Participation experiences of young people with cerebral palsy in key life situations: A qualitative study

Ding, Jacqueline Y.; Cleary, Stacey L.; Morgan, Prue E.

doi:10.1111/dmcn.15920

Cited by 5 publications

(1 citation statement)

References 30 publications

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“…A recent review showed that EFs such as the type of school, family ecology, and parental stress were associated with participation levels for children and adolescents with CP at the beginning of their transition process [ 68 ]. Especially for young adults, governmental programs which intend to provide funding and connect people with disabilities to services in their community, such as doctors, jobs, sports, and social groups, could be a means to support a more independent, participative, and fulfilling adult life [ 69 ].…”

Section: Discussionmentioning

confidence: 99%

Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy—A Scoping Review

Santana,

Rosenbaum,

van der Kemp

et al. 2024

IJERPH

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Purpose: The purpose of this study is to summarize the ICF foci, looking beyond body structures and function, and to analyze who has been assessed in research about adolescents and young adults (AYAs) with CP in the phase of transition to adulthood. Method: Medline, EMBASE, PsycINFO, and CINAHL databases were searched using terms related to cerebral palsy, adolescents/young adults, health development, participation, and independence. Studies including youth with CP (13–30 years old) published in English from 2014 to 2021 were considered. The methods of assessment reported in the included studies were used to identify the ICF foci and who was assessed. Results: In this study, 86 studies were reviewed. The main ICF foci are activity and participation (51% of the studies), personal factors (23%), ICF not covered (14%), ICF not defined (9%), with environmental factors being the least focused ICF component (3%). Most studies assessed AYAs directly (49% of studies). Conclusions: Activity- and participation-related constructs are the leading research focus of studies, and more attention is needed concerning environmental factors. AYAs are the main source of information, and the perspectives of other key figures are also being valued. To bridge the gap between child and adult health care, a broader view of health development and approaches to explore AYA developmental issues must be taken.

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Section: Discussionmentioning

confidence: 99%

Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy—A Scoping Review

Santana,

Rosenbaum,

van der Kemp

et al. 2024

IJERPH

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Branching into adulthood when you live with cerebral palsy

Henry

2024

Develop Med Child Neuro

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Characteristics of National Disability Insurance Scheme Plan Payments for People With Cerebral Palsy Described Using Publicly Available Data

Morgan,

Tang,

Imms

2024

Health & Social Care in the Community

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Introduction: The National Disability Insurance Scheme (NDIS) provides funding to Australians with permanent and significant disabilities to enable ‘an ordinary life’. However, we know little about the characteristics of NDIS funding in people with cerebral palsy (CP).Materials and Methods: This project explored the NDIS plan payments and support category by people with CP using publicly accessible NDIS data. A descriptive analysis was undertaken using observational statistics and variable comparisons to explore lifespan plan characteristics (core supports, capacity building and capital supports proportions) and payments between different age groupings and geographical regions.Results: 17,575 people with CP as a primary diagnosis were NDIS participants in March 2023, with plan payments of, on average, $138,000/year. Plan payments increased with age. Most funding was allocated to core supports (average $103,000 Pa) compared to capacity building (average $40,000 Pa) and capital supports (average $11,000 Pa). From 2021 to 2023, plan payments increased beyond the consumer price index. There were large differences in NDIS plan payments across metropolitan and regional locations, likely influenced by a range of personal and service availability factors unable to be identified using the publicly available data.Discussion: NDIS plan payments were larger in older people with CP. There was also low investment in the capacity building areas of employment and lifelong learning, despite this being a focus of the scheme. Unexplained differences in plan payments across regions require further research.

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Participation experiences of young people with cerebral palsy in key life situations: A qualitative study

Cited by 5 publications

References 30 publications

Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy—A Scoping Review

Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy—A Scoping Review

Branching into adulthood when you live with cerebral palsy

Characteristics of National Disability Insurance Scheme Plan Payments for People With Cerebral Palsy Described Using Publicly Available Data

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