Marjolijn Ketelaar
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View article: Continuity and quality of community care for children with cancer: A qualitative study on the experiences and needs of parents and adolescents
Continuity and quality of community care for children with cancer: A qualitative study on the experiences and needs of parents and adolescents Open
View article: Patient reported outcomes in pediatric physical therapy: a scoping review and evidence map
Patient reported outcomes in pediatric physical therapy: a scoping review and evidence map Open
View article: Impact of peer-support programs for individuals with autism: A systematic review
Impact of peer-support programs for individuals with autism: A systematic review Open
The neurodiversity approach recognizes autism as a natural variation of human experience, emphasizing unique strengths while acknowledging social and behavioral challenges that may affect quality of life. Peer support, based on shared expe…
View article: Child and Parent Perspectives on Daily Functioning after Perinatal Brain Injury
Child and Parent Perspectives on Daily Functioning after Perinatal Brain Injury Open
Children and young adults with a history of perinatal brain injury face a variety of challenges in their everyday lives, emphasizing the importance of taking the full spectrum of sequelae into account in care, counseling, and future resear…
View article: Risk and Protective Factors for Burnout Among Parents of Children With Complex Care Needs: Parents' Perspectives
Risk and Protective Factors for Burnout Among Parents of Children With Complex Care Needs: Parents' Perspectives Open
Background Parental burnout has been proposed as resulting from a persistent imbalance between stress‐enhancing factors (demands/risk factors) and stress‐alleviating factors (resources/protective factors). Parents of children with complex …
View article: Psychometric properties and reference values of the Patient-Reported Outcomes Measurement Information System (PROMIS®) pediatric item banks Mobility, Upper Extremity, and Pain Interference in the Dutch population
Psychometric properties and reference values of the Patient-Reported Outcomes Measurement Information System (PROMIS®) pediatric item banks Mobility, Upper Extremity, and Pain Interference in the Dutch population Open
The PROMIS® v2.0 pediatric Mobility, Upper Extremity, and Pain Interference item banks displayed sufficient validity in the Dutch general population and sufficient reliability in the clinically relevant direction.
View article: The co-development and pilot evaluation of the Siblings Training, Empowerment, and Advocacy Kit (Siblings TEAKit) to support youth and young adult siblings of individuals with a disability: A participatory action research qualitative study protocol
The co-development and pilot evaluation of the Siblings Training, Empowerment, and Advocacy Kit (Siblings TEAKit) to support youth and young adult siblings of individuals with a disability: A participatory action research qualitative study protocol Open
This study protocol advances the methods and rigour in participatory research with young people, including siblings. This study is the first step towards the development of a toolkit to support siblings of persons with disabilities to fost…
View article: Experiences and Therapy Needs of Parents With an Infant at High Risk for Development of Unilateral Spastic Cerebral Palsy: A Qualitative Interview Study
Experiences and Therapy Needs of Parents With an Infant at High Risk for Development of Unilateral Spastic Cerebral Palsy: A Qualitative Interview Study Open
Aim: To understand experiences and therapy needs of parents with an infant with unilateral perinatal brain injury and at high risk for unilateral spastic cerebral palsy in the first year. Patients and Methods: Sixteen parents (from 8 child…
View article: Integrated care networks in multidisciplinary rehabilitation therapy services for childhood oncology close to home: lessons learned from an international environmental scan
Integrated care networks in multidisciplinary rehabilitation therapy services for childhood oncology close to home: lessons learned from an international environmental scan Open
Background Integrated care networks (ICNs) close to home have the potential to improve continuity and quality of care for children with cancer and their families during and after treatment. Our goal is to develop such a network for multidi…
View article: Use of the Pediatric Evaluation of Disability Inventory ‐ Computer Adaptive Test in Denmark, the Netherlands, and Norway
Use of the Pediatric Evaluation of Disability Inventory ‐ Computer Adaptive Test in Denmark, the Netherlands, and Norway Open
Aim To investigate whether the items of the Danish, Dutch, and Norwegian versions of the Pediatric Evaluation of Disability Inventory ‐ Computer Adaptive Test (PEDI‐CAT) align with the location‐order used in the original algorithm and to a…
View article: Stakeholder’s perspective on brain–computer interfaces for children and young adults with cerebral palsy
Stakeholder’s perspective on brain–computer interfaces for children and young adults with cerebral palsy Open
Communication Brain-Computer Interfaces (cBCIs) are a promising tool for people with motor and speech impairment, in particular for children and young adults with communication impairments, for example due to cerebral palsy (CP). Here we a…
View article: Engaging children in shared decision making: Making sense of PROMIS outcomes
Engaging children in shared decision making: Making sense of PROMIS outcomes Open
View article: Psychometric properties of pediatric and proxy PROMIS item banks in Dutch physiotherapy and exercise therapy
Psychometric properties of pediatric and proxy PROMIS item banks in Dutch physiotherapy and exercise therapy Open
View article: Development of a core PRO(M) set in pediatric physiotherapy
Development of a core PRO(M) set in pediatric physiotherapy Open
View article: Psychometric Properties and Reference Values of the Patient-Reported Outcomes Measurement Information System (Promis®) Pediatric Item Banks Mobility, Upper Extremity and Pain Interference in the Dutch Population
Psychometric Properties and Reference Values of the Patient-Reported Outcomes Measurement Information System (Promis®) Pediatric Item Banks Mobility, Upper Extremity and Pain Interference in the Dutch Population Open
View article: Exploring the “shared” in shared decision-making in the care for children with chronic diseases or disabilities: what are the roles of parents and professionals?
