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Bakgrund: Det finns ett växande intresse för att tillhandahålla palliativ vård för personer med intellektuell funktionsnedsättning, och därmed ett erkännande av deras särskilda behov och svårigheter att få tillgång till rättvis vård i livets slutskede. Detta ställer krav på att vårdpersonal ska kunna identifiera palliativa behov, samt inte minst bedöma när livets slut närmar sig. Denna kunskap gynnar både individen och hela samhället. Då tillgången till palliativ vård för personer med intellektuell funktionsnedsättning är sämre än för övrig befolkning sökte denna litteraturstudie identifierade orsaker till denna ojämlikhet. Syfte: Att beskriva vårdpersonals upplevelser av faktorer som möjliggör och försvårar palliativ vård för personer med intellektuell funktionsnedsättning. Metod: Studien är en litteraturöversikt. En tematisk analys med induktiv ansats genomfördes där inkluderade artiklar analyserats utifrån Braun och Clarkes tematiska analysmetod. Totalt valdes 14 artiklar ut från databaserna CINAHL och PubMed. Resultat: I resultatet framkom fem huvudteman – hur etiska värderingar påverkar vårdpersonals upplevelser av palliativ vård, kunskapsnivåns betydelse för möjligheten att ge god palliativ vård, de praktiska förutsättningar som arbetsgivare tillhandahåller, vårdpersonals upplevelse av hur närstående påverkar den palliativa vården samt hur vårdpersonals känslor påverkar deras upplevelse av att ge palliativ vård – vilka belyste vårdpersonalens erfarenheter. Slutsats: Resultatet visade både hinder och möjligheter för palliativ vård för personer med intellektuell funktionsnedsättning. Vårdpersonalens upplevelser präglas av ett fokus på hinder där bristande utbildning samt bristande samarbete tydligast försämrar möjligheten till jämlik vård till patientgruppen. Utifrån dessa resultat finns förutsättningar att utveckla framtida vård., Background: There is a growing interest in providing palliative care for people with intellectual disabilities, and as a consequence a growing interest in recognizing their special needs and difficulties in accessing equitable end-of-life care. This places demands on healthcare staff to be able to identify palliative needs, not least to assess when the end of life is approaching. This knowledge benefits both the individual and society as a whole. As palliative care for people with intellectual disabilities is less avaliable than for the rest of the population, this literature study looked for identified reasons for this inequality. Aim: To discribe healthcare professional’s experperinces of factors that facilitates or hinder palliative care for people with intellectual disabilities. Method: This study is a literature review. A thematic analysis with an inductive approach was carried out, where included articles were analyzed using Braun and Clarke's thematic analysis method. A total of 14 articles were selected from the databases CINAHL and PubMed. Results: Five main themes emerged in the result – How ethical values affect the way healthcare professional´s experiences palliative care, How the level of knowledge impacts the possibility to provide good palliative care, The practical conditions that an employer offers, How healthcare professionals experience the impact of the patients' family members on the palliative care and How the emotions of the healthcare professional’s affects their experience of providing palliative care – which illuminated the experiences of the healthcare professionals. Conclusion: The result showed both obstacles and opportunities for palliative care for persons with intellectual disabilities. The healthcare professionals' experience is characterized by a focus on obstacles, where insufficient training and cooperation are the most prominent factors in making it more difficult to provide equal care for the patient group. Based on these resu

Contains fulltext : 283542.pdf (Publisher’s version ) (Open Access), Background: Aggressive incidents are common in people with intellectual disabilities. Therefore, we aimed to assess whether supplementation of multivitamins, minerals, and omega-3 fatty acids (FA) reduces aggressive incidents. Methods: We conducted a randomised, triple blind, placebo controlled, single crossover intervention trial. People with intellectual disabilities or borderline intellectual functioning, between 12 and 40 years of age, and showing aggressive behaviour were included. Participants received either a daily dose of dietary supplements, or placebo. Primary outcome was the number of aggressive incidents, measured using the Modified Overt Aggression Scale (MOAS). Results: There were 113 participants (placebo, n = 56), of whom 24 (placebo, n = 10) participated in the crossover phase of the trial. All 137 trajectories were included in the analyses. There was no significant difference in mean number of aggressive incidents per day between those assigned to supplements and those who received placebo (rate ratio = 0.93: 95% Confidence Interval [CI] = 0.59–1.45). Conclusion: In this pragmatic trial, we did not find significant differences in the outcomes between the supplement and placebo arms. The COVID-19 pandemic started midway through our trial, this may have affected the results.

