The influence of therapy quality on outcomes from behavioural activation and guided self-help treatments for depression in adults with intellectual disabilities.

OBJECTIVES: We report the effect of quality of therapy delivery on outcomes in a randomized, controlled trial of behavioural activation (BA) and guided self-help (GSH) for depression in adults with intellectual disabilities. METHODS: A study specific measure of quality was used in a linear mixed effect model to determine the effects therapy and therapy quality on therapy outcome. RESULTS: There was a significant interaction between quality and treatment type, with lower quality therapy associated with better outcome for GSH but poorer outcome for BA, with little difference in outcomes at higher levels of therapy quality. CONCLUSIONS: Factors suggesting high quality in individualized BA may indicate problematic engagement for GSH. More research into processes in therapy for people with intellectual disabilities is required.

Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic.

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.

Including significant others in psychological therapy with people with intellectual disabilities: A national survey of the practice of UK psychologists.

BACKGROUND: Talking therapy for people with intellectual disabilities is often specifically adapted. One adaptation is the involvement of significant others in therapy, however, there is no systematic description of the use of this adaptation in routine clinical practice. METHOD: An online survey of UK psychologists regarding the inclusion of significant others in individual therapy with people with intellectual disabilities. Data were analysed using qualitative content analysis. RESULTS: Ninety-five psychologists who work with people with intellectual disabilities provided responses to questions regarding the decision to include significant others in therapy, factors that make including significant others more or less likely and how the role of significant others is explained to them. CONCLUSIONS: Psychologists consider a range of factors in deciding the involvement of significant others. We discuss implications for training of therapists working with people with intellectual disabilities, issues of consent and how the roles of significant others are understood.

Adapting psychological interventions for people with severe and profound intellectual disabilities: A behavioural activation exemplar.

BACKGROUND: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. METHOD: A behavioural activation intervention (BeatIt) for people with mild to moderate intellectual disabilities was adapted for people with severe to profound intellectual disabilities and depression. Key considerations include: (i) beginning with a more in-depth assessment process; (ii) including the person in session activities and developing a relationship with them; (iii) formulation and the use of film to document the link between activity and mood; and (iv) addressing barriers to change at an individual and inter-personal level and considering how the carer could support the person's engagement in activity. RESULTS: Successfully adapting BeatIt represents a first step towards gathering evidence about the effectiveness of behavioural activation for people with severe to profound intellectual disabilities.

Behavioural activation for depressive symptoms in adults with severe to profound intellectual disabilities: Modelling and initial feasibility study.

BACKGROUND: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. METHOD: Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. RESULTS: Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6-month follow-up. The BeatIt2 therapy was reported to be acceptable for participants. CONCLUSION: COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted.

Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities: The BEAMS-ID feasibility study.

BACKGROUND: The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities. METHOD: Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised feasibility study designed to test intervention feasibility and acceptability, outcome measures, and research processes. RESULTS: The intervention was judged as feasible and acceptable by autistic adults with intellectual disabilities, carers, and therapists. Minor intervention revisions were suggested. Carers completed 100% of outcome measures and the missing data rate was low. Complying with legislation governing the inclusion of participants who lack capacity to decide whether they wanted to take part in this study led to an average 5-week enrolment delay. CONCLUSION: The intervention and associated study processes were judged to be feasible and acceptable and should now be tested within a larger randomised trial.

Mechanisms of change in Behavioral Activation: Adapting depression treatment for autistic people.

Despite high rates of co-occurring depression, few studies have developed or adapted treatments targeting depressive symptoms for autistic adults. Behavioral activation is widely accepted as an empirically-supported approach for treating depression in other populations. Careful attention to the mechanisms targeted by behavioral activation is an essential step toward adapting behavioral activation protocols for use with autistic adults. We consider the mechanisms targeted by behavioral activation and provide a framework for research to explore the facilitators and barriers to the use of behavioral activation to treat depression in autistic adults. Drawing upon clinical experience and extant literature, the suggestions presented are aimed at highlighting considerations for clinicians wanting to use behavioral activation programs in their clinical practices with autistic adults and to promote the research needed to establish behavioral activation as an evidence-based practice for treating depression in adults on the autism spectrum.

Homeward bound: Exploring the motives of mothers who brought their offspring with intellectual disabilities home from residential settings during the COVID-19 pandemic.

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.

'Standing up for Myself' (STORM): Development and qualitative evaluation of a psychosocial group intervention designed to increase the capacity of people with intellectual disabilities to manage and resist stigma.

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.

Belonging and reciprocity amongst people with intellectual disabilities: A systematic methodological review.

BACKGROUND: Social inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities. METHOD: A systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed. RESULTS: Seventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed. CONCLUSIONS: More nuanced conceptualisations of belonging and reciprocity may be helpful in future research, to better capture the context and meaning of individual lives and relationships.

