Assessment of family needs in children with physical disabilities: development of a family needs inventory

BACKGROUND: Valid tools to assess family needs for children with physical disabilities are needed to help tune paediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. We examined differences in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory. METHODS: Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semi-structured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory. RESULTS: The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. Moreover, the panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7) (P < 0.0001). Most expressed family needs were related to both general and specific information concerning the child's development and treatment, aids and information about legislation and to rules relating to compensation of costs. CONCLUSION: Based on responses of parents and healthcare professionals the FNI-PR has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. An inventory checked by parents resulted in more family needs than a single open-ended question. The inventory may facilitate the implementation of family-centred care.