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Contains fulltext : 307467.pdf (Publisher’s version ) (Open Access), Background: This study, grounded in self-determination theory, examined how satisfaction of the needs for autonomy, relatedness and competence in people with mild to borderline intellectual disability (MBID) changed over a 4.5-year period. Additionally, it explored the association between life events across various domains (i.e. health, support and living situation, crime, relationships and freedom and finance) and these changes and explored the prospective associations between these needs, perceptions of support from direct support staff and the well-being and ill-being of people with MBID. Methods: Based on a sample of 117 adults with MBID, multiple regression analyses were conducted to determine correlations between constructs at both time points and the impact of autonomy support on need satisfaction and motivation, taking into account life events. Results: The analyses showed that, at both time points, most constructs were statistically significantly correlated and remained so despite a time lag of 4.5 years. Autonomy support emerged as a significant positive predictor, of medium size, for satisfying autonomy and relatedness needs. Its association with competence need satisfaction was not statistically significant after Bonferroni correction. For type of motivation, autonomy support statistically predicted increased autonomous motivation, irrespective of life events. Conclusions: Findings underline the potential of autonomy supportive direct support in the lives of individuals with MBID. Some unexpected null findings underscore the need for further study into the interplay between autonomy support, life events and the well-being of people with MBID., 17 juni 2024, 16 p.

Background It can be challenging for support staff to develop meaningful moments of interaction with people with profound intellectual disabilities. Gathering information on observable behaviour characterising such meaningful moments is expected to be beneficial. Method Three staff-client dyadic interactions were videotaped for 30 min. During reviewing the recording, staff members indicated which moments of interaction they experienced as meaningful. Per dyad, one meaningful moment was microanalytically coded via a developed coding system, and behaviourally described. Results The coding system reliably coded behaviour at the micro level. Exploratory results indicated that looking, movement and touching were most shown, and that staff displayed this behaviour more frequently than their clients. Both exhibited behaviours substantially more often during meaningful moments than at their onset. Discussion People with profound intellectual disabilities are more engaged during meaningful moments of interaction compared to at their onset. In daily practice, cultivating circumstances increasing their involvement is important.

The study aimed to gain insight into knowledge management in the intellectual dis-abilities (ID) care sector during the COVID-19 pandemic. We explored and describedhow knowledge producers, intermediaries, and knowledge users experienced knowl-edge management during this crisis situation, the responses to the specific knowl-edge needs in the ID-care sector, and changes in roles and collaboration during thisperiod. Twenty-five individual in-depth semi-structured interviews were conductedwith knowledge producers, intermediaries, and knowledge users in the Dutch ID-caresector. An inductive thematic analysis was conducted. Three key themes were identi-fied: (1) knowledge needs during the COVID-19 pandemic, (2) experiences withknowledge management, and (3) roles and collaboration in knowledge management.There was an urgent need for specific ID-related knowledge and how to translateavailable evidence for the general population into ID-care settings. In knowledgemanagement, the focus was on knowledge production and exchange, with validationand application receiving less attention. Within stakeholder groups, collaboration andknowledge exchange were intensified by existing or new knowledge infrastructures.Between stakeholder groups, knowledge producers and users created short lines toexchange needs and produce knowledge. This paper provides unique insights intoknowledge management in the Dutch ID-care sector during the COVID-19 pandemic.Implications are discussed to improve future knowledge management processes. Sup-port with knowledge validation and local knowledge infrastructures (complementaryto centralized national knowledge infrastructures) help to assess the reliability andusefulness of knowledge and improve its use in practice during future pandemic-related crisis situations.

