Development and evaluation of the ‘www-roadmap’ by and for families of a child with a disability
The WWW-Roadmap is an innovation-project linked to a study in which a digital tool is developed, the WWW-roadmap. The WWW-roadmap aims to help families of children with disabilities to explore, formulate solutions.
The WWW-roadmap is being developed in close collaboration between parents, caregivers, (information) technologists and researchers, and is evaluated by experiences of parents and implementation in pediatric rehabilitation. The project builds on earlier research on with parents of children with disabilities for their information and support needs and works in close collaboration with the BOSK Association of persons with congenital physical handicaps and Zuyd Hogeschool.
How did we get there?
In previous research, we found that parents feel that they are not always informed enough (see this article), and that searching information is not easy (see the poster from the EACD 2016). We studied possible information needs of parents of children with disabilities in the literature (article) and in interviews with parents (article). These results were presented on the EACD 2013 with a poster
The WWW in WWW-roadmap stands for What, Where, and Who:
– What are your information needs?, What do you want to know? (Digital checklist)
– Where can you find information about it? (Links to websites, or other sources (online) communities)
– Who can you help in the search for answers and solutions? (For example, a care provider or agency)
Parents can decide when and with whom to use the tool, for example, together with partner or other relatives to prepare for a consultation with a healthcare provider, or just when questions arise.
The tool can help them to explore, formulate and prioritize their information and support needs, and assist them in finding solutions.
Information- and support-needs that are unmet can then be discussed with a healthcare provider with the help of a question-prompt list. This allows parents to prepare for the consultation with the caregiver, and the conversation will be more focused on the relevant issues that allows parents and caregivers to play a more equal and empowered role in the consultation.
What do we want to achieve? (The objectives)
The WWW-roadmap aims to:
- Support families with a child with disabilities to explore, formulate and prioritize their information and support needs, and assist them in finding solutions;
- Facilitate the conversation between families and caregivers and to focus more on the family relevant topics, because the family is better prepared and informed in the conversation and the caregiver knows current information- and support needs
Parents of a child with a disability have a central role in the life of their child. They are the most important links in optimizing the participation of their child and are supported by different healthcare professionals. Healthcare policies are changing. Patients (and in this case their parents) are expected to play a more and more active and responsible role in the health care process of their child. That means that in the process the role of both parents and health care professionals change. In order to fulfill a role in equal partnership with health care providers, it is important that parents are well informed. However, it appears that parents often feel that they are inadequately informed to participate in decisions on an equal level. On one hand, it is difficult for caregivers to assess what parents want to know and what needs they have, and on the other hand, parents find it difficult to formulate their information and support needs. Parents report many (different) information and support needs and use different strategies to meet those needs. Caregivers can play an important role as facilitator in searching and finding relevant information. Moreover the developments in information technology present many opportunities to assist families in taking control of their needs. Additionally, experience-based knowledge plays an important role in this process.
How? (The approach)
The development of the WWW-roadmap is an iterative process in which parents are involved from the beginning of the project in all stages of technical development and the development of content. The technical development is done by (information) technologists and the content is generated by parents, caregivers and researchers. During the development of the WWW-roadmap is given feedback by parents at different times, so that the tool is constantly improved. The use of (the prototype) of the WWW-Roadmap will be evaluated in a sequential-cohort study of twol cohorts of parents. Experiences of parents and caregivers and effects are studied in the care process, both quantitatively using standardized questionnaires and qualitatively through interviews.
For more information you can send an email to firstname.lastname@example.org
Links to articles:
- Alsem, M. W., Siebes, R. C., Gorter, J. W., Jongmans, M. J., Nijhuis, B. G. J., & Ketelaar, M. (2014). Assessment of family needs in children with physical disabilities: development of a family needs inventory. Child: Care, Health and Development. Jul;40(4):498-506.
- Siebes, R. C., Ketelaar, M., Gorter, J. W., Alsem, M., & Jongmans, M. J. (2012). Needs of families with children who have a physical disability: A literature review. Critical Reviews in Physical and Rehabilitation Medicine, 24, 85-108.
- Alsem, M. W., Verhoef, M., Gorter, J. W., Langezaal, L. C. M., Visser-Meily, J. M. A., and Ketelaar, M. (2016) Parents’ perceptions of the services provided to children with cerebral palsy in the transition from preschool rehabilitation to school-based services. Child: Care, Health and Development, doi: 10.1111/cch.12341.
- Alsem MW, van Meeteren KM, Verhoef M, Schmitz MJWM, Jongmans MJ, Meily-Visser JMA, Ketelaar M. Co-creation of a digital tool for the empowerment of parents of children with physical disabilities. Research Involvement and Engagement 2017 3:26. https://doi.org/10.1186/s40900-017-0079-6
- M.W. Alsem MD, F. Ausems MD, M. Verhoef, MD, PhD, M.J. Jongmans, PhD, J.M.A. Meily-Visser, MD, PhD, M. Ketelaar, PhD. How Do Parents of Children with Physical Disabilities Search for Information? a Qualitative Study (Poster for EACD 2016)
- M.W Alsem, MD, K.M. van Meeteren, BSc, M.J.W.M. Schmitz, MSc, M. Klem, M. Verhoef MD PhD, B. Piškur Phd, M. Ketelaar PhD. Empowering parents: Developing a digital tool to guide parents of children with disabilities to the right information. (Poster for EACD 2016)
- MW Alsem MD, RC Siebes PhD, JW Gorter MD PhD, MJ Jongmans PhD, BGJ Nijhuis PhD, M Ketelaar PhD, M Verhoef MD PhD. Assessment of family needs in children with physical disabilities: Development of a family needs inventory. (Poster for EACD 2013)
The WWW-roadmap project group consists of:
M. Ketelaar, PhD, project leader (ResearchGate)
M.W. Alsem, MD, researcher, pediatric rehabiltiation physician (ResearchGate)
K.M. van Meeteren, BSc, project collaborator
M. Verhoef MD, PhD, pediatric rehabilitation physician
M. Harmer-Bosgoed, implementation coordinator
Drs. M. Klem, director of BOSK
B. Piskur, PhD, Senior researcher, Zuyd Hogeschool Heerlen
R.C. Siebes PhD, research coordinator (ResearchGate)
Prof. J.M.A. Meily-Visser, MD, PhD, Professior in rehabilitation medicine (ResearchGate)
Prof. M.J. Jongmans, PhD, Professor in care for people with disabilities (ResearchGate)
Drs. M. Schmitz, Senior information technology, Zuyd Hogeschool Heerlen