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Tactile defensiveness in autistic individuals is the least investigated sensory modality. The current multi-component, explorative study aimed to understand the experiences of ten autistic adults regarding tactile defensiveness and fabrics, using semi-structured, one-to-one interviews. Participants were asked to discuss the effects of seven provided samples of fabrics and were also asked to bring their 'favourite' fabric (s) and express their thoughts about their choices. Using Interpretative Phenomenological Analysis and Content Analysis, the findings showed that some fabrics can impact individuals' reported wellbeing. Participants' experiences with several stimuli appeared to have helped them implement coping strategies. By understanding tactile defensiveness, society could move towards increasing autism-friendly approaches with appropriate fabrics. Recommendations for future research, policy and practice are also discussed.

Tactile defensiveness in autistic individuals is the least investigated sensory modality. The current multi-component, explorative study aimed to understand the experiences of ten autistic adults regarding tactile defensiveness and fabrics, using semi-structured, one-to-one interviews. Participants were asked to discuss the effects of seven provided samples of fabrics and were also asked to bring their 'favourite' fabric (s) and express their thoughts about their choices. Using Interpretative Phenomenological Analysis and Content Analysis, the findings showed that some fabrics can impact individuals' reported wellbeing. Participants' experiences with several stimuli appeared to have helped them implement coping strategies. By understanding tactile defensiveness, society could move towards increasing autism-friendly approaches with appropriate fabrics. Recommendations for future research, policy and practice are also discussed., Author(s): Chrysovalanto Kyriacou [sup.1] , Rachel Forrester-Jones [sup.2] , Paraskevi Triantafyllopoulou [sup.1] Author Affiliations: (1) grid.9759.2, 0000 0001 2232 2818, Tizard Centre, School of Social Policy, Sociology and Social Research, [...]

Background: Adults with intellectual disabilities have historically been hindered, rather than supported, in their desire to form loving relationships. This paper sought to explore with them what kinds of support they wanted in the 21st Century. Method: Semi-structured in-depth interviews were conducted with 40 adults with intellectual disabilities in the United Kingdom. Results: Participants placed a high value on having a partner and being supported to maintain and develop a loving relationship. The factors which constrained them in achieving this included a lack of social opportunities, barriers created by social care services and limits on them exercising autonomy. Facilitating factors included access to specialist dating agencies, strong family and staff support and opportunities to learn about relationships. Conclusions: The importance of a loving relationship as a source of pleasure and meaning in the lives of adults with intellectual disabilities who are often disadvantaged in many other spheres of life is emphasised.

Background: Despite the importance of social networks for health and well-being, relatively little is known about the ways in which adults with intellectual disabilities in the U.K. experience their social networks. Method: A systematic review was completed to identify research focused on the social networks of adults with intellectual disabilities. Studies published from 1990 to 2019 were identified. Studies were thematically analysed. Results: Quantitative, qualitative and mixed methods studies were analysed to identify key factors influencing social networks. Experiences of people with intellectual disabilities identified themes of identity, powerlessness, inclusion, family and support. These themes are discussed with reference to theories of stigma and normalisation. Conclusions: Stigma and normalisation can be used to better understand the needs, desires and dreams of people with intellectual disabilities for ordinary relationships, from which they are regularly excluded. Implications for policy and practice are discussed in relation to building and repairing often spoiled identities.

Background: People with intellectual and developmental disabilities face challenges in developing and maintaining intimate relationships, frequently requiring support from staff. Method: Focus groups were conducted with 26 social care staff members to explore the support they provided to people with intellectual and developmental disabilities to find a potential partner and/or develop an existing relationship. Results: Staff reported that many people with intellectual and developmental disabilities wanted to be in a relationship and that they did what they could to facilitate this, sometimes providing substantial support. Some staff had to address complex issues relating to sexuality, often with no training and with a lack of clear organisational policies. Conclusion: The need for external inspection and regulatory bodies to prioritise relationship support is emphasised.

