“They’re always in a hurry” – Older people´s perceptions of access and recognition in health and social care services

The article examines older people's perceptions of quality of life from the perspective of access and use of health and social care services. The data include focus group discussions with older people living alone. The data were analysed using thematic analysis focusing on the older people's collective views on health and social care services as supportive or restrictive factors for their quality of life. Two central themes were present in all the focus group discussions: the importance of accessing services and information regarding the services, and need for recognition within the services/by the professionals. Both themes were connected to the older people's desire to maintain autonomy in their everyday life despite increasing functional disabilities, which was seen as an important factor of quality of life. The older people felt that accessing and finding information about the services was difficult, and dependent on the professional's good will and the older person's own financial resources. Within the services, older people experienced a lack of recognition of their own personhood and individual needs. The participants felt that they were easily bypassed and left out of negotiations regarding their own care. The article highlights the importance of developing health and social care services and practices towards a more holistic approach recognising older people's individual needs.     

‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well‐being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community‐based care for people with dementia can be challenging. Workers often lack training in dementia‐specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person‐centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in‐depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers’ understanding of dementia, person‐centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers’ lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.     

Older people's mental health in rural areas: Converting policy into service development,service access and a sustainable workforce

This paper describes the older people's mental health workforce development, policy development and implementation process and quantifies the rural service delivery and access impacts over a 15‐year period in New South Wales. It highlights the factors that are considered to be critical to successful rural service development such as commitment to funding parity, investment in strong local service leadership, and development of innovative, locally adapted rural service models. Building on these foundations, the Older People's Mental Health Program in New South Wales was able to address key challenges relating to service access in rural health and develop new, sustainable specialist older people's mental health service networks. A sustained focus on policy and implementation which explicitly supports rural older people's mental health service enhancement, and development of evidence‐based models of care, has significantly improved access to specialist mental health care for older people in rural areas. It has delivered 23 new rural older people's mental health community teams and a 440% increase in the number of people accessing these teams. It has also doubled the number of acute inpatient units and established new specialist mental health‐residential aged care partnership services in rural New South Wales. It has resulted in increased access to services for the “older old,” while not diminishing older people's rates of access to general adult mental health services. It has also supported innovative, sustainable rural service models such as “hub and spoke” models and step‐up step‐down inpatient services that build on existing health and hospital infrastructure and link geographically dispersed specialist clinicians and services together in rural service delivery.     

Beyond the definition of formal care: Informal care arrangements among older swedes who are not family

This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.     

To support and not to cure: general practitioner management of loneliness

Loneliness is associated with numerous detrimental effects on physical health, mental health, cognition and lifestyle. Older adults are one of the groups at highest risk of loneliness, and indeed about 46% of older adults in England feel lonely. Those experiencing loneliness visit their general practitioner (GP) more frequently than those who are not, which has the capacity to put a strain on GPs and primary care waiting lists and costs. This study's aim was to explore GPs' views and experiences of loneliness within their older adult patients, and to understand GPs' awareness and feelings of agency within this. Nineteen UK GPs were recruited using purposive sampling and snowballing techniques. Individual semi‐structured interviews were conducted either in person or over the telephone. Data were analysed using thematic analysis. Four overarching themes were identified from the data: Whose responsibility is it anyway?, Pandora's box of shame; Keeping distance; and Community responsibility. Themes emphasise that GPs tend to hold a medicalised and individualistic view of loneliness. This intensifies stigma which in turn creates barriers to raising the topic. GPs felt powerless in their ability to fix the ‘problem’ and tended to believe that the solution had to lie in the community, the individual or in social care rather than in primary care. The findings are discussed in the context of literature on GP management of other social problems which give rise to similar issues concerning the restrictions of the medical model and the need for joined‐up approaches in which the GP is one part of a wider social support structure. It is suggested that it might be useful for training and support for GPs to address management of social problems jointly rather than training specific to loneliness which GPs tend to see as peripheral to their core remit.     

Tearing down the Berlin wall: social workers' perspectives on joint working with general practice

BACKGROUND: The arrangements for delivering social work and primary health care to older people in England and Wales are currently subject to rapid re-configuration, with the development of integrated primary care and social services trusts. OBJECTIVE: To investigate perceptions of joint working in social services and general practice. METHODS: The study setting was two London boroughs covered by one health authority, one NHS Community Health Services Trust, four Primary Care Groups and two social services departments. All social work team managers in both areas were interviewed together with a purposive sample of social workers with a high number of older clients on their caseloads. A sample of GPs was sought using a sampling frame of practice size in each borough. Structured interviews with open and closed questions were used. Tape-recorded interviews were transcribed and subject to thematic analysis. Analysis of emergent themes was aided by the use of Atlas-ti. RESULTS: Social workers and GPs agree on the need for joint working, but have different understandings of it, each profession wanting the other to change its organizational culture. Co-location of social and health care is seen as desirable, but threatening to social work. Concerns about differences in power and hierarchical authority are evident and explicit in social work perspectives. Conflict resolution strategies include risk minimization, adopting pragmatic, case-specific solutions rather than remaining consistent with policy, using nurses as mediators, and resorting to authority. CONCLUSIONS: Although this is a study from urban areas in England, its findings may have wider significance since we have found that resources and professional skills may be more important than organizational arrangements in collaborative working between disciplines. Primary Care Trusts in England and Wales should promote awareness of these different perspectives, perceived risks and conflict minimization strategies in their work on clinical governance and professional development.     