The experience of being a father of a son or daughter with an intellectual disability: Older fathers' perspectives.

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.

Benefits and cultural adaptations of psychosocial interventions for parents and their children with intellectual disabilities in low-and middle-income countries: A systematic review.

BACKGROUND: Evidence and awareness of the importance of culturally adapting psychosocial interventions is growing. The aim of this paper is to systematically review studies on cultural adaptations of psychosocial interventions for parents and their children with intellectual disabilities, in low- and middle-income countries. METHODS: Studies were identified through electronic databases and searching bibliographies. The quality and cultural adaptations of thirteen studies focusing on parental trainings were analysed using standardised tools and frameworks. RESULTS: Findings suggest interventions reduce the risk of depression and stress and increase coping strategies and positive perceptions of family functioning. Parenting skills training may improve parent-child interactions and child development. However, these benefits should be interpreted cautiously due to methodological shortcomings. Most studies described efforts to make appropriate cultural adaptations to the interventions, but these adaptations were not comprehensive. CONCLUSION: High-quality cultural adaptations are crucial to providing meaningful interventions in different parts of the world.

The experiences of therapists providing psychological treatment for adults with depression and intellectual disabilities as part of a randomised controlled trial.

BACKGROUND: Health professionals were trained to deliver adapted psychological interventions for depression to people with learning disabilities and depression alongside a supporter. Exploring the delivery of psychological interventions can help increase access to therapy. METHOD: Twenty-seven participants took part in six focus groups, and the data were subject to a Framework Analysis. RESULTS: The structure and focus of the manualised therapies, and the use of specific techniques were perceived as key to service-user engagement. Supporters' involvement was valued by therapists if they had a good relationship and regular contact with the individual they supported. Regular clinical supervision was regarded as vital in understanding their role, assessing progress and delivering the interventions. CONCLUSIONS: The findings highlight that health professionals can embrace a focussed therapeutic role and increase access to psychological therapies for people with intellectual disabilities.

Family network typologies of adults with intellectual disability: Associations with psychological outcomes.

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.

A supporting role: Mothers' perceptions of their child's developing awareness of Down syndrome.

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.

Comparing everyday autonomy and adult identity in young people with and without intellectual disabilities.

AIM: This study was undertaken to investigate how young people with and without mild intellectual disabilities experience and perceive their own behavioural autonomy. METHOD: Fifty-six young people with mild intellectual disabilities and 49 young people without disabilities aged 16-19 participated in a novel picture card sorting task to investigate their participation in a range of activities, and the obstacles preventing them from doing so. RESULTS: School pupils with intellectual disabilities engaged in significantly fewer activities than their typically developing peers and were more likely to state not to be allowed to. In contrast, the college students with and without disabilities were equally as likely to undertake each activity, and those with intellectual disabilities were more likely to express lack of interest in doing so. CONCLUSIONS: The move from school to college may represent an opportunity for young people with intellectual disabilities to "catch-up" with their typically developing peers.

Exploring the ability of individuals with an intellectual disability to generate and use a compassionate image.

BACKGROUND: There is a growing interest in adapting third-wave therapies such as mindfulness for people who have intellectual disabilities. This study explored their ability to generate and use a compassionate image. METHOD: Nineteen people with an intellectual disability and twenty people without were recruited from further education colleges. A compassion-focused therapy technique was adapted to help participants generate their own compassionate image, and examine whether they could use their images in potentially distressing situations. RESULTS: With appropriate support, participants with intellectual disabilities were just as able as those without disabilities to generate their own compassionate image. They were also able to generate self-soothing statements. CONCLUSIONS: The participants' success in generating compassionate images suggests this approach may have clinical utility with people who have intellectual disabilities. The next question is whether this client group can use this technique to deal with personally salient stressors.

Health knowledge and the impact of social exclusion on young people with intellectual disabilities.

BACKGROUND: Cognitive impairments are often assumed to underlie individuals' difficulties with understanding health issues. However, it was predicted that socially excluded individuals would have greater difficulty gaining understanding of sensitive topics related to sexuality than other public health messages, such as alcohol use. METHOD: The health knowledge of 31 typically developing young people, 29 young people with mild intellectual disabilities (ID) and 23 participants with physical disabilities but no cognitive impairments was compared. RESULTS: The largest group differences were related to more private and personal health issues, such as pregnancy/contraception. Both groups of young people with disabilities had less knowledge of pregnancy/contraception than their non-disabled peers. Thus, deficits in this sexual knowledge did not just appear to be the result of cognitive deficits. CONCLUSIONS: The findings suggest social exclusion may contribute to young people with intellectual disabilities' poorer knowledge of pregnancy and contraception. The results have implications for interventions.

Transitioning to adulthood with a mild intellectual disability-Young people's experiences, expectations and aspirations.

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.

Living with support: Experiences of people with mild 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: 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.