30 mei 2023, Item does not contain fulltext, Background: This study explored the perceptions of staff for people with mild intellectual disabilities or borderline intellectual functioning and severe challenging behaviour in relation to the support they received at work from four groups of professionals (i.e. team leaders, managers, psychologists and other staff members). The team climate, such as the workplace having clearly defined goals for staff, was also explored. In addition, the associations between the support from each of the professionals and team climate with the well-being and job satisfaction of staff were examined. We hypothesised that staff would perceive higher levels of support from professionals around a team (i.e. team leaders, managers and psychologists) and a more positive team climate when professionals around a team experience more positive mutual collaboration. Methods: An online questionnaire about support at work, team climate, well-being and job satisfaction was completed by 201 staff members from 32 teams at 10 residential service organisations. In addition, professionals surrounding these teams rated their mutual collaboration. Results: Both support received at work from all four groups of professionals and team climate showed significant small to moderate positive associations with job satisfaction. Well-being was associated with support from team leaders, psychologists and other staff members in the team, as well as with team climate. We did not find support for the hypotheses that staff would perceive higher levels of support or a more positive team climate when professionals around a team experience more positive mutual collaboration. Conclusions: This study highlights the importance of investing in staff support and creating a positive team climate for promoting staff well-being and job satisfaction. Implications for future research regarding staff support, team climate and the collaboration between professionals around a team are discussed.

Item does not contain fulltext, Introduction: Family members are often the main provider of informal support to people with mild intellectual disabilities. In the current study, we explored whether their family-based social capital is prospectively associated with their wellbeing and emotional and behavioral problems. Methods: Sixty-nine participants with mild intellectual disabilities and key (proxy reporting) staff members participated in two waves of data collection (T1, T2). Data were collected about family-based social capital (FNM-ID), subjective wellbeing (PWI-ID), and emotional and behavioral problems (ABCL, BPI-01). Results: People who reported less support provision to family members and more reciprocal family support relationships at T1 experienced higher levels of internalizing behavior problems at T2, after accounting for T1 levels of internalizing behavior problems. No other associations were found between earlier family-based social capital dimensions and psychological outcomes at T2. Conclusion: Our study provides initial insights regarding the prospective associations between the family-based social capital of people with mild intellectual disabilities and their wellbeing and emotional and behavioral problems. Future studies should include larger samples to investigate if our preliminary results are replicated., 20 november 2023, 18 p.

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People with severe or profound intellectual disabilities (IDs) are believed to experience low levels of self-determination, which negatively affects their quality of life. This systematic review describes existing interventions aimed to support self-determination or components thereof and synthesises evidence on the interventions' effects. Eight databases were searched, turning in 76 articles for the final inclusion. The studies included 631 people with severe or profound IDs of whom 81% had multiple disabilities. The studies had quantitative (k = 63), qualitative (k = 7) and mixed study designs (k = 6). Sample sizes ranged from 1 to 95 and a study quality index ranged from 40% to 100%. While many studies included several self-determination components and intervention elements, overall, 53 studies focused on the self-determination components choice making, independence and problem solving. Other studies included increased assistance (k = 14); engagement in meaningful activities and relationships (k = 10); community and societal participation (k = 5); supporting the basic psychological needs autonomy, competence and relatedness (k = 4); individuality and dignity (k = 3); supportive decision-making (k = 2); self-advocacy (k = 2); and motivation (k = 1). Intervention elements included technology (k = 33); multiple-component training packages, goal setting, empowerment tactics and applied behaviour principles (k = 17); training of caretakers (k = 17); changes in policies and living arrangements (k = 9); supporter responsiveness (k = 1); drama therapy and storytelling (k = 1); electrical wheelchair training (k = 1); joint painting procedure (k = 1); youth advocacy project (k = 1); and multiliteracies training (k = 1). Reflecting the heterogeneity of the field, only four studies tested a similar intervention for this population and were eligible for the meta-analysis, which combined showed a small effect size of 2.69. Further research is needed to explore relationships be

People with mild to borderline intellectual disabilities face many barriers toward their sexual health. To promote sexual health and overcome these barriers, they need individualized forms of sexuality support and education. To align sexuality support and education insight is needed on their understanding of sexual health. The current paper aims to provide greater insight in what sexual health consists of according to people with mild to borderline intellectual disabilities. Nine people with a mild to borderline intellectual disability participated in a concept mapping procedure, consisting of brainstorming, sorting, and ranking the statements. The resulting clusters and concept map were interpreted by an expert group. Analysis resulted in five clusters which participants considered important for their sexual health. According to people with mild to borderline intellectual disability cluster pertaining to romantic relationships and sexual socialization were the most important. These were followed by clusters on sexual health and lastly sexual selfhood. These results have implications for the development of sexuality support and education, as well as further research.

