A community-based evaluation of disability resources and inclusion practices in rural Botswana

BackgroundCommunity-based approaches to enhance the inclusion of persons with disabilities have proven effective; however, not much is known about cultural and contextual factors that influence the capacity of policy implementation and inclusion practices in rural Botswana.ObjectiveThe study evaluated local disability education and health resources in rural Botswana to develop a deeper understanding of cultural and contextual factors impacting inclusion practices.MethodResearchers used socio-demographic and qualitative research methods to conduct a comprehensive community-based needs assessment. Sampling techniques included maximum variation and snowball sampling. Thirty-two individuals participated in the study. Data were collected between June and August of 2019 through participant observation, in-depth interviews, and focus group discussions. An inductive thematic analysis was conducted by examining participants’ attitudes, perceptions, and experiences of community members with disabilities.ResultsFour primary themes emerged identifying factors that affect people living with disabilities in the rural community: (1) culture of vulnerability, (2) determinants of disability, (3) educational resources for persons with disabilities, and (4) effective systems integration. Findings suggested that while policies associated with disability at the government level are in place, disparities among rural communities’ hindered local responses to managing the needs of persons with disabilities.ConclusionsSocial, environmental, and physical barriers prevent the full implementation of policies that advocate for the rights of persons with disabilities in Botswana's rural settings. Increasing awareness of cultural and contextual factors may help community stakeholders facilitate inclusive practices in Botswana.     

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.     

Intellectual disability,challenging behaviour and cost in care accommodation: what are the links?

The paper examines the links between degree of intellectual disability, challenging behaviour, service utilisation and cost for a group of people with intellectual disabilities living in care accommodation in England. A cross-sectional survey was conducted of people with intellectual disabilities, identified via provider organisations, with supplementary collection of costs data. Multivariate analyses of cost variations were carried out for 930 adults with intellectual disabilities. There were strong, nonlinear, interdependent links between degree of intellectual disability, behaviour, service use and costs. Higher costs were associated with more severe intellectual disabilities and more challenging behaviour. Sector and scale of residence also influenced cost in quite complex ways. Access to and use of services by people with intellectual disabilities were not always appropriately linked to perceived or actual needs. Policy makers and local commissioning agencies need to explore the sources of cost variation between individuals, sectors and types of accommodation in order to achieve national policy objectives on quality, choice, independence and inclusion.     

Equity in social care for people with intellectual disabilities? A cross‐sectional study examining the distribution of social care funding across local authorities in England

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities (LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting ‘child welfare inequalities’. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities (CASSRs) for 2013–2014 and from CASSR index of multiple deprivation (IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level.     

Report of the state of the science in aging with developmental disabilities: charting lifespan trajectories and supportive environments for healthy community living symposium

BackgroundThis paper is an introduction to four papers that present the findings of the 2007 “State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living” symposium. The overall goal of this symposium was to increase our understanding and improve the health, psychosocial well-being, and community participation of adults with intellectual and developmental disabilities over their life course.MethodsThe symposium consisted of four main tracks: (1) neurodevelopmental conditions; (2) health care services, health promotion needs, and health literacy; (3) family support and intergenerational caregiving; and (4) environmental barriers and supports to community living.Results/ConclusionsRecommendations offer a research agenda that would increase our knowledge on the life span trajectory for individuals with intellectual and developmental disabilities and on methods for developing and assessing effectiveness of practices and policies on individuals with intellectual and developmental disabilities, their families, and their other service providers.     

Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability

The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author’s own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author’s design have been used in the research. Likert-type scale “Perspective of intellectual disability” has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author’s own design have been used: a Likert-type scale “The essence of sexuality in persons with an intellectual disability” which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.     

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.     

Making the subjects of mental health care: a cross‐cultural comparison of mental health policy in Hong Kong,China and New South Wales,Australia

Constituting ‘social problems’ in particular ways has a range of effects, including for how subjects are positioned within policy and discourse. Employing an approach grounded in poststructuralist and social constructionist thinking, this analysis interrogates how the subjects of mental health care were constituted and problematised in mental health policies in two distinctive contexts, unsettling the taken‐for granted assumptions which underpin these problematisations. Two policies were selected for analysis as exemplar pieces of mental health policy reform in Hong Kong and New South Wales (NSW). Subjects were constituted as ‘patientised’ individuals (in Hong Kong) encouraged to depend on professionals who help them reintegrate into the ‘normal’ community, and as ‘traumatised’ individuals (in NSW) expected to take responsibility to guide the delivery of mental health care and respected as a part of diversity in community settings. While both policies constituted subjects as ‘unwell individuals’ and enacted ‘dividing practices’, subjectivities were shaped by distinctive cultural and socio‐political contexts. This analysis shifts our attention away from a focus on the effectiveness of policy solutions to the heterogeneity and contingency of policy ‘problems’ and ‘subjects’, opening up new possibilities for ‘out‐of‐the‐box’ policy responses to mental health.     

