Bibliographic Details
| Title: |
Families' perspectives of transitioning young adults with cerebral palsy to independent living. |
| Authors: |
Hickey, L. (AUTHOR), Harms, L. (AUTHOR), Culnane, E. (AUTHOR), Saunders, V. (AUTHOR), Imms, C. (AUTHOR), Ball, M. (AUTHOR), Reddihough, D. (AUTHOR) |
| Source: |
Disability & Rehabilitation. May2026, Vol. 48 Issue 10, p2989-3004. 16p. |
| Subjects: |
Families & psychology, Community support, Health services accessibility, Independent living, Research funding, Patient safety, Endowments, Medical quality control, Content analysis, Cerebral palsy, Family relations, Uncertainty, Psychological well-being, Confidence, Tertiary care, Children's hospitals, Descriptive statistics, Transitional care, Family attitudes, Thematic analysis, Research, Research methodology, Aging, Social support, Housing, Data analysis software, Adolescence, Adults |
| Geographic Terms: |
Australia |
| Abstract: |
Purpose: Adolescents and Young Adults (AYAs) with cerebral palsy (CP) face health and social inequities when transitioning to independent living. This study aimed to 1) understand the meaning of the transition to independent living for family members, and 2) identify barriers and enablers within family, community and service systems that may impact on this transition. Materials and methods: Exploratory research design. Family members of AYAs with CP were surveyed through two health services. Responses were analysed using reflexive thematic and inductive content analysis and descriptive statistics. Results: Thirty-two family members of 31 AYAs with CP took part in the study. Four themes were identified in relation to the meaning of the transition to independent living: 1) the opportunity for AYAs to experience adult life, 2) freedom for all parties, 3) uncertainty and worry about safely transferring care, and 4) future planning for ageing family members. Six themes related to barriers and enablers were [1]: AYAs health and wellbeing [2]; proximity to the AYA [3]; navigating complex service systems [4] timely access to funding and equipment [5], finding suitable accommodation and [6] confidence in care quality. Conclusions: Findings provide insights for health and disability services supporting AYAs and families transitioning to independent living. IMPLICATIONS FOR REHABILITATION: Understanding family members' perspectives on the meaning of the transition to independent living for young people living with cerebral palsy is needed to support the transition process. Although transition is desired, family members' experience of being overwhelmed by the structural inequalities that impede their young person's transition, needs to be addressed. Health professionals require a dual focus approach: simultaneously supporting a young person's independence goals, whilst incrementally building the skills and confidence of families to address their needs and concerns throughout the transition process. Health professionals should develop and maintain a thorough understanding of structural barriers and systemic challenges affecting independent living, enabling them to effectively guide families through the complex transition process with informed, tailored support. [ABSTRACT FROM AUTHOR] |
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| Database: |
Psychology and Behavioral Sciences Collection |