Introduction Digital social contact is increasingly being used, which accelerated during the COVID-19 pandemic. This study aimed to determine the consensus among stakeholders regarding recommendations for the use and facilitation of digital social contact for people with intellectual disabilities living in sheltered care facility homes. Methods This consensus statement was developed in three consecutive rounds of questionnaires (rapid online modified Delphi design). The expert-groups included people with disabilities (N = 6) and their families (N = 10), support professionals (N = 9), behavioural consultants (N = 7), managers of sheltered care facility homes (N = 10), scientists and industry experts (N = 15). Findings Four main themes were identified: 1. Reasons for and types of digital social contact; 2. Support and training needs; 3. Materials and other requirements needed to enable digital social contact; and 4. Best practices and future developments. For each theme, several recommendations were formulated. Discussion and conclusion This study resulted in a consensus statement aimed mainly at care professionals, families of people with intellectual disabilities and managers of sheltered care facility homes. Findings show that digital social contact can contribute to societal participation of people with disabilities. Additionally, tailored exploration of digital contact is recommended, as well as aiming for inclusive-by-design technology developments with developers and stakeholders working together.

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 Intellectual disability organisations in the Netherlands are seeking to improve clients’ quality of care by implementing methods that reduce involuntary care. This study described insights gained from sharing tacit and experiential implementation knowledge in Communities of Practice (CoP). Method In a participatory research, managers, policymakers, experts-by-experience, support staff, and researchers participated in two CoP. Transcripts of the first meetings, focusing on tacit implementation knowledge and experiences in intellectual disability care, were analysed qualitatively. Results Six themes and nine subthemes were found. One related to implementing methods in line with the Care and Coercion Act. Other themes were the quality of care dilemma, implementation determinants, organisational context, change in organisational culture, and implementation plans and strategies. Discussions Findings reveal insights regarding the impact of implementing methods that reduce involuntary care on care professionals, management, and organisations. Through thinking together, CoP participants collectively learned about implementing methods in intellectual disability care.

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.

During the COVID-19 pandemic, many people with intellectual disabilities living in care facilities could not receive visitors. Health authorities suggested the use of digital social contact as an alternative for in-person visits. We examined how people with intellectual disabilities living in care facilities experienced the use of digital social contact with their informal social network throughout 2020. Residents, their relatives, volunteer visitors, direct support staff, and care facility managers (N = 283) completed an online questionnaire, of whom 35 participated in an interview. Video calling and in-person visits were among the most common forms of staying in touch. Experiences with digital social contact depended on residents’ abilities and support needs, and on preconditions, such as staff availability. The first phases of the pandemic led to experiences of possibilities and benefits of using digital social contact as complementary to in-person contact for people with different levels of intellectual disability, also after the pandemic.

Background: In this study, agents working in positions of authority within health sector organisations shared their perspectives concerning both the involvement of experts by experience with intellectual disabilities within their own organisations and their recommendations as to how best to involve experts by experience in policy and practice. Method: Using purposive sampling, eight agents were selected for semi-structured interviews. The interviews were analysed using thematic analysis. Results: The results indicated the importance of involving experts by experience. However, they also highlighted several barriers such as a lack of emphasis on genuine attention, insufficient visibility and recognition of expertise, and a lack of support for sustainable inclusion. Conclusions: Agents are willing to involve experts by experience in health sector organisations, but practical challenges hindered them from actually doing so. This study emphasises the importance to find solutions for better inclusion in policies.

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 While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear. Method We conducted semi-structured interviews with six adults (four men, two women) aged 30–61 with mild intellectual disabilities and drug-resistant epilepsy to investigate their experiences of self-determination. The data were analysed using Interpretative Phenomenological Analysis. Results Three main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control. Conclusions In this study, the impact of epilepsy on experienced self-determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.

