The impact of community care services on the preference for ageing in place in urban China

This paper examines the relationship between community care services and ageing in place in urban China. Using data from the 2010 Sample Survey on Aged Population in Urban/Rural China, and within the framework of a revised version of Andersen's model, the paper applies multilevel models and analyses the effects of community care on the preference between ageing in place and institutional care, and reveals that ageing in place is preferred even in urban China. However, the existence of community care services had no significant effect on the preference for ageing in place. The paper concludes by arguing that China needs to develop its community care services and promote the idea of community care in both culture and policy. Realising ageing in place also requires a multidisciplinary approach. A model of shared care, between family and state, is particularly appropriate for China.     

Whom should I rely on for my future care? Patterns of care expectations and intergenerational correlates among ageing Chinese adults in Hong Kong

This study examined ageing parents' care expectations across multiple care domains (financial and material, emotional, personal and informational) towards filial and formal sources and identified intergenerational correlates of care expectation patterns using a proposed care expectation model. Data of 780 eligible ageing parents were drawn from a representative household survey of ageing adults (≥50 years) conducted in 2016–2017. Latent class analysis was used to examine the typological structure underlying ageing parents' care expectations. Four patterns of care expectations were discovered: mixed–maximal, filial–modest, formal–modest and neither–minimal. Multinomial logistic regression analysis was conducted to validate the newly proposed care expectation model. In addition to certain predisposing factors (participants' age, sex and education), parental enabling resources (economic status), health characteristics (physical, mental and functional health status), children‐related enabling characteristics (number of sons and marital status of children), and intergenerational enabling circumstances (intergenerational relationships and caregiving to their own parents) were introduced into the model and found to be associated with ageing parents' care expectations. The findings can inform policy and programmes that effectively respond to ageing adults' diverse care expectations in Hong Kong and have implications for other Asian societies facing rapid population ageing and increasing care demands.     

“It's a nice country but it's not mine”: Exploring the meanings attached to home,rurality and place for older lesbian,gay and bisexual adults

An ageing population across European nations, including the United Kingdom, brings with it new challenges for health and social care services and precipitates social policy initiatives targeted at meeting the care and support needs of a rapidly expanding number of older people. Ageing in place is one such policy driver—policy efforts that seek to promote the maintenance of older citizens residing in their own homes for as long as possible with minimal state intervention. Current generations of older lesbian, gay and bisexual (LGB) people have endured homophobia throughout their life histories, and sexual identity can shape perceptions and experiences of ageing, including experiences of home life, community and place. Our objective is to examine the meanings attached to home and place for older LGB adults living independently across three dimensions: rural places as “home,” connections to LGB communities, and social care provision in the home. We present interview findings from a mixed‐methods study on the social inclusion of older LGB adults in Wales. Twenty‐nine LGB‐identifying adults (50–76 years) self‐selected to participate in semistructured interviews between 2012 and 2013. Thematic findings from interviews indicate varying and contradictory meanings attached to home life in rural places, the importance of connection to communities of identity across geographical and online localities, and a high degree of ambivalence towards the prospect of receiving social care services in the home. We argue that a more nuanced understanding of the subjective meanings attached to home, rurality and community for older LGB people is needed to fully support LGB citizens to continue to live independently in their homes.     

‘I live for today’: a qualitative study investigating older people’s attitudes to advance planning

This article reports investigation of prevalent understandings and systems of beliefs that underpin older people’s attitudes towards making plans for their future. The Mental Capacity Act 2005 (MCA) enables adults with capacity to make plans and decisions in advance, to arrange proxy decision‐making and provides safeguards for those who might lose the capacity to make decisions for themselves in the future. This study explored the attitudes of a diverse sample of 37 self‐declared well older people living in the community in England about their views on drawing up statements of wishes and documenting their decision‐making preferences. The study was conducted in early 2009. Findings revealed that most individuals had a personal tendency or preference towards planning, guided by personality, beliefs, living situation and the relevancy of planning to their situation. Financial plans and funeral arrangements were most commonly drawn up with an absence of health and social care plans, which participants tended to postpone considering. Housing and residential care were important for all. Overall, few participants had heard of the MCA and most were unsure where to turn for support. Participants appreciated support when discussing these issues; some turned to family, while others felt professionals were a more appropriate source of advice. The family doctor was cited as trustworthy and a potential place to begin inquiries. Conceptualising onset of certain debilitating conditions also encouraged participants to think about planning for them. This study has implications for public education campaigns and health‐related information that could potentially impact on many older people who are interested in making plans but are unaware that legal safeguards and practical support are available to aid this.     

