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Background: Photovoice is an arts-based participatory action research methodology that is growing in popularity. Our aim was to systematically review photovoice research with people with intellectual disabilities to describe the current 'state of the art' and identify areas for further methodological consideration. Methods: We searched five databases using search terms relating to photovoice and intellectual disabilities. Thirty one studies met inclusion criteria. We used thematic analysis to identify common themes. Findings: The themes identified--adaptations to the photovoice method, collaboration, participation and power, impact and outcomes--explored how far the 'voice' and agency of participants with intellectual disabilities taking part in photovoice research were supported and whether photovoice lived up to its promise as 'action' research. Conclusion: Photovoice creates opportunities for self-representation of people with intellectual disabilities through photography. Participants could be further supported to engage with researchers in critical reflection on findings and collaborate on tangible outcomes.

Background: Shared housing for adults with intellectual disabilities with staff support, is a common housing model internationally. We explored an overlooked aspect of group homes, namely the extent to which they enable a sense of 'feeling at home' for residents. Method: A diverse group of 19 housemates participated in a photovoice study. Participants took photos in their homes and discussed them in individual interviews and in groups. Data was analysed using reflexive thematic analysis. Results: Residents' experience of home was multi‐dimensional. 'Feeling at home' related to home as a site of identity cultivation (personal home); physical comfort or 'misfitting' (physical home) and home as the locus of key relationships (social home). Conclusion: Achieving a sense of 'feeling at home' requires engagement in practices of home‐making. Many of our participants required support from staff to engage in these practices. For some housemates their experience of home was conditional and precarious. [ABSTRACT FROM AUTHOR]

Background: Easy Read health information (ERHI) has the potential to promote engagement in health care for people with intellectual disabilities. This study examined how ERHI was actually employed by clinicians and received by patients. Method: Video recordings were made of 32 patients with intellectual disabilities attending a health check with primary care clinicians who had been given access to a range of ERHI, and 9 attending a health appointment with a specialist intellectual disability nurse. The recordings were analysed using conversation analysis. Results: Easy Read health information was visible in only 7 (22%) of the primary care health checks (though not always shared with the patients). Easy Read health information was used in sequences where clinicians offered unsolicited health advice and met with degrees of resistance from patients, though its potential for shared decision making was also evident. Conclusions: Easy Read health information can aid patient understanding and decision making, but attention should be paid to the interactional practices accompanying their use.

Background: The co-production concept holds out the promise of forging new relationships between professionals and service users with intellectual disabilities. However, little empirical research explores the embodied practices of these projects occasion. We identify two key tensions intrinsic to such projects; the tension between expert/professional knowledge and lay/experiential knowledge, and between co-producers as different from or typical of the public they are representing. Methods: We explored how these tensions were manifested and responded to in ongoing interactions by analysing video recordings of co-design groups where people with intellectual disabilities engaged in the production of Easy Read materials. Results: We noticed the instability of participants' claims to expert/professional knowledge and the challenges of attending to and mobilising participants' experiential knowledge within the constraints of the group task. Conclusions: Interactional dynamics were managed to preserve consensus and homogeneity within the groups, with the potential for reinforcing a limited identity associated with "intellectual disability."

Background: Concerns about health inequalities experienced by people with intellectual disability (ID) have led to many health information materials being created in an "Easy Read" format. This study aimed to understand the practices involved in making information accessible. Methods: Individual, pair and group interviews were conducted involving people with and without ID based in non-profit organisations, academic, and health service settings. Thematic analysis addressed the creation of Easy Read health resources, the format and content of the texts, and how producers imagine the texts are received by potential audiences. Results: Little consensus emerged of the best way to produce Easy Read health information. Lacking systematic feedback, participants described imagined audiences and contexts for their reception. Conclusions: Production of Easy Read resources has become widespread despite current limited evidence of impact. Interactions between social groups involved in the production process and the wider policy and legislative context contribute to this situation.

Background: Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England. Method: Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes. Results: Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated. Conclusions: Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent.

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.

Background: Despite growing interest in the experiences and social barriers experienced by people with intellectual disabilities from ethnic minorities, the specific challenges associated with migration from abroad faced by these individuals and their families have been overlooked. This research focuses on narratives told by Turkish-speaking families about migrating to the UK with a family member with intellectual disabilities. Method: Semi-structured interviews were carried out with five Turkish-speaking families who have a son or daughter with an intellectual disability and had migrated to the UK. Interviews were analysed using narrative analysis. Results: Seeking help for the person with intellectual disabilities in a new country was a central part of migration narratives. The family member with intellectual disabilities was described as being caught up in wider geo-political conflicts. Families continued to face challenges within their own communities and with accessing local services. Conclusions: Eliciting narratives about families' migration to their new homes can provide professionals with important information about family experiences of trauma and clarify hopes and expectations regarding service provision.