Inclusive research—in which people with an intellectual disability both collaborate with researchers and work as researchers themselves—has gained increased attention over the last three decades. Although the foundational principles of conducting inclusive research are well‐established at this point, there is a relative dearth of insights concerning the underlying reasons for collaborating as part of inclusive research projects. Therefore, this study sought to identify the reasons why researchers with experiential knowledge ( n = 9), academic researchers ( n = 8) and principal investigators ( n = 10) collaborate within inclusive research projects. All 27 participants were interviewed individually, in order to explore their reasons for collaborating within one of the six inclusive research projects, which encompassed a range of research avenues within the field of intellectual disability research. A thematic analysis was conducted to gain insight into these reasons. For the three groups of participants, several themes emerged, such as experiencing full participation (researchers with experiential knowledge), making research (processes) better suited to the needs of participants with an intellectual disability (academic researchers) and striving for equivalence (principal investigators). Understanding why people collaborate within inclusive research projects is important for facilitating collaborative partnerships, which are a precondition for inclusive research projects.

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.

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

Item does not contain fulltext, The associations between physiological measures (i.e., heart rate and skin conductance) of autonomic nervous system (ANS) activity and severe antisocial spectrum behavior (AB) were meta-analyzed. We used an exhaustive partitioning of variables relevant to the ANS–AB association and investigated four highly relevant questions (on declining effect sizes, psychopathy subscales, moderators, and ANS measures) that are thought to be transformative for future research on AB. We investigated a broad spectrum of physiological measures (e.g., heart rate (variability), pre-ejection period) in relation to AB. The search date for the current meta-analysis was on January 1st, 2020, includes 101 studies and 769 effect sizes. Results indicate that effect sizes are heterogeneous and bidirectional. The careful partitioning of variables sheds light on the complex associations that were obscured in previous meta-analyses. Effects are largest for the most violent offenders and for psychopathy and are dependent on the experimental tasks used, parameters calculated, and analyses run. Understanding the specificity of physiological reactions may be expedient for differentiating between (and within) types of AB.

Item does not contain fulltext, Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method-Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.

Item does not contain fulltext, Background: The Family Network Method – Intellectual Disability (FNM-ID) was used to compare perspectives of people with mild intellectual disability and their support workers on family networks of people with intellectual disability. Method: 138 participants with mild intellectual disability and support workers were interviewed, using the FNM-ID. Paired t-tests were used to examine differences in perspectives. Multiple regression analyses were used to examine divergence in perspectives. Results: People with mild intellectual disability perceived their family networks to be larger and to provide more support than support workers did. Living in a residential setting and having higher levels of externalising behaviour were associated with differences in perspectives, whereas a higher level of internalising behaviour was associated with more similar views. Conclusions: Individuals with intellectual disability and support workers are unlikely to provide the same information about family networks of people with mild intellectual disability. Behavioural and emotional problems were associated with divergence in perspectives.

Contains fulltext : 247599.pdf (Publisher’s version ) (Open Access), This study examined the general public’s perceptions of how the COVID-19 pandemic has impacted the elderly and people with intellectual disabilities as well how these perceptions relate to people's level of familiarity and contact quality with these groups. A cross-sectional survey was administered to a sample of the Dutch population (n = 1458 and n = 1761, comprising questions related to the elderly and people with intellectual disabilities, respectively). The general public was found to be generally aware of the deleterious impact of the pandemic upon the elderly and people with intellectual disabilities. Specifically, the respondents reported that both groups' quality of life, physical and mental health, and quality and frequency of social contact was lower than it was prior to COVID-19, in addition to perceiving them as lonelier and less self-reliant. Notably, the impact on the elderly was considered to be greater than that on people with intellectual disabilities. Furthermore, those who had no familiarity with people with intellectual disabilities in real life perceived the impact to be lower than those who had a greater degree of familiarity. These findings have important implications, both for increasing awareness of the pandemic’s negative impact on these vulnerable groups and in terms of sufficiently addressing their specific needs and concerns. The findings also underscore that, particularly during the COVID-19 pandemic, it is important to increase the visibility of groups who already relied more on help and support from others in society prior to the pandemic, such as the elderly and people with intellectual disabilities, via, among other things, self-advocacy, education, and enhanced intergroup contact, in order to be able to sufficiently address their needs during these challenging times

27 januari 2022, Item does not contain fulltext, 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.