Background: Population-based data are presented on the nature of dying in intellectual disability services. Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. Results: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. Conclusion: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

Background: Social media is a growing phenomenon, yet people with intellectual disability (ID) may not experience comparable access to this communication technology. Adolescents with ID may benefit from e-inclusion, especially as individuals with ID are at risk of having smaller social networks. Materials and Methods: The Social Network Guide was adapted to measure social media usage and used to examine the interpersonal relationships of adolescents with and without ID. Results: Adolescents with ID held smaller social networks with less developed informal relationships. However, friendship quality was comparable or superior to typically developing peers. Adolescents with ID interacted with a smaller percentage of contacts using social media. Social media use was predictive of the number of reported friendships and did not significantly predict critical comments. Conclusions: Findings suggest that adolescents with ID have comparable access to social media but use these sites to interact with a smaller number of social contacts.

Background: Research into hospital treatment and care of children with intellectual disabilities is extremely limited, but available literature points to difficulties. Some children have a co-occurring condition alongside an intellectual disability which requires ongoing treatment, such as a cleft lip/palate. To date, their experiences remain untapped. Method: Semi-structured interviews with 23 participants; five children with intellectual disabilities (aged 11-16), their parents (n = 9) and nine healthcare professionals working in cleft care. Thematic analysis determined patterns across the data. Results: Three key themes were found: struggles (stress and distress, and power imbalance), tensions (perceived levels of choice and control in decision making, lack of training around intellectual disability assumptions and jargon) and good practice (appropriate communication and information, and tailored treatment). Conclusion: Good practice was evident, but was ad hoc. Individualized treatment and communication based upon children's needs are required as is further investigation into general anaesthetic induction for children with intellectual disabilities.

Background: People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. Materials and Methods: This study used semi-structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. Results: Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. Conclusion: The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims.

Background: A faith-based (pseudonym, Adam's House -- AH) and a non-faith-based care service (pseudonym, Greenleaves -- GL) were explored to find out if and how spiritual support was provided for people with intellectual and developmental disabilities (IDDs). Method: Six months were spent volunteering within each service and a mixed-methods approach was utilised including applied and ethnographic methods to explore and describe if and how spirituality was embedded within the two services. Results: Themes found included community of value; homely functional care; and barriers to spiritual care. GL staff tended to provide what we termed "religious spiritual care" while AH staff administered both "religious" and "non-religious" spiritual-based support. This difference may be related to the type of training found only at AH which included spiritual dimensions. Conclusion: Services could benefit from acknowledging the importance and significance of spiritual care training and education for effective and varied spiritual care for people with IDD "who desire such support."

Background: Little research exists comparing the social networks of people with intellectual disability (ID) from South Asian and White backgrounds. This UK study reports on the barriers that South Asian people with intellectual disability face in relation to social inclusion compared to their White counterparts. Materials and methods: A mixed-methods research design was adopted to explore the social lives of 27 men (15 White; 12 South Asian) and 20 women (10 White; 10 South Asian with intellectual disability). Descriptive and parametric tests were used to analyse the quantitative data. Results: The average network size of the whole group was 32 members. South Asian participants had more family members whilst White participants had more service users and staff in their networks; 96% network members from White intellectual disability group were also of White background, whilst the South Asian group had mixed ethnic network members. Conclusions: Social networks of individuals with intellectual disability in this study were found to be larger overall in comparison with previous studies, whilst network structure differed between the White and South Asian population. These differences have implications relating to future service planning and appropriateness of available facilities.

Background: Researchers contend that religious and spiritual communities may provide a conduit to friendship for people with IDD. This research explored the interface between social networks and spirituality for individuals with IDD living in either a faith or non-faith based service. Method: A mixed-methods approach was used including semi-structured interviews, the Social Network Guide and the Spiritual Belief Inventory-15R with individuals with IDD (or staff members who provided their opinions of what individuals who lacked capacity to consent would say if they had capacity). These findings were corroborated with extensive field notes generated from participant observation. Results: The faith-based group had a higher network size (m = 78) compared to the non-faith based group (m = 44). Those with larger social networks also reported higher SBI-15R scores. Conclusion: Findings highlight the possible role of social, religious and spiritual activities for expanding individuals' social networks.