Background: Communicative health literacy is a term relating to the range of competencies and capabilities patients bring to the task of seeking information about their health and sharing it with others. This exchange can be problematic for people with intellectual disabilities. The aim of this review was to synthesize findings from interventions designed to improve health communication for people with intellectual disabilities. Materials and method: Available evidence was systematically reviewed, and findings from 14 articles were synthesized in a narrative review. Results and conclusions: Interventions addressed communicative aspects of health consultations, taking into account emotional factors and social context. Questions remain about how such interventions might impact on real-life health consultations and how issues of power might be resolved.

Health literacy research and scholarship has largely overlooked the experiences of people with intellectual disabilities (ID), though growing concern about the health inequalities they face has increasingly given rise to health promotion interventions for this group. However, these interventions reference a rather limited vision of health literacy and largely fail to offer people with ID opportunities to develop capabilities to interact with health information in a more critical manner or to develop their understandings of how the wider social context impacts on their own experiences of health and health care. In this paper I offer some explanations for why people with ID have been excluded from the critical health literacy field. I suggest ways that a critical health literacy frame can advance understandings of (1) what literacy in general means for people with ID; (2) what it means for them to take part in critical health literacy practices, and (3) the nature of health texts--what they are and what they do for people with ID. I conclude with remarks about what involvement in critical health literacy initiatives might offer people with ID and also what a consideration of the experiences of people with ID can offer critical health literacy theorizing and research.

Background: This study reflects a growing concern with the placement of people with intellectual disabilities and complex mental health problems in out of area placements at a distance from their families and communities. Materials and methods: We interviewed service users (n = 17) living in out of area in-patient psychiatric units using a semi-structured interview as part of a service user consultation process. The questions addressed safety and security, food, facilities, day time activities, education, opportunities for socialization, clinical, cultural and religious needs, carer involvement and access to information. Service users were also asked where they would prefer to live if they were to leave the hospital. Results: Although there were some positive stories, service user responses suggested limited opportunities for engagement in therapeutic or educational experiences, for building supportive relationships with staff or other residents, for developing religious and cultural identities or for enhancing family relationships. Conclusions: Whilst many of the issues raised by participants will be familiar to critics of institutional care, being placed at a distance from home is likely to put an additional strain on relationships with family members and limit opportunities to engage in practices valued by specific ethnic minorities. Commissioners and managers of community intellectual disability services should bear in mind the perspective of service users with complex mental health needs, and take seriously the drawbacks in placing individuals out of area. (Contains 1 table.)

When patients with intellectual disabilities (ID) attend a General Practice annual health check, current guidance directs health-care practitioners (HCPs) to involve them as much as possible as informants on their health. However, previous research based on interviews with participants suggests that during health consultations their communicative contributions of patients with ID may be sidelined in favor of information provided by caregivers perhaps because of HCPs' uncertainties about how to address the communication needs of these patients. The aim of this study was to establish, within naturally occurring health consultations, who HCPs select to answer their questions during health checks – patients with ID or their companions – and who actually answers. A nonconsecutive case series of primary care annual health checks involving patients with ID and their companions (n = 24) was conducted. Health checks were video-recorded and analyzed using tools of Conversation Analysis. We found that HCPs consistently selected patients with ID to answer their questions and patients then responded without significant gaps or dyfluencies in the immediate next turn at talk 70.1% of the instances. Companions were selected to respond in 9.3% of the total question-answer sequences recorded. Family members were more likely to be chosen as the addressee of HCP questions, compared to staff companions. They were also more likely to intervene to answer questions that had been directed at the patient. We conclude that health communication with patients with ID need not necessarily pose insurmountable challenges for HCPs, though the structure of the health check, with many questions requiring only a yes/no response may have reduced the communicative demand on patients. More research is needed to investigate how HCP involve patients with ID in more extensive health information exchange or health decision-making. [ABSTRACT FROM AUTHOR]

Background The proliferation of 'accessible information' for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities. Objective To review and synthesize the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach. Search strategy Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. Inclusion criteria Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities. Data extraction and synthesis We organized the papers into five groups according to similarity in authors' writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organizational identities. Main results The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualized materials, (ii) literacy as decontextualized skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation. Conclusions Individually tailored information is more likely to meet personalized health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups. [ABSTRACT FROM AUTHOR]

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities ( LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting 'child welfare inequalities'. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities ( CASSRs) for 2013-2014 and from CASSR index of multiple deprivation ( IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level. [ABSTRACT FROM AUTHOR]