Objectives: Mental imagery is important in the development and maintenance of psychological disorders and well-being but has been neglected in people with intellectual disabilities. A detailed idiographic analysis of the lived experience of mental imagery in this population is presented. Design: This qualitative study uses interpretative phenomenological analysis (IPA). It involved inclusive research methods with people with intellectual disabilities and other stakeholders (including family members, advocates, support workers and intellectual disability service managers). Methods: Ten individual semi-structured interviews were conducted with people with mild-moderate intellectual disabilities. Participants were opportunistically sampled through organisations providing community services to people with intellectual disabilities in the UK. Two men and eight women (mean age 43 years) participated. Interviews were audio-recorded and analysed using IPA. Results: People with intellectual disabilities are able to experience a range of rich and detailed mental images across all sensory modalities. Participants reported changes in affect based on mental imagery, and an ability to experience both spontaneous and deliberate mental images. The emotional saliency of the object of mental imagery appeared to influence participants' ability to engage with imagery. A number of adaptations make mental imagery more accessible and easier to report. The ability of people with intellectual disabilities to experience vivid mental imagery has important clinical implications for the use of a range of mental imagery interventions with this population. Conclusions: The need to consider mental imagery interventions for this population, and how these can be adapted to ensure accessibility is a priority for people with intellectual disabilities and psychological disorders.

Objectives Within care organisations for people with intellectual disabilities, numerous strategies are employed to stimulate the application of new knowledge, and professionals play a key role in this process. Consequently, gaining insight into professionals’ perspectives on how to encourage the application of new knowledge is vital, especially in the case of incoming professionals. They have a stronger need for new knowledge due to having acquired only a limited knowledge base about intellectual disabilities in their education. Therefore, this study focused on the incoming professionals’ perspectives on factors stimulating application of new knowledge within the care and support for people with intellectual disabilities. Methods A concept mapping study was conducted with incoming support staff, psychologists, and intellectual disabilities physicians. Data collection included brainstorming, pile sorting and rating to create three concept maps, which were interpreted by experts. Results Overall, the participants generated 234 statements. Incoming support staff primarily expressed their preference for experiential and work-based learning and described their role as being knowledge receivers. Incoming psychologists and physicians expressed their ownership of knowledge in requesting opportunities to develop themselves. Conclusion To enhance incoming professionals’ application of new knowledge, care organisations for people with intellectual disabilities can encourage professionals in manifold ways, ranging from providing (in)formal learning opportunities and accessible sites to creating a learning culture.

The present study aimed to explore the situation of people with intellectual disabilities and their families during the first three months of the Russian invasion in Ukraine. Utilising a snowball sampling procedure, five participants were recruited to participate in this descriptive qualitative study. Thematic analysis was used to analyse the interviews. Five overarching themes emerged from the data: 1) The physical and mental well-being of people with intellectual disabilities was threatened due to a lack of fulfilment of basic needs; 2) People with intellectual disabilities experienced difficulties in finding safety within air-raid shelters; 3) People with intellectual disabilities and their families could only flee the country with help and support; 4) Creative solutions were developed to help keep in touch with and support people with intellectual disabilities and their families; and 5) Fear regarding the quality of life of and support for people with intellectual disabilities in the near future.

Background: Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised. Method: Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised. Results: Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed‐methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible. Conclusions: Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration.

Background: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices. Methods: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54–89 years, with mild to moderate intellectual disabilities (IQ <70) and low social–emotional development levels. We combined participant observations and qualitative interviews. Results: Based on the observations, the main themes for the interviews were established. Residents indicated to be free to make independent choices, and experienced less autonomy with regard to health issues and finances. Support staff stated that residents' level of autonomy depends on residents' characteristics, needs, preferences, the attitude of support staff and the rules of the care institution. Conclusion: Residents had a clear view on their autonomy in making independent choices. Support staff is mindful of preserving residents' autonomy, which in practice is limited.

