Search

Background: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. Methods: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis. Results: Our analysis led to the identification of one overarching theme; 'Doing what you love and growing' and sub‐themes; 'Choice, opportunity and empowerment', 'Being out in the world' and 'Lowered expectations and static lives'. Conclusion: People with intellectual disabilities can lead capability‐deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives. [ABSTRACT FROM AUTHOR]

Background: There is established evidence of complicated grief among people with an intellectual disability. This paper describes the process of adapting complicated grief therapy (CGT) for this population. Method: Action research documented the adaptation of CGT. Qualitative methods included analysing meeting notes, reflective interviews with two members of the team involved in adapting the materials, and interviews with six professionals working in disability settings who reviewed the adapted materials. Results: Key processes included adapting the standardised tools that form part of CGT and developing adapted approaches to abstract concepts related to death, dying and bereavement. Key therapeutic components such as imaginal revisiting and the role of significant others required adaptation for implementation with people with intellectual disabilities. Conclusion: The importance of adapting evidence‐based therapies for people with intellectual disabilities is emphasised. This research provides an adapted form of an established therapy for piloting with this population. [ABSTRACT FROM AUTHOR]

Background: Research suggests that people with intellectual disabilities have a higher risk for cardiovascular disease than the general population. The aim of this study was to identify barriers for the prevention, diagnosis, and treatment of cardiovascular disease for people with intellectual disabilities. Method: We conducted individual interviews with relatives and general practitioners and focus group interviews with staff working at an assisted home facility, a cardiac ward, an obesity clinic and two rehabilitation centres (n = 33) in Norway. Inductive approach and thematic analysis were used to analyse the data. Results: We identified barriers on an individual and a structural level. The underlying reason for these barriers is that health problems, such as cardiovascular disease, are regularly overlooked as the condition of intellectual disability overshadows other possible diagnoses. Conclusion: This focus on intellectual disability rather than other explanations leads to shortcomings in the prevention, diagnoses, and treatment of cardiovascular disease in this group. [ABSTRACT FROM AUTHOR]

Background: This study examines the extent of exposure to verbal violence experienced by people with intellectual disabilities and whether it differs based on their housing situation: living in the community, with family, or in a residential facility. Method: One hundred and eighty‐nine people with intellectual disabilities were interviewed about their experience with verbal violence. Results: Eighty‐six percent reported experiencing verbal violence in their lifetime and approximately 77% experienced it the past week. Participants were most likely to be yelled at, and friends were the most common perpetrators. While there were few differences by setting, people living with their families were more likely to be laughed at and marginally more likely to experience rude comments. Conclusions: Verbal violence is prevalent in the lives of people with intellectual disabilities in Israel. Interventions are necessary to assist people with intellectual disabilities to deal with such incidents, with possible additional supports needed for those living with family. [ABSTRACT FROM AUTHOR]

Background: This study reports the process evaluation of the In‐Dialogue conversation aid to facilitate shared decision‐making with people with intellectual disabilities in the palliative phase. Methods: Training for In‐Dialogue was evaluated by 53 support staff members through questionnaires. The use of In‐Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi‐structured interviews with five relatives, nine support staff and three people with intellectual disabilities. Results: Most participants considered the training helpful to apply shared decision‐making. Sixty‐three people with intellectual disabilities participated in In‐Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging. Conclusion: Conversations about illness and the end of life appeared to be feasible with the In‐Dialogue conversation aid and provided insight into people's experiences and preferences. [ABSTRACT FROM AUTHOR]

Background: Little is known about how health issues identified at the annual health check (AHC) are followed up and addressed, how participants self‐manage their health in between AHCs, and what support they receive. This research aimed to explore this. Methods: People with intellectual disabilities (n = 12), and/or their supporters residing in Wales, were interviewed following their AHC and again at 6 and 11 months. A recurrent cross‐sectional thematic analysis was undertaken. Results: Five main themes emerged from interview one: going for a health check, issues identified, and actions taken, supporting the self‐management of health, the personal context, and addressing health inequities. Four main themes emerged from follow‐up interviews: follow‐up, supporting the self‐management of health, the need for reasonably adjusted health services, and going for another health check. Conclusion: A broader system of support around the AHC is required if people are to achieve or maintain the best possible health. [ABSTRACT FROM AUTHOR]

