Experiences of adults with intellectual disabilities accessing acute hospital services: A systematic review of the international evidence

Adults with intellectual disabilities experience significant physical and mental health needs when compared to their typically developing peers. Previous research evidences that many people with intellectual disabilities have negative encounters within acute hospitals. The aim of this systematic review was to identify the specific views and experiences of adults with intellectual disabilities when accessing acute hospital services arising from the available literature. The review commenced in June 2019 and was updated in May 2020. A systematic search of five electronic databases including CINAHL Plus, MEDLINE, Web of Science, SCOPUS and PsycINFO was undertaken. Studies published from 2014, peer-reviewed, written in English and referred to adults with intellectual disabilities aged 18 plus and acute hospital settings were included. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the Critical Appraisal Skills Programme quality assurance checklist were used to review all selected papers. Five studies from a total of 421 were deemed suitable for inclusion in the review as the voices of adults with intellectual disabilities were present. Poor communication from healthcare staff towards adults with intellectual disabilities emerged in four studies while the use of the hospital passport and the intellectual disability liaison nurse to significantly improve the hospital experience for adults with intellectual disabilities was identified in two of the studies. Following a systematic and thematic analysis of the studies, three main overarching themes emerged: communication; information sharing; and compassion and respect. Despite the national and international focus on improving healthcare for people with intellectual disabilities, this review highlights lack of communication, inadequate information sharing and issues related to compassionate care and respect. The review identifies the possibility that an increased use of hospital passports and an extension of the intellectual disability liaison nursing roles may enhance the hospital experience for people with intellectual disabilities.     

The factors associated with care‐related quality of life of adults with intellectual disabilities in England: implications for policy and practice

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care‐related QoL of people receiving publicly funded adult social care. This study explores relationships between QoL and non‐care‐related factors to identify relationships that could inform social care policy and practice. Cross‐sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self‐rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT‐QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk adjustment of scores to account for variation outside of the control of social care support.     

Senior manager decision‐making and interactions with frontline staff in intellectual disability organisations: A Delphi study

Very little is known of the activities of the most senior managers in organisations providing social care in the community to people with intellectual disabilities. Yet the importance of the focus and activities of senior managers in directing and supporting staff practice and staff experiences is likely to be central to an organisation's functioning and support provided for staff and service users. This study employed Delphi methodology with a panel of 11 senior managers, mostly chief executives, managing small to very large organisations providing support for people with intellectual disabilities, in the UK. Answering three rounds of questions, senior managers described their face‐to‐face and non‐face‐to‐face contacts with staff and decision‐making. Narrative data were subject to quantitative and thematic analysis. In the last round, themes were subject to quantitative analysis. Most contacts between senior managers and staff were in formal structured contexts and all managers used social media to promote the organisations' ambitions regarding good practice. The panel focused upon accessing and understanding the informal aspects of their organisations and staff factors. Decisions were both short‐term reactive and long‐term strategic and an effort to link these was felt to improve organisational functioning. A framework for understanding senior managers' activities emerged showing two sources of demands and opportunity, extra‐organisational focused upon meeting legal and regulatory demands and intra‐organisational focused upon understanding and influencing informal staff practices/experiences and cultures within their organisations.     

Clarifying the role of the mental health peer specialist in Massachusetts,USA: insights from peer specialists,supervisors and clients

Mental health peer specialists develop peer‐to‐peer relationships of trust with clients to improve their health and well‐being, functioning in ways similar to community health workers. Although the number of peer specialists in use has been increasing, their role in care teams is less defined than that of the community health worker. This qualitative study explored how the peer specialist role is defined across different stakeholder groups, the expectations for this role and how the peer specialist is utilised and integrated across different types of mental health services. Data were collected through interviews and focus groups conducted in Massachusetts with peer specialists (N = 44), their supervisors (N = 14) and clients (N = 10) between September 2009 and January 2011. A consensus coding approach was used and all data outputs were reviewed by the entire team to identify themes. Peer specialists reported that their most important role is to develop relationships with clients and that having lived mental health experience is a key element in creating that bond. They also indicated that educating staff about the recovery model and peer role is another important function. However, they often felt a lack of clarity about their role within their organisation and care team. Supervisors valued the unique experience that peer specialists bring to an organisation. However, without a defined set of expectations for this role, they struggled with training, guiding and evaluating their peer specialist staff. Clients reported that the shared lived experience is important for the relationship and that working with a peer specialist has improved their mental health. With increasing support for person‐centred integrated healthcare delivery models, the demand for mental health peer specialist services will probably increase. Therefore, clearer role definition, as well as workforce development focused on team orientation, is necessary for peer specialists to be fully integrated and supported in care teams.     

