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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. Method: Development and piloting of a 5‐session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre‐existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2–4 months after the intervention assessed perceived impact. Results: Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self‐efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre‐existing self‐advocacy skills was noted. Conclusions: This early‐stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention. [ABSTRACT FROM AUTHOR]

Background. The COVID-19 pandemic is expected to have a substantial impact on people with an intellectual disability. The goal of the current study was to explore the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period in the Netherlands. Method. A descriptive qualitative methodology was conducted, using semi-structured individual interviews with six people with a mild intellectual disability. Data were analysed thematically. Results. Three overarching themes were found: (i) Missing social contact and having people close; (ii) Being housebound has changed my daily life; and (iii) Hard to understand the preventive measures. Conclusions. Important insights into the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period were gained. These insights are valuable with respect to a potential second COVID-19 wave or a future infection-outbreak. [ABSTRACT FROM AUTHOR]

Background: At the start of the COVID‐19 pandemic, some parents in the Netherlands decided to bring their offspring with intellectual disabilities, who normally live in residential care, home. The present study explored why the mothers decided to bring their offspring home. Method: Interviews were carried out with seven mothers of adults with intellectual disabilities. An interpretative phenomenological approach was used to establish in‐depth accounts of the mothers' experiences. Results: The analysis yielded three overarching themes: (a) Families are indispensable; (b) the complex role of being a mother of a child with intellectual disabilities; and (c) Who is looking out for our offspring during COVID‐19? Conclusions: The mothers experienced a strong sense of wanting to do what was best for their offspring with intellectual disabilities during COVID‐19. The study provides insight into why mothers remain involved in the care for their offspring and the complexity of navigating lifelong care responsibilities. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to present data about the experiences of adults with learning disabilities during the COVID-19 pandemic across the UK. Design/methodology/approach: Interviews were conducted with 609 adults with learning disabilities. Family carers and support staff of another 351 adults with learning disabilities completed a proxy online survey. The data were collected between December 2020 and February 2021 and concerned both worries/negatives and anything positive that had happened because of the COVID-19 pandemic. Findings: Social isolation was the most commonly reported worry/negative for adults with learning disabilities, with other frequently reported worries/negatives including: changes to/loss of routine; loss of support/services; and decreased health/well-being/fitness. A large proportion of participants indicated that nothing positive had happened because of COVID-19, but some positives were reported, including: digital inclusion; more time spent with important people; improved health/well-being/fitness; and, a slower pace of life. Practical implications: Future pandemic planning must ensure that adults with learning disabilities are supported to maintain social contact with the people who matter to them and to support their health and well-being (including maintaining access to essential services and activities). Some adults with learning disabilities may benefit from additional support to improve their digital confidence and access. This may in turn enable them to maintain contact with family, friends and support services/activities. Originality/value: This is the largest study about the experiences of adults with learning disabilities during the COVID-19 pandemic in the UK. The authors primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities throughout the study. [ABSTRACT FROM AUTHOR]

Background: As life expectancy for people with an intellectual disability increases, there is a growing cohort of older father carers. This study aimed to gain a more in‐depth understanding of older father carers' experiences of parenting. Methods: Semi‐structured interviews were conducted with 7 older fathers (M = 63.9 years) and analysed using constructivist grounded theory. Results: Three conceptual categories were identified. "Wearing different hats: how fathers' sense of identity had altered over the years. "Family comes first": importance placed on the family unit. "Getting on in years": the challenges faced by ageing fathers parenting their son/daughter. Conclusions: Fathers re‐evaluated their priorities and found a new identity in their parenting role, although they continued to see themselves as secondary carers. Fathers worried about the future as their health declined but drew strength from the benefits they had derived and the challenges that they had overcome to do their best for their son/daughter and their family. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective. Methods: An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social stigma. Interviews were carried out with nine mothers of young people with Down syndrome aged 9–16 years old. Results: All mothers were sensitive to the stigmatized status of Down syndrome and were at pains to protect their child from becoming aware of it. Some mothers had talked about Down syndrome with their child. Other mothers carefully monitored their child for signs that they were ready to talk about it. On the surface, all mothers believed that their child had a limited insight into Down syndrome and stigma but detailed discussion revealed more complex insights. Conclusion: Mothers expressed uncertainty and anxiety about when and how to talk to their child about Down syndrome. [ABSTRACT FROM AUTHOR]

