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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.

To enhance social inclusion of people with (mild) intellectual disabilities, policy tends to focus on increasing their informal supportive networks. Family members, mostly parents, are often the main providers of informal support to people with mild intellectual disabilities. Previous research has shown the utility of social capital as a theoretical framework to examine support in the family relationships of people with mild intellectual disabilities, and has shown that several features of the family-based social capital of people with mild intellectual disabilities are dependent on support and living arrangements. However, existing research on support and living arrangements does not take the key features of family-based social capital (i.e., bonding and bridging social capital, reciprocity) into account. Therefore, the aim of the current study is to examine the family-based social capital of people with mild intellectual disabilities supported in 24-h residential settings (n = 29) versus outreach support settings (n = 45). All participants were individually interviewed about their family support relationships using the Family Network Method-Intellectual Disability (FNM-ID). Data were analyzed quantitatively using social network analyses and group comparisons. No significant differences between the two subgroups were found in the social network measures: the two subgroups did not differ in their experience of bonding and bridging social capital, nor in terms of the experienced reciprocity in their family relationships. However, a few differences in the composition of the family network were found. While people with mild intellectual disabilities in outreach support settings were more likely to include children in their significant family network and to provide support to parents, participants in 24-h care settings were more likely to report extended family as significant family network members.

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.

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.

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.

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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.

Contains fulltext : 201921.pdf (publisher's version ) (Open Access), Background: To enhance social inclusion of people with intellectual disability, policy is aimed at increasing informal support networks. Nevertheless, staff continue to play a vital role in their support networks. Method: Six individuals with mild intellectual disability, living in community-based settings, were interviewed following a semi-structured format. In-depth accounts of participants' support experiences were established using Interpretative Phenomenological Analysis. Results: Three main themes were identified: relationships with staff placed within a personal history, relationships with staff within an organisational context, and staff support and interviewees' place in the world. Conclusions: Relationships with staff were often one of the closest and most significant social relationships participants had. As living in the community had not necessarily led to meaningful inclusion for participants, the findings point at the important role of staff in supporting and facilitating friendships and close relationships of people with intellectual disability.

Contains fulltext : 198770.pdf (publisher's version ) (Open Access), Background: Informal supportive networks of individuals with intellectual disability have become increasingly important. The aim of this paper is to describe how the Family Network Method - Intellectual Disability (FNM-ID) offers a way to gather the perspective of people with mild intellectual disability on their family support. Method: The FNM is designed to explore how individuals define their family contexts, and more specifically how they perceive existing supportive relationships in these contexts. Results: By carefully piloting ways of questioning people with mild intellectual disability, systematic adaptations were made to the original FNM. Data obtained by the FNM-ID can be analysed using social network analysis. Thereby, the FNM-ID provides rich, theoretically significant information on emotional support in the family networks of individuals with mild intellectual disability. Conclusions: The FNM-ID is a useful and successfully adapted tool for other researchers and professionals to systematically explore the family support experiences of individuals with mild intellectual disability.

Contains fulltext : 200640.pdf (publisher's version ) (Open Access), Background: Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other. Method: Fifty-one staff-family dyads completed the QOL-PMD questionnaire. Agreement between proxies was assessed using the proportion of observer agreement (Po) and Wilcoxon signed-rank tests. Results: Proxies agreed relatively strongly about the applicability of questionnaire items. There was also relatively strong agreement about the client's QOL, except for items related to internal, subjective experiences (e.g., sexual fulfillment, pain). Conclusion: People with severe to profound ID are not able to report their QOL well. Because the people making proxy judgements about their QOL are not in good agreement on some of the most critical subjective indicators, careful information exchange about these indicators is important for improving the QOL of people with ID.

Background: Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other. Method: Fifty-one staff-family dyads completed the QOL-PMD questionnaire. Agreement between proxies was assessed using the proportion of observer agreement (Po) and Wilcoxon signed-rank tests. Results: Proxies agreed relatively strongly about the applicability of questionnaire items. There was also relatively strong agreement about the client’s QOL, except for items related to internal, subjective experiences (e.g., sexual fulfillment, pain). Conclusion: People with severe to profound ID are not able to report their QOL well. Because the people making proxy judgements about their QOL are not in good agreement on some of the most critical subjective indicators, careful information exchange about these indicators is important for improving the QOL of people with ID.

Contains fulltext : 183274.pdf (publisher's version ) (Closed access), Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn from it? Were there any changes in network characteristics, satisfaction and wishes in relation to networks, participation, loneliness, self-determination or self-esteem? Method: The evaluation of the intervention was explored from several perspectives (i.e. five clients, their six support workers and three trainers), using mixed methods (i.e. interviews and questionnaires). Results: The intervention was positively evaluated by both clients and support workers. Moreover, the analysis revealed the vulnerability of clients and their networks but also the benefits experienced from the intervention, such as decreased loneliness, enhanced social networks, increased awareness, competence, autonomy and increased participation. Conclusion: The indicative level of evidence for the effectiveness of this intervention justifies a larger series of case studies or a larger control trial study.

Item does not contain fulltext, Aims: Supportive social networks are crucial for facilitating social inclusion and better quality of life (QOL) of people with intellectual disabilities (ID). However, little is known about the functional characteristics of social networks of people with ID (e.g. provision of emotional or practical support). Therefore, this study explores these characteristics as well as the results of an intervention aimed at their enhancement. Methods: First, data were gathered from 33 young adults with mild to borderline ID using the Maastricht Social Network Analysis (MSNA) to map their social networks. Next, the results of a social network intervention in the lives of five participants were explored from several perspectives (i.e. participants with ID, their support workers and trainers), using mixed methods (i.e. interviews and questionnaires). Results: People with ID experience practical as well as emotional support coming mainly from professionals. A qualitative analysis of the intervention revealed the vulnerability of participants and their networks, but also the benefits experienced in the intervention, such as decreased loneliness. Conclusion: Functional characteristics of social networks of people with ID and the role of professionals are discussed with respect to enhancing quality of life and social inclusion.

10th European Congress on Violence in Clinical Psychiatry (Dublin, Ireland, 26 - 28 October 2017), Item does not contain fulltext

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Contains fulltext : 155052.pdf (publisher's version ) (Open Access), The aim of this study was to determine the similarities and differences in social network characteristics, satisfaction and wishes with respect to the social network between people with mild or borderline intellectual disabilities (ID), people with autism spectrum disorders (ASD) and a reference group. Data were gathered from 105 young adults living independently in the community. The social networks of people with ID and ASD are more restricted than those of the reference group. Compared with the other groups, people with ASD are less often satisfied with their networks. Each group has its own characteristics, issues and wishes with respect to their social network. Practical measures to enable professionals to adapt to these issues are discussed.

The aim of this study was to determine the similarities and differences in social network characteristics, satisfaction and wishes with respect to the social network between people with mild or borderline intellectual disabilities (ID), people with autism spectrum disorders (ASD) and a reference group. Data were gathered from 105 young adults living independently in the community. The social networks of people with ID and ASD are more restricted than those of the reference group. Compared with the other groups, people with ASD are less often satisfied with their networks. Each group has its own characteristics, issues and wishes with respect to their social network. Practical measures to enable professionals to adapt to these issues are discussed. Keywords: Intellectual disabilities, Autism, Social network, Satisfaction Wishes