Background: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided. Method: Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardized questionnaires and costs analysis was utilized. Results: We found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organization. Conclusion: Whilst the philosophical arguments around "specialist" care persist, this service fills a gap in intellectual disability care provision.

Background: This small, qualitative study sought to develop a richer understanding of the way in which the deprivation of liberty safeguards (DOLS) were being used for people with intellectual disabilities. It is important to note that this study was completed prior to the changes resulting from the P "v" Cheshire West and Chester Council judgement. Method: Six DOLS cases were identified and two people involved in each case were interviewed (care home managers, key workers, social workers, specialist nurses or psychologists), using semi-structured interviews. The data were analysed using grounded theory techniques. Results: The interviewees described DOLS as providing a framework leading to positive outcomes for the people they supported, in some cases avoiding inpatient stays. However, they had a number of concerns including lack of knowledge and training, potential under use of DOLS and disappointment with case law. Conclusion: Overall, these findings are encouraging in regard to the specific individuals for whom DOLS applications were made; however, they also highlight the need for a stronger agenda regarding wider dissemination of information, and training about DOLS, as well as some reform.

Background: There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self-esteem, stigma and social interactions. Materials and Methods: Fifteen adults with intellectual disabilities were interviewed using semi-structured, open-ended questions regarding disability, social interactions and self-esteem. Interviews were analysed independently by two researchers using interpretive phenomenological analysis. Results: Three major themes emerged during analysis, exploring pressure on participants to behave in a socially normative way, tendency to produce personal definitions of disability and consistently limited knowledge of and discomfort around common disability terminology. Conclusions: Participants' clearly experienced feelings of difference, despite a lack of articulation. Limited understanding of both terminology and conceptualization of disability status could negatively impact self-esteem, person-centred actions and political movement.

Research has consistently shown that young people with Asperger's Syndrome (AS) are likely to experience increased anxiety during new social situations; yet, studies have been regionally and culturally bound. The aim of this study was to explore how higher education students with AS experienced attending university in two European countries: the UK and Spain. The objective was to find out if experiences differed between the two countries in relation to contrasting support arrangements and what kinds of interventions might aid students' social well-being at university, an important learning outcome for future practice. This small-scale comparative exploratory study incorporated life-history interviews with nine students with AS. The interviews were transcribed verbatim and subjected to Interpretative Phenomenological Analysis. Four superordinate themes significant to both groups of students in Spain and the UK emerged from the data: social relationships, "special interests," "environment" and "support mechanisms." Students with AS need and want clear, unambiguous and structured information from academics; support to get to know others in "small special interest groups"; more designated "quiet zones" across campuses; and above all, a move away from ableist notions of AS. To our knowledge, this is the only Spanish-UK comparative study of university students with AS.

Whilst the value of supported employment for people with learning disabilities is well substantiated, the experiences of supporting individuals into work are less well documented. The Sustainable Hub of Innovative Employment for people with Complex needs aims to support people with learning disabilities and complex needs to find paid employment. Sixteen semi-structured interviews administered to staff members of Sustainable Hub of Innovative Employment for people with Complex needs revealed seven core themes concerning their experiences of helping people with complex needs into work. This included the practical and emotional reality of facilitating supported employment and a reflection on those factors that influenced success. This article discusses how findings relate more broadly to work in this area, and the vital roles frontline staff play in making employment happen for people with learning disabilities.

