Online Support Program for Parents of Children With a Chronic Kidney Disease Using Intervention Mapping: A Development and Evaluation Protocol

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)

A Mobile App (WhiteTeeth) to Promote Good Oral Health Behavior Among Dutch Adolescents with Fixed Orthodontic Appliances: Intervention Mapping Approach

“…Despite the value of this robust development process, IM is very time-consuming. Our experience in this regard was similar to that of other researchers who used the IM protocol [77-81]. Our development process required more time than expected because we had to carry out additional research to gain insights into oral health behavior and its determinants during orthodontic treatment (Step 1), as there was little information available on these topics.…”

Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial (Preprint)

“…This could explain the very small effects found in this study: knowledge only does not lead to behavior change [29]. Other determinants (such as attitude, self efficacy etc) could have been influenced, however, strategies to changes these determinants were mainly integrated into the training platform and not into the community [12]. On the other hand, parents and healthcare professionals underlined the importance of the evidence based information on e-Powered Parents, providing parents with reliable and up-to-date information about their child's disease and treatment options.…”

“…A two-armed randomized controlled trial (RCT) was conducted between January 2015 and June 2015 as described in the study protocol [12] at the pediatric nephrology unit in the Radboud university medical center. Randomization, stratified on CKD stadia at family level and performed blinded by a statistician, was used to allocate equal numbers of parents in group 1 and group 2.…”

“…In collaboration with parents and healthcare professionals, intervention mapping was used: a protocol for the systematic development of theory-and evidence based health promotion interventions [10]. After conducting a needs assessment with parents (consisting of five focus group interviews) [11], defining program objectives, searching for theories and selecting practical applications, e-Powered Parents [Mijn Kinderniernet in Dutch] was developed [12]. E-Powered Parents consisted of three different components: 1) an informative part comprising information and videos about different kidney diseases, treatment possibilities, diets and (financial) regulations; 2) an interactive part consisting of a forum, chat room and an option to send private messages to share their experiences with other parents and healthcare professionals, and 3) an online training platform consisting of four different training modules (stress management, setting limits, communication and coping) (see Figure 1).…”

Informações on-line como suporte às famílias de crianças e adolescentes com doença crônica

“…Thus, professionals involved in the development of online support tools can expand their knowledge, and ensure that important topics related to chronic disease are addressed and that interventions proposed on the internet are effective, which benefits the professionals, families, and the children and adolescents with chronic diseases (32) . The inclusion of the internet in the professional practice goes beyond the recognition that patients and family members use online content, it also englobes the evaluation of this content to improve the quality of care.…”