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BackgroundPhotovoice 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.MethodsWe 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.FindingsThe 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.ConclusionPhotovoice 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.

People with intellectual disabilities (ID) experience marked health inequalities. This is attributable, at least in part, to suboptimal healthcare communication with health care practitioners (HCPs) whereby patients with ID and HCPs struggle to understand each other. Companions who attend healthcare appointments with patients with ID can support the communicative exchange between patient and HCP, but their involvement can have unintended consequences. This article uses Conversation Analysis (CA) to analyse video-recorded data from primary care health checks involving 24 patients with ID. This method shows that companions use their linguistic and experiential resources to intervene as ‘brokers’ to address real or potential threats to mutual understanding between patients with ID and HCPs. Their interventions can fill in the gaps in knowledge and understanding of the other parties, but also run the risk of deskilling the others in the interaction, by relieving them of the obligation to address communication breakdown directly themselves.

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 e...

This chapter started life as a short paper published in Clinical Psychology Forum in 2018, which I was then invited to present at the 2019 annual conference for the British Psychological Society (BPS) Division of Clinical Psychology (DCP) as part of a symposium on Racism, Psychology and Invisibility brought together by Craig Newnes. The choice of the last word – ‘invisibility’ – reflected the frustration that I and others presenting at the symposium felt at the reluctance at naming racism as a force experienced by our service users, in my case service users with learning disabilities and their families and supporters, and ever present in the institutions where we worked.

How do health and social care professionals deal with undecipherable talk produced by adults with intellectual disabilities (ID)? Some of their practices are familiar from the other-initiated repair canon. But some practices seem designed for, or at least responsive to, the needs of the institutional task at hand, rather than those of difficult-to-understand conversational partners. One such practice is to reduce the likelihood of the person with ID issuing any but the least repair-likely utterances, or indeed having to speak at all. If they do produce a repairable turn, then, as foreshadowed by Barnes and Ferguson’s (2015) work on conversations with people with aphasia, their interlocutors may overlook its deficiencies, respond only minimally, simply pass up taking a turn, or deal with it discreetly with an embedded repair. When the interlocutor does call for a repair, they will tend to offer candidate understandings built from comparatively flimsy evidence in the ID speaker's utterance. Open-class repair initiators are reserved for utterances with the least evidence to go on, and the greatest projection of a response from the interlocutor. We reflect on what this tells us about the dilemma facing those who support people with intellectual disabilities.

This paper explores the kinds of identities clinical psychology (as an institution and sets of discourses and practices) makes available to people with learning disabilities regarding race, culture and ethnicity, and how our own positionings as clinical psychologists are implicated in these.

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.

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.

Creation of jargon-free Easy Read health texts, incorporating carefully chosen words and images, is promoted as a way of removing health access barriers for people with intellectual disabilities. U...

BackgroundPeople 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.MethodTen 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.ResultsThe 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.ConclusionsFindings 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.

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.

Background The Improving Access to Psychological Therapies (IAPT) service was established to address common mental health problems among the English population in a timely manner in order to counter the social and economic disadvantage accompanying such difficulties. Using the concept of candidacy, we examined how the legitimacy of claims by people with intellectual disabilities to use this service is facilitated or impeded. Method We used a sequential mixed methods design. We completed 21 interviews with a range of stakeholders, including people with intellectual disabilities and their carers. Themes from the interviews were used to design an online survey questionnaire that was returned by 452 staff from IAPT and specialist intellectual disability services. Results Using the candidacy framework, we noted that eligibility and access to IAPT were achieved through dynamic and iterative processes of negotiation involving people with intellectual disabilities and their supporters on one side and IAPT staff and service structures on the other. Barriers and facilitators were apparent throughout the seven dimensions of candidacy (identification, navigation, permeability of services, appearances, adjudications, offers and resistance and operating conditions) and were linked to discourses relating to the character and purpose of IAPT and specialist intellectual disability services. Conclusions Opportunities exist for some people with intellectual disabilities to assert their candidacy for IAPT input, although there are barriers at individual, professional, organisational and structural levels. More attention needs to be paid to how principles of inclusiveness are operationalised within IAPT teams and to the mental health facilitation role of specialist intellectual disability staff.

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.

