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G160 WHAT ARE THE INFORMATION NEEDS OF FAMILIES OF CHILDREN WITH A DISABILITY? PILOT OF AN INFORMATION PRESCRIPTION
M. A. Bracewell, J. Judson, L. Nixon, A. Wolff.Nottingham City Hospital, Nottingham, UK
Introduction: The Department of Health is encouraging professionals to provide more information and empower families to share decision making.1, 2 At the Children’s Centre (a focus for multidisciplinary services for children and young people with complex disabilities) there are Information Officers to assist families seeking the most accurate, up-to-date and relevant information.
Aims: We have commenced a pilot of an information prescription to facilitate the provision of information and record the information needs of our clients.
Methods: Information prescription pads have been distributed to the paediatricians working in the Children’s Centre. The paediatrician discusses the child/family information needs at each consultation and completes an information prescription. This is taken or posted to the information officers, who then provide the information. The prescription records the age/diagnosis/language spoken/information required and whom it is for, with contact details.
Results: Eight paediatricians and one psychologist completed 42 prescriptions (median 3, range 1–21) involving 61 requests between July and November 2005. The families of 29 boys (median age 7.9 years; range 0.33–19) and 13 girls (median age 7 years; range 0.5–10.2) received information on a wide range of diagnoses (see table). 27 (64%) prescriptions were for the parent alone; three (7%) for the parent and child; two (5%) for the child alone. 21 requests related to support for the family; 15 were for information about the underlying diagnosis; 12 required information on suitable leisure activities; eight related to specific treatments and five related to education.
Conclusions: The prescription pads have aided audit of the information needs of our population. Packs of frequently requested information have been produced. We plan to roll out the service to all paediatric clinics in the New Year and to conduct a telephone survey …