Support networks for Chinese older immigrants accessing English health and social care services: the concept of Bridge People

As Chinese immigrants in the United Kingdom age, they experience an increasing need to access health and care services. It has, however, been reported that older Chinese immigrants have difficulties in accessing these services. This study explored the experiences of this population in using health and care services and the strategies that they adopted to address their difficulties. A grounded theory method with a two‐staged research design was used. Stage 1 explored the participants’ experiences of ageing and use of health and social care services through focus group interviews. Stage 2 investigated the strategies individuals used to support access to and use of services through individual interviews. Forty‐four older Chinese people and 15 supporters participated in interviews during August 2011 and May 2013. These older Chinese immigrants were challenged in knowing about and in accessing services. Their difficulties were attributed to language barriers, lack of information and instrumental support, and emotional and cultural issues regarding use of health and care services. Their supporters facilitated access to services and acted as a bridge between the service and the user; therefore, they were given the title ‘Bridge People’. Bridge People have different backgrounds: family and friends, public sector workers and staff from community‐based Chinese organisations. The defining attributes of these supporters were: bilinguality, bicultural, multifunctionality and accessibility. There is no charge for this support; and the relationship between the Bridge Person and recipient involves trust and influence over decisions regarding use of health and care services. Bridge People should be recognised and identified by health, social care and housing services to promote engagement and use of services by older immigrant Chinese people.     

Locating care at the end of life: burden,vulnerability, and the practical accomplishment of dying

Home is frequently idealised as the preferred location for end‐of‐life care, while in‐patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care in‐patient unit. Drawing on semi‐structured interviews with in‐patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family.     

Legitimising and rationalising in talk about satisfaction with formal healthcare among bereaved family members

While there is a fair amount of knowledge regarding substantive features of end of life care that family members desire and appreciate, we lack full understanding of the process whereby family members formulate care evaluations. In this article we draw on an analysis of interview data from 24 bereaved family members to explicate how they interpret their experiences and formulate evaluations of end of life care services. Most participants wove between expressing and legitimising dissatisfaction, and qualifying or diffusing it. This occurred through processes of comparisons against prior care experiences and expectations, personalising (drawing on personal situations and knowledge), collectivising (drawing on conversations with and observations of others) and attempting to understand causes for their negative care experiences and to attribute responsibility. The findings suggest that dissatisfaction might be diffused even where care is experienced negatively, primarily through the acknowledgement of mitigating circumstances. To a lesser extent, some participants attributed responsibility to the ‘system’ (policy and decision‐makers) and individual staff members. The findings are discussed in relation to the theoretical understanding of satisfaction and evaluation processes and how satisfaction data might inform improvements to care quality.     

Formal home‐care utilisation by older adults in Ireland: evidence from the Irish Longitudinal Study on Ageing (TILDA)

The aim of this study was to provide a population‐based estimate of the utilisation of publicly financed formal home care by older adults in Ireland and to identify the principal characteristics of those utilising formal home care. Data were collected through computer‐aided personal interviews from a representative sample of community living older adults in Ireland. The interviews were conducted between 2009 and 2011 as part of the first wave of the Irish Longitudinal Study on Ageing (TILDA). The study is cross‐sectional in design and limited to participants aged 65 years and older (n = 3507). Results reveal that 8.2% (95% CI 7.1%–9.3%) of participants utilised publicly financed formal home care in the form of home help and/or personal care. Key determinants of formal home‐care utilisation were Instrumental Activity of Daily Living (IADL) difficulty (Adj OR 3.8, 95% CI 2.7–5.3), older age (Adj OR 3.4, 95% CI 2.4–4.8) and living alone (Adj OR 2.6, 95% CI 1.9–3.8). Almost half of those utilising formal care did not self‐report an Activity of Daily Living (ADL) difficulty or an IADL difficulty. Government policy aims to reduce the need for long‐term residential care by providing formal home care for older adults with low to moderate levels of dependency. This requires an increasing emphasis on personal care provision in the home. No evidence was found in this study to suggest that a shift in emphasis from formal domestic to personal care is taking place in Ireland. The absence of standardised assessment and eligibility criteria are deemed to be barriers to reorientation of the system. From a health services perspective, the current situation is not sustainable into the future and requires a focused policy response.     