Background Falls are common among people with intellectual disabilities. Many falls happen within the home. Our scoping review aimed to identify evidence for falls-risk factors and falls-prevention interventions for this population. Method We conducted a multi-database search to identify any type of published study that explored falls risk factors or falls-prevention interventions for people with intellectual disabilities. Following a process of (i) title & abstract and (ii) full-text screening, data was extracted from the included studies and described narratively. Results Forty-one studies were included. Risks are multifactorial. There was limited evidence of medical, behavioural/psychological, or environmental interventions to address modifiable risk factors, and no evidence of the interventions’ cost-effectiveness. Conclusions Clinically and cost effective, acceptable and accessible falls-prevention pathways should be available for people with intellectual disabilities who are at risk of falls from an earlier age than the general population.

Background: People with intellectual disabilities and behaviours that challenge others are living longer. This review aimed to explore what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK. Method: A rapid scoping review of published and unpublished literature was conducted based on collaborative working with key stakeholders and using systematic methods of data searching, extraction and analysis. Results: Consistent social work support, skilled staff, suitable accommodation, creative engagement with individuals and families to plan ahead, and timely access to quality healthcare are all required to promote successful transitions as people age, and to avoid unwanted/inappropriate transitions at points of crisis. Conclusions: More research is needed to assess the types of services that this population can and do access as they age, the quality of those services, and the extent to which local commissioners are planning ahead for people with intellectual disabilities and behaviours that challenge others.

Background: Aggressive incidents are common in people with intellectual disabilities. Therefore, we aimed to assess whether supplementation of multivitamins, minerals, and omega-3 fatty acids (FA) reduces aggressive incidents. Methods: We conducted a randomised, triple blind, placebo controlled, single crossover intervention trial. People with intellectual disabilities or borderline intellectual functioning, between 12 and 40 years of age, and showing aggressive behaviour were included. Participants received either a daily dose of dietary supplements, or placebo. Primary outcome was the number of aggressive incidents, measured using the Modified Overt Aggression Scale (MOAS). Results: there were 113 participants (placebo, n = 56), of whom 24 (placebo, n = 10) participated in the crossover phase of the trial. All 137 trajectories were included in the analyses. There was no significant difference in mean number of aggressive incidents per day between those assigned to supplements and those who received placebo (rate ratio = 0.93: 95% Confidence Interval [CI] = 0.59–1.45). Conclusion: In this pragmatic trial, we did not find significant differences in the outcomes between the supplement and placebo arms. The COVID-19 pandemic started midway through our trial, this may have affected the results.

Background: Information regarding the common-daily support needs of older people with intellectual disabilities remains scarce, despite the necessity of such knowledge to the provision of adequate support. This exploratory study aims to identify the most important support needs. Method: A mixed-method design was conducted, in which 11 semi-structured interviews were held with psychologists to gain insight into the support needs of older people with intellectual disabilities. Results: The data provide an overview of the support needs of older people with intellectual disabilities in all quality-of-life (QoL) domains. Physical well-being, emotional well-being, interpersonal relationships and self-determination were identified as the most important domains for older people with intellectual disabilities. Conclusions: The findings of this study may guide the development of a specific training for support staff and constitute a valuable contribution to raising awareness among support staff concerning the broad range of support needs existing among older people with intellectual disabilities.

Various changes in intellectual disability policies and practices encourage care organizations to look for new ways to provide their services. In their search, organizations often look at the possibilities of technology for shaping their service portfolio. One way in which technology can be used is to organize and deliver support remotely. The Dutch service provider organisation Philadelphia Care Foundation (PCF) developed and implemented the remote support service DigiContact as one component of a broader range of services for independently living people with intellectual disabilities. The service provides support for day-to-day living through video calls or regular (audio-only) telephone calls with a team of specially trained support workers. The service is 24/7 available and its support can be deployed on demand by people with intellectual disabilities themselves: whenever and wherever this is needed. Since the start of DigiContact, PCF has felt the need to monitor and evaluate the service in terms of its quality and usefulness. In this context, a better understanding of what the service can (and cannot) contribute to the lives of people with intellectual disabilities is essential. This thesis aims to gather knowledge regarding the added value of including DigiContact in a broader offer of services for people with intellectual disabilities who live independently in society. Five separate studies were performed that explored mainly the personal experiences of people closely involved in the DigiContact support process: support users (people with intellectual disabilities), their case workers (support workers who provide onsite support and coordinate services around support users), and DigiContact support workers. An inclusive approach to research was adopted, as this was expected to enrich both research processes and findings. This approach was shaped in the form of a collaboration between the PhD candidate and a researcher with intellectual disabilities. The findi

