Changing Needs for Information and Support in an Online System for Parents of Children With Kidney Disease

Background:Pediatric chronic kidney disease is psychologically, financially, and physically demanding on parents providing care. Parents often feel isolated because of the rarity of the condition, and geographic isolation often compounds this perception in Canada. Many parents seek assistance online for both information and social support.Objective:This study examines an online portal, titled “Ability Online,” which was designed to provide support and information to a diverse group of parents using chat facilities, bulletin boards, and e-mail. Specifically, we sought to identify how the technologies offered in this system related to the support and information seeking needs for parents. Secondary aims of determining possible reasons for attrition over time were explored as well.Design:Mixed methodology sequential exploratory design using the qualitative methodology of descriptive interpretation.Setting:Telephone interviews.Patients:Twenty parents of pediatric patients with chronic kidney disease from four...