Community-based family and carer-support programmes for children with disabilities

Heys, Michelle; Lakhanpaul, Monica; Allaham, Shereen; Manikam, Logan; Owugha, Jessica; Oulton, Kate; Morris, Christopher; Martin, Karen R.; Tann, Cally J; Martin, Jennifer; Kuper, Hannah

doi:10.1016/j.paed.2020.02.004

Cited by 2 publications

(1 citation statement)

References 8 publications

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“…Given the dearth of holistic, family-centred support for children and young people with complex neurodisability and their caregivers within the NHS (2), we reviewed interventions that might be suitable for this population in the UK (21) (22). From this review, we identified the Ubuntu model as a potential intervention that could be adapted to the UK context.…”

Section: Introductionmentioning

confidence: 99%

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

Prest

Wilson

Vassiliadou³

et al. 2023

Preprint

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Background Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges which require complex packages of multidisciplinary care. Cerebral palsy, an exemplar complex neurodisability condition, is the most common cause of serious physical disabilities among children globally. It is unclear the best way to meet the emotional, social, practical, and empowerment needs of CYP with complex neurodisability and their caregivers. The aim of this study was to determine the needs and priorities of those caring for CYP with complex neurodisability. This forms part of the feasibility phase of a wider study (ENCOMPASS) which aims to adapt the Baby Ubuntu intervention, a participatory caregiver programme for families of CYP with complex neurodisability, to an ethnically diverse urban UK context. Methods Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six healthcare professionals from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving trajectories, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. Results Three themes were identified that related to the aim of understanding caregivers experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) A Thirst for Knowledge and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

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Section: Introductionmentioning

confidence: 99%

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

Prest

Wilson

Vassiliadou³

et al. 2023

Preprint

Self Cite

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An In-Depth Investigation of Parents' Experiences about the Developmental and Diagnosis Process of Children with Specific Learning

İZOGLU TOK,

YILDIZ,

KAYMAZ

et al. 2023

Cukurova University Faculty of Education Journal

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This study examines the developmental processes, diagnosis processes, and needs of children with specific learning disabilities based on their parents' experiences. The research was conducted with a qualitative research methodology. The study group in the research was formed by the typical sampling method. The study group comprises the parents of 12 students with specific learning disabilities educated in mainstream classrooms. The researchers developed a semi-structured interview form in the context of literature. Content analysis of the transcribed voice recordings was made. As a result, four main themes emerged “Developmental Process, Social Relations, Diagnosis Process, and Strengths and Weaknesses.” The parents have difficulties in their children's self-care skills, motor development, social development, cognitive development, and language development compared to their peers in preschool. The parents noticed their children's development needs during the homework process and pointed out the low level of knowledge of the teachers in both preschool and school periods. It was stated that the children had developmental needs in all developmental areas, especially language development in the preschool period. Also, parents expressed that their children have difficulties with often drawing attention to the difficulties experienced by their children in social relations.

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Community-based family and carer-support programmes for children with disabilities

Abstract: The version presented here may differ from the published version. If citing, you are advised to consult the published version for pagination, volume/issue and date of publication 1 Title: Community based family and carer--support programmes for children with disabilities

Cited by 2 publications

References 8 publications

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

An In-Depth Investigation of Parents' Experiences about the Developmental and Diagnosis Process of Children with Specific Learning

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