Transition to Adult-Oriented Health Care: Perspectives of Youth and Adults with Complex Physical Disabilities

School of Rural and Northern Health, Laurentian University, Sudbury, Ontario, Canada.
Physical & Occupational Therapy in Pediatrics (Impact Factor: 1.46). 11/2009; 29(4):345-61. DOI: 10.3109/01942630903245994
Source: PubMed


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.

7 Reads
  • Source
    • "Excess mortality in CP is mainly seen at Gross Motor Function Classification System (GMFCS) level V, but the converse of this means that the majority of children are surviving well into adult life and will need to access adult services when their care at a children’s hospital has been completed [4, 5]. There is currently no accepted age cut-off for transition to adult services, but the importance of transition is increasingly recognised from the perspective of the person with CP, their family, their family physician, the tertiary paediatric hospital and the adult providers who may take over the individual’s care [6–10]. Formal transition arrangements commenced at The Royal Children’s Hospital, Melbourne 15 years ago, and the senior author was asked to participate in this process by the developmental medicine paediatric team. "
    [Show abstract] [Hide abstract]
    ABSTRACT: The majority of children with orthopaedic conditions in childhood survive to adult life, and there is a need for many of them to transition to adult services. This includes children with disorders such as club foot or developmental dislocation of the hip as well as those with complex syndromic conditions, bone dysplasias or neuromuscular disorders such as cerebral palsy and myelomeningocele. In many tertiary paediatric centres, transition has become a formal process in which clinicians document and communicate the status of patients who have been under their care to ensure a smooth transfer to adult services. The purpose of this report is to support the need for clear communication when children with cerebral palsy transition to adult services and to suggest that this transition represents a significant opportunity for audit and clinical research. Some of the factors to be considered in developing a minimum data sheet for the transfer or transition of children with cerebral palsy to adult services are described. Using the model of adolescents with cerebral palsy transitioning to adult services, orthopaedic surgeons can be encouraged to develop similar methodology and documentation for many other conditions for the purposes of communication, facilitation of transition, audit and clinical research.
    Journal of Children s Orthopaedics 04/2014; 8(3). DOI:10.1007/s11832-014-0569-0
  • Source
    • "Unfortunately, advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTC) who live beyond childhood but have limited expectations to live past early adulthood [2] [3] [4]. These young adults, who are the first generation with pedLTC to live into adulthood, face a multitude of challenges transitioning from the plethora of pediatric services to scant adult health services [5] and are vulnerable to a significant deterioration in health status and even increased mortality once they leave pediatric care [3] [6]. While the number of young adults with pedLTC is small, the numbers continue to rise [7]. "
    [Show abstract] [Hide abstract]
    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(9):286751. DOI:10.1155/2013/286751
  • Source
    • "Higher usage of emergency rooms (compared with same-age adolescents without special needs) and worse life prognoses (unemployment or school absenteeism) have been documented for graduated adolescents who did not adhere to adult clinics [7]. Patients and their parents report feeling insecure, having problems accessing adult health units and finding the adult professionals to be inexperienced with their particular condition [8]. Twenty-five percent of the graduated young adults reported by Downing et al. abandoned treatment after transition for adult Figure 1 Distribution of diseases (%) per age group. "
    [Show abstract] [Hide abstract]
    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 · 0.90 Impact Factor
Show more