Marjolijn Ketelaar

Marjolijn Ketelaar
University Medical Center Utrecht | UMC Utrecht · Department of Neurosciences and Pharmacology

Doctor of Philosophy

About

257
Publications
91,704
Reads
How we measure 'reads'
A 'read' is counted each time someone views a publication summary (such as the title, abstract, and list of authors), clicks on a figure, or views or downloads the full-text. Learn more
7,309
Citations
Citations since 2016
69 Research Items
4002 Citations
20162017201820192020202120220100200300400500600
20162017201820192020202120220100200300400500600
20162017201820192020202120220100200300400500600
20162017201820192020202120220100200300400500600
Introduction
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) Leading the research program on Family Empowerment in Pediatric Rehabilitation (www.kcrurecht.nl). My 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 and neuromuscular diseases. I strongly believe in collaboration with patients, families, clinicians, and service providers in all stages of the research cycle. Co-Founder of CP-Net (www.CP-Net.nl)
Additional affiliations
January 2009 - December 2010
McMaster University
January 2005 - December 2012
University Medical Center Utrecht
January 1998 - December 2010
Utrecht University

Publications

Publications (257)
Article
Full-text available
Plain English summary In more and more projects, researchers and young people are working together in partnership; but there is little guidance about how to organize this partnership. In this paper, we share what partnerships in six projects from Canada, Netherlands, and United Kingdom looked like, so that others can be inspired. To do so, a resear...
Article
Objective To explore and compare the contents and scores of the Assessment of Life Habits (Life-H) with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in adolescents with cerebral palsy. Design Youth versions of both instruments were used for (1) Content comparison and (2) analyses of relations between both i...
Article
Full-text available
Background: Partners of patients with stroke are at high risk for burden, anxiety and depressive symptoms. Previous studies have reported contradictory results and did not investigate these three courses simultaneously. In this study we comprehensively studied the courses and predictors of burden, anxiety and depressive symptoms in partners of pati...
Preprint
Objective: The concept of parental burnout has been proposed to be helpful for describing and understanding the impact of parenting children with complex care needs (CCN). The objective of this scoping review was to describe the aims, methods, and results of research on burnout among parents of children with CCN, along with a stakeholder consultati...
Article
Full-text available
Aim(s): parents of children with spinal muscular atrophy (SMA) often struggle with the all-consuming nature of the demands of caring for a child with substantial physical needs. Our aim was to explore experiences, challenges and needs of parents of a child with SMA in a COVID-19 pandemic situation. Method: 19 Parents of 21 children (15 months -...
Article
Full-text available
Background: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What ar...
Article
Full-text available
Background: As children and adolescents with a chronic health condition (CHC) age and transition to adulthood, many will increasingly assume responsibilities for the management of their healthcare. For individuals with CHCs, family members including siblings often provide significant and varied supports. There are a range of resources in Canada to...
Article
Full-text available
Background Children and youth with neurodisabilities may experience different challenges during their transition to adulthood, such as pursuing postsecondary education, finding employment, and navigating a new adult health care system. Families, including siblings, have an important role in the process for when youth with neurodisabilities are tran...
Article
Background Communication between people with aphasia and their healthcare professionals (HCPs) can be greatly improved when HCPs are trained in using supportive conversation techniques and tools. Communication partner training (CPT) is an umbrella term that covers a range of interventions that train the conversation partners of people with aphasia....
Article
Full-text available
Problem Children undergoing medical procedures can experience pain and distress. While numerous interventions exist to mitigate pain and distress, the ability to individualize the intervention to suit the needs and preferences of individual children is emerging as an important aspect of providing family-centered care and shared decision making. To...
Article
Full-text available
Introduction Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance o...
Article
Full-text available
Purpose To provide an overview of environmental factors associated with participation and participation-related constructs in children and youth with cerebral palsy (CP). Methods A rapid review following the principles from scoping methodology was performed with a literature search in September 2019. The CINAHL, Embase, Ovid MEDLINE and PsychINFO...
Article
Full-text available
Background: Professionals in child healthcare increasingly endorse the support of self-management in paediatric rehabilitation services for children with physical disability. Less understood though are their views regarding the role of the children's parents, as well as their own role in supporting parents. This study aimed to investigate the moti...
