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.

Subject terms:
cerebral palsy, children, families;
Content type:
research
Link:
Journal home page
ISSN online:
1365-2214
ISSN print:
0305-1862

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