‘It's got its ups and downs’: what people with intellectual disabilities living in supported living and residential care like and dislike about their home

Background: Given the current sociopolitical climate, people with intellectual disabilities are spending more time at home. Much housing‐related research focuses on informant‐completed measures and quantifiable outcomes. By contrast, this article explores the perspectives of adults with intellectual disabilities concerning what they liked or disliked about their homes. Method: Data is drawn from 53 semi‐structured interviews with people with intellectual disabilities in supported living or residential care in England. Results: Three themes were generated: space and place; people make or break a home; and day‐to‐day autonomy. These highlight the importance of belonging and the significance of other people in the creation of ‘home’. Conclusion: If people are to flourish, attention must be paid to aspects of the home that provide comfort, enjoyment, and a sense of belonging. These findings can benefit professionals, family members and people with intellectual disabilities, when considering current or future living arrangements

Whose uncertainty? Learning disability research in a time of COVID-19

UK government responses to COVID-19 have intensified experiences of uncertainty for people with learning disabilities. The pandemic has eroded the support people receive, previously weakened by austerity measures. In research, COVID-19 related uncertainty has led to some reworking of methods and intensive contingency planning. This was to fulfil funding requirements and was underpinned by research teams’ commitment to continuing research with people with learning disabilities not despite, but because of the pandemic. This is in a context where people with learning disabilities have been systemically excluded from research participation. Here, we reflect on these processes in relation to a project exploring how to improve the support for older people with learning disabilities. We consider the distribution of uncertainty in relation to conducting research during this time and ask whose uncertainty is attended to in these mid- and post-pandemic methodological debates and why. We suggest pandemic ‘disruption’ has created space for critical reflection allowing methodological creativity and consideration of in between strategies of trust, intuition, and emotion. We caution against the re-constraining of this space, instead arguing for continuing flexibility and creativity, where uncertainties are shared rather than used as a tool of control or dismissal of claims to support

Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities

Introduction: The UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers’ experiences can promote the development of tailored public supports for these families following a public health crisis. Methods: Online survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families’ and youths’ experiences during the same period. Results: Five hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths’ regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators. Conclusion: Prioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape

Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities

IntroductionThe UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers’ experiences can promote the development of tailored public supports for these families following a public health crisis.MethodsOnline survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families’ and youths’ experiences during the same period.ResultsFive hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths’ regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators.ConclusionPrioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape

Making knowledge work:Factors, strategies and leadership to improve sharing and application of knowledge in the care and support for people with intellectual disabilities

