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

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.

Aiming for equal access to maternity care for all.

The guidance 'Pregnancy and complex social factors' (National Institute for Health and Care Excellence (NICE) 2010) outlines that women with complex social factors are likely to have particular needs and may be faced with barriers to accessing care. This article describes a project to design and develop clear antenatal appointment sheets for various consultations with health professionals in maternity services in an attempt to meet the Royal College of Midwives (RCM) recommendation that: "Directors of midwifery services should develop resources in partnership with experts and disability advocates in different formats appropriate to need" (RCM 2007: 1). It highlights the rationale, methodology, ethics and findings from the project. The term 'learning disabilities' (LD) is used throughout this article as it is commonly used by services within the UK and internationally to describe people with intellectual disabilities.

Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review.

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.