Search results for ‘Subject term:"cerebral palsy"’ Sort:
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A qualitative study, using focused interviews, of the information needs of families whose children's names are on a cerebral palsy register
- Authors:
- MILLER J., COLLIGAN J., COLVER A.
- Journal article citation:
- Child: Care, Health and Development, 29(6), November 2003, pp.465-471.
- Publisher:
- Wiley
Focused interviews with 13 families selected by purposive sampling were used to investigate concern that information held on a register of children with cerebral palsy was not being made available to contributing families and that its existence and purpose were not sufficiently understood. Results showed that many parents would like more information about data on registers including their child, and to be more involved in the design of the register and its reports, but there are practical difficulties in making time available. Although parents were surprised they had not already been given more information about the register's existence and purpose, none were resentful that their child's name was on once reassured about confidentiality and database security. Parents also had general concerns, unrelated to the register, about their need to be treated as equals by professionals, to have more information about equipment and to have earlier and clearer diagnoses. Registers of children with uncommon conditions have well-established roles in epidemiology, planning and research. By fully involving parents in ways suggested by this study, registers can also empower parents. It should also provide reassurance to those who hold such registers without explicit consent that the requirement to now obtain consent should not create resentment or jeopardise completeness.
Are the health needs of young people with cerebral palsy met during transition from child to adult health care?
- Authors:
- SOLANKE F., COLVER A., McCONACHIE H.
- Journal article citation:
- Child: Care, Health and Development, 44(3), 2018, pp.355-363.
- Publisher:
- Wiley
Background: The transition from child to adult health care is a particular challenge for young people with cerebral palsy, who have a range of needs. The measurement of reported needs, and in particular unmet needs, is one means to assess the effectiveness of services. Methods: 106 young people with cerebral palsy were recruited, before transfer from child services, along with their parents to a 3‐year longitudinal study. Reported needs were measured with an 11‐item questionnaire covering speech, mobility, positioning, equipment, pain, epilepsy, weight, control of movement, bone or joint problems, curvature of the back, and eyesight. Categorical principal component analysis was used to create factor scores for bivariate and regression analyses. Results: A high level of reported needs was identified particularly for control of movement, mobility, and equipment, but these areas were generally being addressed by services. The highest areas of unmet needs were for management of pain, bone or joint problems, and speech. Analysis of unmet needs yielded two factor scores, daily living health care and medical care. Unmet needs in daily living health care were related to severity of motor impairment and to attending nonspecialist education. Unmet needs tended to increase over time but were not significantly (p > .05) related to whether the young person had transferred from child services. Conclusions: Reporting of unmet needs can indicate where service development is required, and that the approach to measurement can be improved. As the number of unmet health needs at the start of transition is considerable, unmet health needs after transition cannot all be attributed to poor transitional health care. The range and continuation of needs of young people with cerebral palsy argue for close liaison between adult services and child services and creation of models of practice to improve coordination. (Edited publisher abstract)