The Online Parent Information and Support project, meeting parents’ information and support needs for home‐based management of childhood chronic kidney disease: research protocol

Abstract

This article is a report of a protocol for studying the development and evaluation of an online parent information and support package for home-based care of children with chronic kidney disease stages 3-5. The study is funded by a National Institute of Health Research, Research for Patient Benefit Grant awarded (December 2010). Approval to undetake the study was obtained from the Department of Health National Research Ethics Service (June 2011). Children with chronic kidney disease require skilled, home-based care by parents, supported by professionals. Parents have identified a need for continuously available online resources to supplement professional support, and structured resources tailored to parents' needs are highlighted by policy makers as key to optimizing care; yet, online resource provision is patchy with little evidence base. Using mixed methods, we will (i) conduct parent/child/young person/professional/patient and parent volunteer focus groups to explore views on existing resources, (ii) collaboratively define gaps in provision, identify desirable components, develop/test resources and conduct a feasibility randomized controlled trial, and (iii) of usual professional support versus usual support supplemented by the package. Eighty parents of children with chronic kidney disease will be randomized. Primary outcomes will assess parents' self-efficacy and views of resources, using standardized measures at entry and 24 weeks, and semi-structured interviews at 24 weeks. We will finalize trial components for a later definitive trial. By working collaboratively, we will derive a detailed insight into parents' information and support needs and experiences of using the package, and should see improved parental self-efficacy.