Service users' experiences and views of support for decision‐making

This article presents the findings from a qualitative, participatory research project which explored how people with intellectual disabilities and/or mental health problems have, or have not been, supported to make their own decisions. The aim of the research is to help inform how supported decision‐making, as required by Article 12 of the UN Convention on the Rights of Persons with Disabilities, can be effectively operationalised. The project provides an overview of experiences of support as well as identifying which supports are valued. It was conducted between July 2017 and July 2018 and was a partnership between disabled people, service providers and a University. It involved peer researchers interviewing 41 people with mental health problems and/or intellectual disabilities, in community settings, about their experiences and views of support. The key findings include that decision‐making is a central aspect of people's lives. Participants discussed the positive role which decision‐making can have but also how it felt when they were not supported to make their own decisions. Participants said that there were three main things that make decision‐making harder: the type of decision; the role of other people; and what the outcome might be. Time was consistently identified as a very important factor. In terms of support, people said that they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. There was very little mention of existing, more formal processes of support such as advance decisions or care planning. The peer researcher aspect of the project was valued by participants. The main implications of the research are for how support for decision‐making should be provided including the need for an individualised approach as the support needed varies across decisions, time and people.     

Factors associated with constructive staff-family relationships in the care of older adults in the institutional setting

Background Modern healthcare philosophy espouses the virtues of holistic care and acknowledges that family involvement is appropriate and something to be encouraged due to the role it plays in physical and emotional healing. In the aged care sector, the involvement of families is a strong guarantee of a resident's well-being. The important role family plays in the support and care of the older adult in the residential aged care environment has been enshrined in the Australian Commonwealth Charter of Residents' Rights and Responsibilities and the Aged Care Standards of Practice. Despite wide acknowledgement of the importance of family involvement in the healthcare of the older adult, many barriers to the implementation of participatory family care have been identified in past research. For older adults in the healthcare environment to benefit from the involvement of their family members, healthcare professionals need an understanding of the issues surrounding family presence in the healthcare environment and the strategies to best support it. Objectives The objectives of the systematic review were to present the best available evidence on the strategies, practices and organisational characteristics that promote constructive staff-family relationships in the care of older adults in the healthcare setting. Specifically this review sought to investigate how staff and family members perceive their relationships with each other; staff characteristics that promote constructive relationships with the family; and interventions that support staff-family relationships. Search strategy A literature search was performed using the following databases for the years 1990-2005: Ageline, APAIS Health, Australian Family and Society Abstracts (FAMILY), CINAHL, Cochrane Library, Dare, Dissertation Abstracts, Embase, MEDLINE, PsycINFO and Social Science Index. Personal communication from expert panel members was also used to identify studies for inclusion. A second search stage was conducted through review of reference lists of studies retrieved during the first search stage. The search was limited to published and unpublished material in English language. Selection criteria The review was limited to studies involving residents and patients within acute, subacute, rehabilitation and residential settings, aged over 65?years, their family and healthcare staff. Papers addressing family members and healthcare staff perceptions of their relationships with each other were considered for this review. Studies in this review also included those relating to interventions to promote constructive staff-family relationships including organisational strategies, staff-family meetings, case conferencing, environmental approaches, etc. The review considered both quantitative and qualitative research and opinion papers for inclusion. Data collection and analysis All retrieved papers were critically appraised for eligibility for inclusion and methodological quality independently by two reviewers, and the same reviewers collected details of eligible research. Appraisal forms and data extraction forms designed by the Joanna Briggs Institute as part of the QARI and NOTARI systematic review software packages were used for this review. Findings Family members' perceptions of their relationships with staff showed that a strong focus was placed on opportunities for the family to be involved in the patient's care. Staff members also expressed a theoretical support for the collaborative process, however, this belief often did not translate to the staff members' clinical practice. In the studies included in the review staff were frequently found to rely on traditional medical models of care in their clinical practice and maintaining control over the environment, rather than fully collaborating with families. Four factors were found to be essential to interventions designed to support a collaborative partnership between family members and healthcare staff: communication, information, education and administrative support. Based on the evidence analysed in this systematic review, staff and family education on relationship development, power and control issues, communication skills and negotiating techniques is essential to promoting constructive staff-family relationships. Managerial support, such as addressing workloads and staffing issues; introducing care models focused on collaboration with families; and providing practical support for staff education, is essential to gaining sustained benefits from interventions designed to promote constructive family-staff relationships.     

