Impediments to community‐based care for people ageing with intellectual disability in rural New South Wales

The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three‐round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community‐based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of ‘funding’, ‘training’ and ‘access to services’. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community‐based placement rather than premature admission to the congregate‐care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age.     

Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health‐related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age‐related health needs. The semi‐structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long‐term relationship with those they support was identified as being important to identifying any health‐related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health‐related communication.     

Perceptions of communication between people with communication disability and general practice staff

OBJECTIVE: To explore consultation between people with communication disability and General Practice (GP) staff from the perspectives of both patients and staff. BACKGROUND: Communication disability causes a particular problem in primary care. This issue has not yet been investigated from the perspective of both patients and GP staff. DESIGN: Eight focus groups were held - four with GP practices, two with people with intellectual disability and two with people who had had a stroke. Picture symbols and Talking Mats, a visual communication framework, were used to assist the participants with communication disability. Discussions were audio recorded and analysed thematically. PARTICIPANTS: Twenty GP staff, 12 people with aphasia and six people with learning disability were interviewed.RESULTS: GP staff expressed frustration with not being understood and not understanding but there was a lack of awareness of the reasons behind these difficulties. They all said they mainly relied on carers. They recognized the significance of poor communication in terms of access to health services and agreed that the extent of the problem was greater than they had previously believed. People with communication disability described significant problems before, during and after the consultation. Although some acknowledged that they needed help from their carer, most objected to staff speaking to the carer and not to them. CONCLUSIONS: The main priorities for GP staff were the need for relevant training and simple resources. The main priorities for people with communication difficulty were continuity of staff, trust, better GP staff communication skills, and less reliance on carers.     

Self‐reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5‐year follow‐up study

Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self‐reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self‐reported care needs from baseline to follow‐up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5‐year follow‐up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2–36.1) had a suspected intellectual disability. For both groups, between baseline and follow‐up, the number of ‘unmet care needs’ decreased significantly and the number of ‘no care needs’ increased significantly, while at follow‐up, participants with a suspected intellectual disability reported ‘no care needs’ on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow‐up, ‘met care needs’ decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow‐up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those without a suspected intellectual disability. Providing care to homeless people with a suspected intellectual disability might require ongoing care and support, also after exiting homelessness. Support services should take this into account when considering their care provision and planning of services.     

Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

Factors Associated with Obesity and Coronary Heart Disease in People with Intellectual Disabilities

Advances in health care for people with intellectual disabilities (ID) that have resulted in increased longevity also force health care providers, researchers, and policymakers to question the adequacy of chronic disease management for the growing number of middle aged and elderly persons in this population. We report on sociodemographic and clinical factors associated with obesity, hypertension, hypercholesterolemia, and diabetes mellitus in an ethnically/racially diverse sample of people with ID in New York City. Administrative and chart review data were collected from a community-based specialty medical practice for people with intellectual disabilities. Adult subjects were included if they had an intellectual disability, lived in the community either independently or with relatives, received all of their planned, outpatient health care services though this practice, and had a primary care visit within the study period. One hundred twenty-six (43.0%) persons were obese, 58 (19.9%) had hypertension, 77 (26.5%) had hypercholesterolemia, and 13 (4.5%) had diabetes mellitus. Age, gender, and BMI (for the latter three conditions) were the most consistent risk factors. Intellectual functioning and behavioral problems were not associated with greater odds of these conditions. This study provides crucial information for improving community-based primary care for people with intellectual disabilities. Specifically, these findings highlight the importance of constructing innovative strategies to mitigate chronic disease risk factors in this population that involve community-based case management service providers who can help adults with ID and their families adopt needed lifestyle and behavior changes.     

