Keeping It TogetherTM: an information KIT for parents of children and youth with special needs

BACKGROUND: Provision and use of information about their children is a major concern to families who have a child with a disability. Strategies or systems to influence parents' abilities to receive, give and use information in a way that is satisfying to them have not been well validated. METHODS: This paper reports on the development and evaluation of a Parent Information KIT ('Keeping It Together') information management system and child advocacy tool. The KIT was designed to assist parents in giving, getting and organizing information in an effective way. The KIT was evaluated by a sample of 440 parents, with outcomes of use, utility, impact and perceptions of family-centred care measured at baseline, and after 6 months, and 15 months. RESULTS: Parents' perceptions of their ability, confidence and satisfaction when using information improved significantly after using the KIT. Parents' perceptions of care, as measured with the Measure of Processes of Care, also improved significantly in the areas of 'Enabling/Partnership' and 'Providing General Information'. Parents' ratings of the use and utility of the KIT were associated with increased impact and, in turn, predicted improved perceptions of care. CONCLUSION: Parents who received and actively used the Parent Information KIT experienced significant increases in their perception of their ability and self-confidence in getting, giving and using information to assist their child with a disability. Strategies for improving the use of the KIT among parents are discussed.