The providers’ profile of the disability support workforce in New Zealand

To understand one of the predominant groups supporting people with disabilities and illness, this study examined the profile of New Zealand paid caregivers, including their training needs. Paid caregivers, also known as healthcare assistants, caregivers and home health aides, work across several long‐term care settings, such as residential homes, continuing‐care hospitals and also private homes. Their roles include assisting with personal care and household management. New Zealand, similar to other countries, is facing a health workforce shortage. A three‐phased design was used: phase I, a survey of all home‐based and residential care providers (N = 942, response rate = 45%); phase II, a targeted survey of training needs (n = 107, response = 100%); phase III, four focus groups and 14 interviews with 36 providers, exploring themes arising from phases I and II. Findings on 17 910 paid caregivers revealed a workforce predominantly female (94%), aged between 40 and 50, with 6% over the age of 60. Mean hourly pay NZ$10.90 (minimum wage NZ$10.00 approx. UK3.00 at time of study) and 24 hours per week. The national paid caregiver turnover was 29% residential care and 39% community. Most providers recognised the importance of training, but felt their paid caregivers were not adequately trained. Training was poorly attended; reasons cited were funding, family, secondary employment, staff turnover, low pay and few incentives. The paid caregiver profile described reflects trends also observed in other countries. There is a clear policy direction in New Zealand and other countries to support people with a disability at home, and yet the workforce which is facilitating this vision is itself highly vulnerable. Paid caregivers have minimum pay, are female, work part‐time and although it is recognised that training is important for them, they do not attend, so consequently remain untrained.     

Voices of care for adults with disabilities and/or mental health issues in Western Canada: what do families and agencies need from each other?

Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age‐related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration.     

Experiences and perceptions of residential and home care services among older lesbian women and gay men in Australia

The needs of older lesbian and gay people regarding access and use of aged‐care services remain underresearched. This paper reports the findings of 33 qualitative interviews with older lesbian women and gay men about their perceptions and experiences of residential aged‐care and home‐based aged‐care services in Australia. The focus of this paper is their preparedness for using aged‐care services. The results highlight that participants had a number of concerns related to accessing residential‐care services in particular, including perceptions of a lack of inclusivity and concerns of potential for discrimination and hostility, loss of access to community and partners, decreased autonomy and concerns relating to quality of care and the potential for elder abuse. Participants noted a number of strategies they employed in avoiding residential‐care services, including the use of home‐care services, renovating the home for increased mobility, moving to locations with greater access to outside home‐care services, a preference for lesbian/gay‐specific housing and residential‐care options if available, and the option of voluntary euthanasia to ensure dignity and autonomy. Participants, on the whole, were hopeful that they would never require the use of residential‐care services, with some believing that having current good health or the support of friends could prevent this from happening. The findings suggest that older lesbian and gay people have a variety of concerns with aged‐care and may need additional support and education to improve their perceptions and experiences of services, whether these are needed presently or in the future.     

Uncovering health care inequalities among adults with intellectual and developmental disabilities

Even as attention is drawn to the increasing number of individuals who experience health inequalities in the United States, little is known about the health inequalities experienced by individuals with intellectual and developmental disabilities. Current disability research mainly focuses on physical disabilities. This article discusses the health disparities experienced by individuals with intellectual and developmental disabilities.The authors conducted focus groups with parents/guardians, self-advocates, and community support professionals and key informant interviews with health care professionals to assess the needs of this less frequently documented population. Results from this study indicate that individuals with intellectual and developmental disabilities face health care disparities and inequities in four areas: access, knowledge, communication, and quality.     

Paths to leisure physical activity among adults with intellectual disabilities: self-efficacy and social support

PURPOSE: This study tested a path model that included perceptions of social support and self-efficacy for leisure physical activity and leisure physical activity participation among adults with intellectual disabilities. DESIGN: A cross-sectional design was used. Data was collected via oral interview. SETTING: Community-based group, supported-living settings in one Midwestern state. SAMPLE: A total of 152 adults with mild to moderate intellectual disabilities, which provided a 39% response rate. MEASURES: Self-efficacy and social support (from family, residential staff and peers with disabilities) for leisure physical activity were assessed using self-reported scales. Leisure physical activity participation was measured with a self-reported checklist of the frequency of leisure physical activity participation. ANALYSIS: Path analysis was conducted for the entire sample and was repeated for younger and older age groups. RESULTS: The hypothesized model fit the data from each group. Social support and self-efficacy predicted physical activity participation, and self-efficacy served as a mediator between social support and physical activity. Significant sources of social support differed between groups; among younger participants, social support from family predicted physical activity, whereas, for the older group, social support from staff and peers predicted physical activity. CONCLUSION: Self-efficacy and social support for leisure physical activity are related to leisure physical activity participation among adults with intellectual disabilities who are receiving supported-living services. The results provide information to guide health promotion programs for this group.     