Men's Sheds: enabling environments for Australian men living with and without long‐term disabilities

The health of Australian men has recently received greater attention. Men's Sheds are named in national policy as an exemplar community‐based organisation for the betterment of men's psychosocial health; yet, the evidence base to support this is limited. This study investigates the comparative experience of men with long‐term disabilities and men without long‐term disabilities who go to a Men's Shed and to what extent this provides these men with an enabling, as opposed to disabling, environment. Data were collected from 12 individual interviews with men with long‐term disabilities (5) and men without long‐term disabilities (6), including 1 interview with the male Men's Shed Coordinator (MSC); participant observation within the shed; and a document received from the female MSC regarding the funding the Shed receives. Interviews explored the men's experiences at the Shed and their sense of belonging and social inclusion. Participants had any type of long‐term disability and had been attending the shed for a minimum of 1 month. Data were collected between May and September 2013 and were analysed using the constant comparative method of grounded theory. The core theme that emerged was an enabling community space. The four sub‐themes were: a community and social hub; an equalising space; a safe and supportive male environment; and meaningful male activities. The current literature exemplifies Men's Sheds to be important community‐based organisations beneficial to men's health and well‐being. For men living with long‐term disabilities, this study illuminates that Men's Sheds offer an environment of equality, facilitating a collegial and egalitarian culture. Men can partake in enabling activities and enjoy the company of other men enhancing their sense of belonging and social inclusion as well as interact with other community groups that occupy the same space as the Men's Shed.     

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.     

Solidarity or dissonance? A systematic review of pharmacist and GP views on community pharmacy services in the UK

There has been a strong policy emphasis over the past decade on optimising patient‐centred care and reducing general practitioners’ (GPs’) workload by extending community pharmacy services and collaboration between pharmacists and GPs. Our aim was to review current evidence of pharmacists’ and GPs’ views of extended community pharmacy services and pharmacists’ roles in the United Kingdom (UK). A systematic review was undertaken looking at UK studies investigating pharmacists’ and/or GPs’ views of community pharmacy services or roles from 2005 to 2017. A range of databases were searched including EMBASE, PubMed, Scopus, Web of Science, International Pharmaceutical Abstracts (IPA), PsycINFO, Science Direct and The Cumulative Index to Nursing and Allied Health Literature (CINAHL). In addition, reference lists of included studies were screened and grey literature was searched. Following the application of inclusion/exclusion criteria, the quality of papers was critically analysed, findings were extracted into a grid and subjected to narrative synthesis following thematic analysis. The search strategy yielded a total of 4,066 unique papers from which 60 were included. Forty‐seven papers covered pharmacists’ views, nine combined both pharmacists’ and GPs’ views and four covered GPs’ views. Study designs included interviews (n = 31, 52%), questionnaire surveys (n = 17, 28%) and focus groups (n = 7, 12%). Three main themes emerged from the data: “attitudes towards services/roles”, “community pharmacy organisations” and “external influences”. Pharmacists and GPs perceived a number of barriers to successful implementation and integration of pharmacy services. Moreover, collaboration between pharmacists and GPs remains poor despite the introduction of extended services. Overall, extending community pharmacy services require quality‐driven incentives and joint working between community pharmacists and GPs to achieve better integration within the patient's primary care pathway.     