What are the priorities for developing culturally appropriate palliative and end‐of‐life care for older people? The views of healthcare staff working in New Zealand

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end‐of‐life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands‐on’ care. The role of family in decision‐making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands‐on’ palliative care and decision‐making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health‐care, collective decision‐making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end‐of‐life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.     

Experiences of home‐care workers with the ‘Stay Active at Home’ programme targeting reablement of community‐living older adults: An exploratory study

To face the challenges of an ageing population, many Western countries nowadays stimulate an ageing in place policy to empower older adults to grow old in their own homes with the highest degree of self‐reliance. However, many community‐living older adults experience limitations in (instrumental) activities of daily living ((I)ADLs), which may result in a need for home‐care services. Unfortunately, home‐care workers often provide support by taking over tasks, as they are used to doing things for older adults rather than with them, which undermines their possibilities to maintain their self‐care capabilities. In contrast, reablement focuses on capabilities and opportunities of older adults, rather than on disease and dependency. Consequently, older adults are stimulated to be as active as possible during daily and physical activities. The 'Stay Active at Home' programme was designed to train home‐care workers to apply reablement in practice. To explore the experiences of home‐care workers with this programme an exploratory study was conducting in the Netherlands, between April and July, 2017. In total, 20 participants were interviewed: nine nurses (including a district nurse), 10 domestic support workers and the manager of the domestic support workers. The semi‐structured interviews focused on the experienced improvements with regard to knowledge, skills, self‐efficacy and social support. Furthermore, the most and least appreciated programme components were identified. The study has shown that home‐care workers perceived the programme as useful to apply reablement. However, they also need more support with mastering particular skills and dealing with challenging situations. Future implementation of the 'Stay Active at Home' programme can potentially benefit from small adaptions. Furthermore, future research is needed to examine whether the programme leads to more (cost‐) effective home care.     

Consumer expectations and experiences of quality in Australian home‐based community services

Australians want to live at home as they age and seek support from health and social care services to achieve this. The consumer driven market‐based approach to community services in Australia has resulted in an increases in user's expectations of quality. What constitutes a quality service from the consumer's perspective is an important agenda to understand as the focus of care delivery moves to the domiciliary setting. This paper presents one aspect from a grounded theory PhD study, the aim of which was to understand the lived experience of receiving services in the home and its impact on the meaning of home. Participants were 11 people with dementia and 18 family supporters living in the state of Victoria, Australia. Data were collected between 2015 and 2017 through multiple interviews, photographic images, field notes and memos. NVIVO 10 qualitative analysis software program was used to support constant comparative analysis. Using a grounded theory approach, this study found that the decision to engage with community services was driven by the need to maintain autonomy, self‐identity and home life. Participants sought quality services but discovered a dichotomy of positive and negative aspects in the way services were delivered. The most common reaction to the experience of poor‐quality care was to reflect on their expectations for care quality; and manage the reality of what was delivered. Team work and service responsiveness were positive characteristics but were offset by service limitations and inefficiencies caused by poor communication and poor staff retention. The interpersonal relationships that participants developed with staff was highlighted; trust was an important factor whereas unreliable, task orientated and poorly trained staff would be rejected. The implications for policy and practice are described.     

Giving a voice to medically vulnerable populations: A mixed‐methods investigation of their unique perceptions and needs in emergency situations

Older adults in poor health represent a growing sector of the population worldwide. These medically vulnerable individuals often tend to be ill‐prepared for emergencies. In times of crisis they are at higher risk of experiencing adverse health outcomes and are liable to place an additional burden on health and social care services. The aim of this study was to explore the unique perceptions and diverse needs of community‐dwelling medically vulnerable individuals in Israel in order to gain insights that could be used to promote future preparedness. A mixed methods design was employed that included 16 in‐depth interviews, followed by a quantitative survey of 179 participants. Data were collected between 2016 and 2017. The analysis process included thematic analysis for qualitative data. Quantitative data analysis focused on estimating associations between preparedness levels and participants’ characteristics and perceptions. The results indicated low levels of preparedness—only 13.5% of participants reported having prepared a full emergency kit with supplies. Family members played a key role in almost every dimension related to emergency preparedness; alongside certain authorities perceived by the participants as responsible for initiating the preparedness process. Additional issues that emerged were related to information and communication and to the logistics of medication handling and special nutrition. The findings suggest that it is vital to adopt a proactive approach to the problem of preparedness in this population. This conclusion should be of value to health and social care practitioners in the community as well as to family members and caregivers. Practical and simple recommendations for enhancing preparedness based on these findings are provided. Viewing preparedness as a process that is the joint responsibility of the individual, the family, caregivers, and community health and social welfare services could contribute to maintaining continuity of care among vulnerable populations and mitigate adverse health outcomes in future events.     