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves. [ABSTRACT FROM AUTHOR]

Background: To improve the quality of palliative care, six evidence‐based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE‐AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi‐structured group interviews with 43 professionals, field notes and implementation plans. Results: A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. Conclusions: Improving palliative care needs a context‐specific, flexible approach, with involvement of all stakeholders. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are less physically active and suffer from ill‐health more than the general population. Support staff play an important role in the person's life. This study aimed to explore the support staff's experiences regarding the feasibility of adapted web‐based exercise for people with intellectual disabilities. Method: Participants with intellectual disabilities living in community‐based settings were recruited for a web‐based exercise study. Eight semi‐structured interviews were carried out with their support staff before and after the intervention period. Results: The main theme, 'Support staff are crucial for feasibility' encompasses the importance of communication, structure, and motivation in improving physical activity for people with intellectual disabilities. Conclusion: The experiences of support staff, indicate that a web‐based exercise program is feasible for the target group, and one way to overcome challenges for PA, where the role of the staff is crucial. [ABSTRACT FROM AUTHOR]

Background: Endings in therapy are discussed widely in mainstream literature, however, there is only a small amount of research that considers endings in therapy for people with intellectual disabilities. Methods: Eight therapists were interviewed about their experience of ending therapy with people with intellectual disabilities. Interviews were analysed using Interpretative Phenomenological Analysis (IPA). Results: Four superordinate themes associated with endings that go well were identified: 'recognising', 'readying', 'reframing' and reflecting', with a fifth theme reflecting endings that were less successful. Participants worked hard to offer transformative experiences of endings and an overarching 'super‐superordinate' theme of 'facilitating transformative endings' encompassed the findings. Conclusions: Endings are a multi‐faceted component of psychological therapy with people with intellectual disabilities and are significant for both client and therapist. We discuss implications for therapy adaptations and future research. [ABSTRACT FROM AUTHOR]

Background: Staff members' views can have a significant impact on sexuality issues of people with intellectual disabilities. Research on the impact of sociocultural factors in this area in the Chinese context is sparse. Methods: Semi‐structured interviews were conducted with seven professionals (social worker, nurse, life skills trainer and manager) to explore their experiences of and attitudes towards the sexual needs of people with intellectual disabilities by applying interpretative phenomenological analysis. Results: The study identified two major themes, each with two sub‐themes: 1. Professional handling of the sexual needs of people with intellectual disabilities (sex education and intervention); 2. Barriers (incompatible approaches and parental resistance). Participants also experienced feelings of resignation facing the barriers they encountered. Collectivism and cultural view about sex are potentially the influencing factors. Conclusion: This study highlights the need to adopt an evidence‐based sex education programme whose content and delivery should take account of cultural factors. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11) and siblings (N = 16) to understand their perspectives about living with parents and future planning. Data were analysed using framework analysis. Results: Four themes were identified: 'What matters to me', 'When should we plan', 'What are the options' and 'Who will help'. Participants knew they needed to make plans but did not feel supported to do so. While they viewed moving as an opportunity for independence, they feared there were no viable alternatives. Conclusion: Person‐centred resources and support are needed for families to plan for transitions in care, including proactive approaches from social services and help to prepare for conversations with social care professionals. [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: People with intellectual disabilities are a particularly vulnerable group, at an increased risk of mortality from COVID‐19 and of poor mental health. Psychologists providing mental health support to people with intellectual disabilities report poorer mental wellbeing and higher occupational stress. Moreover, they raise concerns about the ability of people with intellectual disabilities to engage with digital technologies for mental health support in the context of reduced face‐to‐face psychological provision. Aims: The study aimed to understand psychologists' experiences of working with people with intellectual disabilities during the pandemic. Materials & Methods: Semi‐structured interviews were conducted with 11 psychologists from community intellectual disabilities services. Data were analysed using interpretative phenomenological analysis. Results: Two superordinate themes emerged. Survive or Thrive highlighted the challenges and successes clinical psychologists experienced while working during the pandemic. 'Left to Their Own Devices' described psychologists' experiences of their clients as forgotten within society. Conclusion: The current study demonstrates psychologists' ability to adapt to extremely challenging circumstances, exposes the vulnerabilities of people with intellectual disabilities and highlights the gaps in service provision. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities' voting rate within the United Kingdom remains significantly below the population average despite government enacted voting promotion measures. No published academic literature directly involves people with intellectual disabilities when considering their UK general election experiences – this study aims to address this omission. Methods: Semi‐structured interviews were conducted with people with intellectual disabilities (N = 20) about their election experiences during the 2017 (n = 18) and 2019 (n = 8) general elections. Six participants were interviewed around both elections. Data was analysed with template analysis. Results: Eight themes were produced – election information, political knowledge, political opinions, voting choice process, polling station experience, voting outcome, capacity and support. Theme interactions impacted on election experiences. Conclusions: While acknowledging diverse experiences, voting outcomes and experiences were particularly impacted by factor interactions concerning election information and/or polling station accessibility, capacity and support. Voting promotion interventions and future research should consider these areas. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities in staffed group homes often need lifelong support and dependency on others. Thereby, special demands are placed on staff and service managers to ensure opportunities for participation in everyday life. This study aims to explore how service managers promote participation in Swedish group homes for adults with intellectual disabilities. Method: A qualitative research design involving individual interviews with 14 service managers was used to gain an understanding of how the participation of adults with intellectual disabilities can be promoted in Swedish group homes. Results: The results comprise two main themes; Creating preconditions for participation and Barriers for promotion of participation. Conclusions: Service managers experienced that promoting service user participation in group homes was an important part of their responsibility. The findings indicate that structural strategies such as coaching, supervision and reflection are important and should be further developed. [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]

