Profile photo Marjolijn Ketelaar

Marjolijn Ketelaar

Associate Professor

Strategic program(s):

Biography

Marjolijn Ketelaar is Associate Professor at the Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation (www.kcrutrecht.nl), and Scientist at CanChild, Center for Childhood Disability Research, McMaster University, Hamilton, Canada (www.canchild.ca)

Leader of research program on Family Empowerment and Program leader Pediatric Rehabilitation Research.

Her research interests include family-centered services, and the role of the family in the development of children with disabilities, with a focus on Brain Based Developmental Disabilities (e.g., Cerebral Palsy) and neuromuscular diseases (e.g., SMA).

She strongly believes in collaboration with patients, families, clinicians, and service providers in all stages of the research cycle, to optimise relevance and usefulness of research, and to improve clinical practice.

This is one of the main purposes of CP-Net, a network of parents and persons with CP, clinicians and researchers, she has founded founded in 2014, together with M. Klem (director patient organisation BOSK), Prof. J.G. Becher, Professor in Pediatric Rehabilitation Medicine.
www.CP-Net.nl

She is the national coordinator of the Dutch research program PERRIN, studying the development of activities and participation of children and youths and adults with cerebral palsy
www.perrin.nl

 

Publications:
www.researchgate.net

Twitter:
@Marjolijnketela

 

Research line

Neurodevelopmental disorders

Most recent key publications

Pozniak K, Buchanan F, Cross A, Crowson J, Galuppi B, Grahovac D, Gorter JW, Hlyva O, Ketelaar M, Kraus de Camargo O, Krpan Mesic M, Martens R, McCauley D, Nguyen L, Palisano RJ, Phoenix M, Putterman C, Rosenbaum P, Sprung J, Strohm S, Teplicky R, Thomson D, Wright M. Building a culture of engagement at a research centre for childhood disability. Res Involv Engagem. 2021 Nov 6;7(1):78. doi: 10.1186/s40900-021-00319-5. PMID: 34742354.

Ketelaar M, Smits DW, Van Meeteren K, Klem M, Alsem MW. Involvement of young people and families in all stages of research: What, why and how? In: Imms C and Green D (Eds), Participation: Optimising Outcomes in Childhood-Onset Neurodisability. London: MacKeith Press, 2020, p 105-117. ISBN: 9781911612162

 Alsem M, Wong Chung R, Rentinck I, Reinders-Messelink H, Willemen A, Ketelaar M. Gezin en Samenleving. In: Hadders-Algra M, Pangalila RF, Becher JG, van der Burg JJW, Hielkema T, de Moor J (red), Kinderrevalidatie, 6de druk. Assen: Koninklijke van Gorcum, 2021, p 307-322. ISBN: 978-90-232-5776-9

Nguyen L, Jack S, Ketelaar M, di Rezze B, Soper AK, Gorter JW. Understanding the experiences of youth with autism spectrum disorder in peer mentorship programs during the transition to adulthood: a meta-ethnography. Child: Care, Health and Development 2020; 46(6):667-681. doi: 10.1111/cch.12804.

Resch C, Van Kruijsbergen M, Ketelaar M, Hurks P, Adair B, Imms C, De Kloet A, Piskur B, Van Heugten C. Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties. Developmental Medicine & Child Neurology 2020; 62: 434-444. doi: 10.1111/dmcn.14465

Smits DW, Van Meeteren K, Klem M, Alsem MW, Ketelaar M. Designing a Tool to Support Patient and Public Involvement in Research Projects: The Involvement Matrix. Research Involvement and Engagement 2020; 6: 30. doi: 10.1186/s40900-020-00188-4.

Smits DW, Gorter JW, Riddell CA, Voorman JM, Rosenbaum PL, Palisano RJ, Walter SD, Hanna SE, van Wely L, Ketelaar M. Mobility and self-care trajectories for individuals with cerebral palsy (aged 1-21 years): a joint longitudinal analysis of cohort data from the Netherlands and Canada. Lancet Child Adolesc Health. 2019 Jun 6. pii: S2352-4642(19)30122-1. doi: 10.1016/S2352-4642(19)30122-1. [Epub ahead of print]

Gorp M van, Van Wely L, Dallmeijer AJ, de Groot V, Ketelaar M, Roebroeck ME; Perrin-Decade study group. Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study. Dev Med Child Neurol. 2019 Feb;61(2):194-203. doi: 10.1111/dmcn.14004.

Wintels SC, Smits DW, van Wesel F, Verheijden J, Ketelaar M; PERRIN PiP Study Group. How do adolescents with cerebral palsy participate? Learning from their personal experiences. Health Expect. . 2018 Dec; 21(6):1024-1034. doi: 10.1111/hex.12796.

 

Research groups

Rehabilitation science

Research aim

We focus on autonomy and daily functioning of people with disabilities and their families. Together with experts by experience, we aim to contribute to knowledge that leads to better rehabilitation through research, innovation and implementation.

Go to group

Recent publications

Understanding Burnout among Parents of Children with Complex Care Needs Nathalie J.S. Patty, Karen M. van Meeteren, Agnes M. Willemen, Marijke A.E. Mol, Minke Verdonk, Marjolijn Ketelaar, Carlo Schuengel
Journal of Child and Family Studies, 2024, vol. 33, p.1378-1392
Being a sibling of a youth with a neurodisability Linda Nguyen, Susan M Jack, Hanae Davis, Samantha Bellefeuille, Dana Arafeh, Briano Di Rezze, Marjolijn Ketelaar, Jan Willem Gorter
Child: Care, Health and Development, 2024, vol. 50
Wider institutional research cultures and their influence on patient and public involvement and engagement in health research - An institutional ethnography Anne Wettergren Karlsson, Anne Kragh-Sørensen, Kirsten Børgesen, Karsten Erik Behrens, Torben Andersen, Karen Margrethe Maglekær, Mette Juel Rothmann, Marjolijn Ketelaar, Esben Nedenskov Petersen, Astrid Janssens
Social science & medicine (1982), 2024, vol. 347
Conceptualizing burnout from the perspective of parents of children with complex care needs Nathalie J.S. Patty, Karen M. van Meeteren, Minke Verdonk, Marjolijn Ketelaar, Carlo Schuengel, Agnes M. Willemen
PEC Innovation, 2024, vol. 5
Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities Amber Postma, Marjolijn Ketelaar, Justus van Nispen Tot Sevenaer, Zahra Downs, Diane van Rappard, Marian Jongmans, Janneke Zinkstok
Child: Care, Health and Development, 2024, vol. 50
How can we reach long-lasting inclusive participation for all? Anna Ullenhag, Christine Imms, Dana Anaby, Jessica M Kramer, Sonya Girdler, Jan Willem Gorter, Marjolijn Ketelaar, Reidun Birgitta Jahnsen, Catherine Elliott, Mats Granlund
Child: Care, Health and Development, 2024, vol. 50

Fellowships & Awards

2017: "Hoofdprijs" BCRM 2017

External positions

Board Scientific Committee CP-Register - Scientific advice establishment and content of registry, including use of data - CP-Net