Neither ‘foolish’ nor ‘finished’: identity control among older adults with HIV in rural Malawi

Prevalence of HIV after age 50 is considerable, especially in southern Africa. Negative social constructions of HIV in older age, and the health consequences of ageing with the virus, mean that having HIV presents a challenge for many people's roles and social memberships, threatening to disrupt their sense of self. Using constructivist grounded theory and qualitative data from rural Malawi, this paper describes how older men and women deal with these identity challenges. Drawing on a symbolic interactionist framework, it uses identity control theory to explore how the study's participants presented their post‐diagnosis behaviours in ways that maintained their most significant pre‐diagnosis identities as ‘adults’, a label they gave to the core identity of being a person who belongs in the social world. Considering the processes through which older people with HIV navigated challenges to their identities in light of the intersectional influences of HIV and age‐related stigma and illness, provides insight into how older people might experience HIV, as well as informing theoretical understandings of identity formation and maintenance in light of chronic and/or stigmatising illness more broadly.     

Effects of digital engagement on the quality of life of older people

It is often asserted that older people's quality of life (QOL) is improved when they adopt information and communication technology (ICT) such as the Internet, mobile phones and computers. Similar assumptions are made about older people's use of ICT‐based care such as telecare and telehealth. To examine the evidence around these claims, we conducted a scoping review of the academic and grey literature, coving the period between January 2007 and August 2014. A framework analysis approach, based on six domains of QOL derived from the ASCOT and WHOQOL models, was adopted to deductively code and analyse relevant literature. The review revealed mixed results. Older people's use of ICT in both mainstream and care contexts has been shown to have both positive and negative impacts on several aspects of QOL. Studies which have rigorously assessed the impact of older people's use of ICT on their QOL mostly demonstrate little effect. A number of qualitative studies have reported on the positive effects for older people who use ICT such as email or Skype to keep in touch with family and friends. Overall, the review unearthed several inconsistencies around the effects of older people's ICT use on their QOL, suggesting that implicit agreement is needed on the best research methods and instrumentation to adequately describe older people's experiences in today's digital age. Moreover, the available evidence does not consider the large number of older people who do not use ICT and how non‐use affects QOL.     

Personalised risk: new risk encounters facing migrant care workers

Many long-term care systems are seeking to address problems of growing demand, increasing expense, and higher user expectations. For many of them fostering care at home and private care arrangements are attractive options. The long-term care sector in England is typical of these systems. Over the last 2 decades, government policy in England has placed stronger emphasis on people’s choice and control when receiving care services. People with care and support needs may be eligible for public funds to employ care workers or to use them in other ways promote their well-being. These financial transactions are a major part of the policy of personalisation in adult social care, as confirmed by the Care Act 2014. Drawing on findings from life story interviews with 31 migrant care workers who had worked for disabled or older people in England, conducted 2011–2013, we note the potential for expanding the sociologically inspired concept ‘personalised risk’. This necessitates an appreciation of risks potentially faced by the multiple parties in the care relationship and a differentiated set of structural risks. Applying a multilevel analysis we highlight the potential risks of ‘informality’ of employment conditions experienced by directly employed care workers, the ‘emotional’ content of care worker-employer relationships, and ‘intimacy’ of employer/employee roles. In this article, we offer an empirical based contribution to the wider discussion of risks and risk theory derived from policy changes being adopted by many developed countries that increasingly emphasise individual responsibility for personal welfare within an uncertain and mobile social world.     

The costs of care: An ethnography of care work in residential homes for older people

The cost of social care, the work conditions experienced by care workers and the quality of care provided by residential homes for older people are all linked, yet we know very little about how this relationship works in practice. Drawing upon an ethnography of two differently priced residential care homes for older people in Southern England, I examine the implications of different financial regimes for care-giving practices. I show how the scheduling and allocation of resources—conveyed, for example, in formal routines and staffing levels—structure the care workers’ time, tasks and activities in each setting. This acts to symbolically demarcate what, or who, is valued. I argue that the availability of resources facilitates and impedes the symbolic culture of care work, shapes care workers’ ability to afford dignity to the individuals in their care and affects how care workers experience, and relate to, their labour. I conclude by discussing how current practices of funding and pricing social care have effects seeping beyond the practical and measurable, and into the realm of the symbolic.     