Article
Full-text available
Aim To describe: (1) the frequency and types of sleep problems, (2) parent‐rated satisfaction with their child’s and their own sleep, and (3) child factors related to the occurrence of sleep problems in children with cerebral palsy (CP) and their parents. The secondary objective was to compare the sleep outcomes of children with CP with those from...
Article
Full-text available
Objective As parents majorly impact their child’s well-being, and as fatigue is a highly prevalent threat to the well-being of children with a chronic disease, we aimed to explore the association between parental factors and fatigue in children with a chronic disease. Design Cross-sectional study Setting Two Dutch children’s hospitals. Populatio...
Article
Full-text available
In adults with neuromuscular conditions illness perceptions show a strong relation with QoL. For young patients, illness perceptions are shaped through interaction with their parents. A shared perception between child and parent may benefit the child’s QoL. This study investigated agreement in illness perceptions of children with Spinal Muscular At...
Article
Full-text available
Introduction Brain abnormalities in cerebral palsy (CP) are known to relate to motor outcome; however, their association with cognitive functioning is less clear. Aim of the study 1) To investigate the prognostic value of brain abnormalities for cognitive functioning; 2) To explore the added value of prognostic variables across ICF domains: motor...
Article
Full-text available
Aim To gain insight into parents’ perspectives about their decision‐making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. Method This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to...
Article
Full-text available
Abstract Background. The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods. We share our lessons learned from a large participatory p...
Article
Background Youth with an autism spectrum disorder (ASD) often require additional supports during the period of transition to from high school to post‐secondary education or career paths. Peer mentorship programs create opportunities to support youth with ASD in identifying their personal, academic, and career goals after graduating from high school...
Article
Full-text available
Background: Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant...
Article
Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP. Materials and methods: Individual, semi-structured interviews were conducted...
Article
Full-text available
Objective To investigate if the combination of self-efficacy levels of persons with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others, measured shortly after the start of inpatient rehabilitation, predict their personal and family adjustment six months after inpatient discharge. Design Prospective longitudinal st...
Article
Objective To identify intra-personal and inter-personal sociodemographic, injury-related and psychological variables measured at admission of inpatient rehabilitation that predict psychological distress among dyads of persons with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others (i.e., persons close to the indivi...
Article
Full-text available
Background: Many significant others of persons with serious conditions like spinal cord injury (SCI) and acquired brain injury (ABI) report high levels of psychological distress. In line with the stress-coping model, the aim of the present study was to investigate the relationship between personal resource resilience and psychological distress, and...
Article
Full-text available
Purpose: Youth with disabilities face challenges regarding achieving autonomy. The 'Skills for Growing Up' tool was adapted for use in Dutch pediatric rehabilitation (SGU-D) to support development of autonomy. This study presents the experiences with the SGU-D tool. Methods: The SGU-D was implemented in 18 settings, of which 4 participated in th...
Article
Purpose: Youth with physical disabilities have lower psychosocial health and attention compared to their typically developing peers. Recent research has shown positive associations between sports participation and these outcomes. The purpose of the current study was to explore whether a school-based sports program affects psychosocial health and a...
Article
Full-text available
Objective: To investigate participation restrictions and satisfaction with participation in partners of patients with stroke. Design: Cross-sectional study. Setting: Five rehabilitation centers and three hospitals in the Netherlands. Participants: A consecutive sample of 54 partners of patients with stroke. The patients were participating in a mult...
Article
Full-text available
Aim: To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. Method: Five d...
Article
Aim: To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method: Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 3...
Article
Full-text available
Aim: To review definitions and elements of interventions in studies, which used the word “functional” to describe their intervention for children with cerebral palsy (CP), and to determine whether definitions and elements are similar to criteria of functional therapy described in the Dutch Guidelines. Methods: Systematic review of intervention stud...
Article
Full-text available
Aim: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). Method: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at...
Article
Full-text available
Objective To explore participation in social roles of adolescents (aged 12-18y) with cerebral palsy (CP), in terms of satisfaction compared with accomplishment. Design Cohort study as part of a prospective longitudinal research program. Setting Clinic. Participants Participants were adolescents (N=45; 58% male, mean age 15y 6mo) with CP at level...