Background: The topic of funerals within the life cycle approach to care in the UK remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals. Methods: A semi-structured questionnaire was administered to 40 service managers, and five focus groups for 26 people with and without intellectual disabilities were facilitated. Questionnaires were subjected to thematic content analysis; focus group data were analysed using a grounded theory approach. Results: Managers demonstrated confusion about organizing the funerals of people with intellectual disabilities. Few differences existed between the views of people with and without intellectual disabilities in relation to funerals and a number of core themes were identified including the lack of opportunities to attend funerals. Conclusions: More thought and practical interventions are needed to support vulnerable people to participate in the funerals of people they know.

Abstract \nPoints of interest The ability to form strong relationships is viewed as central to mental health recovery. Few studies have explored the experiences of people with mental health problems in forming or maintaining romantic relationships. Our study addressed this gap through conducting focus groups with ten people with mental health problems, six carers and six professionals. All three participant groups considered romantic relationships to be important aspects of wellbeing and lamented this gap in the lives of people with mental health problems. Service users and carers perceived the physicality and outward trappings of ‘being mentally ill,’ including treatment side effects and unemployment to impact negatively on romantic relationships. Service users reported self and societal stigma as a major barrier to relationships. Carers and professionals focused on vulnerability and risks. Professionals stated that they rarely supported people with mental health problems with their romantic relationships and were uneasy about discussing sexual intimacy. This research used focus groups with people with mental health problems, family carers and mental health professionals. It explored how people with mental health problems experience romantic relationships and what support they might need. People with mental health problems said that they struggled to form and maintain romantic relationships. This was due to mental health symptoms, medication side-effects, stigma, a lack of confidence and worries about telling others about their mental health problems. Carers felt that romantic relationships were valuable but worried about their relatives being vulnerable or the relationship being stressful. They felt support should be provided by existing mental health services. Mental health professionals reported that they rarely provided support around romantic relationships. They were also reluctant to discuss sexual intimacy with the people they were working with. The study shows the need for staff training to enable better support in this area. This research used focus groups with people with mental health problems, family carers and mental health professionals. It explored how people with mental health problems experience romantic relationships and what support they might need.People with mental health problems said that they struggled to form and maintain romantic relationships. This was due to mental health symptoms, medication side-effects, stigma, a lack of confidence and worries about telling others about their mental health problems.Carers felt that romantic relationships were valuable but worried about their relatives being vulnerable or the relationship being stressful. They felt support should be provided by existing mental health services.Mental health professionals reported that they rarely provided support around romantic relationships. They were also reluctant to discuss sexual intimacy with the people they were working with.The study shows the need for staff training to enable better support in this area. [ABSTRACT FROM AUTHOR]

Background: There have been major changes in the provision and organization of services for people with intellectual disabilities in England over the last 30 years, particularly deinstitutionalization and the development of the mixed economy of care. The experiences of the people who participated in the Care in the Community Demonstration Programme in the mid-1980s provide evidence of the immediate and longer-term effects of the reprovision policy. Methods: Cross-sectional and longitudinal evidence was gathered on service use and costs for over 250 people 12 years after they left long-stay hospitals for community living arrangements. Comparisons were made with the situation in hospital, and 1 and 5 years after leaving. Relationships between costs after 12 years and individual characteristics assessed before people left hospital were explored. Results: Community care at the 12-year follow-up remained more expensive than hospital-based support, although the average cost was lower than at either of the 1- or 5-year community follow-up points. Service users were living in a wide variety of accommodation settings. Management responsibility fell on National Health Service (NHS) trusts, local authorities, voluntary agencies, or to private organizations or individuals. After standardizing for users' skills and abilities, costs in minimum support accommodation were significantly lower than those in residential and nursing homes, costs in staffed group homes significantly higher, and costs in hostels slightly lower. When looking at differences between individuals, no relationship was found between costs and outcomes although, overall, people were better off in the community than they had been when in hospital. Conclusions: Reprovision planning for hospital and other institutional modes of care requires major and long-term commitment of resources. Quality of life improvements can be achieved at a cost little different in the long-run from that for hospital care. The link between needs and costs (reflecting the services intended to meet those needs) would be made stronger through the individualization of care.

