Abstract
BackgroundThe care for children with a chronic kidney disease (CKD) is complex. Parents of these children may experience high levels of stress in managing their child’s disease, potentially leading to negative effects on their child’s health outcomes. Although the experienced problems are well known, adequate (online) support for these parents is lacking.ObjectiveThe objective of the study is to describe the systematic development of an online support program for parents of children with CKD, and how this program will be evaluated.MethodsIntervention Mapping (IM) was used for the development of the program. After conducting a needs assessment, defining program objectives, searching for theories, and selecting practical applications, the online program e-Powered Parents was developed. e-Powered Parents consist of three parts: (1) an informative part with information about CKD and treatments, (2) an interactive part where parents can communicate with other parents and health care professionals by chat, private messages, and a forum, and (3) a training platform consisting of four modules: Managing stress, Setting limits, Communication, and Coping with emotions. In a feasibility study, the potential effectiveness and effect size of e-Powered Parents will be evaluated using an explorative randomized controlled trial with parents of 120 families. The outcomes will be the child’s quality of life, parental stress and fatigue, self-efficacy in the communication with health care professionals, and family management. A process evaluation will provide insight in parents’ experiences, including their experienced level of support.ResultsStudy results are expected to be published in the summer of 2016.ConclusionsAlthough the development of e-Powered Parents using IM was time-consuming, IM has been a useful protocol. IM provided us with a systematic framework for structuring the development process. The participatory planning group was valuable as well; knowledge, experiences, and visions were shared, ensuring us that parents and health care professionals support the program.Trial RegistrationDutch Trial Registration: NTR4808; www.trialregister.nl (Archived by WebCite at http://www.webcitation.org/6cfAYHcYb)
Highlights
Parents Managing Their Child’s Chronic DiseasePediatric chronic diseases affect the life of many children, as well as their families [1]
After conducting a needs assessment, defining program objectives, searching for theories, and selecting practical applications, the online program e-Powered Parents was developed. e-Powered Parents consist of three parts: (1) an informative part with information about chronic kidney disease (CKD) and treatments, (2) an interactive part where parents can communicate with other parents and health care professionals by chat, private messages, and a forum, and (3) a training platform consisting of four modules: Managing stress, Setting limits, Communication, and Coping with emotions
Intervention Mapping (IM) provided us with a systematic framework for structuring the development process
Summary
Parents Managing Their Child’s Chronic DiseasePediatric chronic diseases affect the life of many children, as well as their families [1]. The increased strain on the parenting role, hospitalizations, child function impairments, and difficulties in accepting their child’s disease cause emotional problems and high levels of stress among these parents [2,4,5]. This leads to negative effects on their child’s health outcomes [1,3,5] and their quality of life [6,7]. The care for children with a chronic kidney disease (CKD) is complex Parents of these children may experience high levels of stress in managing their child’s disease, potentially leading to negative effects on their child’s health outcomes. The experienced problems are well known, adequate (online) support for these parents is lacking
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