Purpose: Lockdowns due to the Covid-19 pandemic may have had a disproportionate impact on the daily lives of people with intellectual disabilities. Many of them had to deal with limited social contacts for an extended period. This study explores in depth how people with intellectual disabilities in the Netherlands experienced their daily lives, in particular due to lack of access to regular work activities. Materials and methods: Eight participants with intellectual disabilities were interviewed. Interpretative Phenomenological Analysis (IPA) was employed in conducting and analysing interviews. Results and conclusions: Analysis yielded three overarching themes that are conceptually linked. Participants experienced a prolonged lack of social connections that resulted in experiences of social isolation and feelings of loneliness. This led to different kinds of struggles: either internal struggles involving negative thoughts or depressive feelings, or a perceived threat to their autonomous position in society. Meanwhile participants had to sustain their sense of self-worth in the absence of work activities. The findings emphasise the importance of social opportunities through the access to work activities for people with intellectual disabilities. Interventions are suggested to help reverse the increased social inequalities and enhance rehabilitation via work activities for people with intellectual disabilities.Implications for rehabilitation: More awareness may be raised among authorities, employers and the general public about the significant value people with intellectual disabilities attribute to meaningful social connections, in particular through work activities. Also, more awareness may be raised about the potential adverse effects of the loss of work activities and social connections on the quality of life of people with intellectual disabilities. Providing social support to others may help people with intellectual dis

This brief report proposes strategies to support qualitative research with people with intellectual disabilities on topics related to death and dying. We prepared a scoping review on methodological approaches used for qualitative research on death and dying involving participants with intellectual disabilities and a study on perceived barriers and facilitators to accessing end of life settings, conducted with co-researchers on an online video communication platform. Through conducting these two studies, we found three strategies that we believe will increase the uptake of this research for policymakers, funding bodies and other researchers. The strategies concern research agendas, structured methodological guidance, and allocation of funds. When planning out qualitative research projects about death and dying topics, people with intellectual disabilities must be on the research agendas on topics related to death and dying. To realize this obligation, stakeholders would benefit from structured methodological guidance. The design, planning, and conduct of such studies would benefit greatly from such guidance and would ideally result in the uptake of this type of research. Additionally, proper funding taking into account needed but time-consuming accommodations for participants is necessary. These strategy options aim to increase the amount of qualitative research that includes people with intellectual disabilities as participants.

In research on Easy Language and automatic text simplification, it is imperative to evaluate the comprehensibility of texts by presenting them to target users and assessing their level of comprehension. Target readers often include people with intellectual or other disabilities, which renders conducting experiments more challenging and time-consuming. In this paper, we introduce Okra, an openly available touchscreen-based application to facilitate the inclusion of people with disabilities in studies of text comprehensibility. It implements several tasks related to reading comprehension and cognition and its user interface is optimized toward the needs of people with intellectual disabilities (IDs). We used Okra in a study with 16 participants with IDs and tested for effects of modality, comparing reading comprehension results when texts are read on paper and on an iPad. We found no evidence of such an effect on multiple-choice comprehension questions and perceived difficulty ratings, but reading time was significantly longer on paper. We also tested the feasibility of assessing cognitive skill levels of participants in Okra, and discuss problems and possible improvements. We will continue development of the application and use it for evaluating automatic text simplification systems in the future.

