The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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Introduction: There is a lack of effective interventions available for Pediatric Physical Therapists (PPTs) to promote a physically active lifestyle in children with physical disabilities. Participatory design methods (co-design) may be helpful in generating insights and developing intervention prototypes for facilitating a physically active lifestyle in children with physical disabilities (6–12 years). Materials and methods: A multidisciplinary development team of designers, developers, and researchers engaged in a co-design process–together with parents, PPTs, and other relevant stakeholders (such as the Dutch Association of PPTs and care sports connectors). In this design process, the team developed prototypes for interventions during three co-creation sessions, four one-week design sprint, living-lab testing and two triangulation sessions. All available co-design data was structured and analyzed by three researchers independently resulting in themes for facilitating physical activity. Results: The data rendered two specific outcomes, (1) knowledge cards containing the insights collected during the co-design process, and (2) eleven intervention prototypes. Based on the generated insights, the following factors seem important when facilitating a physically active lifestyle: a) stimulating self-efficacy; b) stimulating autonomy; c) focusing on possibilities; d) focusing on the needs of the individual child; e) collaborating with stakeholders; f) connecting with a child's environment; and g) meaningful goal setting. Conclusion: This study shows how a co-design process can be successfully applied to generate insights and develop interventions in pediatric rehabilitation. The designed prototypes facilitate the incorporation of behavioral change techniques into pediatric rehabilitation and offer new opportunities to facilitate a physically active lifestyle in children with physical disabilities by PPTs. While promising, further studies should examine the feasibility and effectivity of these prototypes.
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BACKGROUND: Rapid technological development has been opening new possibilities for children with disabilities. In particular, robots can enable and create new opportunities in therapy, rehabilitation, education, or leisure. OBJECTIVE: The aim of this article is to share experiences, challenges and learned lessons by the authors, all of them with experience conducting research in the field of robotics for children with disabilities, and to propose future directions for research and development. METHODS: The article is the result of several consensus meetings to establish future research priorities in this field. CONCLUSIONS: This article outlines a research agenda for the future of robotics in childcare and supports the establishment of R4C – Robots for Children, a network of experts aimed at sharing ideas, promoting innovative research, and developing good practices on the use of robots for children with disabilities. RESULTS: Robots have a huge potential to support children with disabilities: they can play the role of a play buddy, of a mediator when interacting with other children or adults, they can promote social interaction, and transfer children from the role of a spectator of the surrounding world to the role of an active participant. To fulfill their potential, robots have to be “smart”, stable and reliable, easy to use and program, and give the just-right amount of support adapted to the needs of the child. Interdisciplinary collaboration combined with user centered design is necessary to make robotic applications successful. Furthermore, real-life contexts to test and implement robotic interventions are essential to refine them according to real needs.
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This study aimed (1) to examine the contribution of robot ZORA in achieving therapeutic and educational goals in rehabilitation and special education for children with severe physical disabilities, and (2) to discover the roles professionals attribute to robot ZORA when it is used in robot-based play interventions in rehabilitation and special education for children with severe physical disabilities. A multi-centre mixed methods study was conducted among children with severe physical disabilities in two centres for rehabilitation and one school for special education. The participating children played with robot ZORA six times during a period of 6 weeks, in individual or group sessions. Quantitative data were gathered about the contribution of ZORA in reaching individual goals for all of the participating children, using the Individually Prioritized Problem Assessment (IPPA). Playfulness was measured with a visual analogue scale (0–10) and children could indicate whether they liked the sessions using a scale consisting of smileys. Video-stimulated recall interviews were used to collect qualitative data about the different roles of ZORA. In total, 33 children and 12 professionals participated in the study. The results of the IPPA showed a significant contribution of ZORA to the achievement of (children’s) individual goals. The data gathered using the IPPA during the ZORA-based interventions showed that the largest contributions of robot ZORA lie in the domains of movement skills and communication skills. Playfulness of the sessions was 7.5 on average and 93% of the sessions were evaluated as ‘enjoyable’ by the children. Overall, ZORA could positively contribute to the achievement of individual goals for children with severe physical disabilities. According to the participating professionals the most promising roles in which robot ZORA can be used are motivator, rewarder or instructor.
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In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
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Background Little is known about the nature and reactions to sexual abuse of children with intellectual disability (ID). The aim was to fill this gap. Method Official reports of sexual abuse of children with ID in state care were examined (N = 128) and compared with children without ID (N = 48). Results Clear signs of penetration or genital touching by male (adolescent) peers or (step/foster) fathers were found in most ID reports. Victims often received residential care and disclosed themselves. Type of perpetrator seemed to affect the nature and reaction to the abuse. Cases of children with and without ID seemed to differ in location and reports to police. Conclusions Screening of (foster)homes seems crucial. Residential facilities should find a balance between independence of children and protection. Care providers should be trained in addressing sexual issues and sexual education, accounting for different types of perpetrators (peers/adults). Uniform reporting guidelines are needed.
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Background: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). Aims: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. Methods and procedures: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. Outcomes and results: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0???? 8) and in children with BIF 2.88 (range 0???? 7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. Conclusions and implications: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
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Total and chronic food refusal (i.e., the refusal of all types of food during a prolonged period) in young children with developmental disabilities can be treated effectively using a combination of environmental interventions. However, no guidelines for the selection of food items to offer the child in these interventions are available. The aim of the present study was to assess the preferences for specific food items of young Dutch nondisabled children (N = 254) in order to enable trainers to select food items that maximize success of feeding interventions. Results indicate that 54 out of 107 food items were found to be preferred. The mean appreciation scores of boys and girls did not differ significantly for these preferred food items, except for raisins and brown bread. Also, there were no differences between the distinguished age-groups, except for peach. Recommendations for the selection of food items within feeding intervention for total and chronic food refusal in young children with developmental disabilities are given.
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