Background In studies involving people with intellectual disabilities, photovoice is increasingly used to include the voice of participants. Analysing existing literature, the present authors found that photovoice was used in various forms with different outcomes. These studies describe both obstructing and facilitating factors. The present authors designed a more standardized approach of photovoice and developed an alternative strategy: 'guided photovoice.' Method The 'guided photovoice' approach was tested on fourteen participants with intellectual disabilities. The outcomes of the approach were evaluated. Results The effectiveness of the approach varied with the participants' capabilities and needs. Some participants were talked more while taking photographs, others told their story easily during the interviews. The use of follow-up questions was helpful to deepen the interview. Conclusions A more standardized, guided photovoice approach is a helpful addition to the various options for using photovoice; it is important to decide which approach best fits the needs and capabilities of the participants. [ABSTRACT FROM AUTHOR]

Background: Earlier studies show that to gain more understanding of the concept of social inclusion, the views and experiences of people with intellectual disabilities are needed. The aim of this study was to investigate their perspective on neighbourhood social inclusion from an ecological point of view. Method: We carried out a photovoice study with 18 people with intellectual disabilities in three neighbourhoods in the Netherlands. Participants took photographs in their neighbourhood they considered relevant, and these photographs were discussed during an interview. Results: Six themes emerged from qualitative analysis: attractiveness of the neighbourhood, social contacts in the neighbourhood, activities in the neighbourhood, social roles in the neighbourhood, independence and public familiarity. Conclusions: As regards neighbourhood social inclusion, participants were often focused on small and informal activities and situations. Public familiarity proved very important. Framing the concept of neighbourhood social inclusion within an ecological approach may help to better understand processes of social inclusion. [ABSTRACT FROM AUTHOR]

Background: Increasing the societal participation of people with intellectual disabilities via competitive employment requires a full understanding of what this means to them. This paper aims to provide an in‐depth examination of the lived experiences of people with intellectual disabilities in competitive employment. Method: Interviews were conducted with six participants with mild intellectual disability or borderline functioning and good verbal communication skills. Interviews were analysed according to the guidelines of interpretative phenomenological analysis (IPA). Member checks were conducted. Results: Analysis yielded three main themes: (a) Building on my life experiences, (b) My place at work and (c) Being a valuable member of society, like everyone else. Conclusions: Competitive employment could make a substantial contribution to the sense of belonging to society and quality of life of people with intellectual disabilities. Nevertheless, they must cope with stigma‐related obstacles and feelings of being dependent on others in the work environment. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies ( IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy ( CBT) to individuals experiencing mental health problems, although its effectiveness for people with ID, when delivered within IAPT, is unclear. Method Ten high-intensity therapists took part in semi-structured interviews, analysed using thematic analysis, regarding their experiences of delivering CBT to people with ID in IAPT. Results The rigidity of the IAPT model appears to offer a poor fit with the needs of people with ID. Therapists appeared uncertain about how to modify CBT and highlighted training and service development needs. Conclusions Findings suggest barriers to accessing IAPT largely remain unaddressed where people with ID are concerned. Services may need to reconsider what constitutes appropriate reasonable adjustments to ensure equitable access. [ABSTRACT FROM AUTHOR]

