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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.

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.

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.

Background Moving out of the family home is a key transition for people with intellectual disabilities and their families. Yet there has been little research about parents’ experiences of planning the move of their young adult offspring to residential settings offering 24-hour support. Method Interviews were conducted with eleven parents whose offspring moved to residential settings within the past 5 years (five fathers; six mothers). They consisted of structured questions about planning their offsprings’ moves and semi-structured questions about parents’ experiences. Results Content analysis of the structured questions revealed reasons parents began thinking about the moves and routes to finding information. The thematic analysis highlighted the emotional challenges parents faced. Conclusions The findings highlight the need to address this neglected topic and ensure that practical and emotional support is put in place to plan positive futures, rather than relying on families to use their own initiative or waiting until a crisis occurs.

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 : 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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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.

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(S): 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. RESULT(S): 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. CONCLUSION(S): 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.Copyright © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

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.

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(S): The FNM is designed to explore how individuals define their family contexts, and more specifically how they perceive existing supportive relationships in these contexts. RESULT(S): 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. CONCLUSION(S): 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.Copyright 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

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Contains fulltext : 122472.pdf (publisher's version ) (Closed access), Frequency and type of incontinence and variables associated with incontinence were assessed in individuals with Angelman syndrome (AS; n=71) and in a matched control group (n=69) consisting of individuals with non-specific intellectual disability (ID). A Dutch version of the "Parental Questionnaire: Enuresis/Urinary Incontinence" (Beetz, von Gontard, & Lettgen, 1994) was administered and information on primary caretakers' perspectives regarding each individual's incontinence was gathered. Results show that diurnal incontinence and fecal incontinence during the day more frequently occurred in the control group than in the AS group. In both groups, nocturnal enuresis was the most common form of incontinence. More incontinence was seen in individuals with AS who were younger, had a lower level of adaptive functioning and/or had epilepsy. Individuals with AS were able to stay dry for longer periods of time than the controls and often showed both in-toilet urination and urinary accidents during the day, whereas accidents and correct voids during the day were more set apart in the control group. Also, persons with AS had a lower micturition frequency implying possible voiding postponement. Both groups showed high rates of LUTS (lower urinary tract symptoms) possibly indicative of functional bladder disorders such as voiding postponement, dysfunctional voiding, or even an underactive bladder. In general, most primary caretakers reported severe intellectual disability as the main cause for urinary incontinence. Based on these results incontinence does not appear to be part of the behavioral phenotype of Angelman syndrome. Therefore, pediatric or urologic diagnostics and treatment are recommended for all persons with incontinence and intellectual disability. Further implications for practice and research are given.

Item does not contain fulltext, Intervention studies involving the use of sensory integration therapy (SIT) were systematically identified and analyzed. Twenty-five studies were described in terms of: (a) participant characteristics, (b) assessments used to identify sensory deficits or behavioral functions, (c) dependent variables, (d) intervention procedures, (e) intervention outcomes, and (f) certainty of evidence. Overall, 3 of the reviewed studies suggested that SIT was effective, 8 studies found mixed results, and 14 studies reported no benefits related to SIT. Many of the reviewed studies, including the 3 studies reporting positive results, had serious methodological flaws. Therefore, the current evidence-base does not support the use of SIT in the education and treatment of children with autism spectrum disorders (ASD). Practitioners and agencies serving children with ASD that endeavor, or are mandated, to use research-based, or scientifically-based, interventions should not use SIT outside of carefully controlled research.

Contains fulltext : 102627.pdf (publisher's version ) (Open Access), Frequency and type of incontinence and its association with other variables were assessed in females with Rett Syndrome (RS) (n = 63), using an adapted Dutch version of the ‘Parental Questionnaire: Enuresis/Urinary Incontinence’ (Beetz et al. 1994). Also, incontinence in RS was compared to a control group consisting of females with non-specific (mixed) intellectual disability (n = 26). Urinary incontinence (UI) (i.e., daytime incontinence and nocturnal enuresis) and faecal incontinence (FI) were found to be common problems among females with RS that occur in a high frequency of days/nights. UI and FI were mostly primary in nature and occur independent of participants’ age and level of adaptive functioning. Solid stool, lower urinary tract symptoms and urinary tract infections (UTI’s) were also common problems in females with RS. No differences in incontinence between RS and the control group were found, except for solid stool that was more common in RS than in the control group. It is concluded that incontinence is not part of the behavioural phenotype of RS, but that there is an increased risk for solid stool in females with RS.

Item does not contain fulltext, We conducted a systematic analysis of studies that involved the treatment of rumination and operant vomiting in individuals with developmental disabilities. A total of 21 studies involving a combined 32 participants were identified and analyzed in terms of (a) participant characteristics, (b) dependent variables, (c) intervention procedures, (d) functional assessment procedures and results, (e) intervention outcomes, and (f) certainty of evidence. In comparison to previous reviews on rumination and operant vomiting, this review identified fewer studies involving punishment-based interventions and an increase in function-based reinforcement interventions. Preliminary guidelines for practitioners faced with assessing and treating these behaviors are offered and directions for future research are discussed.