BACKGROUND: People with disabilities are employed at lower rates than non-disabled individuals and, among people with disabilities, those with intellectual disabilities have most difficulty finding and keeping employment. The reasons for the low labour participation among people with intellectual disabilities are many. Sport participation has a number of positive effects for the individual, and it is reasonable to hypothesise that sport participation favours labour-force participation for individuals with intellectual disabilities. OBJECTIVE: The dual aim of the current study was to investigate labour market participation among Swedish athletes with intellectual disabilities attending Special Olympics Invitational Games, and to investigate these athletes’ experiences regarding the effect of sport participation on finding and keeping a job. METHOD: The study design includes two parallel data collections, a survey and an interview study. The survey was analysed using descriptive statistics and the interviews were analysed using content analysis. RESULTS: The major result of the survey was the large number of individuals with intellectual disabilities who were in work: among men, 72% and, among women, 44%. This result was encouraging and differs from previous statistics on employment among Swedes with intellectual disabilities. The content analysis resulted in a first step in the categories manual work , individual sports and team sports , and in a second step, where the relation between sports and work was analysed, in two categories, namely indirect and direct relations between sport and work . CONCLUSION: To improve chances for individuals with intellectual disabilities to find and keep a job, sports participation should be encouraged.

Bakgrund: Erkända globala och nationella dokument framhåller sexualitet som en mänsklig rättighet. Trots detta förbises personer med intellektuell funktionsnedsättning (IF) rätt till sin sexualitet. Förbiseendet medför bland annat att de får bristande stöd av personal i detta viktiga livsområde varpå deras möjlighet att uttrycka sin sexuella identitet minimeras. Syfte: Studien syftar till att undersöka personals upplevelser av att bemöta personer med IF:s sexualitet inom bostäder med särskild service enligt LSS utifrån sin kunskap och kompetens, samt vad de ser för eventuellt kompetensbehov. Metod: Vi har använt en kvalitativ forskningsdesign och intervjuat sju kommunalt anställda personer inom bostäder med särskild service. Alla informanter har erfarenhet av att arbeta med LSS personkrets ett och några även av personkrets tre. Studiens insamlade empiri har analyserats med hjälp av tematisk analys och slutligen har vi tolkat vårt resultat med hjälp av ett socialkonstruktivistiskt perspektiv på sexualitet och teorier om professionellt handlingsutrymme. Resultat: Studien visar att informanterna har begränsad kunskap och färdigheter i att bemöta sexuella behov hos personer med IF. Dessutom framkommer en övergripande tabukänsla kring ämnet sexualitet med tystnadskultur som följd. Riktlinjer och vägledningsdokument saknas att luta sig emot samt bristande stöd från ledning framkommer. Informanterna uttrycker en stor osäkerhet kring att vara ett sexuellt stöd och efterfrågar omfattande kompetensutveckling för att de ska känna sig kunskapsmässigt och rättsligt säkra att arbeta med sexualitet. Slutsats: För att förbättra stödet och möjligheterna för personer med IF att få vara sexuella personer och bli erkända som sådana på ett respektfullt sätt, krävs det bättre utbildning, riktlinjer samt lagstöd för personalen. Det är också viktigt att arbeta mot de fördomar och tabun som råder kring sexualitet och IF, så att människor med IF inte stigmatiseras och marginaliseras ytterlig, Background: Nationally and globally established documents accentuate sexuality as a human right. Although this is the case, people with intellectual disabilities (ID) are shunned regarding their rights to their own sexuality. This precedence leads to caregivers, tasked with supporting intellectually disabled service users, to neglect helping them in this field, giving them less opportunities to express their own sexual identities. Purpose: This study aims to evaluate caregivers experiences when it comes to addressing sexuality in the residential homes of the people with IDs that they support, as well as what competence they deem as necessary to handle such situations. Method: In this qualitative study we have interviewed seven municipally employed, tasked with supporting people with ID within group homes. The empirical data we've collected has been analyzed with the help of a thematic analysis, for which our result has been interpreted while using social constructivist perspectives on sexuality and theories on professional discretion. Results: The study shows that the informants have limited knowledge and lack of skill when it comes to assisting people with ID with their sexualities, as well as coping with the stigma related to the topic sexuality and the culture of silence that follows. Most workplaces lack guidance documents and rules regarding the topic of sexuality and a lack of support from managers. Conclusion: To better help shape the support needs and possibilities of people with ID, allowing them to voice their sexualities and being recognized as sexual beings in a respectful manner; education, guidance, overall rules and regulations are needed for the caregivers tasked to work with them. This is an area where the caregivers and society as a whole have a deciding role, making sure that all people, no matter their abilities, are allowed to express themselves sexually. It is also important that society keeps on working against the taboo that is related to dis

