This dissertation describes a research project about the communication between communication vulnerable people and health care professionals in long-term care settings. Communication vulnerable people experience functional communication difficulties in particular situations, due to medical conditions. They experience difficulties expressing themselves or understanding professionals, and/or professionals experience difficulties understanding these clients. Dialogue conversations between clients and professionals in healthcare, which for example concern health-related goals, activity and participation choices, diagnostics, treatment options, and treatment evaluation, are, however, crucial for successful client-centred care and shared decision making. Dialogue conversations facilitate essential exchanges between clients and healthcare professionals, and both clients and professionals should play a significant role in the conversation. It is unknown how communication vulnerable people and their healthcare professionals experience dialogue conversations and what can be done to support successful communication in these conversations. The aim of this research is to explore how communication vulnerable clients and professionals experience their communication in dialogue conversations in long-term care and how they can best be supported in improving their communication in these conversations.
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Background: During COVID-19 measures face-to-face contact is limited and professional carers have to find other ways to support people with intellectual disabilities. COVID-19 measures can increase stress in people with intellectual disabilities, although some people may adapt to or grow from these uncertain situations. Resilience is the process of effectively negotiating, adapting to, or managing significant sources of stress and trauma. The current study aims to provide professional carers with new insights into how they can support people with intellectual disabilities. Method: An online survey was shared through the social media and organizational newsletters of MEE ZHN (a non-governmental organization for people with disabilities). The resilience framework by Ungar (2019) was adapted to fit to people with intellectual disabilities during COVID-19 measures. Statistical analyses were performed in SPSS statistics version 26. Results: Results show that professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients. Implications: Online methods of communication are possibly insufficient for professionals to cover all needs of people with intellectual disabilities. During this pandemic professionals should be aware of stress but also of resilience in people with intellectual disabilities.
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Abstract Background People with epilepsy and mild intellectual disability have a limited adaptive capacity resulting in difficulties in communication and social skills. Virtual Reality (VR) has the potential to help this group of people to learn how to manage difficult situations. SEIN (Expertise Center for Epilepsy) provides training to the residents to improve their social and communication skills. The purpose of the exploratory study was to establish whether VR could be a suitable digital means to provide a more efficient blended training. Methods Online interviews were conducted with healthcare professionals from SEIN: two coordinators, three psychologists and two coaches. The participants were asked about their ideas for improving the social skills of the residents and their view on using VR to do so. Interviews were recorded, transcribed and analyzed using thematic analysis approach. In addition, observations were conducted during a training session to get a realistic sense of its process and contents. Observations were noted in a logbook. Findings The participants are positive to use VR in the training but point out that it is not suitable for all the residents. VR glasses were ruled out because it put the resident alone in a virtual setting. VR with a tablet is preferred to allow the residents and the healthcare professional to simultaneously view 3D simulated situations and allowing opportunities to talk about it. The development of VR contents and simulations using tablet will need to take into account relevant VR guidelines dedicated to people with epilepsy. Appropriate training for the healthcare professionals also needs to be provided. Conclusions The use of Virtual Reality in training programs to improve communication and social skills of adults with intellectual disabilities and epilepsy is promising, We advocate to utilize user-centered design and co-creation approaches with all concerned parties for further development of tablet-based VR solutions
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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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Background: Talking Mats is a framework developed to support communication with communication vulnerable people. Objective: The objective was twofold: to provide an overview of the objectives, target groups and settings for which Talking Mats has been used (Part 1), and an overview of empirical scientific knowledge on the use of Talking Mats (Part 2). Methods: In this scoping review scientific and grey literature was searched in PubMed, Cinahl, Psycinfo, Google, and Google Scholar. Articles that described characteristics of Talking Mats or its use were included. For Part 2, additional selection criteria were applied to focus on empirical scientific knowledge. Results: The search yielded 73 publications in Part 1, 12 of which were included in Part 2. Talking Mats was used for functional objectives (e.g. goal setting) and to improve communication and involvement. Part 2 showed that Talking Mats had positive influences on technical communication, effectiveness of conversations, and involvement and decision making in conversations. However, the level of research evidence is limited. Conclusions: Talking Mats can be used to support conversations between professionals and communication vulnerable people. More research is needed to study the views of people who are communication vulnerable and to study the effects of Talking Mats.
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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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Objective: To gain insight into how communication vulnerable people and health-care professionals experience the communication in dialogue conversations, and how they adjust their conversation using augmentative and alternative communication (AAC) or other communication strategies. Methods: Communication vulnerable clients and health-care professionals in a long-term care institution were observed during a dialogue conversation (n = 11) and subsequently interviewed (n = 22) about their experiences with the conversation. The clients had various communication difficulties due to different underlying aetiologies, such as acquired brain injury or learning disorder. Results from the observations and interviews were analysed using conventional content analysis. Results: Seven key themes emerged regarding the experiences of clients and professionals: clients blame themselves for miscommunications; the relevance of both parties preparing the conversation; a quiet and familiar environment benefitting communication; giving clients enough time; the importance and complexity of nonverbal communication; the need to tailor communication to the client; prejudices and inexperience regarding AAC. The observations showed that some professionals had difficulties using appropriate communication strategies and all professionals relied mostly on verbal or nonverbal communication strategies. Conclusion: Professionals were aware of the importance of preparation, sufficient time, a suitable environment and considering nonverbal communication in dialogue conversations. However, they struggled with adequate use of communication strategies, such as verbal communication and AAC. There is a lack of knowledge about AAC, and professionals and clients need to be informed about the potential of AAC and how this can help them achieve equal participation in dialogue conversations in addition to other communication strategies.
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Background: Persons with an intellectual disability are at increased risk of experiencing adversities. The current study aims at providing an overview of the research on how resilience in adults with intellectual disabilities, in the face of adversity, is supported by sources in their social network. Method: A literature review was conducted in the databases Psycinfo and Web of Science. To evaluate the quality of the included studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes: “positive emotions,” “network acceptance,” “sense of coherence” and “network support,” were identified as sources of resilience in the social network of the adults with intellectual disabilities. Conclusion: The current review showed that research addressing sources of resilience among persons with intellectual disabilities is scarce. In this first overview, four sources of resilience in the social network of people with intellectual disabilities were identified that interact and possibly strengthen each other.
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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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The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person-centered methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID-care. We examined the experiences of ID-professionals in using DCM. We performed a mixed-methods study, using quantitative data from care staff (N = 136) and qualitative data (focus-groups, individual interviews) from care staff, group home managers and DCM-in-intellectual disabilities mappers (N = 53). ageing, dementia, Dementia Care Mapping, intellectual disability, mixed-methods, personcentred care
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