Exploring the “shared” in shared decision-making in the care for children with chronic diseases or disabilities: what are the roles of parents and professionals? Open
View article: Collaborative working with Parents of Children with DLD in Speech and Language Therapy: Identifying Dutch Speech and Language Therapists’ barriers to enhancing practice
Collaborative working with Parents of Children with DLD in Speech and Language Therapy: Identifying Dutch Speech and Language Therapists’ barriers to enhancing practice Open
SLTs hold specific beliefs that potentially hinder them from working collaboratively with parents. Appropriate interventions should be developed by combining implementation science and behaviour change science.
View article: Bridging the gap: reflections on co-creation in knowledge translation
Bridging the gap: reflections on co-creation in knowledge translation Open
View article: How to meet coping strategies and preferences of children during invasive medical procedures: perspectives of healthcare professionals
How to meet coping strategies and preferences of children during invasive medical procedures: perspectives of healthcare professionals Open
Children with negative procedural experiences have an increased risk of fear and distress, with psychological consequences for subsequent procedures and future healthcare behaviors. Gaining control and feeling trust are important aspects f…
View article: Risk and protective factors for burnout among parents of children with complex care needs: Parents’ perspectives
Risk and protective factors for burnout among parents of children with complex care needs: Parents’ perspectives Open
Background: Parental burnout has been proposed as resulting from a persistent imbalance between stress-enhancing factors (demands/ risk factors) and stress-alleviating factors (resources/ protective factors). Parents of children with compl…
View article: Risk and protective factors for burnout among parents of children with complex care needs: Parents’ perspectives
Risk and protective factors for burnout among parents of children with complex care needs: Parents’ perspectives Open
Background: Parental burnout has been proposed as resulting from a persistent imbalance between stress-enhancing factors (demands/ risk factors) and stress-alleviating factors (resources/ protective factors). Parents of children with compl…
View article: Answering the call: co-designing a global trials network for cerebral palsy
Answering the call: co-designing a global trials network for cerebral palsy Open
View article: Conceptualizing burnout from the perspective of parents of children with complex care needs
Conceptualizing burnout from the perspective of parents of children with complex care needs Open
View article: “Filling in the gap”: A qualitative case study about identity construction of siblings of youth with a neurodisability
“Filling in the gap”: A qualitative case study about identity construction of siblings of youth with a neurodisability Open
Introduction In families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims …
View article: Stakeholder’s perspective on Brain-Computer Interfaces for children and adolescents with quadriplegic cerebral palsy
Stakeholder’s perspective on Brain-Computer Interfaces for children and adolescents with quadriplegic cerebral palsy Open
Communication Brain-Computer Interfaces (cBCIs) use neural signals to control a computer and are of interest as a communication tool for people with motor and speech impairment. Whereas the majority of cBCI research focuses on adults, the …
View article: Exploring individual parent‐to‐parent support interventions for parents caring for children with brain‐based developmental disabilities: A scoping review
Exploring individual parent‐to‐parent support interventions for parents caring for children with brain‐based developmental disabilities: A scoping review Open
Background Brain‐based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a chi…
View article: Understanding Burnout among Parents of Children with Complex Care Needs: A Scoping Review Followed by a Stakeholder Consultation
Understanding Burnout among Parents of Children with Complex Care Needs: A Scoping Review Followed by a Stakeholder Consultation Open
View article: Wider institutional research cultures and their influence on patient and public involvement and engagement in health research – An institutional ethnography
Wider institutional research cultures and their influence on patient and public involvement and engagement in health research – An institutional ethnography Open
Focus on patient and public involvement and engagement (PPIE) is increasing in health policy and research governance. PPIE is considered by some to be a democratic right, and by others to be a way to improve health care and research outcom…
View article: How can we reach long‐lasting inclusive participation for all? A vision for the future
How can we reach long‐lasting inclusive participation for all? A vision for the future Open
In 2022, an international conference was held focusing on ‘participation’. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brie…
View article: Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood
Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood Open
Background During the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, incl…