Purpose The level of participation of people with intellectual disabilities (ID) in various forms of work, including daytime activities, appears to be suboptimal. Informal networks of people with ID constitute crucial forms of support, as they can significantly influence occupational choices and opportunities. This review aims to synthesize existing research for the purpose of examining how informal network members perceive the meaning of employment or daytime activities for their relatives with ID. Methods Following the PRISMA guideline, a systematic search of scientific literature published between 1990 and July 2022 was conducted. The qualitative results from twenty-seven studies (qualitative and mixed-method) were analyzed using thematic synthesis. Results Four overarching themes and several subthemes were identified: (I) Ensuring customized work for my relative; (II) The ongoing need to collaborate and share care responsibilities with professionals; (III) The meaning of work for both my relative and myself; and (IV) Achieving full work participation for my relative is neither straightforward nor self-evident. Conclusions Informal networks place great value upon customized and sustainable work opportunities for their relatives with ID, particularly community-based work. While network members play an important role in creating these opportunities, they encounter obstacles resulting from both collaboration difficulties with professionals and employers and public and structural forms of stigma. Researchers, professionals, policy makers, and employers are encouraged to collaborate with individuals with ID as well as their networks to increase the meaningful work opportunities available to them.

Background: People with intellectual disabilities (ID) have a higher risk of sleep disorders. Polysomnography (PSG) remains the diagnostic gold standard in sleep medicine. However, PSG in people with ID can be challenging, as sensors can be burdensome and have a negative influence on sleep. Alternative methods of assessing sleep have been proposed that could potentially transfer to less obtrusive monitoring devices. The goal of this study was to investigate whether analysis of heart rate variability and respiration variability is suitable for the automatic scoring of sleep stages in sleep-disordered people with ID. Methods: Manually scored sleep stages in PSGs of 73 people with ID (borderline to profound) were compared with the scoring of sleep stages by the CardioRespiratory Sleep Staging (CReSS) algorithm. CReSS uses cardiac and/or respiratory input to score the different sleep stages. Performance of the algorithm was analysed using input from electrocardiogram (ECG), respiratory effort and a combination of both. Agreement was determined by means of epochper-epoch Cohen’s kappa coefficient. The influence of demographics, comorbidities and potential manual scoring difficulties (based on comments in the PSG report) was explored. Results: The use of CReSS with combination of both ECG and respiratory effort provided the best agreement in scoring sleep and wake when compared with manually scored PSG (PSG versus ECG = kappa 0.56, PSG versus respiratory effort = kappa 0.53 and PSG versus both = kappa 0.62). Presence of epilepsy or difficulties in manually scoring sleep stages negatively influenced agreement significantly, but nevertheless, performance remained acceptable. In people with ID without epilepsy, the average kappa approximated that of the general population with sleep disorders. Conclusions: Using analysis of heart rate and respiration variability, sleep stages can be estimated in people with ID. This could in the future lead to less obtrusive measurements of

During the COVID-19 pandemic, support workers and health professionals caring for and supporting people with intellectual disabilities (ID) required new knowledge on, for example, treatment and infection prevention. ID care organizations had to quickly share up-to-date knowledge and encourage its application. This study explored the contextual factors influencing knowledge sharing and application in the care and support for people with ID, contrasted their relevance prior to and during the pandemic, and compared the relevance of these factors according to support workers and health professionals. In 2021, 160 Dutch professionals working with people with ID completed an online survey, with 69 being support workers and 91 being health professionals. For most of the participants, the contextual factors known to be relevant for knowledge sharing and application prior to the pandemic (e.g., the leadership of professionals, user-friendliness of interventions) also helped them to process knowledge during the pandemic. These factors were rated equally or as being even more important (e.g., “Practice leadership of management” and “Office arrangements and Information and Communication Technology (ICT) systems”). Moreover, support workers and health professionals rated factors such as the available capacity of employees and office arrangements and ICT systems differently. The findings provide initial evidence that during a health crisis like the COVID-19 pandemic, both the role and importance of contextual factors influencing knowledge sharing and application in the care and support for people with ID partially differ from prior to the pandemic.

The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have ‘a real connection’ with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connection. In conclusion: joint engagement in an activity appears to be a context that fosters opportunities for real connection. Furthermore, support staff should adopt a sensitive attitude and create a safe atmosphere, to establish real connections. Participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connection.