On behalf of the Convenors of the North of England Collaborative Cerebral Palsy Survey (NECCPS). The collaborators in NECCPS are: R. Carpenter, Darlington; S. Pandy, Northwest Durham; N. Cookey, Durham; A. Paynter, East Cumbria; R. Menzies, Gateshead; K. Agrawal, Hartlepool; A. Colver, North Tyneside; C. Jessen, Northumberland; J. Dobson, North Tees; E. Lee, South Tees; H. Palmer, South Tyneside; A. Johnston,Southwest Durham; K. Whiting, Sunderland; S. Precious, S. Norton and V. Wood, West Cumbria; M. Gibson, Newcastle.
A qualitative study, using focused interviews, of the information needs of families whose children's names are on a cerebral palsy register
Version of Record online: 30 OCT 2003
Child: Care, Health and Development
Volume 29, Issue 6, pages 465–471, November 2003
How to Cite
Miller, J., Colligan, J. and Colver, A. (2003), A qualitative study, using focused interviews, of the information needs of families whose children's names are on a cerebral palsy register. Child: Care, Health and Development, 29: 465–471. doi: 10.1046/j.1365-2214.2003.00366.x
- Issue online: 30 OCT 2003
- Version of Record online: 30 OCT 2003
- Accepted for publication 24 June 2003
- cerebral palsy;
- focused interview;
- information sharing;
Background We were concerned that information held on a register of children with cerebral palsy was not being made available to contributing families, and that the existence and purpose of the register was not sufficiently understood.
Methods Focused interviews with 13 families selected by purposive sampling.
Results Many parents would like more information about the data on registers which include their child. They would also like to be more involved in the design of the register and its reports, but there are practical difficulties in making time available for such activity. Although parents were surprised that they had not already been given more information about the existence and purpose of the register, none were resentful that their child's name was on the register once they were reassured about confidentiality and database security. Parents also had general concerns unrelated to the register which were about their need to be treated as equals by professionals, to have more information about equipment and to have earlier and clearer diagnoses.
Conclusions 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. The study 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 jeopardize completeness.