Diabetes in people with intellectual disabilities: A systematic review of the literature.

OBJECTIVE: To present an analysis of the evidence related to the prevalence of diabetes in people with intellectual disabilities (ID), their experiences of their condition and treatment and those of their carers. MATERIALS AND METHODS: A systematic literature review was conducted. A total of 22 studies exploring diabetes prevalence and 5 exploring views and experiences of diabetes in people with ID were identified and included. A narrative synthesis approach was utilised to amalgamate data extracted from the included studies regarding some 49,046 participants with ID and diabetes and 31 care professionals and family members across Europe, North America, New Zealand, Australia, China and Hong Kong. RESULTS: Prevalence rates of diabetes in people with ID were highly varied, ranging from 0.4% to 25%. 7 studies reported significantly higher rates of diabetes in people with ID than the general population. People with ID reported a basic understanding of diabetes and wanted to know more. Carers reported that they lack diabetes knowledge and do not routinely encourage diabetes self-management skills. Several studies neglected to report vital demographic information such as participants' level of ID (13 studies) and diabetes type (16 studies) and the quality of included prevalence studies was variable. CONCLUSIONS: Further research in this field is required, notably prevalence studies which control for participant demographics and personal situations to obtain more accurate diabetes prevalence rates in this population group. People with ID and diabetes should be encouraged to participate in future research and we recommend exploring the feasibility of adapting current mainstream diabetes management programmes for these individuals.

A study protocol for a pilot randomised trial of a structured education programme for the self-management of type 2 diabetes for adults with intellectual disabilities.

BACKGROUND: The need for structured education programmes for type 2 diabetes is a high priority for many governments around the world. One such national education programme in the United Kingdom is the DESMOND Programme, which has been shown to be robust and effective for patients in general. However, these programmes are not generally targeted to people with intellectual disabilities (ID), and robust evidence on their effects for this population is lacking. We have adapted the DESMOND Programme for people with ID and type 2 diabetes to produce an amended programme known as DESMOND-ID. This protocol is for a pilot trial to determine whether a large-scale randomised trial is feasible, to test if DESMOND-ID is more effective than usual care in adults with ID for self-management of their type 2 diabetes, in particular as a means to reduce glycated haemoglobin (Hb1Ac), improve psychological wellbeing and quality of life and promote a healthier lifestyle. This protocol describes the rationale, methods, proposed analysis plan and organisational and administrative details. METHODS/DESIGN: This trial is a two arm, individually randomised, pilot trial for adults with ID and type 2 diabetes, and their family and/or paid carers. It compares the DESMOND-ID programme with usual care. Approximately 36 adults with mild to moderate ID will be recruited from three countries in the United Kingdom. Family and/or paid carers may also participate in the study. Participants will be randomly assigned to one of two conditions using a secure computerised system with robust allocation concealment. A range of data will be collected from the adults with ID (biomedical, psychosocial and self-management strategies) and from their carers. Focus groups with all the participants will assess the acceptability of the intervention and the trial. DISCUSSION: The lack of appropriate structured education programmes and educational materials for this population leads to secondary health conditions and may lead to premature deaths. There are significant benefits to be gained globally, if structured education programmes are adapted and shown to be successful for people with ID and other cognitive impairments. TRIAL REGISTRATION: Registered with International Standard Randomised Controlled Trial (identifier: ISRCTN93185560 ) on 10 November 2014.

Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary.

BACKGROUND: In keeping with worldwide demographic changes and an ageing population, people with intellectual disabilities are living longer and all the evidence suggest that this trend will continue. This 'new' population of older people and their carers will pose challenges for health and social care providers. AIM: This paper presents a review of the literature on key issues influencing caregiving for older people with intellectual disabilities and their ageing family carers. METHODS: The review was undertaken using a framework adapted from the NHS Centre for Reviews and Dissemination. Papers were identified through the use of databases including CINAHL, Science Direct, PsychoInfo, Blackwell Synergy, the Cochrane Library and MEDLINE. FINDINGS: The key themes which emerged from the literature and which consequently form the basis of this review include: ageing family carers, future planning and support services. In the context of family caregiving, older people with intellectual disabilities represent a unique group insofar as they are unlikely to be married and therefore have no spouse or dependents to care for them in later life. As a result, parents (usually mothers) have to continue caring for their son or daughter with an intellectual disability as they both grow older, often resulting in a mutually dependent relationship. The caregiving situation is further complicated by poor emergency and future planning and by a lack of appropriate services for this group of individuals. CONCLUSIONS: In light of the emergence of a 'new' population of older people with intellectual disabilities, there is an urgent need to develop services and support structures which will enable these individuals and their ageing carers to 'age in place' and when this is no longer possible, to have appropriate alternatives that recognise the duality of their needs as older people and as people with intellectual disabilities. IMPLICATIONS FOR PRACTICE: Opportunities for supervision could be one way to increase individuals' awareness of their own role in the team.

Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability.

