative methods.
All participants identified challenges in transition, including: lack of access to health care; lack of professionals' knowledge; lack of information and uncertainty regarding the transition process. Two solutions were identified: early provision of detailed information and more extensive support throughout the clinical transition process.
The challenges of clinical transition were universal. More extensive information and support is needed during transition to ensure an efficient move to appropriate adult-oriented health care.
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ABSTRACT: Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals.08/2013; 2013:286751. DOI:10.1155/2013/286751
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ABSTRACT: Adolescents represent a significant proportion of the patients seen by pediatric urologists (PU). Adolescents that require long-term follow-up (FU) eventually need to be transferred to adult care. This research aims to describe the disease profile of adolescent and adult patients from a referral PU clinic, in order to allow future medical education and cost planning. A retrospective review was made of cases seen in a PU referral clinic from January 1st to December 31st 2011. Patients were classified as child (≤12 years old), adolescent (12 < age ≤ 18 years old) or adult (>18 years old). Diagnoses and presentations were analyzed. 521 patients were seen: 404 children (77.5%), 103 adolescents (19.8%) and 14 adults (2.7%). Clinical profiles differed between the three groups. 43.7% of the adolescents and all adults were FU cases or patients with late sequelae of congenital diseases. Some diseases predominated largely in adolescents. Adolescents represent a significant proportion of our PU clinics. Half of them are FU cases or present sequelae from previous treatments/diseases. Some adolescents do not adapt to adult care, and persist being followed up by PU.Journal of pediatric urology 07/2013; 10(3). DOI:10.1016/j.jpurol.2013.06.009 · 1.41 Impact Factor
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ABSTRACT: A better understanding of the needs of adolescents and emerging adults with special health care needs (AEA-SHCNs) is essential to provide health care transition services that represent best practices. The purpose of this systematic review was to evaluate the research on health care transition for AEA-SHCNs from their perspectives. A comprehensive literature review of research publications since 2005 was performed using the PubMed, Cumulative Index to Nursing and Allied Health Literature, and EBSCO databases. Thirty-five studies met the final review criteria. The process of transition from child to adult for AEA-SHCNs is complex. Individuals experiencing the transition desire to be a part of the process and want providers who will listen and be sensitive to their needs, which are often different from others receiving health care at the same facility. More research that considers the voice of the AEA-SHCNs related to transition from pediatric to adult care is needed.Nursing outlook 07/2013; 61(5). DOI:10.1016/j.outlook.2013.01.008 · 1.83 Impact Factor