Background:In the context of caring for people with intellectual disabilities, knowledge (scientific, professional, and experiential) is of profound importance for care professionals to be able to provide sufficiently good care. Through their knowledge policies, care organisations for people with intellectual disabilities seek to stimulate their care professionals to share and apply the knowledge they have acquired. However, it often takes a long time for the most up-to-date scientific knowledge is acquired by care professionals and properly applied within the care and support for people with intellectual disabilities. In addition to this, professional knowledge and experiential knowledge are also insufficiently shared and utilised. If care professionals do not have the requisite knowledge, then this can negatively impact upon their ability to provide professional support, and, in turn, lead to poorer quality of care and quality of life for service users. This thesis focuses on how care professionals in care organisations for people with intellectual disabilities can be stimulated to effectively share and apply knowledge within their practice. Research question and method:Five sub-studies investigated what factors and strategies influence both the sharing and application of knowledge within the context of care and support for people with intellectual disabilities. The first sub-study identified organisational factors that had been identified in extant scientific literature in this field. This revealed the important contingent role of management. Based on this, the second and third sub-studies focused on the key role of CEOs. Through interviews with CEOs, we found out which strategies they deploy in their knowledge policies, what motivated this, and which factors influence the subsequent execution of these strategies. These studies showed, amongst other things, that establishing a good fit between their strategies and incoming professionals is vitally important. Building on this, the fourth sub-study investigated how, according to incoming support staff, psychologists and ID physicians, the use of new knowledge can be encouraged. The fourth sub-study coincided with the COVID-19 pandemic in early 2020. This ‘living experiment’ provided an opportunity in the fifth sub-study to understand the factors that influenced knowledge sharing and application during the pandemic. Conclusion:Knowledge sharing and application appear to be influenced by a combination of personal factors and environmental factors. Improving these processes requires the effective interplay between these factors, in which care professionals have a key role to play. First and foremost, knowledge sharing and application require professionalism, leadership and the complementary role to be played by CEOs and managers comprises facilitating, encouraging and providing appropriate learning strategies, resources, such as time, space and budget, as well as a stimulating learning environment that utilises knowledge from research, practice and from people with intellectual disabilities themselves and their relatives. When the combined efforts of care professionals, CEOs, and managers generate working knowledge, then this will in turn enhance both the quality of care and quality of life of service users._Aanleiding:In de zorg voor mensen met een verstandelijke beperking is kennis (wetenschappelijke-, professionele- en ervaringskennis) van groot belang om als zorgprofessional goede zorg te kunnen bieden. Met hun kennisbeleid stimuleren zorgorganisaties voor mensen met een verstandelijke beperking dat zorgprofessionals kennis delen en toepassen. Het kost echter veel tijd voordat onderzoekskennis de professionals bereikt en goed ingezet kan worden bij de zorg en ondersteuning van mensen met verstandelijke beperkingen. Daarnaast worden praktijkkennis en ervaringskennis onvoldoende gedeeld en gebruikt. Als zorgprofessionals niet beschikken over de juiste kennis kan dit leiden tot handelingsverlegenheid. En tot minder goede kwaliteit van zorg en kwaliteit van leven.Dit proefschrift richt zich op de vraag hoe zorgprofessionals in zorgorganisaties voor mensen met een verstandelijke beperking gestimuleerd kunnen worden tot effectieve kennisdeling en -toepassing in hun praktijk.Onderzoeksvraag en -methode:In vijf deelstudies is onderzocht welke factoren en strategieën het delen en toepassen van kennis in de zorg en ondersteuning van mensen met verstandelijke beperkingenbeïnvloeden. In de eerste deelstudie is in kaart gebracht welke organisatiefactoren er op dit gebied uit reeds bestaande wetenschappelijke literatuur bekend zijn. Hieruit kwam de belangrijke voorwaardelijke rol van het management naar voren. Daarom richtten de tweede en derde deelstudie zich op de sleutelrol van de bestuurders. Via interviews met bestuurders is achterhaald welke strategieën ze inzetten in hun kennisbeleid, wat de aanleidingen hiervoor zijn en welke factoren de uitvoer van deze strategieën beïnvloeden.Uit deze studies bleek onder andere dat een goede aansluiting van hun strategieën bij de startende professionals cruciaal is. Daarom is in de vierde deelstudie onderzocht hoe volgens startende begeleiders, gedragsdeskundigen en artsen VG het gebruik van nieuwe kennis aangemoedigd kan worden. Ten tijde van de vierde deelstudie vond begin 2020 de uitbraak van de coronapandemie plaats. Dit ‘levend experiment’ bood gelegenheid om inde vijfde deelstudie inzicht te krijgen in de factoren die kennisdeling en -toepassing beïnvloedden tijdens deze pandemie.Conclusie:Kennisdeling en -toepassing blijken te worden beïnvloed door een combinatie van persoonlijke factoren en omgevingsfactoren. Voor het verbeteren van deze processen iseen goed samenspel nodig tussen deze factoren, waarbij de zorgprofessionals een sleutelrol hebben. Kennisdeling en -toepassing vraagt van hen vakmanschap, leiderschap en motivatie. Daarnaast zijn leiderschap van bestuurders en management nodig. Deaanvullende rol van bestuurders en managers is faciliterend en stimulerend en bestaat uit het bieden van passende leerstrategieën, hulpbronnen zoals tijd, ruimte en budget en een stimulerende leeromgeving waarin gebruik wordt gemaakt van kennis uit onderzoek, praktijk en van mensen met een verstandelijke beperking zelf en hun naasten. Wanneer de gezamenlijke inzet van zorgprofessionals, bestuurders en managers leidt tot werkende kennis zal dit op zijn beurt de kwaliteit van zorg en de kwaliteit van leven van zorgvragers bevorderen