Background: Services have a duty to uphold the personal and sexual relationship (P&SR) rights of adults with intellectual disability. However, little is known about how social care workers' (SCWs) perceptions of public views of intellectual disability and sexuality might affect their attitudes, believes and behaviours towards supporting P&SR needs. This exploratory study addresses this gap in knowledge. Materials And Methods: Qualitative interviews using critical incident technique were conducted with 18 SCWs. Data were transcribed and thematically analysed. Results: Four dominant themes were identified; socio‐cultural, practice‐policy gaps, fear and safety needs. These highlights how perceptions of public attitudes impact on SCWs' attitudes towards supporting development of P&SR both directly and through perceptions of organisational policies. This leads to prioritisation of safety needs over support for P&SR. Conclusions: Public expectations strongly influenced SCWs' interpretation of organisational policy, emphasising a need for practice‐based support to manage public expectations and reduce fear. [ABSTRACT FROM AUTHOR]

Background: Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results. Method: Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results. Results: Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information. Conclusions: Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as “empowerment,” can be supported to facilitate their involvement in research. [ABSTRACT FROM AUTHOR]

Background Positive interpersonal relationships have been found to enhance an individual's quality of life. However, people with intellectual disabilities ( PWID) often have restricted social networks, and little is known about their views on close social relationships. The study aimed to explore how this group perceives and experiences close relationships. Materials and Methods Ten (6 = men 4 = women) PWID participated. Data were collected using semi-structured interviews, and analysed using interpretive phenomenological analysis. Results The results report on three of five themes drawn from a larger qualitative study: 'Relationships feeling safe and being useful'; 'Who's in charge?' and 'Struggling for an ordinary life'. Conclusions Close relationships are valued and desired by PWID, but a variety of barriers inhibit their development and maintenance. This includes the failure of others to value, accept and appropriately support the independence and relationships of PWID. Potential ways of addressing these issues are discussed. [ABSTRACT FROM AUTHOR]

Background: Recent COVID‐19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. Conclusions: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well‐being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed. [ABSTRACT FROM AUTHOR]

Background: We examined the influence of the organizational environment on challenging behaviour in people with intellectual disabilities to increase understanding of the quality of support services for people with intellectual disabilities. Method: Twenty‐one professionals and managers from four specialized Dutch disability service organizations were interviewed. Data were analysed with a grounded theory approach, using Bronfenbrenner's ecological theory as a sensitizing frame. Results: The organizational environment (i.e., vision, values, sufficient resources) is related via the support service (i.e., providing stability, constant awareness) to residents' challenging behaviour and is also linked directly to challenging behaviour (e.g., living environment, values). Organizations are restricted by national regulations, negative media attention and changing societal values, which negatively influence quality of support. Conclusions: The creation of a supportive organizational environment for staff, who in turn can provide quality support services to residents with demanding care needs, was found to prevent challenging behaviour in people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person‐centred methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID‐care. We examined the experiences of ID‐professionals in using DCM. Methods: We performed a mixed‐methods study, using quantitative data from care staff (N = 136) and qualitative data (focus‐groups, individual interviews) from care staff, group home managers and DCM‐in‐intellectual disabilities mappers (N = 53). Results: DCM provided new insights into the behaviours of clients, enabled professional reflection and gave new knowledge and skills regarding dementia and person‐centred care. Appreciation of DCM further increased after the second cycle of application. Conclusion: DCM is perceived as valuable in ID‐care. Further assessment is needed of its effectiveness in ID‐care with respect to quality of care, staff‐client interactions and job performance. [ABSTRACT FROM AUTHOR]