Food provision for older people receiving home care from the perspectives of home‐care workers

Malnutrition is a significant cause of morbidity and mortality, particularly among older people. Attention has focused on the inadequacies of food provision in institutions, yet the majority suffering from malnutrition live in the community. The aim of this study was to explore barriers and facilitators to food provision for older people receiving home care. It was a qualitative exploratory study using semi‐structured interviews with nine home‐care workers in June 2013 employed by independent agencies in a large city in northern England. Data were analysed thematically, based on the principles of grounded theory. Findings showed that significant time pressures limited home‐care workers in their ability to socially engage with service users at mealtimes, or provide them with anything other than ready meals. Enabling choice was considered more important than providing a healthy diet, but choice was limited by food availability and reliance on families for shopping. Despite their knowledge of service users and their central role in providing food, home‐care workers received little nutritional training and were not involved by healthcare professionals in the management of malnutrition. Despite the rhetoric of individual choice and importance of social engagement and nutrition for health and well‐being, nutritional care has been significantly compromised by cuts to social care budgets. The potential role for home‐care workers in promoting good nutrition in older people is undervalued and undermined by the lack of recognition, training and time dedicated to food‐related care. This has led to a situation whereby good quality food and enjoyable mealtimes are denied to many older people on the basis that they are unaffordable luxuries rather than an integral component of fundamental care.     

Bridging the discursive gap between lay and medical discourse in care coordination

For older people with multiple chronic co‐morbidities, strategies to coordinate care depend heavily on information exchange. We analyse the information‐sharing difficulties arising from differences between patients’ oral narratives and medical sense‐making; and whether a modified form of ‘narrative medicine’ might mitigate them. We systematically compared 66 general practice patients’ own narratives of their health problems and care with the contents of their clinical records. Data were collected in England during 2012–13. Patients’ narratives differed from the accounts in their medical record, especially the summary, regarding mobility, falls, mental health, physical frailty and its consequences for accessing care. Parts of patients’ viewpoints were never formally encoded, parts were lost when clinicians de‐coded it, parts supplemented, and sometimes the whole narrative was re‐framed. These discrepancies appeared to restrict the patient record's utility even for GPs for the purposes of risk stratification, case management, knowing what other care‐givers were doing, and coordinating care. The findings suggest combining the encoding/decoding theory of communication with inter‐subjectivity and intentionality theories as sequential, complementary elements of an explanation of how patients communicate with clinicians. A revised form of narrative medicine might mitigate the discursive gap and its consequences for care coordination.     

Dignity under threat? A study of the experiences of older people in the United Kingdom.

Theoretical accounts have offered a general understanding of the social significance and importance of dignity and suggest that older age may threaten dignity by structuring and limiting the opportunities for participation and/or social recognition. Micro-sociological research has shown how older people negotiate their identity, in the face of its erosion by the aging body and disability and the domination of health and social care workers. These theoretical approaches inform the study presented here, which explores the meaning and experience of dignity for older people in their daily lives. Older people's accounts were elicited through a series of focus groups with participants living in England and Wales. Participants were selected according to predefined criteria to represent a range of different socio-economic and ethnic backgrounds, levels of fitness, and home circumstances. Personal identity and autonomy were the aspects of dignity most meaningful to the participants, and discussions tended to focus mainly on when personal identity and autonomy were threatened or violated in the context of the provision of health and social care. The authors discuss the extent to which older people's discourse on dignity resonates with the theoretical discourse.     

Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people,communities and health services

Cancer outcomes for Aboriginal Australians are poorer when compared with cancer outcomes for non‐Aboriginal Australians despite overall improvements in cancer outcomes. One concept used to examine inequities in health outcomes between groups is health literacy. Recent research and advocacy have pointed to the importance of increasing health literacy as it relates to cancer among Aboriginal people. This study examined individual, social and cultural aspects of health literacy relevant to cancer among Aboriginal patients, carers and their health workers in New South Wales. Qualitative interviews were conducted with 22 Aboriginal people who had been diagnosed with cancer, 18 people who were carers of Aboriginal people with cancer and 16 healthcare workers (eight Aboriginal and eight non‐Aboriginal health workers). Awareness, knowledge and experience of cancer were largely absent from people's lives and experiences until they were diagnosed, illustrating the need for cancer awareness raising among Aboriginal people, communities and services. Some beliefs about cancer (particularly equating cancer to death) differed from mainstream Western biomedical views of the body and cancer and this served to silence discussion on cancer. As such, these beliefs can be used to inform communication and help illuminate how beliefs can shape responses to cancer. Participants proposed some practical strategies that could work to fill absences in knowledge and build on beliefs about cancer. These results were characterised by a silence about cancer, an absence of discussions of cancer and an acknowledgement of an already full health agenda for Aboriginal communities. To promote health literacy in relation to cancer would require a multi‐layered programme of work involving grass‐roots community education, workers and Board members of Aboriginal community‐controlled health organisations and speciality cancer services, with a particular focus on programmes to bridge community‐based primary care and tertiary level cancer services.     

