Findings of this study clearly identify the emotional, informational and practical supports required by these ageing family carers. These findings have national and international relevance in influencing how governments and service providers support parent and sibling carers to proactively plan for the future, and in the development of both in-home and out-of-home options when a family carer can no longer provide care. This is more urgent than ever given the growing numbers of older persons with intellectual disabilities in future decades.

The findings of this study suggest that greater emphasis needs to be placed upon the early identification of this hidden population by primary and secondary healthcare personnel, and also ID personnel. Such early identification may also diminish the long-established patterns of use and associated related-behaviours that have been reported within this paper.

BackgroundGlobally, people with intellectual disabilities and/or autism experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower than the general population, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy, and practice.AimTo investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism, or both, and/or their carers, to accessing and utilising primary health care for their physical and mental health needs.Design & settingAn integrative review was undertaken, which used systematic review methodology.MethodElectronic databases MEDLINE, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of the studies.ResultsSixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The main themes were: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes.ConclusionAdolescents and adults with intellectual disabilities and/or autism experience several barriers to accessing and utilising primary health care. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary health care.

Because of their enhanced predisposition for the development of diabetes this population merits particular attention with regards to screening for the onset of diabetes. The extent to which the quality of diabetes care indicators were achieved was variable but results suggest that for many people the indices were not met, that glycaemic control was poor, that only a quarter were of normal weight, that many were hypertensive and that almost a quarter had no record of their lipid levels. These findings provoke two important questions: first, who should be responsible for promoting diabetes management in this client group and second, how can service provision be tailored to better meet their needs? Greater collaborative working and education is required between ID services, primary healthcare and diabetes clinicians in order to promote the health and meet the quality indicators of diabetes care among this population.

Focus groups are used by researchers in the social and behavioural sciences to explore phenomena and are accepted as a legitimate qualitative methodology. The primary goal of focus groups is to use interaction data resulting from discussion among participants to increase the depth of the enquiry and reveal aspects of the phenomenon assumed to be otherwise less accessible. This article, the first of three articles on focus groups, examines the nature of focus groups, issues regarding planning focus groups, selecting participants and the size of the groups. This article is aimed at students who are undertaking research modules as part of their academic studies or writing a research proposal as well as at novice researchers who intend to use focus groups as a means of data collection.

Findings of this study show that health promotion and cancer prevention activities for people with ID may be less than optimal. The importance of staff training in order to raise knowledge and awareness is highlighted. Educating both staff and people with ID about the early signs and symptoms of cancer and the importance of a healthy lifestyle as a protective factor may help lead to more informed healthier lifestyle choices and lower cancer risk and morbidity.

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Aim To report on the outcomes of a pilot feasibility study of a structured self-management diabetes education programme targeting HbA 1c .Methods We conducted a two-arm, individually randomized, pilot superiority trial for adults with intellectual disability and Type 2 diabetes mellitus. A total of 66 adults with disabilities across the UK met the eligibility criteria. Of these, 39 agreed to participate and were randomly assigned to either the DESMOND-ID programme (n = 19) or a control group (n = 20). The programme consisted of seven weekly educational sessions. The primary outcome was HbA 1c level, and secondary outcomes included BMI, diabetes illness perceptions, severity of diabetes, quality of life, and attendance rates.Results This study found that the DESMOND-ID programme was feasible to deliver. With reasonable adjustments, the participants could be recruited successfully, and could provide consent, complete the outcome measures, be randomized to the groups and attend most of the sessions, with minimal loss to follow-up. The fixed-effects model, the interaction between occasion (time) and condition, showed statistically significant results (0.05 level) for HbA 1c ; however, the CI was large.Conclusion This is the first published study to adapt and pilot a national structured self-management diabetes education programme for adults with intellectual disability. This study shows it is possible to identify, recruit, consent and randomize adults with intellectual disabilities to an intervention or control group. Internationally, the results of this pilot are promising, demonstrating that a multi-session education programme is acceptable and feasible to deliver. Its effectiveness should be further tested in an adequately powered trial.