The extent of support for ordinary living provided in staffed housing: The relationship between staffing levels,resident characteristics,staff:resident interactions and resident activity patterns

Staffed housing has become an accepted alternative to institutional residential services for people with learning disabilities on the expectation that such provision will promote ‘ordinary’ patterns of living. Information on staffing levels and the behavioural characteristics of residents together with direct observational data on staff:resident interactions and resident engagement in activity were collected on 15 housing services in South Wales and analysed to explore the interrelationship between these key input and outcome variables. Staffing levels were found to be related to resident characteristics in general but not consistently so. The extent of staff:resident interaction per staff was related to resident characteristics, with staff in services for more able residents spending more time with them. The level of staff support given to residents with more substantial disabilities, slightly higher than that given to more able residents, reflected high staffing input. Resident engagement in activity was strongly related to ability. Participation in household activity was virtually non-existent among residents with the greatest disabilities. The results were compared to similar data from earlier studies on a range of residential services. The relative benefits of small, community-based housing services over institutional and larger community settings were confirmed by the Welsh data. However, comparison to other housing services, which had a particular emphasis on staff helping residents become involved in domestic activity, supports the conclusion that ‘ordinary living’ for people with severe or profound learning disabilities depends not only on the provision of ordinary environments but also on the orientation and working methods adopted.     

Narrative ethics in nursing for persons with intellectual disabilities1

Abstract Both in the Netherlands and in Britain, practices of ‘life story work’ have emerged in nursing for persons with intellectual disabilities. The narrative approach to care and support may at the same time be considered as an attempt to compensate for the ‘disabled authorship’ of many persons with intellectual disabilities and as a sign of controversy with standard practices of diagnosis and treatment that tend to neglect the personal identities of both clients and care givers, their particular historical and relational contexts and their spiritual needs. This paper argues that narrative ethics not only offers an appropriate moral framework for practices of life story work, but that these practices are a narrative ethics in action. Starting with an account of the concept of ‘life story work’ as it has been introduced in nursing practices in the field of intellectual disability, the paper explains its relationship with key characteristics of narrative ethics. The teleological dimension in narrative ethics and in practices of life story work sparks off a dialectic process of understanding of the client and self‐understanding of the care giver. It also invites a respect for life in its openness toward the future and presupposes an openness toward other possible versions of the life narrative. The phenomenological and hermeneutic‐interpretative methodologies in narrative ethics aim at a ‘sudden moment of intimacy’ in relationships of nurses and clients. The ‘epiphany’ of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology.     

Universal HIV testing and treatment and HIV stigma reduction: a comparative thematic analysis of qualitative data from the HPTN 071 (PopART) trial in South Africa and Zambia

Despite continued development of effective HIV treatment, expanded access to care and advances in prevention modalities, HIV‐related stigma persists. We examine how, in the context of a universal HIV‐testing and treatment trial in South Africa and Zambia, increased availability of HIV services influenced conceptualisations of HIV. Using qualitative data, we explore people’s stigma‐related experiences of living in ‘intervention’ and ‘control’ study communities. We conducted exploratory data analysis from a qualitative cohort of 150 households in 13 study communities, collected between 2016 and 2018. We found that increased availability of HIV‐testing services influenced conceptualisations of HIV as normative (non‐exceptional) and the visibility of people living with HIV (PLHIV) in household and community spaces impacted opportunities for stigma. There was a shift in community narratives towards individual responsibility to take up (assumingly) widely available service – for PLHIV to take care of their own health and to prevent onward transmission. Based on empirical data, we show that, despite a growing acceptance of HIV‐related testing services, anticipated stigma persists through the mechanism of shifting responsibilisation. To mitigate the responsibilisation of PLHIV, heath implementers need to adapt anti‐stigma messaging and especially focus on anticipated stigma.     

The expression of ‘policy’ in palliative care: A critical review

The importance of ‘policy’ within palliative care has steadily increased over the past 25 years. Whilst this has been welcomed within the palliative care field and seen as a route to greater recognition, we focus here on a more critical perspective that challenge the effectiveness of a ‘policy turn’ in palliative care. Applying Bacchi's “What's the Problem Represented to Be?” (WPR) framework to data from a systematic search, we address the research question, “in what ways has ‘policy’ been articulated in palliative care literature?”. The paper describes the construction of ‘the problem’ context and reflects critically on the robustness and pragmatic utility of such representations. In particular, we identify five elements as prominent and problematic: (1) a lack of empirical evidence that connects policy to practice; (2) the dominance of ‘Global North’ approaches; (3) the use of a policy narrative based on ‘catastrophe’ in justifying the need for palliative care; (4) the use of idealistic and aspirational ‘calls to action’; and (5) a disengaged and antagonistic orientation to existing health systems. We conclude by suggesting that the efficacy of palliative care policy could be enhanced via greater emphases on ‘Global South’ perspectives, ‘assets-based’ approaches and attention to pragmatic implementation.     