Satisfaction with healthcare services among Spanish people with disabilities

BackgroundSeveral studies show the relationship between patient satisfaction and quality of health services and also between disabling conditions and healthcare access, but none sufficiently analyze the factors that contribute to satisfaction among patients with disabilities.Objective/hypothesesThe primary aim of this paper is to quantify the impact of social factors, perceived health status and access on satisfaction with healthcare services among Spanish people with disabilities.MethodsThis paper uses data from the European Health Survey 2009 to construct latent variables related to satisfaction, use and health status among Spanish patients with disabilities. Next, partial least squares path modeling is used for quantifying the effects of certain social factors, service use, and health status on patient satisfaction with received healthcare services.ResultsSatisfaction with healthcare services among people with disabilities is correlated (Nagelkerke R² of 0.175) with certain demographic factors (age, gender and town size), assistance support and patient use of these services. Education level and income were not found to have significant effects.ConclusionsPeople with disabilities generally show a high level of satisfaction with healthcare services, influenced by a positive valuation of the differentiated use given their specific care needs. Subjective aspects of care have a notable influence, linked with the perception of the person's own state of health and emotional status, on these positive valuations; patients' individual perceptions can reduce care needs and the use patients make of healthcare services and tend to increase their level of satisfaction with these services when they do seek them.     

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long‐term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty‐four semi‐structured interviews, with 25 participants were conducted, audio‐recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self‐identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

Teachers' perspectives of supporting pupils with long‐term health conditions in mainstream schools: a narrative review of the literature

Teachers are supporting an increasing number of pupils with long‐term health conditions in mainstream schools. The aim of this literature review was to critically appraise and synthesise research that has examined teachers' perceptions of the key barriers and facilitators to supporting pupils with long‐term conditions, teachers' training needs and interventions that aim to improve teachers' knowledge of long‐term conditions, and teachers' confidence in supporting children and young people. A narrative literature review was conducted using a systematic search of computerised databases and manual searches of key journals and reference lists to retrieve studies published between 2003 and 2013. Studies were critically appraised and key themes across studies identified. In total, 61 papers from 58 studies were included in the review. The findings suggest that teachers receive little formal training relevant to long‐term condition management and are fearful of the risks involved in teaching children and young people with long‐term conditions. Communication between families, school and health and social care services appears to be poor. Educational programmes developed in conjunction with and/or delivered by healthcare professionals seem to have the potential to increase teachers' knowledge and confidence. This review suggests that healthcare professionals have an important role to play in supporting teachers in identifying and meeting the needs of pupils with long‐term conditions. It is vital that pupils with long‐term conditions receive appropriate care and support in schools to ensure their safety and help them to integrate with their peers and achieve their academic potential. Limitations in the current evidence are highlighted and implications for future research are identified.     

Partnership working by default: district nurses and care home staff providing care for older people

Older people residents in care homes that only offer residential care rely on primary healthcare services for medical and nursing needs. Research has investigated the demands that care homes staff and residents make on general practice, but not the involvement of other members of the primary healthcare team. This paper describes two consecutive studies completed in 2001 and 2003 that involved focus groups and survey methods of enquiry conducted in two settings: an England shire and inner London. The research questions that both studies had in common were (1) What is the contribution of district nursing and other primary care services to care homes that do not have on‐site nursing provision? (2) What strategies promote participation and collaboration between residents, care home staff and NHS primary care nursing staff? and (3) What are the current obstacles and aids to effective partnership working and learning? A total of 74 community‐based nurses and care home managers and staff took part in 10 focus groups, while 124 care home managers (73% of the171 surveyed) and 113 district nurse team leaders (80% of the 142 surveyed) participated in the surveys. Findings from both studies demonstrated that nurses were the most frequent NHS professional visiting care homes. Although care home managers and district nurses believed that they had a good working relationship, they had differing expectations of what the nursing contribution should be and how personal and nursing care were defined. This influenced the range of services that older people had access to and the amount of training and support care home staff received from district nurses and the extent to which they were able to develop collaborative and reciprocal patterns of working. Findings indicate that there is a need for community‐based nursing services to adopt a more strategic approach that ensures older people in care homes can access the services they are entitled to and receive equivalent health care to older people who live in their own homes.     

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.     

Women with developmental disabilities: health and aging

Major shifts have occurred in the world of disability that have profound implications for health-service provision. Although health researchers and clinicians have begun to address the health needs of women with disabilities, representation of older women with intellectual disabilities in health research and health-care practice remains inadequate. As the visibility of this group continues to grow through policies that support greater community integration and longevity, they and their families, professionals, and advocates will require more information about their health concerns, and appropriate health services and options. This article provides an overview of major issues of women with developmental disabilities within the areas of primary health care, aging, access to health services, and future directions in research and practice.