Background: No studies have explored the acceptability of Behavioural Activation and Guided Self‐Help interventions for depression with people who have intellectual disabilities. Method: Twenty‐five participants were purposively sampled from participants taking part in a trial comparing Behavioural Activation with a Guided Self‐Help intervention. A framework analysis was used to analyse interviews covering participants' expectations and views of therapy. Results: Participants were largely positive about both interventions. However, they identified specific aspects of each intervention which they had found helpful. All participants valued the therapeutic relationship. The participants also had a number of criticisms and suggestions for improving the therapies. A common concern was the time‐limited nature of the interventions and a wish for longer‐term help. Overall, both sets of participants felt the interventions had relevance for their wider lives. Conclusions: The participants reported having positive engagement with the therapies but expressed a wish for longer‐term supportive relationships. [ABSTRACT FROM AUTHOR]

Aim: Very little attention has been paid to the views and experiences of young people with mild intellectual disabilities on the broad topics of adulthood and adult identity. The following study was undertaken to explore how young adults with mild intellectual disabilities conceptualize, relate to, and experience the process of transition. Method: Eight young adults with mild to borderline intellectual disabilities participated in semi‐structured interviews. Results were analysed using interpretive thematic analysis. Results: Two umbrella themes were identified: "On a developmental pathway" and "Negotiations in the environment". Conclusions: The participants concerns were surprisingly similar to those commonly expressed by young adults without disabilities. Self‐perceived adult identity appeared to be affected by the participants' personal definitions of adulthood, as well as by social comparisons with both peers and adults. Finally, while concerns were expressed about their capacity to cope with responsibility, most felt optimistic about adopting full adult status in the future. [ABSTRACT FROM AUTHOR]

Individuals with severe or profound intellectual disabilities may be at a greater risk of developing mental health problems. Despite this, evidence suggests individuals can face difficulties in getting mental health support, and little is known about effective psychological therapies for this population. Hence, this study explored mothers' experiences of seeking mental health support for their offspring. Semi-structured interviews were conducted with six mothers of adults with severe or profound intellectual disabilities, who had sought mental health support for their offspring. Interviews were audio-recorded and analysed using Interpretative Phenomenological Analysis. The three main themes were 'A struggle to understand, Challenges to getting mental health support, and A mother's approach to adapting therapy.' Mothers found it difficult to recognise signs of emotional difficulties in their offspring. However, they thought that their offspring faced discrimination when accessing services, and that professionals often lacked the knowledge and skills to work with people with severe impairments. The mothers also stressed the importance of the therapeutic relationship and the need to involve carers in therapy. This study highlights the need for more appropriate mental health support for individuals with severe and profound intellectual disabilities. The findings also suggest further research is needed about adapting psychological therapies for this population. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Clinicians recommend including carers or others in a supporting role in the therapy as an important adaptation of psychological therapies for people with intellectual disabilities. This nested qualitative study from a larger trial explored supporters' experiences of supporting people with intellectual disabilities receiving behavioural activation or guided self‐help therapies for depression. Method: Twenty‐one purposively sampled supporters were interviewed. The semi‐structured interviews were subject to framework analysis, covering expectations of therapy, views of therapy sessions, relationships with therapist and participant, and perceived changes. Results: Supporters were positive about both therapies and reported both therapy‐specific and nonspecific therapeutic factors that had significant positive impacts on people's lives. Most supporters reported their involvement contributed to the interventions' effectiveness, and helped establish closer relationships to the people they were supporting. Conclusions: The presence of supporters within psychological therapies for people with intellectual disabilities can be an effective adaptation to therapies for this population. [ABSTRACT FROM AUTHOR]

Objectives: The sexuality and sexual development of individuals with autism-spectrum disorder (ASD) and an accompanying intellectual disability is a neglected area, despite the fact that this group have the same sexual desires as their typically developing peers. Due to the socially marginalized position these individuals are often placed in, parents play a key role in supporting them with their developing sexuality. It is therefore important to understand parents’ experiences and perspectives about their offspring’s socio-sexual needs. Methods: Five mothers of sons with ASD and a moderate to severe intellectual disability aged 16-24 were recruited from voluntary organizations and interviewed. Interviews were audio recorded then transcribed and analysed using interpretative phenomenological analysis to draw out key themes from their narratives. Results: The mothers’ narratives were fraught with tensions. While they acknowledged the importance of their sons’ developing sexuality they also thought it brought many challenges. They wanted to provide their sons with appropriate sex education but were concerned that exposure to explicit materials could encourage inappropriate sexual behavior. They wanted support and information to help improve their confidence in supporting their sons’ socio-sexual needs. The mothers also expressed concerns about who would love their sons when they grew up. Conclusion: This study highlights the need for services to provide sensitive and timely help for mothers who are supporting their sons in relation to their sexual development. [ABSTRACT FROM AUTHOR]