Contains fulltext : 251950.pdf (Publisher’s version ) (Open Access), Background: Studies about teams of staff supporting people with intellectual disability have focused on team performance of existing teams. This study aimed to examine important factors in the process of setting up a new team of support staff. Specifically, we considered the process for a team that supports service users with mild intellectual disability or borderline intellectual functioning who display severe challenging behaviour from the orthopedagogical perspective (i.e., with a focus on contextual factors). Method: Three participant groups (service users, support staff, and professionals supporting a team) participated in a concept mapping procedure, including generating statements in interviews and focus groups, sorting, and rating. An expert group interpreted the results. Results: Important factors to one or more groups were: service users and support staff getting acquainted early, team safety, social support, a shared vision, and a positive reputation of the new home. Conclusions: Four core outcomes were addressed that may help service organisations to provide an environment matching the needs of service users who show severe challenging behaviour from the start.

Item does not contain fulltext, This study aimed to examine the level of discrimination against people with intellectual disability during COVID-19, and assessed stereotypes, levels of familiarity with people with intellectual disability, and personal experiences with COVID-19 as potential correlates. A cross-sectional study was conducted using a large sample from the Dutch population (n = 1,797). Salient stereotype factors of people with intellectual disability were "friendly" and "in need of help," but not "give nuisance." Those respondents who were unfamiliar with people with intellectual disability in real life demonstrated higher levels of discrimination, perceiving them as more of a nuisance and as being less in need of help, in comparison to those who were more familiar. People with intellectual disability were judged by an ambivalent set of stereotypes during the COVID-19 pandemic that were in line with pre-COVID-19 findings and as such seemed to be fairly persistent and robust. There is a pressing need to both raise awareness of stereotypes towards and discrimination against people with intellectual disability via advocacy and education, and to facilitate positive encounters.

Contains fulltext : 221633.pdf (publisher's version ) (Open Access), Background: Based on self‐reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well‐being and typologies were investigated. Method: 137 participants with mild intellectual disability were interviewed using the Family Network Method‐Intellectual Disability to assess their emotionally supportive family relationships. Data on participants' well‐being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures. Results: Four distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well‐being were found for both supportive and less supportive typologies. Conclusions: A variety of family types were found, with implications for sensitive professional support.

Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method-Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.Copyright © 2021 The Authors. Health and Social Care in the Community published by John Wi

Even though family plays a significant role in the lives of people with intellectual disability, little research has included their own views about their families. This study examined how 138 people with mild intellectual disability describe their family group, with a focus on the reciprocal nature of the emotional support in relationships with family members. Participants reported "significant" family members beyond the nuclear family, and parents were seen as the main provider of support. Only half of participants had a support relationship with siblings and just 13% of participants reported partners. About 30% of support was reciprocal, and reciprocity varied greatly with the types of family connection (e.g., siblings, peers). Implications for future research as well as practice are discussed.

Objectives: Residential care facility (RCF) residents with dementia are highly dependent on care. This can influence their experience of intimacy and sexuality. The perspective of residents and their spouses with regard to love, intimacy, and sexuality were explored and analyzed. Methods: The study was designed using the IPA methodology. Eight in-depth interviews were held with 12 participants: four couples and four individual residents with dementia. Results: Varied stories were shared; however, dementia had a great impact on all of them. Love, intimacy, and being together were considered fundamentally important by both couples and individual participants, although profound dilemmas were encountered. While only one couple experienced physical sexuality within the RCF, other participants reported that love and being intimate were the most important aspects of their current relationship. Regarding the possibility of fulfilling their needs within the RCF, a secure feeling of privacy was considered to be important, but was absent at the time of the survey. Conclusions: Although challenging to appropriately facilitate at RCFs, love, intimacy, and sexuality are still important aspects for residents with dementia and their spouses. Clinical implications: This study addresses these dilemmas and ads to the normalization of love, intimacy, and sexuality within RCF settings; the findings will hopefully improve the wellbeing of residents with dementia and that of their spouses.

