Het ontwikkelen en testen van een online ondersteuningsprogramma voor ouders van kinderen met een chronische nierziekte

BACKGROUND - In children with chronic kidney disease, parents have a key role in managing their child’s disease and consequences for both child and family. However, while parents struggle with many health and life problems, well-developed self-management support for parents is lacking.

AIM – To develop, deliver and preliminary test e-POWERED PARENTS, an e-support package for parents managing their child’s chronic kidney disease and its consequences for child and family.

APPROACH – We will use Intervention mapping, a systematic approach to intervention development that combines theory, research evidence and experience, while facilitating a collaboration of the target group, researchers and health professionals. A development group of 4 parents, a paediatric nephrologist, a specialised nurse practitioner, a psychologist, a dietician, a social worker and two project staff members will work collaboratively throughout the development process. Intervention Mapping (IM) will include:

1) Needs assessment; including a scoping review of the literature and focus groups with parents to provide an overview of parents’ needs and relevant determinants;

2) Definition of proximal programme objectives by the development group;

3) Selection of theory and evidence based methods and practical strategies;

4) Production and piloting of programme components;

5) Anticipating adoption and implementation and;

6) Preliminary evaluation of the e-POWERED PARENTS programme versus usual care in an early randomised clinical trial (in parents of 2x60=120 children) to estimate effects on parents’ self management, parental stress, and childrens’ quality of life.

The aim of the pilot trial is to:

1. evaluate the potential effectiveness and effect size of the e-support program for parents of children with a chronic kidney disease;

2. to identify outcome measures most likely to capture potential patient benefit;

3. to evaluate continued participation or dropping out of the e-support program.

Baseline data collection will start in November 2014, follow-up will be at six months. Data will be collected using web based questionnaires (see outcomes), which take parents a maximum 30 minutes to fill in.

Control group = Care as usual = all parents in this study receive the usual care, consisting of regular care and treatment for their child at the Radboud university medical center for paediatric nephrology in Nijmegen



Intervention: Additionally, the parents in the intervention group will have the opportunity to use the e-support program for six months. Parents can use this program voluntarily and can decide by themselves how often and long they ‘visit’ the program.

The program is developed using the Intervention Mapping (IM) method, the current standard for systematic development of health promotion interventions (Bartholomew et al, 2011).

The program consist of a communiy where parents can find information about kidney diseases and treatments. Moreover parents have the opportunity to chat with each other and ask their questions on the forum. Futhermore there are four online trainings: 1) Stress management, 2) Saying ‘no’, 3) Coping with your child’s disease, 4) Communication. Each e-module consists of information, peer testimonials, tips and tricks of peers and healthcare professionals and exercises. Parents can use these modules on a privacy protected e-health platform: they will receive a login code and password.