Background: The social inclusion of people with intellectual disabilities presents a major challenge to services. As part of a 12-year follow up of people resettled from long-stay hospitals, the size of 213 individuals' social networks and the types of social support they received were investigated, as viewed by people with intellectual disabilities themselves. The types of support received in four different kinds of community accommodation were compared. Method: Individuals were interviewed and their social support networks mapped using a Social Network Guide developed for the study. Descriptive statistics were generated and comparisons made using generalized linear modelling. Results: The sample comprised 117 men (average age 51 years) and 96 women (average age 56 years). All but seven were White British, 92% were single and they had in general, mild to moderate intellectual disabilities. The average network size was 22 members (range 3-51). The mean density was 0.5. A quarter of all network members were other service users with intellectual disabilities and a further 43% were staff. Only a third of the members were unrelated to learning disability services. In general, the main providers of both emotional and practical support were staff, although these relationships were less likely to be described as reciprocal. Other people with intellectual disabilities were the second most frequent providers of all types of support. People in small group homes, hostels and supported accommodation were significantly more likely to report close and companiable relationships than those in residential and nursing homes, but they also reported a greater proportion of critical behaviour. Conclusions: The social networks revealed in this study are considerably larger than those of previous studies which have relied on staff reports, but findings about the generally limited social integration of people with intellectual disabilities are similar. A clearer policy and practice focus on the desirability of a range of different social contexts from which to derive potentially supportive network members is required so that people do not remain segregated in one area of life.

The aim of this research was to explore why workers in health and social services embarked on a Certificate in Community Care Practice and the extent to which they felt knowledge learnt related to their every-day work practice. The objective was to indicate how useful more academic courses are for health and social care staff, and to find out the kinds of barriers to practicing theory learnt in the classroom students face in their "real world" of work. Data was collected from 25 mature students (over half were between the ages of 41-50 years), 3 of whom were men from a range of professional backgrounds including; support staff working in residential and domiciliary services and informal (unpaid) carers for people with learning disabilities, mental health difficulties as well as older people. Quantitative (an adapted questionnaire) and qualitative (focus group session which was an integral part of classroom learning about research methodology) methods were employed. Data was analysed using SPSS and thematic analysis. Findings indicated that the main motivators for study was to gain a qualification and for personal development. Students reported their increased desire to link theory learnt which they found highly relevant to their everyday practice, but organisational barriers sometimes precluded them from doing so. The paper ends with policy and practice recommendations. (Contains 4 tables and 1 note.)

Background: Evidence suggests that social networks mediate social functioning, self-esteem, mental health and quality of life. This paper presents findings concerning changes in the social lives, skills, behaviour and life experiences of a group of people with intellectual disabilities (n = 18), who gained support from an employment agency to find paid work. Method: The composition and quality of individuals' social networks were mapped using a Social Network Guide. Changes in skills, behaviour and life experiences were assessed using standardized measures. Results: The social network size of participants increased over time, with most social contacts being drawn from community contexts. This linked to improvements in life experiences, particularly in relation to leisure activities. Some improvements in adaptive behaviour were also found over time but no significant relationship between social network size and changes in adaptive behaviour were evident. Conclusions: Whilst work will not guarantee social relationships, it can help maintain network size and provides a good opportunity for people with intellectual disabilities to meet others who are not associated with intellectual disability services.

This case study used individualized communication for interviewing people with intellectual disability in outcome and quality of life research. Researchers developed a flexible communication strategy for involving service users, drawing on core, local and individual vocabularies and using signs, graphic symbols and photographs to supplement spoken English. The approach was found to facilitate user participation compared with previous follow-ups. (Contains references.) (Author/DB)

A longitudinal study involving 250 adults who had been institutionalized found that once they moved into the community, social impairment did not change over time, although there was a significant decrease in conversation and social mixing, non-verbal communication, and initiation of conversation and social interaction. (Contains references.) (CR)