Positive community responses to an arts–health program designed to tackle diabetes and kidney disease in remote Aboriginal communities in Australia: a qualitative study

Objective : The Western Desert Kidney Health Project (WDKHP) is an innovative clinical screening, arts–health and community development program, staffed by Aboriginal health workers. The WDKHP is aimed at prevention and early detection, improving the chance of better management of kidney disease among people in 10 predominantly Aboriginal communities in rural Western Australia. This paper aimed to understand community responses to the WDKHP in three of these communities. Methods : Interviews were undertaken with 26 Aboriginal people living in three remote communities. Community responses were analysed with attention to the social organisation of participants in each community and a focus on the perspectives of key groups, identified here as ‘Community Leaders’, ‘Homelanders’, ‘Refuge Seekers’ and ‘Dislocated’. Results : Participants from all groups reported that the WDKHP was highly acceptable, and an effective means of drawing attention to the need for prevention, early detection and management of diabetes and kidney disease. The integration of Aboriginal health workers to explain the project contributed to the high rates of participation in clinical screening. Conclusions : Outreach clinical services can be an appropriate method of engaging people in remote communities in addressing diabetes and kidney disease. Implications : The remote community setting can act as an ‘enabler’ of healthy lifestyle for Aboriginal people, particularly when augmented by well‐designed outreach programs.     

Risks to home care workers: Professional perspectives

Care at home is fundamental to community care policy, but the simultaneous growth of health and safety regulation has implications for home care services because of the duty of employers towards home care workers. This grounded theory study set in Northern Ireland used data from 19 focus groups and nine semi-structured interviews with a range of health and social services professionals and managers to explore perspectives on planning long term care for older people. Home care workers faced a wide range of hazards in the homes of clients, who themselves were faced with adapting their living habits due to their changing health and care needs and ‘risks.’ Creative approaches were used to ensure the health and safety of home care workers and simultaneously to meet the choices of clients. Staff experienced feelings of conflict when they judged it necessary to impose their way of providing home care and thus impose their values on clients to create a safe working environment. There was variation between and within organizations in terms of the staff focus on client needs or on their employer responsibility towards home care workers. The planning of home care services must take account of both the choices of clients and the hazards facing home care staff.     

The delivery of healthy lifestyle interventions for people with disability living in supported accommodation: a scoping review of intervention efficacy and consumer involvement

BackgroundPeople with disability living in supported accommodation experience health disparities that may be partly attributed to sedentary lifestyle behaviors and poor dietary quality. Healthy lifestyle interventions have been suggested as a method of health promotion for this population; however, a synthesis of their efficacy has not yet been conducted.ObjectiveThe primary aims were to (1) identify healthy lifestyle interventions delivered to people with disability living in supported accommodation and (2) examine their efficacy in supporting health and well-being. A secondary aim was to explore whether people with disability have been involved in the codesign of these interventions.MethodsA scoping review was conducted following the Joanna Briggs Institute's guidance for conducting scoping reviews, and six databases were searched from January 2011 to November 2021.ResultsThirty-two studies were included. Identified intervention types included training and education, exercise programs, and multicomponent interventions. A broad range of outcomes were examined; however, findings regarding efficacy were overall mixed and limited due to significant heterogeneity and the underreporting of consistently measured outcomes. The codesign of interventions in consultation with people with disability was underexplored.ConclusionsHealth promotion training for staff and tailored education for people with disability hold promise in creating a care environment that supports a healthy lifestyle. The paucity of interventions developed in consultation with people with disability is concerning and highlights the importance of meaningful co-design. The development of a theoretically informed intervention that is codesigned and addresses the broader social determinants that influence health behavior is recommended.     

