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.
MULTIFILE
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.
DOCUMENT
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.
DOCUMENT
ObjectiveHospital-to-home (H2H) transitions challenge families of children with medical complexity (CMC) and healthcare professionals (HCP). This study aimed to gain deeper insights into the H2H transition process and to work towards eHealth interventions for its improvement, by applying an iterative methodology involving both CMC families and HCP as end-users.MethodsFor 20-weeks, the Dutch Transitional Care Unit consortium collaborated with the Amsterdam University of Applied Sciences, HCP, and CMC families. The agile SCREAM approach was used, merging Design Thinking methods into five iterative sprints to stimulate creativity, ideation, and design. Continuous communication allowed rapid adaptation to new information and the refinement of solutions for subsequent sprints.ResultsThis iterative process revealed three domains of care – care coordination, social wellbeing, and emotional support – that were important to all stakeholders. These domains informed the development of our final prototype, ‘Our Care Team’, an application tailored to meet the H2H transition needs for CMC families and HCP.ConclusionComplex processes like the H2H transition for CMC families require adaptive interventions that empower all stakeholders in their respective roles, to promote transitional care that is anticipatory, rather than reactive.InnovationA collaborative methodology is needed, that optimizes existing resources and knowledge, fosters innovation through collaboration while using creative digital design principles. This way, we might be able to design eHealth solutions with end-users, not just for them.
MULTIFILE
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.
DOCUMENT
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.
DOCUMENT
This thesis aims to develop and validate a comprehensive and adaptable activity monitoring system that quantifies physical behaviours in children with and without developmental disabilities, including those utilizing assistive devices. This system seeks to overcome the current limitations in the accuracy and feasibility of existing monitoring devices by providing robust measurements in real-world settings.
MULTIFILE
• Introduction research concern • Presentation: Images and metaphors expressed by Dutch parents (caring for children with PIMD) • Dialogue and participation
DOCUMENT
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.
DOCUMENT
The concepts of metacognitive refection, refection, and metacognition are distinct but have undergone shifts in meaning as they migrated into medical education. Conceptual clarity is essential to the construction of the knowledge base of medical education and its educational interventions. We conducted a theoretical integrative review across diverse bodies of literature with the goal of understanding what metacognitive refection is. We searched PubMed, Embase, CINAHL, PsychInfo, and Web of Science databases, including all peer-reviewed research articles and theoretical papers as well as book chapters that addressed the topic, with no limitations for date, language, or location. A total of 733 articles were identified and 87 were chosen after careful review and application of exclusion criteria. The work of conceptually and empirically delineating metacognitive reflection has begun. Contributions have been made to root metacognitive refection in the concept of metacognition and moving beyond it to engage in cycles of refection. Other work has underscored its affective component, transformational nature, and contextual factors. Despite this merging of threads to develop a richer conceptualization, a theory of how metacognitive refection works is elusive. Debates address whether metacognition drives refection or vice versa. It has also been suggested that learners evolve along on a continuum from thinking, to task-related refection, to self-refection, and finally to metacognitive refection. Based on prior theory and research, as well as the findings of this review, we propose the following conceptualization: Metacognitive refection involves heightened internal observation, awareness, monitoring, and regulation of our own knowledge, experiences, and emotions by questioning and examining cognition and emotional processes to continually refine and enhance our perspectives and decisions while thoughtfully accounting for context. We argue that metacognitive refection brings a shift in perspective and can support valuable reconceptualization for lifelong learning.
LINK
