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Parents' views of community care for children with motor disabilities
C L Haylock1, M A Johnson, V A Harpin
1Oxford Region Register of Early Childhood Impairments, John Radcliffe Maternity Hospital, Headington, UK.
Insights
Parents of children with motor disabilities reported challenges with fragmented health and social services, despite having access to care. Information gaps and limited choices hindered effective community care for these families.
Area of Science:
- Pediatrics
- Disability Studies
- Social Work
Background:
- Community care policies, including the Griffiths Report (1988) and the Children Act (1989), aim to meet the needs of children with disabilities.
- Understanding parental perspectives on existing services is crucial for evaluating the effectiveness of community care.
Purpose of the Study:
- To ascertain the views of parents of 4-year-old children with motor disabilities on health, education, and social services.
- To assess the availability and perceived usefulness of respite care for families with disabled children.
Main Methods:
- A questionnaire was administered to 33 parents of 4-year-old children with moderate to severe motor disabilities.
- Participants were identified from the Oxford Regional Register of Early Childhood Impairment.
Main Results:
- Most parents had access to various services, but faced issues with lack of early information, service fragmentation, and limited choices.
- Pre-school teacher counselors and nursery schools were highly valued, while health and social services were perceived as less appropriate.
- The study identified gaps in meeting community care objectives for some families.
Conclusions:
- Current health and social services may not fully meet the needs of families with children with motor disabilities.
- Improvements in information dissemination and service integration are recommended to enhance community care.
- Parental feedback highlights areas for policy and practice development in supporting children with disabilities.
Abstract:
In this study we have ascertained the views of 40 parents of 4-year-old children with motor disabilities, on the health and education services, social service and the availability of respite care. The children with moderate or severe motor disability who were born in 1985, were identified from the Oxford Regional Register of Early Childhood Impairment. Thirty-three (83%) completed a questionnaire taken to the home by the health visitor. Although most parents had access to a range of services, lack of information in the early years, fragmentation of services and limited choices were identified as problems. Parents regarded the breadth of care provided by the pre-school teacher counsellor and the nursery school as very useful, whereas the health service and social services were perceived as less appropriate. This small study suggests that for some families, the objectives of community care as identified in the Griffiths Report (Griffiths 1988) and reiterated in the Children Act (1989) are not yet being met.