Self-rated health and quality of life in adults attending regional disability services in Ireland

BackgroundThere is limited background information on self-rated health in people with disability in Ireland. This paper examines self-rated health scores and dimensions of functioning in people attending disability services and compares scores to the general population in Ireland, which has not been done before.MethodsFace-to-face interviews were carried out with 247 adults with intellectual disability and 180 with physical or sensory disability attending regional residential, day activity, or training disability centres in the East Coast Area of Ireland. EuroQol ED-5Q was used to assess five dimensions of functioning and quality of life, supplemented by questions taken from the national population study on general health, mental health, and quality of life.ResultsClients with intellectual disability scored their quality of life significantly higher than the adult general population. They scored their mental health significantly lower compared with clients with physical/sensory disability. Compared to clients with intellectual disability, and to the general population, clients with physical or sensory disability scored their quality of life significantly lower. They had more problems in all EuroQol ED-5Q dimensions (mobility; self-care; being able to carry out one's usual activities; pain; and anxiety) than both the general population and clients with intellectual disability.ConclusionThese results give an insight into self-rated health and quality of life of regional disability services attendees. Findings provide an indicator of health needs and provide a baseline to measure the impact of interventions. Further elucidation of the relationship between functional impairment and quality of life in those with disability is needed. Factors affecting self-rating of health in people with intellectual disabilities need further exploration.     

Health promotion and intellectual disability: listening to men

Taking responsibility for your own health has been a central tenet of public health policy internationally for a number of decades. Governments in the UK and internationally continue to promote a plethora of health promotion strategies, encouraging individuals and communities to adopt healthy lifestyle choices. Although it is widely recognised that men are not as proactive in seeking out medical help or taking on health promotion advice as women, limited gender‐sensitive research exists in the field of intellectual disability. Despite many health promotion policy and practice strategies targeted at this population, little research exists exploring whether men with intellectual disability acknowledge health promotion advice. The study aimed to explore how men with mild‐to‐moderate intellectual disability understood and perceived their health and what health promotion messages they acted upon. The study was based on a participatory approach which enabled 11 men with intellectual disability to contribute as steering group members and as participants through one‐to‐one interviews. Data were collected between September 2011 and July 2012. Thematic analysis was undertaken. The participants demonstrated a capacity to understand their own health. This was inclusive of a concern about associating being obese with being unhealthy. The participants reported good relationships with their general practitioners (GPs) and felt valued, in particular when the GP was prepared to offer specific intellectual disability and health promotion advice. More gendered research inclusive of the views of this male population is required and the study reiterates the importance of promoting the health of men and women with intellectual disability.     

‘I’m on the train and I can't stop it': Western Canadians' reactions to prediabetes and the role of self‐compassion

Prediabetes, a condition characterised by impaired glucose regulation, is on the rise worldwide. This condition puts people at risk for cardiovascular disease, and 50% of people with prediabetes will develop type 2 diabetes (T2D). People with prediabetes can reduce their risk of developing T2D through lifestyle changes such as regular physical activity and healthy eating. However, the experience of health risks can be associated with negative reactions that can undermine people's ability to self‐regulate the health behaviours that would reduce such risk. Self‐compassion, or treating oneself kindly in the face of challenge, is known to help people manage negative emotions and facilitate self‐regulation. Therefore, self‐compassion may be helpful for people with prediabetes who have to manage their health behaviours in the context of a health threat. The purpose of this study was to explore how people, from a small Canadian city who learn that they have prediabetes, react emotionally to their prediabetes diagnosis. We also explored participants' receptivity to applying self‐compassion in the context of their prediabetes. Twenty‐one adults, recently notified by their doctors as having HbA1c scores indicative of prediabetes (M_age = 57.76, SD = 5.43), engaged in a semi‐structured interview between June 2017 and January 2018. Inductive thematic analysis was used to analyse the data and four themes emerged. Participants' reactions to learning that they had prediabetes were characterised by (a) distress and concern, (b) downplay of T2D risks, (c) guilt and shame, and participants were receptive to (d) self‐compassion as a beneficial approach to take in relation to their prediabetes. Findings suggest that people experience negative reactions to their prediabetes diagnosis yet are receptive to self‐compassion, which could mitigate these reactions. These findings can inform lifestyle behaviour change programmes for individuals living with prediabetes by providing a better understanding of their perspectives of disease diagnosis.     