Background: The prevalence of obesity is higher in those with intellectual disabilities than the general population. The aim of the study was to understand the determinants of physical activity and dietary patterns in this population during their final year of school. Method: Qualitative data were generated from 10 interviews with adolescents with mild–moderate intellectual disabilities. Data were analysed using deductive thematic analysis, employing Self‐Determination Theory as a theoretical framework. Results: Adolescents’ environment and social interactions play a pivotal role in influencing physical activity and dietary patterns. Three themes emerged from the analysis: situatedness, motivation and wider environmental influences. Conclusions: School structure, high self‐efficacy and social connectedness facilitate increased physical activity and healthier diet in adolescents with intellectual disabilities. Home life, low self‐efficacy and a lack of social connectedness can serve as a barrier to PA and a healthy diet. [ABSTRACT FROM AUTHOR]

This study explored five young women’s experiences of living with Mayer–Rokitansky–Küster–Hauser to offer a unique insight into the social challenges of Mayer–Rokitansky–Küster–Hauser in the transition to adulthood. Non-directive semi-structured interviews took place within the National Health Service settings, and transcripts were analysed using interpretative phenomenological analysis. Four inter-related themes were identified: hindering independence, a sensitivity to difference, managing intimacy and managing threat to identity. The women managed their presentation to others in order to minimise the impact of their diagnosis. Recommendations for further research and implications for services are noted. [ABSTRACT FROM AUTHOR]

Purpose - The purpose of this paper is to investigate how service managers perceive their service prior to, and following the delivery of a cognitive-behavioural therapy (CBT) anger management group for individuals with an intellectual disability. Design/methodology/approach - Telephone interviews were conducted with seven service managers, before and after a CBT group intervention. The interviews were recorded, transcribed and analysed using thematic analysis to identify common and/or contrasting themes. Findings - Before the intervention took place managers observed a lack of consistency in how their staff dealt with challenging incidents and the serious consequences these incidents had for service users as well as staff. They spoke about the importance of multi-disciplinary working and good quality staff selection, support and training. After the group intervention managers commented on a positive "spilling-out effect" whereby the whole organisation was influenced by the intervention, a greater willingness on the part of service users to talk about their problems, and an increased confidence in the staff members who had co-facilitated the group work. Research limitations/implications - The implications of the themes raised are discussed and recommendations for further research are suggested. Originality/value - This research provides a unique contribution of managers' views and insight into how hosting a CBT group intervention impacted on their wider services. [ABSTRACT FROM AUTHOR]

Background The role of support workers and other professionals in the psychotherapeutic process has been commented upon but not as yet been systematically investigated. Method To explore their views and expectations of cognitive behaviour therapy ( CBT) for adults with intellectual disabilities, eleven paid support workers and professionals were recruited and interviewed before the CBT sessions commenced for their service users and nine took part in the second interview that took place after nine sessions. Results Thematic Analysis of the interview transcripts indicates that staff members do not perceive CBT as a long-term solution for psychological problems have little knowledge of CBT and do not feel included in the process. Nevertheless, after nine sessions, most participants reported improved psychological well-being for their service users and expressed a wish for longer-term involvement of the therapist. Conclusions The results suggest that for CBT to be effective in the longer term, the therapist is required to consider a wider systemic approach including staff training and supervision, staff and management consultancy and creating a delicate balance between confidentiality and sharing the psychological formulation with 'significant others' to ensure maintenance and generalisation of improved psychological well-being. [ABSTRACT FROM AUTHOR]

Aim To explore the experience of 'lay therapists' of a group-based cognitive behaviour therapy ( CBT) anger management intervention. Background Staff employed in daytime opportunity services for adults with intellectual disabilities took on the role of 'lay therapist' to facilitate CBT groups. Methods They were trained and supervised by clinical psychologists and interviewed 2-6 weeks after the last group session. Their experiences were explored by means of a qualitative approach, interpretative phenomenological analysis ( IPA). Results Several key themes emerged from the interview data such as 'hopes and fears', 'having a framework', 'making it work', 'observing progress', 'ingredients of success', 'the therapist role' and 'taking the group forward'. Conclusions These themes indicate that participants' experiences had been perceived as positive for themselves, the service users as well as the relevant organization although initially the therapist role had appeared daunting. [ABSTRACT FROM AUTHOR]

