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?

There is a growing body of literature that recognizes the importance of shared decision-making (SDM) in the care for children with chronic conditions and/or disabilities. Although participation in SDM can be more or less active, the tuning between parents and professionals about the way they want to participate in SDM is often an implicit process, limiting parents' optimal involvement. Role definitions may support both partners in the process of SDM.

Psychological screening of significant others during spinal cord injury rehabilitation.

Design: Retrospective cohort study.

Objective: Determine the course of burden and psychological distress of significant others (SOs) during initial spinal cord injury (SCI) rehabilitation and to predict the caregiver's burden at discharge with characteristics of SOs and persons with SCI (PSCIs) at the start of rehabilitation.

Setting: Rehabilitation center Sint Maartenskliniek, Nijmegen, The Netherlands.

The development and validation of the S-scan-parental self-management support (S-scan - PS): A self-reflection tool for child healthcare professionals.

Background: Professionals providing self-management support to parents regarding the care for their child with a chronic condition nowadays is an important aspect of child healthcare. This requires professionals to orient themselves towards partnership and collaboration with parents. The aims of the current study were the development and validation of the S-Scan-Parental self-management Support (S-scan - PS) as a tool for healthcare professionals to reflect on their attitude and practices regarding the support for parental self-management.

The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study.

Study Design: International Classification of Functioning, Disability and Health (ICF) linking study.

Objective: Analyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS).

Health professionals' perspective on the applicability of AO Spine PROST (patient reported outcome Spine trauma) in people with a motor-complete traumatic or non-traumatic spinal cord injury.

Purpose: The AO Spine PROST (Patient Reported Outcome Spine Trauma) was developed for people with spine trauma and minor or no neurological impairment. The purpose is to investigate health professionals' perspective on the applicability of the AO Spine PROST for people with motor-complete traumatic or non-traumatic spinal cord injury (SCI), using a discussion meeting and international survey study.

Methods: A discussion meeting with SCI rehabilitation physicians in the Netherlands was performed, followed by a worldwide online survey among the AO Spine International community, involved in the care of people with SCI.

Applicability of the AO Spine Patient Reported Outcome Spine Trauma (PROST) in people with motor-complete spinal cord injury: a cognitive interview study.

Study Design: This is a cognitive interview study.

Objectives: To examine the applicability of the Patient Reported Outcome Spine Trauma (AO Spine PROST) in people with motor-complete traumatic or non-traumatic spinal cord injury (SCI).

Setting: Two rehabilitation centers in The Netherlands.

A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS).

Study Design: Mixed methods inquiry using cognitive interviews and thematic content analysis.

Objectives: Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items.

A Road Map for Remote Digital Health Technology for Motor Neuron Disease.

Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease has not yet been realized. Digital health technology may increase the accessibility to and personalization of care, whereas remote biosensors could optimize the collection of vital clinical parameters, irrespective of patients' ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings.

Role of parents in fatigue of children with a chronic disease: a cross-sectional study.

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.

Professionals' motivation to support parental self-management regarding children with physical disability in Dutch rehabilitation services: 'Please mind your gap'.

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 motivation of rehabilitation professionals to support self-management of parents regarding their child with physical disability, professionals' beliefs about parental self-management, and the perceptions underlying their motivation.

Associations between time since onset of injury and participation in Dutch people with long-term spinal cord injury.

Study Design: Multicentre cross-sectional study.

Objectives: To describe relationships between time since injury (TSI) and participation in individuals with tetraplegia and paraplegia.

Setting: Community sample from the Netherlands METHODS: Individuals (N = 265) aged 28-65 years, living with spinal cord injury (SCI) for ≥10 years, age at injury between 18-35 years and using a wheelchair for everyday mobility in three TSI strata: 10-19, 20-29, and ≥30 years post-injury.

Assessment of the factorial validity and reliability of the ALSFRS-R: a revision of its measurement model.

The amyotrophic lateral sclerosis functional rating scale-revised (ALSFRS-R) is a widely used primary outcome measure in amyotrophic lateral sclerosis (ALS) clinical practice and clinical trials. ALSFRS-R items cannot, however, validly be summed to obtain a total score, but constitute domain scores reflecting a profile of disease severity. Currently, there are different measurement models for estimating domain scores.

Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community: a qualitative diary study.

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 the preliminary thematic framework previously identified in a scoping review.

The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community.

Purpose: 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.

Method: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis.

Results: Analysis revealed three super-ordinate themes: "Parents' experiences and concerns about systems, laws and regulations", "Parents' experiences and thoughts about physical and/or social environment" and "Parents' experiences and feelings of finding and/or enabling an activity".

Navigation strategy training using virtual reality in six chronic stroke patients: A novel and explorative approach to the rehabilitation of navigation impairment.

Recent studies have shown that navigation impairment is a common complaint after brain injury. Effective training programmes aiming to improve navigation ability in neurological patients are, however, scarce. The few reported programmes are merely focused on recalling specific routes rather than encouraging brain-damaged patients to use an alternative navigation strategy, applicable to any route.

Bedside prediction of the progress of pressure ulcer healing in patients with spinal cord injury using the 'Decu-stick'.

Study Design: This is a prospective cohort study.

Objectives: The objective of this study was to predict the progress of healing of pressure ulcers (PUs) in spinal cord injury (SCI) patients after the first 4 weeks.

Setting: The study was conducted in a specialized SCI rehabilitation unit in The Netherlands.

Validity and feasibility of a learning style instrument for brain injury rehabilitation.

Purpose: Identifying learning styles of acquired brain injury (ABI) patients may aid the learning process by tailoring to the patient's learning needs and preferences. Currently, there is no learning style instrument for ABI patients. We therefore determined the validity and feasibility of the Adapted Learning Style Inventory (A-LSI) for patients with ABI.