Article
Background: A good understanding of developmental trajectories is crucial for making prognoses, planning interventions, and monitoring progress in children and adolescents with cerebral palsy. Our study aimed to describe developmental trajectories of mobility and self-care capability in a large sample of children and adolescents with cerebral pals...
Article
Purpose: (1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies. Materials and methods: Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) wer...
Article
Full-text available
Background: To explore experiences of parents of children with disabilities using the WWW-roadmap, a tool to support them in exploring needs, finding information and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents w...
Article
Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions...
Article
Full-text available
Background Family group decision-making (FGDM) is a structured decision-making process, aiming to shift the balance of power from professional towards the person in need and their family. It differentiates from other family-centred meetings by the presence of three key elements: (1) plan with actions/goals, (2) family driven, (3) three phases of me...
Article
Purpose: The PEDI-CAT measures daily functioning of children and youth, aged 1 to 21 years, with a variety of physical, cognitive and/or behavioral disabilities. In order to use an instrument in another culture or language, translation and cross-cultural validation are important, particularly for end-users. This study describes the process of tran...
Article
Full-text available
Background Insight into parental empowerment is important to understanding the impact of healthcare policy and to supporting and strengthening parents in the care of their child. The Family Empowerment Scale (FES) is a valid 24‐item instrument that measures parental empowerment. It was originally developed for parents of children with emotional dis...
Article
Full-text available
Aim To determine the long‐term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age. Method One hundred and fifty‐one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I–...
Article
Introduction/Background Adults with cerebral palsy (CP) experience difficulties in their participation. Knowledge on the course of difficulties in participation of individuals with CP emerging into adulthood could provide insight in this stage of participation development. We aim to describe the course of difficulty and independence in participatio...
Conference Paper
Full-text available
Introduction/Background Adults with cerebral palsy (CP) experience difficulties in their participation. Knowledge on the course of difficulties in participation of individuals with CP emerging into adulthood could provide insight in this stage of participation development. We aim to describe the course of difficulty and independence in participatio...
Article
Full-text available
Het samenwerken met patiënten bij besluitvorming rondom hun zorg is een belangrijke voorwaarde voor kwalitatief goede en veilige gezondheidszorg. Niet alleen binnen de (kinder)revalidatiegeneeskunde, maar ook daarbuiten, is men op zoek naar de beste manier om samen te werken met patiënten en hun naasten. Een belangrijk aspect van het samenwer-ken,...
Article
Full-text available
Background Participation in society can be difficult for adolescents with cerebral palsy (CP). Information is often based on quantitative studies, and little is known about their personal participation experiences. Objective The aim of this study was to examine the participation experiences of adolescents (aged 12‐17 years) with CP. Methods A qua...
Article
Full-text available
PURPOSE: To review the existing literature on the effects of postural management on hip migration in children with cerebral palsy. METHODS: A systematic literature search was performed using 5 databases. Quality of articles was assessed and study designs were appraised according to the American Academy of Cerebral Palsy and Developmental Medicine...
Article
Full-text available
Introduction Many patients and family members experience a large gap between the protected environment during inpatient medical rehabilitation and life in the community after discharge. They feel insufficiently prepared to cope with the consequences of their disability in daily life. This study protocol describes the design measuring the effectiven...
Article
Full-text available
Background: Support programs for partners of patients with acquired brain injury are necessary since these partners experience several unfavorable consequences of caregiving, such as a high burden, emotional distress, and poor quality of life. Evidence-based support strategies that can be included in these support programs are psychoeducation, ski...
Article
Study design: Cross-sectional study. Objectives: To describe type and regularity of support given by partners for individuals with paraplegia versus tetraplegia 5 years after discharge from first inpatient rehabilitation; to describe perceived caregiver burden, mental health and life satisfaction among partners; and to analyse determinants of pe...
Article
Study design: Cross-sectional study. Objectives: To describe and compare mental health and life satisfaction between individuals with spinal cord injury (SCI) and their partners 5 years after discharge from first inpatient rehabilitation; and to examine if injury severity moderates the association between individuals' with SCI and their partners...