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Contains fulltext : 217705.pdf (publisher's version ) (Open Access), Background: Attributions are cognitive variables that influence a person's behaviour. Although a large volume of research has been conducted on the attributions of support staff with regard to challenging behaviour (CB) exhibited by people with intellectual disabilities (ID), studies on patterns of attributional dimensions (i.e. attributional styles) are scarce. Method: Using semi-structured interviews, 19 support staff members were asked to describe incidents of aggressive, self-injurious and sexualized challenging behaviour. Data on attributions were analysed using the Leeds Attributional Coding System. Results: Four attributional styles differed significantly for aggressive, self-injurious and sexualized challenging behaviour. In addition, support staff members largely attributed these three types of CB to characteristics and behaviour of clients with ID. Conclusions: The results indicate that it is important to train support staff to recognize and understand the ways in which their attributions and behaviour influence the existence and maintenance of CB.

Contains fulltext : 219548.pdf (publisher's version ) (Open Access), Partly due to a lack of evidence‐based methods to support people with intellectual disability (ID) and challenging behavior, their needs are often poorly met. One way to generate rapid evidence is to systematically describe and monitor interventions that are considered to be "good practice" - to develop evidence based on practical knowledge. This study describes the Dutch practice‐based intervention Triple‐C (Client, Coach, Competence). The intervention was developed in practice to support people with severe ID to borderline functioning and challenging behavior. The practice‐based nature of Triple‐C means that many of the professionals' actions or activities are often underpinned by their implicit knowledge about the intervention they are delivering. Consequently, as the emphasis is on practice, the professionals can find it difficult to articulate how the intervention is operationalized and positive change achieved. This study aimed to assess the practical knowledge of Triple‐C professionals and to develop an understanding of the mechanisms of change for Triple‐C to improve understanding and to inform future research about the intervention. Through an iterative process, a logic model was developed to describe the intervention and its underlying assumptions. The development of the logic model was shaped using interviews with the founders, focus groups with support staff, psychologists, managers and members of the board of a service provider, and the analysis of published accounts of the Triple‐C intervention. Data gathered from these sources were analyzed using content analysis. The logic model of the Triple‐C intervention provides insight into the key elements of the approach, such as the need for unconditional supportive relationship and carrying out meaningful activities. Moreover, the potential relationship with existing evidence‐based interventions such as Positive Behavioral Support and Active Support are described. Defining the underlying logic of a practice‐

Item does not contain fulltext, Even though family plays a significant role in the lives of people with intellectual disability, little research has included their own views about their families. This study examined how 138 people with mild intellectual disability describe their family group, with a focus on the reciprocal nature of the emotional support in relationships with family members. Participants reported "significant" family members beyond the nuclear family, and parents were seen as the main provider of support. Only half of participants had a support relationship with siblings and just 13% of participants reported partners. About 30% of support was reciprocal, and reciprocity varied greatly with the types of family connection (e.g., siblings, peers). Implications for future research as well as practice are discussed.

Background: Family is recognised as an important context for the self-development of young adults in emerging adulthood, although very little research has addressed the perspective of young people with intellectual disability about their families by using self-report. This study examined how emerging adults with mild intellectual disability define their family support networks, compared with definitions of students without intellectual disability, within a social capital theoretical framework. Method(s): Fifty-three participants with mild intellectual disability and 53 students without intellectual disability were interviewed individually using the Family Network Method - Intellectual Disability (FNM-ID). Data from the FNM-ID relate to key social network measures on how individuals define their family groups, and how they perceive existing supportive relationships within their families. Participants with mild intellectual disability and students were compared on the FNM-ID social network measures. Result(s): Participants with mild intellectual disability reported fewer family members who they considered significant to them than students without intellectual disability. They were less likely to include peers (i.e. friends and partners) and siblings in their significant family networks, had fewer relationships with family members in which they received or gave support, had fewer reciprocal support relationships and had a less central position in their family network. Discussion(s): The family-based social capital of emerging adults with mild intellectual disability differed from that of students without intellectual disability. They may remain more dependent on their natural family for emotional support as their supportive networks have not necessarily made the transition to networks with emotionally close peer relationships.Copyright © 2020 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Stu

BACKGROUND: Based on self-reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well-being and typologies were investigated. METHOD(S): 137 participants with mild intellectual disability were interviewed using the Family Network Method-Intellectual Disability to assess their emotionally supportive family relationships. Data on participants' well-being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures. RESULT(S): Four distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well-being were found for both supportive and less supportive typologies. CONCLUSION(S): A variety of family types were found, with implications for sensitive professional support.Copyright © 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.