Integrating end of life care into services for people with an intellectual disability

End-of-life issues encompass old age, terminal illness, dying, grief, mourning and bereavement. Such issues have broad impact on older adults with intellectual deficits, their families, friends, roommates, and formal caregivers. As increasing numbers of people with a intellectual disability survive into old age, social workers regularly encounter end of life situations among very diverse individuals. Social workers in hospices, hospitals, and home care agencies are also asking how best to support people confronting the deaths of aging parents and family, housemates, friends, and staff, as well as their own terminal illnesses and dying. The history of care for people' with a disability documents their exclusion from supportive rituals and education about the end of life. Although existing systems of care continue to negatively impact people at the end of life, resources designed to assist people have expanded in the last decade. End of life education, grief counseling, bereavement services, support groups, crisis teams, and end of life committees are some of the strategies for providing more responsive end of life care.     

Perspectives of self‐direction: a systematic review of key areas contributing to service users’ engagement and choice‐making in self‐directed disability services and supports

Self‐directed disability support policies aim to encourage greater choice and control for service users in terms of the health and social care they receive. The proliferation of self‐directed disability support policies throughout the developed world has resulted in a growing amount of research exploring the outcomes for service users, and their families and carers. Our understanding of the issues faced by people with disabilities, particularly how they make health and social care decisions and the key areas that determine their engagement with service providers within a self‐directed environment is limited. A synthesis of research is timely and can provide knowledge for service users and health and social care support providers to ensure their successful participation. A systematic review guided by the PRISMA approach explored (i) the key areas determining service users’ engagement with self‐directed disability services and supports, and (ii) how service users make informed decisions about providers. In October 2014 and April 2016, three databases – MEDLINE, CINAHL and Web of Science – were searched for research and review articles. Eighteen sources met the search criteria. Findings were mapped into either: key areas determining service user engagement, or service users’ informed decision‐making. Findings concerning key areas determining engagement fell into three themes – personal responsibility for budgeting, personalised approaches, and a cultural shift in practice and delivery among service providers. Findings about decision‐making yielded two themes – supporting informed decision‐making and inhibiting informed decision‐making. Literature suggests that self‐directed models of care may provide service users with increased control over the services that they receive. Increased control for some service users and their families requires independent external decision‐making support, particularly around the domains of budgeting, planning and hiring. Future research must continue to investigate the perspectives of service users pertaining to their engagement, as their participation is central to the effectiveness of the approach.     

Training in Sexuality and Relationships: An Australian Model

This article examines some of the dominant discourses which impacted on the process of developing a curriculum for staff working with people with an intellectual disability in the area of relationships and sexuality within a medium sized Government bureaucracy providing services to people with a disability. Constructions of sexuality as being solely a biological function, sex as dangerous and sex as penetration are challenged as are some of the dominant discourses of learning.     

An examination of the role of clinical psychology in meeting the needs of young disabled clients and their families/carers

This paper examines the views of clients with a physical disability, general practitioners and staff working in health and social work physical disability services about the needs of young disabled people. The most common area of disability seen by GPs was respiratory, followed by cardiac problems and stroke. With the exception of cardiac patients a third to over half of GPs felt that the needs of the identified groups were not being adequately met, in particular the needs of individuals with progressive neuromuscular problems. Over a quarter of clients felt that their needs were not being adequately met. Ninety-five percent of GPs and 100% of staff identified psychological needs of clients. For clients themselves, physical needs are ranked highest, with over 33 percent identifying psychological problems, 50 percent neuropsychological problems and 25 percent psychosexual difficulties as priority needs. In relation to carers, over 90 percent of GPs, 100% of staff and 50 percent of clients highlighted psychological needs. The majority of participants felt that clinical psychology had an important role to play in physical disability services. There was broad agreement on the areas of need which psychology would be seen to address. These were psychological needs, behavioural problems, neuropsychological problems and relationship/psychosexual difficulties. A high percentage of both staff and GPs also saw a role for clinical psychology in meeting the psychological, relationship and psychosexual needs of carers.     