Introduction: Health assessment instruments can help to raise awareness among general practitioners of specific health problems in people with intellectual disabilities (PID). The present authors developed a health assessment questionnaire using the cognitive interview technique (CI) to improve the comprehensibility. The utility of this approach to questionnaire development involving PID is assessed. Method: A qualitative approach using the CI was employed. The study included PID and their caregivers. The present authors interviewed 14 participants in 5 subsequent rounds. After each round, the questionnaire was adjusted until saturation was reached. Results: Three hundred and sixty three identified problems led to 316 changes to the questionnaire. Most problems (102) concerned the comprehension of the question, followed by problems in the "missing answer categories" and "inaccurate instruction" section. Conclusion: The comprehensible health assessment questionnaire can help PID to take an active role in communication with their GP. The use of CI helped to improve the questionnaire. CI is a usable and valuable procedure for PID. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities experience serious health inequalities (e.g. they die younger than people without intellectual disabilities). Medical students' attitudes towards health care for this population warrant empirical attention because, as tomorrow's doctors, they will affect the health inequalities that people with intellectual disabilities experience. Materials and Methods This study investigated these attitudes by interviewing 17 medical students about medical students' attitudes towards people with intellectual disabilities and thematically analysing resultant qualitative data. Results Key themes were identified, such as medical students' worries about working with patients with intellectual disabilities, and their wish for more medical teaching on, and direct experience with, this patient group. Conclusions This study suggests that medical schools need to better prepare medical students for their roles as providers of health care to people with intellectual disabilities by, for example, enhancing their attitudes towards health care for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background Emergency medical services ( EMS) providers are often called to rapidly determine and act upon patients' wishes for end-of-life care. People with intellectual disabilities are living increasingly longer with complex conditions leading to international calls for person-centred advance care planning. Yet, best estimates suggest that very few people with intellectual disabilities document their wishes. Methods This exploratory-descriptive study incorporated mixed methods to analyse data collected consecutively (surveys, n = 239; interviews, n = 48) with EMS providers from five agencies. Data were subjected to a sequential quantitative-qualitative analysis applying a critical discourse analysis framework. Results Findings indicate that 62.7% had treated a person with intellectual disability who had medical orders directing end-of-life care. Three themes (provider familiarity, organizational processes, sociocultural context) offer insights about how medical orders inform EMS providers during calls involving people with intellectual disabilities. Conclusion Multiple contexts influence how wishes are documented and care provided to people with intellectual disabilities near life's end. [ABSTRACT FROM AUTHOR]

Background This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research. Methods The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus groups to gather information on the views of students, trainers and members of the research team regarding how the programme progressed, the learning achieved and participants’ satisfaction with the programme. Results The evaluation showed that most of the participants were satisfied with the programme and provided guidelines for planning contents and materials, demonstrating the usefulness of these types of programme in constructing the research group and empowering people with intellectual disabilities to participate in research. Conclusions The evaluation revealed that the programme had been a positive social experience that fostered interest in lifelong learning for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background The aim of this research was to understand the characteristics that adults with intellectual disabilities look for in a partner. There have been numerous studies that have explored partner selection for people without intellectual disabilities, but no research that specifically identified the traits valued in a partner by people with intellectual disabilities. Method In-depth interviews were conducted with eleven participants across two UK sites. All participants were adults with an intellectual disability who had been in a relationship with a partner for over a year. The narratives were analysed utilizing hermeneutic phenomenology, guided by the theory of Van Manen (1990). Results The findings highlighted that, regardless of age, participant’s relationships typically developed within a segregated environment for people with intellectual disabilities over the past 10 years. People with intellectual disabilities expressed a wish to be loved, to be treated kindly and to have companionship. However, they did not place high value on attributes such as financial security, social status or intelligence. Conclusions The research demonstrated how poorly integrated people with intellectual disabilities are within mainstream society. Desired characteristics and expectations for participant’s relationships were rooted in a shared history and culture, which was shaped by their intellectual disability and support needs. [ABSTRACT FROM AUTHOR]