Contains fulltext : 221335.pdf (publisher's version ) (Open Access), Background: Family is recognised as an important context for the self‐development of young adults in emerging adulthood, although very little research has addressed the perspective of young people with intellectual disability about their families by using self‐report. This study examined how emerging adults with mild intellectual disability define their family support networks, compared with definitions of students without intellectual disability, within a social capital theoretical framework. Methods: Fifty‐three participants with mild intellectual disability and 53 students without intellectual disability were interviewed individually using the Family Network Method - Intellectual Disability (FNM‐ID). Data from the FNM‐ID relate to key social network measures on how individuals define their family groups, and how they perceive existing supportive relationships within their families. Participants with mild intellectual disability and students were compared on the FNM‐ID social network measures. Results: Participants with mild intellectual disability reported fewer family members who they considered significant to them than students without intellectual disability. They were less likely to include peers (i.e. friends and partners) and siblings in their significant family networks, had fewer relationships with family members in which they received or gave support, had fewer reciprocal support relationships and had a less central position in their family network. Discussion: The family‐based social capital of emerging adults with mild intellectual disability differed from that of students without intellectual disability. They may remain more dependent on their natural family for emotional support as their supportive networks have not necessarily made the transition to networks with emotionally close peer relationships.

Background: The lockdown-measures in response to COVID-19 taken by long-term care organisations might have impacted problem behaviour and behavioural functioning of people with intellectual disability. This study tested changes in reported incidents, in particular regarding aggression, unexplained absence and, for contrast, medication errors. Methods: Metadata on weekly incident and near-incident reports from 2016 to June 2020 involving over 14 000 clients with mild to serious intellectual disability of 's Heeren Loo, a long-term care organisation for people with intellectual disability, were subjected to interrupted time series analysis, comparing the COVID-19 with the pre-COVID-19 period. Results: The imposition of lockdown-measures coincided with a significant drop in incidents (total, P <.001; aggression, P =.008; unexplained absences, P =.008; and medication errors, P <.001). Incidents in total (P =.001) and with aggression (P <.001) then climbed from this initial low level, while medication errors remained stably low (P =.94). Conclusion: The rise in incidents involving aggression, against the background of generally lowered reporting, underlines the need for pandemic control measures that are suitable for people with intellectual disability in long-term care.

Background The demand for support for persons with mild intellectual disability or borderline intellectual functioning is growing rapidly. These persons often encounter individual and familial limitations that influence their human functioning, and often have difficulty coping with the demands of modern society. Although in the areas of policy, research and practice, people with mild intellectual disability or borderline intellectual functioning are generally approached as one group, important differences between them have been reported. Current support seems to be both suboptimal and insufficiently differentiated. Methods In this Delphi study we aimed to explore the need for appropriate and differentiated support for individuals with mild intellectual disability or borderline intellectual functioning. The study was based on five unique profiles of persons with mild intellectual disability or borderline intellectual functioning that are associated with individual and environmental variables. The opinions of expert primary caregivers, professional caregivers and scientists were analysed for potentially appropriate types of support for each of the five profiles. Results A total of 174 statements, divided over the five profiles, were presented to the participants. For 74 statements, consensus was reached between the expert groups. For each profile, these consensual statements represented specific items (e.g. concrete personal goals) and non-specific items (e.g. the attitude towards persons with mild intellectual disability or borderline intellectual functioning, and the coordination of health care) related to the support needs. Conclusion This Delphi-based study generated consensual opinions contributing to a more differentiated system of support for individuals with mild intellectual disability or borderline intellectual functioning. Although these findings need additional investigation, they address actions that might enhanc