Nursing the patient with developmental disability in hospital: roles of paid carers

Our aim in this narrative inquiry was to understand the roles of paid carers supporting adults with developmental disability and complex communication needs in hospital, from the perspectives of 15 paid carers, 15 adults with developmental disability, and 15 hospital nurses. Results demonstrated that paid carers have an important role in supporting the adult with disability, providing information, delivering basic care, and facilitating communication. Stories reflected paid carer volunteerism; lack of orientation of carers and hospital staff to the paid carers' roles; blurred role boundaries between paid carers, family carers, and nurses; and paid carers being uncertain about their own responsibilities for staff and patient safety. New policies and practice guidelines are needed to guide both health and disability services in clarifying paid carer roles and role boundaries, and to enable paid carers and hospital staff to work together effectively on the ward in the care of adults with developmental disability.     

‘We’re all wounded healers’: A qualitative study to explore the well‐being and needs of helpline workers supporting survivors of domestic violence and abuse

Domestic violence and abuse (DVA) can include physical, psychological, sexual, emotional or financial abuses, and is a globally widespread problem across all age groups, cultures and socioeconomic groups. Alongside the impacts of DVA experienced by survivors, there is a growing recognition that other people, who form the support network of survivors, may also be affected by the situation. Domestic violence organisations such as helplines are important third sector services supporting survivors. However, there has been little research into the impact on those providing the support. This qualitative study of domestic violence helpline workers explored their needs and well‐being. We used qualitative methodology, conducting interviews with staff recruited from a selection of different helplines who all undertook direct client‐focused work. The interviews used a semi‐structured format and followed a topic guide covering the training received before commencing work, self‐care strategies, the impact of work on their daily life and support offered by their employer. Ten helpline staff were interviewed, all female. Following analysis of the qualitative data, a number of themes emerged. Participants disclosed numerous ways in which their work challenged their well‐being, including burnout, impact on personal relationships, and lack of training and support at work. Participants used some self‐care strategies in order to “switch off” from work, but they also wanted clinical supervision to support them with the difficulties they experienced at work. This study suggests that helpline staff should receive more education about trauma triggers, and ongoing support to reduce the impact on their home and social life, thus improving mental well‐being and job satisfaction. This work begins the debate on the well‐being needs of frontline helpline workers, and whether better meeting these needs can facilitate the provision of better support.     

User involvement in the development of a health promotion technology for older people: findings from the SWISH project

Successive English government policies about older people’s health and well‐being aim to improve health and quality of life by promoting independence. Improving access to information and services that can improve health and well‐being and reduce health risks is central to the modernisation of health and social care. Most recently, tailored and person‐centred approaches with a strong emphasis on promoting health and well‐being are central to policy, including the proposals for ‘Life Checks’ and the recent emphasis on commissioning ‘community well‐being’. We carried out a qualitative study to identify the key aspects of social situations that affect health and well‐being, from the perspectives of older people and professionals, to enrich and expand an existing health risk appraisal tool so that it could be used for self‐assessment of health and social well‐being. This tool, Health Risk Appraisal in Older people (HRAO), has been evaluated in different European settings, including English general practice. Focus groups were recruited from general practice, older people’s forums, social care and voluntary organisations in two London boroughs where the HRAO tool had previously been tested. The social factors determining health that were prioritised by older people and service providers and recommended for inclusion in the health risk appraisal tool were recent life events, housing and garden maintenance, transport, both public and private, financial management, carer status & needs, the local environment and social networks and social isolation. This study has identified key social determinants of health that could usefully be added to ‘Life Checks’ for older people and that could also inform the commissioning of community well‐being. Modified with the addition of social domains, the HRAO technology could be a suitable tool to achieve current policy objectives.