Background: Attributions are cognitive variables that influence a person's behaviour. Although a large volume of research has been conducted on the attributions of support staff with regard to challenging behaviour (CB) exhibited by people with intellectual disabilities (ID), studies on patterns of attributional dimensions (i.e. attributional styles) are scarce. Method: Using semi‐structured interviews, 19 support staff members were asked to describe incidents of aggressive, self‐injurious and sexualized challenging behaviour. Data on attributions were analysed using the Leeds Attributional Coding System. Results: Four attributional styles differed significantly for aggressive, self‐injurious and sexualized challenging behaviour. In addition, support staff members largely attributed these three types of CB to characteristics and behaviour of clients with ID. Conclusions: The results indicate that it is important to train support staff to recognize and understand the ways in which their attributions and behaviour influence the existence and maintenance of CB. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. Method: In‐depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis. Results: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate. Conclusions: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care. [ABSTRACT FROM AUTHOR]

In this study, we analyse the characteristics that define an ideal school, from the perspective of people with intellectual disabilities. we carried out an inclusive research qualitative study with 36 Spanish adults with intellectual disabilities. Information from individual interviews about educational inclusion was summarized on to notecards, allowing participants to place messages into categories on a poster board. Identified themes included facilities and resources; values and rules; intimidation; what students learn; how students learn best; exams; teachers; and classmates. Results highlight the importance of inclusive values and the need for a curriculum that meets the needs of all students. [ABSTRACT FROM AUTHOR]

Background Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. Methods Data were gathered via semi-structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. Findings Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. Conclusions Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing. [ABSTRACT FROM AUTHOR]

Background: For adults with intellectual disabilities living in a residential care facility, support staff, who are an integral part of their daily lives, can play an important role in supporting their sexuality. Even though multiple programmes exist, barriers remain when it comes to their application. This study aimed to identify factors affecting residential staff's perception of their role in supporting the sexuality of adults with intellectual disabilities living in a residential care facility as well as facilitators and barriers to that support. Method: Semi‐structured interviews were conducted with 12 support staff. Results: A thematic analysis revealed four factors, namely support staff's role, facilitators and barriers, sexuality of residents with intellectual disabilities and policies and regulations. Conclusion: Results illustrate the importance of expanding support staff's knowledge, clarifying procedures for implementing the support staff's role and establishing a clear practise framework. [ABSTRACT FROM AUTHOR]

Background Many people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying. Method (i) Semi-structured interviews with 20 staff in residential/supported living services to establish training needs; (ii) three-one-day courses were attended by 114 staff and evaluated through questionnaires. The course consisted of World Café sessions, presentations and feedback by people with intellectual disabilities, and an expert teaching session. Results Staff fear, cultural influences and inexperience with death-related conversations were major communication barriers. Evaluation of the course was overwhelmingly positive. Conclusions Intellectual disabilities services must have clear staff training strategies around death, dying and communication. More work is needed to assess the resource implications and impact on practice of different training methods and other support strategies. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Active Support, now widely adopted by disability support organizations, is difficult to implement. The study aim was to identify the factors associated with good Active Support. Methods: Data on service user and staff characteristics, quality of Active Support and practice leadership were collected from a sample of services from 14 organizations annually for between 2 and 7 years, using questionnaires, structured observations and interviews. Data were analysed using multilevel modelling (MLM). Results: Predictors of good Active Support were adaptive behaviour, practice leadership, Active Support training, and time since its implementation. Heterogeneity, having more than six people in a service and larger organizations were associated with lower quality of Active Support. Conclusions: In order to ensure that Active Support is consistently implemented, and thus, quality of life outcomes improved, organizations need to pay attention to both service design and support for staff through training and practice leadership. [ABSTRACT FROM AUTHOR]

