Deborah Chinn

All Aspects of Health Literacy Scale (AAHLS): developing a tool to measure functional, communicative and critical health literacy in primary healthcare settings.

OBJECTIVE Our aim was to develop and pilot a tool to measure health literacy in primary health care settings, encompassing functional, communicative and critical health literacy. METHODS Following consultation with providers and users of primary health care we developed a fourteen-item self-report scale, which was piloted on 146 participants. The reliability, content and construct validity of the scale was investigated as well as relationships between scores on the scales and participant characteristics. RESULTS The overall scale had adequate reliability (Cronbachs alpha=0.74), though reliability of the subscales was less consistent. Principal component analysis indicated that scale items loaded on four factors, corresponding to skills in using written health information; communicating with health care providers; health information management and appraisal assertion of individual autonomy with regards to health. Overall scores and different subscale scores were associated with ethnic minority status, educational level, and self-rated health status, though the picture was complex. CONCLUSION Health literacy is a complex and evolving construct. Nevertheless, we succeeded in developing a brief measure relating to different health literacy competencies, beyond functional literacy skills. PRACTICE IMPLICATIONS Assessment using the AAHLS can provide important information for health care practitioners about the health literacy needs and capabilities of service users.

Using ‘candidacy’ as a framework for understanding access to mainstream psychological treatment for people with intellectual disabilities and common mental health problems within the English Improving Access to Psychological Therapies service

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.

Critical health literacy health promotion and people with intellectual disabilities

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.

Easy read and accessible information for people with intellectual disabilities: Is it worth it? A meta-narrative literature review.

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.

Review of Interventions to Enhance the Health Communication of People With Intellectual Disabilities: A Communicative Health Literacy Perspective

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.

Learning how to be (a) patient: visual analysis of accessible health information leaflets for people with intellectual disabilities

Abstract 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. Using a social semiotic framework, this article explores the social construction of the patient with intellectual disabilities within a sample of adapted health texts, focusing on the visual images used. Images were coded and analysed according to dimensions suggested by Kress and van Leeuwen’s work on ‘visual grammar’. Images highlight the inclusion of patients with intellectual disabilities in mainstream healthcare settings. However, these patients are depicted as being inserted into somewhat idealized healthcare routines that are pre-determined and micro-managed through to completion. Consideration of risks and choices associated with healthcare use are downplayed. The article concludes that the care of patients with intellectual disabilities continues to constitute potential trouble for mainstream healthcare providers, rather than being an expected aspect of everyday practice.

Family and community in the lives of UK Bangladeshi parents with intellectual disabilities

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.