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long‐term conditions

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.     

General practitioner attitudes to discussing sexual health issues with older people

How health professionals perceive and manage later life sexual problems remains relatively unexplored and, in particular, little is known about the attitudes of GPs, who represent the first point of contact for most older people in the UK who experience sexual health concerns. This paper draws on qualitative data generated from in-depth interviews with 22 GPs working in demographically diverse primary care practices in Sheffield, UK. Analysis identified that GPs do not address sexual health proactively with older people and that, within primary care, sexual health is equated with younger people and not seen as a 'legitimate' topic for discussion with this age group. However, it was apparent that many beliefs held about the sexual attitudes and behaviours of older people were based on stereotyped views of ageing and sexuality, rather than personal experience of individual patients. The discussion considers the implications of these findings for primary care, particularly in relation to education and training.     

Housing options for the future: Older people’s preferences and views on villages with care and support

A growing older population worldwide means there is a need to ensure there are sufficient housing options to meet a broad spectrum of need and aspiration. There is little understanding of the relative importance of the “pull factors” that might attract older people to relocate to a new environment. Older people's views of the relative level of attractiveness of potential features of a specialist housing development offering care and support were investigated using Q methodology. Forty‐one participants aged 53–89 living in a locality in Northern England rank‐ordered 70 statements from April to August 2016. The analysis revealed four viewpoints: adaptation and care seekers, comprising prioritisation of care provision, specialist accommodation and accessibility; care‐indifferent luxurians, which encompasses attraction to some “luxury” features and less emphasis on care provision; connected separatists, emphasising a distinct environment with good public transport connections; and independent engagers, comprising attraction towards social opportunities and remaining independent. Broad agreement was found on some topics, such as the generally high prioritisation of safety and security. The research provides a deeper understanding of differences in views towards housing options among older people which developers, planners and funders will need to recognise. While providing high‐quality care may be a key objective for some organisations, this may not be the most important concern for some older people contemplating relocation, with many other features considered more attractive.     

Health outcomes associated with participating in community care centres for older people in Taiwan

Community care centres (CCCs) are widespread across Taiwan and have provided health promotion and social activities for older people in communities since 1995. The purpose of this study was to describe the status of the delivery and management of CCCs for older people, and to explore the effects of individual factors and the organisational factors on the health‐related outcome of older people's participation in CCCs. The sample was taken from participants at CCCs in Taichung, Taiwan. Twenty‐five CCCs participated in the study. The managers and the elderly participants of CCCs underwent face‐to‐face interviews. In total, 417 elderly participants and 25 chiefs completed the face‐to‐face interviews. The participants reported that self‐reported health, sleep quality, memory, family relationships, care for health, and health literacy improved after they participated in the programme. There were no consistent organisational factors related to the outcomes. However, management style was related to sleep quality improvement and staffing getting paid was related to family relationship improvement. Policy recommendations are provided.     

Over‐the‐counter analgesic use by urban Aboriginal people in South Australia

Despite recent health gains for Australian Aboriginal people their significantly poorer health status compared with that of non‐Aboriginal Australians remains significant. Within the context of high levels of mortality and morbidity, research highlights significant barriers to timely health‐care, access and safe use of prescribed and over‐the‐counter medicines. The risks to Aboriginal people's health due to unsafe medication use are preventable. The purpose of this article is to present the findings from qualitative research focused on Aboriginal people's knowledge, use and experience of over‐the‐counter analgesics. The study was conducted in the north‐western metropolitan area of Adelaide, which has the largest urban Aboriginal population in South Australia. The employment of an Aboriginal Elder as Cultural Advisor enabled engagement with Aboriginal participants. Purposive ‘snow ball’ sampling was used to recruit participants for four focus groups [n = 30] and one participant opting for a personal semi‐structured interview. Participants worked with the researchers to develop the findings and formulate recommendations. The 25 women and 6 men, aged 20–80 years reported various chronic medical conditions. Focus groups/interview elicited accounts of critical issues concerning safe selection and use of over‐the‐counter analgesics. Serious health risks were evident due to limited knowledge about safe analgesic use and over‐reliance on information from family, friends and advertising. Extremely poor access was reported by participants to culturally and linguistically appropriate information, education and advice from a range of doctors and other health professionals including Aboriginal health workers.