This paper reports findings from a study funded by the Foundation for People with Learning Disabilities which aimed to explore experiences of anxiety and depression among 17 young people with learning disabilities in Scotland. A series of unstructured interviews were conducted with the young people while one semi-structured interview took place with their families and/or with relevant professionals. The young people talked about their distress in various ways, including medical terms, bodily sensations, feelings and emotions, behaviours, and specific fears. Those who could identify the cause(s) of their distress referred to stressful life events, troublesome medical conditions, difficulties negotiating the transition to adulthood, and social isolation. The young people said relatively little about what helped reduce their distress: a few had good formal or informal support while others had tried to develop their own coping strategies. The findings are discussed in relation to social crisis theory. Policy and practice implications are highlighted. [ABSTRACT FROM AUTHOR]

Objectives To carry out a preliminary exploration and measurement of therapy expectancy in adults with intellectual disabilities through the development and psychometric evaluation of the therapy expectation measure (TEAM). Design The initial scale development phase combined top-down theory-driven and bottom-up data-driven processes to identify TEAM items and format. The subsequent scale evaluation phase piloted the TEAM and used correlational analyses to evaluate reliability and validity. Method Six adults with intellectual disabilities took part in semi-structured interviews about therapy expectancy and motivation to identify TEAM items. A further 22 participants piloted the measure for initial psychometric evaluation. Results Preliminary psychometric evaluation confirmed that the TEAM has acceptable test-retest reliability and internal consistency. Assessment of construct validity found a strong and positive relationship with a measure of general self-efficacy. Client expectations of therapy were largely positive and congruent with therapy as a goal-oriented process in which they will be an active participant. However, a number of individuals were unclear about the reason for referral and felt a low level of involvement in the process. Client and carer perceptions of referral understanding were significantly different. Conclusions The TEAM may help clinicians to identify potential barriers to engagement in therapy and find ways of enhancing the therapeutic experience of adults with an intellectual disability. Further psychometric evaluation of the TEAMM with larger samples is required to confirm the factorial structure of the scale and enhance its clinical utility. [ABSTRACT FROM AUTHOR]

Background This study compares how people with and without intellectual disabilities talk about events, beliefs and emotions in dialogues about real-life, emotive events and in a structured task assessing understanding of cognitive mediation. Materials and Methods A cognitive-emotive interview was used to assist 19 adults with intellectual disabilities and 19 adults without disabilities in generating an account of an emotive, interpersonal event. Participants also completed a cognitive mediation task and an assessment of intellectual and verbal ability. Results Between-group analyses indicated that participants with intellectual disabilities scored significantly lower than those without disabilities on the cognitive-emotive interview and the cognitive mediation task. Participants with intellectual disabilities generated fewer beliefs within their dialogues and were less likely to provide alternative perspectives on events. Within-group comparisons showed no significant association between the ability to talk about events, beliefs and emotions within a dialogue and performance on a cognitive mediation task, or with Full Scale or Verbal IQ scores. Conclusions Participants with intellectual disabilities had more difficulties than those without disabilities in talking about events, beliefs and emotions. Within a therapeutic context, they are likely to require assistance to reflect on events and consider alternative interpretations, which take into account individual and environmental factors. Future therapeutic developments may benefit from placing greater emphasis on emotional understanding and the intuitive links that people make between events and emotions. [ABSTRACT FROM AUTHOR]

Objectives. Transition to adulthood can be a challenging time for all young people. However, this period of change is likely to be more difficult for those with mild intellectual disabilities (IDs) because they are often more socially marginalized, remain more dependent upon their family, and have fewer options for future careers than their typically developing peers. Therefore, this study examines the content and salience of worries experienced by young people with mild ID during transition to adulthood, and whether the above disadvantages are associated with the level of reported anxiety and their sense of self-efficacy. Design and Methods. Fifty-two participants (17-20 years) took part; 26 with mild ID and 26 typically developing adults. Of interest were potential differences between groups in (1) worries described; (2) salience of worries; and (3) associations between self-efficacy, anxiety, and worry within groups. Participants completed a 'worry' interview, the General Self Efficacy Scale-12 and the Glasgow Anxiety Scale-LD. Results. It was found that the ID group's most salient worries (being bullied, losing someone they are dependent upon, failing in life, followed by making and keeping friends) were largely different from their non-disabled peers (getting a job, followed by not having enough surplus money, failing, and having to make decisions about their future choices) at this stage of transition. Not only was there a difference in the nature of worries expressed, but the intellectually disabled group also reported ruminating significantly more about their worries and being more distressed by them. Conclusion. Obtaining insight into worries at transition may help to target efforts at increasing these young people's resilience. Clinical applications of the findings are discussed. [ABSTRACT FROM AUTHOR]