Online Support Program for Parents of Children With a Chronic Kidney Disease Using Intervention Mapping: A Development and Evaluation Protocol
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Published on: April 12, 2021
Wytske W Geense1, Betsie Gi van Gaal, Jacqueline L Knoll
1IQ Healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, Netherlands. wytske.geense@radboudumc.nl.
Insights
Parents of children with chronic kidney disease (CKD) face significant stress. An online support program, e-Powered Parents, was systematically developed to address this need and will be evaluated for effectiveness.
Area of Science:
- Pediatric Nephrology
- Digital Health Interventions
- Parental Support Programs
Background:
- Care for children with chronic kidney disease (CKD) is complex and stressful for parents.
- Parents experience high stress managing their child's disease, impacting health outcomes.
- Existing online support for these parents is inadequate.
Purpose of the Study:
- To systematically develop an online support program for parents of children with CKD.
- To evaluate the effectiveness and feasibility of the developed online support program.
- To address the lack of adequate online support for parents managing pediatric CKD.
Main Methods:
- Intervention Mapping (IM) framework used for systematic program development.
- Developed "e-Powered Parents" with informative, interactive, and training components.
- Feasibility study employing a randomized controlled trial with 120 families to assess outcomes.
Main Results:
- Results of the feasibility study and randomized controlled trial are pending publication (expected Summer 2016).
- The development process utilized a participatory planning group, ensuring stakeholder input.
- The Intervention Mapping protocol provided a structured framework for program development.
Conclusions:
- Intervention Mapping proved a useful, systematic protocol for developing the e-Powered Parents program.
- The participatory approach ensured the program is supported by parents and healthcare professionals.
- The e-Powered Parents program aims to improve quality of life and reduce parental stress in pediatric CKD care.
Background:
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. Although the experienced problems are well known, adequate (online) support for these parents is lacking.
Objective:
The 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.
Methods:
Intervention 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.
Results:
Study results are expected to be published in the summer of 2016.
Conclusions:
Although 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 Registration:
Dutch Trial Registration: NTR4808; www.trialregister.nl (Archived by WebCite at http://www.webcitation.org/6cfAYHcYb).
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