BACKGROUND: Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers' preferences for future care and the support systems required to make such future plans. METHODS: The study was conducted in one region of the United Kingdom with a high proportion of family carers. A mixed methods design was employed. In Stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers; aged 60-94 years. In Stage 2, 19 in-depth semistructured interviews were undertaken with a sample of carers to explore a range of issues around future planning. FINDINGS: Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. A third of these carers reported that their caregiving resulted in high levels of anxiety. The main preference of the carers was for the person to remain in the family home, with either the family and/or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. The majority of carers did not want their relative to move into an older people's residential/nursing facility. In the qualitative data, four main themes were identified around future planning: unremitting apprehension, the extent of planning, obstacles encountered and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future. CONCLUSION: 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.

Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography.

AIM: This paper is a report of a descriptive study of understanding of breast cancer and experiences of breast mammography among women with an intellectual disability. BACKGROUND: Despite the efforts of government policies and documents to ensure equal access to improve health screening for people with intellectual disability, the uptake for breast mammography in this population still remains lower than that of the general population. METHOD: A qualitative approach using four focus groups was undertaken with 19 women identified as having a borderline to moderate intellectual disability all of whom had received a breast mammography. Data collection took place in 2009. Analysis of the data was undertaken using thematic content analysis. RESULTS: The women's knowledge of breast cancer including associated risks, preventative factors and signs and symptoms were extremely limited with their sources of knowledge primarily coming from carers or nursing staff on receipt of an invitation for mammography. Although these women expressed a positive attitude towards their experiences of breast mammography, they also described negative feelings of fear and anxiety, attributed to a lack of understanding about the screening process. A lack of information and embarrassment were identified as the main barriers to screening for this group. CONCLUSION: This study highlights the need for accessible multi-format information in order to facilitate health promotion and education in women with intellectual disability, their family carers and healthcare staff working with this target group in order to enhance the knowledge and awareness of breast cancer and screening.

Community learning disability teams: developments, composition and good practice: a review of the literature.

This article presents the findings from a literature review related to community learning disability teams (CLDTs). Much of the existing literature on CLDTs is inspirational, theoretical or opinion based rather than evidence based. It was considered that current knowledge is insufficient to allow a systematic review; therefore a structured review of factors that impact on CLDTs was undertaken following some of the principles of a systematic review. The review covers historical and philosophical influences on the development of CLDTs; the structure and common composition of CLDTs; the main challenges facing CLDTs; and the barriers that impact on their effective working. Based on the available evidence a number of good practice suggestions are forwarded that have the potential to enhance the work undertaken by CLDTs, but it is acknowledged that there is a need for more research into the effectiveness of these teams.

The impact on mothers of bringing up a child with intellectual disabilities: a cross-cultural study.

BACKGROUND: Most research into the impact on mothers of having a child with an intellectual disability has been done in Western cultures. These mothers are at increased risk of stress, along with poorer health and weakened family relationships. Nurses are well placed to support these mothers. OBJECTIVES: (1) To describe across three different cultures-Irish, Taiwanese and Jordanian-the inter-relationships among three indicators of maternal well-being. (2) To identify the coping strategies of mothers and the professional and informal supports available to them. (3) To identify the variables that have a negative impact on maternal well-being and possible moderating influences on them. DESIGN: A survey approach with three groups of self-selected mothers. PARTICIPANTS: The characteristics of the child determined the inclusion criteria; namely aged 5-18 years with a diagnosis of intellectual disability of such severity that the children attended special schools or centres. In each country, the special services within particular geographical areas were approached and all families known to them were given the opportunity to participate. In all 206 mothers agreed to participate. METHODS: Mothers were interviewed individually at home or in the day centre attended by their child. They completed various rating scales of known reliability and validity. In addition they described in their own words, the impact the child had on their lives and how they coped. RESULTS: In all three countries, mothers experienced poor mental health, increased levels of child-related stress and poorer family functioning which the qualitative data further illuminated. Their child's behaviour problems were a major factor in this. The impacts on mothers' well-being were not alleviated by access to professional supports or use of coping strategies. CONCLUSIONS: Health professionals need to adopt family-centred approaches that embrace the support needs of mothers. Similar strategies would apply across all cultures although they must be responsive to individual need.

Community learning disability teams: perceived effectiveness, multidisciplinary working and service user satisfaction.

The locus of care for people with learning disabilities has shifted from institutional/residential care to community care, with Community Learning Disability Teams (CLDTs) providing support for people with learning disabilities, and their family caregivers, in the community. A survey of the perceived effectiveness of 145 CLDT members, 27 family caregivers and 21 people with a learning disability was undertaken. Findings suggest high levels of perceived effectiveness with the services provided by the CLDTs, but caregivers gave the lowest satisfaction ratings. Although overall effectiveness was rated highly there is no room for complacency. There was limited evidence to support the view that multidisciplinary CLDTs are more effective than unidisciplinary teams. Further research is required in this area and ongoing evaluation of the effectiveness of CLDTs is suggested.