Article
Full-text available
Plain English summary Parents of children with physical disabilities do a lot to support their child in daily life. In doing this they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on different topics. It is sometimes hard for them to get the right information at the right moment, and to...
Article
Objective: To validate the Caregiver Mastery Scale for partners of patients with acquired brain injury. Design: The score distributions, internal consistency and convergent validity of the Caregiver Mastery Scale were determined. Subjects: A total of 92 partners (53% male, age 62 years) of patients with acquired brain injury (91% stroke) discharge...
Article
Background Family‐centred services (FCS) is widely regarded as the best practice approach in early interventions. Creating a therapeutic environment, which also stimulates collaboration between parents and service professionals, is a way to conform to the principles of FCS. The present paper describes the project entitled @home, involving the imple...
Article
Background: A family-centred approach to services of children with disabilities is widely accepted as the foundational approach to service delivery in paediatric health care. The 56 items of the Measure of Processes of Care questionnaire (MPOC-56) all reflect elements of family-centred service. In this study, we investigated which elements of fami...
Article
Background: Evidence suggests that parents of children with disabilities feel that not all their information needs are being met, but it remains unclear how parents try to fill these information gaps. Aims: The aim of this study is to describe how parents of children with physical disabilities search for and evaluate information. Methods: Qual...
Article
Full-text available
Background Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine...
Article
The implementation of computer games in physical therapy is motivated by characteristics such as attractiveness, motivation, and engagement, but these do not guarantee the intended therapeutic effect of the interventions. Yet, these characteristics are important variables in physical therapy interventions because they involve reward-related dopamin...
Article
The importance of the family environment for the development of children with neurodisabilities is undisputed. The objective of this study is to describe how family environment has been measured in research on families of children with neurodisabilities, in order to support researchers and clinicians to select appropriate methods for use. A three-s...
Article
Aims: To (1) describe the child- and context-focused behaviors of physical and occupational therapists, and (2) compare the behaviors of therapists in a standard therapy session with those of therapists trained to deliver child- and context-focused services. Method: Videos of 49 therapy sessions provided by 36 therapists were analyzed using the...
Article
Full-text available
Aims: We aimed to determine factors associated with the longitudinal development of social participation in a Dutch population of individuals with Cerebral Palsy (CP) aged 1-24 years. Methods and procedures: For this multicentre prospective longitudinal study, 424 individuals with CP aged 1-24 years were recruited from various rehabilitation cen...
Article
Objective: To explore the experiences and needs of parents of young children (aged 2-4 years) with cerebral palsy (CP) regarding their child's physical and occupational therapy process in a rehabilitation setting. Methods: A qualitative design was used involving semi-structured interviews with 21 parents of young children with CP. Interviews wer...
Article
Aim: To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. Background: Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (...
Article
Aim: To examine the efficacy of child-focused, context-focused, and regular care approaches, delivered in a rehabilitation setting by physical or occupational therapists to preschool children with cerebral palsy (CP), in optimizing the child's self-care and mobility capabilities. Method: A multicentre randomized controlled trial clustered at the...
Article
The aim of this study was to provide an in-depth exploration and understanding of parents' thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child's participation at home, at school and in the community. A naturalistic inquiry with thirteen Dutch parents using interpretative ph...
Article
Objective To 1) determine the long-term trajectory of Health-Related Quality of Life (HR-QoL) for the dimensions of physical complaints, motor-, psychological- and social functioning for groups of individuals with CP aged 1-24 years, 2) assess the variability in HR-QoL within individuals with CP over time, 3) assess the variability in HR-QoL betwee...
Article
The aim of this study was to examine which child and family characteristics at the child's age of 2 years are determinants of development of self-care and mobility activities over a period of 2 years in young children with cerebral palsy (CP). Longitudinal data of 92 children, representing all levels of the Gross Motor Function Classification Syste...
Article
Full-text available
Participation in leisure is a human right and is central to the health of children and youth. The World Health Organization's International Classification of Functioning, Disability and Health for Children and Youth supported a change in thinking about what outcomes are most relevant in the context of children's health and places participation as o...