Evaluation of the Reaching People with Disabilities through Healthy Communities Project

BackgroundPeople with disabilities experience disparities in chronic diseases, such as obesity, heart disease, and diabetes, in disproportionate numbers. Research suggests that healthy communities initiatives that work to implement policy, systems and environmental (PSE) changes can help reduce these disparities by improving access to healthy choices for community residents with disabilities. However, healthy communities efforts to implement PSE changes are often not inclusive of people with disabilities.ObjectiveThe purpose of this paper is to evaluate the implementation of an Inclusive Healthy Communities Model that was designed to reach people with disabilities through inclusive PSE changes.MethodsProfessionals from local public health agencies and disability organizations in 10 diverse communities worked to infuse disability inclusion into PSE changes promoting healthy living. Data on PSE implementation was collected and coded into categories to describe the nature of the inclusive PSEs.ResultsCommunities implemented 507 inclusive PSEs, 466 of which were environmental changes, 25 systems changes, and 16 policy changes. A large majority of PSEs were related to improving the built environment to facilitate access to public spaces, such as parks, playgrounds, and community gardens. Many communities also implemented policy and systems changes related to the addition of inclusion into existing policies, community plans, and ongoing training of staff.ConclusionIntegrating disability inclusion into traditional healthy communities efforts can facilitate improved access and opportunity for healthy living among people with disabilities. This pilot project has implications for public health workforce training, current practices, and PSE development with interdisciplinary teams and multisectoral coalitions.     

Conceptualizing community: A comparison of neighborhood characteristics of supportive housing for persons with psychiatric and developmental disabilities

Housing and services for persons with developmental disabilities (DD) have been shaped by the normalization approach, a commitment to full integration within the general community. In contrast, housing and services for persons with psychiatric disabilities (PD) have had various and sometimes conflicting goals, including provision of custodial care, promotion of therapeutic community, and community integration. This cross-field study compares the neighborhood characteristics of publicly-funded housing for the PD and DD populations in a metropolitan community. The aim of the study was to examine whether the contrasting housing approaches are reflected at an ecological level and to consider how these findings relate to the goal of community integration for people with PD and DD. Administrative databases provided residential addresses of 1932 residents with PD living in 297 locations and 1716 residents with DD living in 749 locations in the city of Philadelphia. The 2000 U.S. Census and city's police department database provided information on neighborhood characteristics. Geographic information system (GIS) methodology generated maps displaying the distribution of housing locations in relation to spatial dispersion, distress, stability, safety, and race/ethnic diversity. Statistical analyses compared neighborhood characteristics of the DD and PD populations. Findings indicated that the DD population in supportive housing was more spatially dispersed, and lived in less distressed, less unstable, more secure, but equally racially/ethnically diverse neighborhoods when compared to the PD population in supportive housing.     

Disappearing health system building blocks in the health promotion policy context in South Australia (2003–2013)

Policy contexts for health promotion (HP) are often reported to be unsupportive. However, in South Australia, there is a long history of support. This paper reports on the research question: To what extent were key South Australian (SA) policies and strategic documents supportive of HP and health system building blocks for HP from 2003 to 2013? Twenty SA government documents were examined through an analysis of HP (goal, actions and strategies) and World Health Organization health system building blocks. The policy and practice context changed from strong support for HP in 2003 to its near abandonment in 2013. Key findings include: a wavering commitment to reducing health inequities as well as indeterminate support for community participation. In terms of leadership and governance for HP, there was an abdication of ‘health governance’ for reorienting health services toward HP, although there was a strong focus on ‘governance for health’ through intersectoral collaboration. Other system building blocks were supported to varying levels; however, in 2013, financing, workforce and HP practice were found to have disappeared from the policy agenda. Information as a system building block was also a key theme. On one hand, the importance of monitoring population health was commonly discussed, and on the other, the lack of evidence of HP effectiveness was significant in decisions that led to the decline in the HP policy and practice. This review of key SA government documents over a 10-year period offered a striking picture of how the HP policy context changed in one Australian state.     

An Extension of the Occupational Therapy Role in Gerontology

This paper focuses on service delivery for the aged population. With the prevailing trend towards the maintenance of elderly persons in the community, the contribution to be made by the occupational therapy profession is explored. A review of the literature considers the needs of the elderly, and highlights the importance of occupational therapy expertise in the areas of functional independence, quality of life and life satisfaction. At the present time, most occupational therapy services for the elderly are being provided, within acute treatment or institutional settings. However, occupational therapy has the potential to provide services which will contribute greatly towards the independence and well-being of elderly persons living in the community.