Background: There is a lack of health promotion programming designed to change the physical activity environment of the group home setting. The Menu‐Choice programme assists staff in creating physical activity goals alongside residents with intellectual disabilities and provides strategies to incorporate activity into the group home schedule. The purpose of this study was to complete a process evaluation of Menu‐Choice utilizing qualitative methods. Methods: Twelve participants, who completed a 10‐week pilot intervention (n = 7 staff, mean age 42; n = 5 residents, mean age 52), participated in face‐to‐face interviews. Participants represented five group home sites involved in the intervention. Results: Meta‐themes included: (i) Programme training, (ii) Programme implementation, (iii) Programme physical activity, (iv) Programme barriers, (v) Programme facilitators and (vi) Programme feedback. Conclusions: Changes in programme training and simplified programme materials are needed to accommodate identified barriers for implementation. The importance of obtaining increased agency support and policy change is highlighted. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Challenging behaviour is a common problem among people with ID and in services for people with ID. This paper aims to provide an overview of the views and preferences of people with ID on challenging behaviour. Method: Semi‐structured interviews were conducted with thirteen adults with mild to moderate ID and seven proxies (family or close associates of adults with ID who were unable to communicate and/or with severe or profound ID) in the Netherlands. The interviews were audio‐recorded, transcribed and analysed thematically. Results: People with ID and (a history of) challenging behaviour have clear views and preferences on factors related to challenging behaviour, assessments, non‐pharmacological and pharmacological interventions and health professionals' approach. Conclusions: The identified views and preferences of people with ID are not always in accordance with current procedures and treatments for challenging behaviour and should be included in future care processes and research. [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]

Background: Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method: Semi‐structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results: Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution‐oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions: The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations. [ABSTRACT FROM AUTHOR]

Background This paper questions consumerist assumptions in current English social care policy and aims to look behind the processes of personalization to interrogate what 'choice and control' means in the lives of a diverse group of people with intellectual disabilities. Methods Data were from multiple interviews and direct practice recordings with nine people using personal budgets and were analysed using an interpretative approach. Results Identity, other people and personal budget processes were all important for choice and control. People needed to build confidence in themselves as decision-makers, both through peer support and through joint decisions with trusted others. Conclusions Practitioners need to take into account the spectrum of ways in which people may make decisions. Action needs to be taken both at the micro level of support interactions and at the macro level, with a clearer articulation of independent living in policy and strategy for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Australian disability services must comply with quality standards defined by federal government. Standards are abstract, focus on paperwork and rarely describe what good service quality looks like in practice. This research explored frontline day service staff's perceptions of good service quality to identify ways that it may be better monitored. Methods: Using a constructivist grounded theory methodology, semi‐structured interviews were conducted with 9 frontline staff from 3‐day services. Interviews were recorded, transcribed and analysed for themes using constant comparison and line‐by‐line coding. Results: Five categories of good practice were identified: collaborative hands‐on leadership, well‐planned services, respect for people with intellectual disabilities and their carers, a culture of continuous improvement and professionalization of the support worker role. Conclusions: Results align with research undertaken in accommodation services for people with intellectual disabilities, suggesting commonalities in frontline staff's perceptions of quality in both day and accommodation services. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability experience higher rates of mental health disorders than the rest of the population, and expert opinion holds that multiple barriers prevent people with intellectual disability from accessing appropriate services. Methods: A qualitative study was designed to explore the lived experience of barriers and enablers to access to mental health services among people with intellectual disability. Interviews and focus groups were conducted with people with intellectual disability, carers and service providers. Results: Barriers and enablers were identified across four key dimensions of access: utilization of services; service availability; relevance, effectiveness and access; and equity and access. These factors operated at both systemic and personal levels. Conclusions: The findings from this study provide empirical evidence of anecdotal experiences of access to mental health services and provide insight into the ways users, carers and service providers navigate an often hostile system and indicate further directions for research. [ABSTRACT FROM AUTHOR]

Background The purpose of this thematic synthesis was to review qualitative studies on perspectives of persons with intellectual disabilities regarding friendships and intimate relationships. Materials and methods A literature search was conducted, including studies published between 2004 and 2014, involving participants 14 years of age or older, who had intellectual disabilities, and participated in focus groups or interviews. Results Eighteen studies were included. Three master themes were identified: (i) How do I know someone is my friend? (ii) How do I know someone is my boyfriend or girlfriend? and (iii) What helps and hinders relationships? Conclusions Understanding how people with intellectual disabilities describe relationships, and being aware of factors that support and impede relationships, will aid stakeholders in developing training, policies, programmes and services. Knowledge translation of research that focuses on strategies aimed at supporting relationships is crucial to affect change in applied settings and improve quality of life for persons with intellectual disabilities. [ABSTRACT FROM AUTHOR]