Background changing attitudes, alongside integration, more independent living and recognition of rights to family life have meant a steady rise in women with intellectual disabilities becoming pregnant. However, existing evidence shows that women with intellectual disabilities are less likely to seek or attend for regular antenatal care. This population experiences poorer maternal wellbeing and worse pregnancy outcomes compared to the general population, including preterm and low-birthweight babies. Purpose to identify and review the existing evidence on the provision of antenatal care among women with intellectual disabilities. Methods a systematic search strategy was formulated using key Medical Sub-Headings terms and related text words for pregnancy, antenatal care and intellectual disability. Comprehensive searches dating back to 1980 using pre-determined criteria followed by a hand search of reference lists and citations were undertaken. Data were extracted using a data extraction form and methodological quality assessed using the framework developed by Caldwell et al. (2011). A three stage textual narrative synthesis was used to integrate the findings from the included studies. Results searches identified 16 papers that met the inclusion criteria. A majority of the papers focused on women׳s experience of pregnancy and antenatal care with a paucity of papers identified on midwives knowledge and experience. The four broad themes of the analysis and synthesis performed included: In the Family Way (׳I׳ve a baby inside. I׳ve got a life inside of me.׳); Knowledge and advocacy (׳…everyone was looking at one another and no one was talking to me…׳); Midwives educational needs (׳…helpful to have guidance…׳) and Midwives Attitudes (׳…women with [intellectual disabilities]…should not be pregnant׳). Key conclusions and implications for practice significant gaps in the evidence base were apparent, however evidence was identified which showed that intellectually disabled pregnant women struggle to understand antenatal information communicated during pregnancy which was often text based. Maternity care providers need to make adjustments to their services so that antenatal communication, information and care is appropriate for this group of women. Midwives identified that they lacked knowledge in this area and wanted antenatal guidance on how to meet the care and communication needs of women with intellectual disabilities.

Objective We analyse, for the first time, how companions intervene in the answers that an adult patient with intellectual disabilities gives to their medical practitioner in primary care. Methods Video records of 25 health-check consultations in a large multi-ethnic city in the UK were analysed with the qualitative methods of Conversation Analysis. Results We found that companions' interventions in patients' answers fell along a gradient of low to high entitlement, from mere hinting to outright direct take-over. Conclusion Companions have to manage the dilemma of displaying information which is the proper domain of the patient: encroachment on the patient's epistemic rights versus the needs of the medical practitioner. Practice Implications Practitioners may need to check the patients themselves when their companions intervene at the most assertive end of the gradient of help.

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.

BackgroundLittle 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.MethodSix 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.ResultsBoth 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.ConclusionsBangladeshi 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.

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 th...

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.

Background Little has been published regarding the views of family members of people with intellectual disabilities who are being cared for in out-of-area psychiatric hospitals. This study explores this area with specific reference to whether culturally appropriate services were being provided. Materials and Methods Sixteen family members were interviewed about their views on the care their relative or partner was receiving in an out-of-area hospital. Transcripts were then analysed by the study team and themes identified. Results Families expressed a wide range of views regarding out-of-area hospital care. Important themes identified were feelings of shame, concerns about safety, cultural needs not being met, lack of improvement and lack of involvement in care. Conclusions This study highlights areas of inpatient care that family members felt were important. Views on negative aspects of care should guide areas for quality improvement initiatives for inpatient services. © 2011 Blackwell Publishing Ltd.

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.

The care and treatment of vulnerable adults was the subject of regular public and media concern in 2011. This article discusses the potential impact of these concerns on community nursing practice and reflects on the ways in which such concerns may be discussed in professional development activities. It alerts nurses to the importance of considering the effects on patients and carers of exposure to negative findings from inquiries and inspections. It identifies ways in which professional development opportunities can be used to update general skills in safeguarding practice. These are likely to be of growing importance to the work of community nurses in the context of an ageing society and occasional potential conflicts between patients and carers. Keeping abreast of legal frameworks will be required of nurses if they are to advise and to advocate for their patients.

Though there has been a considerable expansion of interest in the health literacy concept worldwide, there has also been criticism that this concept has been poorly defined, that it stretches the idea of "literacy" to an indefensible extent and more specifically, that it adds little to the existing concerns and intervention approaches of the better established discipline of health promotion. This paper takes as a starting point the expanded model of health literacy advanced by Nutbeam (2000) and addresses these concerns by interrogating the concept of "critical health literacy" in order to draw conclusions about its utility for advancing the health of individuals and communities. The constituent domains of critical health literacy are identified; namely information appraisal, understanding the social determinants of health, and collective action, and as far as possible each are clearly delineated, with links to related concepts made explicit. The paper concludes that an appreciation of work undertaken in a range of different disciplines, such as media studies, medical sociology, and evidence-based medicine can enhance our understanding of the critical health literacy construct and help us understand its usefulness as a social asset which helps individuals towards a critical engagement with health information. There is some evidence that aspects of critical health literacy have indeed been found to be a resource for better health outcomes, but more research is needed in this area, both to develop quantitative and qualitative approaches to evaluating health literacy skills, and to offer convincing evidence that investment in programmes designed to enhance critical health literacy are worthwhile.

I argue that current conceptualisations of ‘reflection’ in practice have been adopted without much reflection on theoretical and epistemological underpinnings. By contrast, engaging in reflexivity may lead to opportunities for more critical and socially aware practice.

In this paper I argue for the involvement of clinical psychologists working in community learning disability teams (CLTDs) in the assessment of parents with learning disabilities. I suggest how engagement in this work and a deeper appreciation of the experiences of parents with learning disabilities and their children can contribute to richer conceptualisations of parenting and childhood.