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

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

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.     

Consequences,control and appraisal: cues and barriers to engaging in self‐management among people affected by colorectal cancer – a secondary analysis of qualitative data

Background Little is known about peoples’ self‐management experiences and their desires or expectations to engage in self‐management. As such, there is little understanding about individuals’ perceived cues and barriers to engagement in self‐management, particularly in people affected by cancer. Objective To understand cues and barriers to people’s engagement in self‐management during chemotherapy treatment for colorectal cancer. Design Secondary analysis of qualitative data from mixed methods, longitudinal study. Setting and participants Eleven participants undergoing treatment for colorectal cancer. Semi‐structured interviews were conducted twice with each participant, at the start and end of a 6‐month course of chemotherapy treatment in a Scottish cancer centre. Results Cues and barriers to engagement in self‐management appeared to stem from perceptions of the impact and associated severity of side effects experiences as well as the perceptions about the efficacy of chosen self‐management activities and perceptions of control in minimizing the consequences of cancer treatment. Severe, episodic or unexpected side effects coupled with perceptions of uncertainty, lack of control and lack of adequate preparation to engage in self‐management were identified as key barriers to engagement. Discussion and conclusion Participants’ reflection on, or appraisal of, their treatment‐related experiences and personal abilities, confidence and preferences to manage the impact of these shaped their subsequent engagement in self‐management. The findings highlight the importance of understanding individual’s self‐management experiences, perceptions, preferences, priorities and needs to help support, prepare and enable them to feel capable and confident to engage actively and effectively in self‐management.     

Mediating effects of psychological resilience on life satisfaction among older adults: A cross‐sectional study in China

The mediating effects of psychological resilience on quality of life among older adults were rarely examined empirically. Based on the literature on the relationship between psychological resilience and quality of life and the factors associated with psychological resilience among older adults, a theoretical model was proposed with the hypothesis that psychological resilience would mediate the relationships between both filial support and sense of community and life satisfaction among older adults. The research used a cross‐sectional design. Non‐probability sampling method was applied to recruit 418 community‐dwelling older adults in two adjacent cities in Fujian, China in 2017. A face‐to‐face structured Chinese questionnaire was adopted to collect data. The structural equation modeling showed that psychological resilience mediated the relationships between both filial support and sense of community and life satisfaction. The findings confirmed the positive impacts of psychological resilience on older adults’ life satisfaction and highlighted the importance of family and community contexts to older adults’ psychological resilience and life satisfaction. Interventions and programmes that aim to promote filial support towards older adults and enhance their sense of community would contribute to both their psychological resilience and life satisfaction.     

Experiences of end-of-life care in community hospitals

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients' and family carers' experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions (n = 18) and their family carers (n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care.     

It ‘makes you feel more like a person than a patient’: patients’ experiences receiving home‐based primary care (HBPC) in Ontario,Canada

The lack of effective systems to appropriately manage the health and social care of frail older adults – especially among those who become homebound – is becoming all the more apparent. Home‐based primary care (HBPC) is increasingly being promoted as a promising model that takes into account the accessibility needs of frail older adults, ensuring that they receive more appropriate primary and community care. There remains a paucity of literature exploring patients' experiences with HBPC programmes. The purpose of this study was to explore the experiences of patients accessing HBPC delivered by interprofessional teams, and their perspectives on the facilitators and barriers to this model of care in Ontario, Canada. Using certain grounded theory principles, we conducted an inductive qualitative content analysis of in‐depth patient interviews (n = 26) undertaken in the winter of 2013 across seven programme sites exploring the lived experiences and perspectives of participants receiving HBPC. Themes emerged in relation to patients' perceptions regarding the preference for and necessity of HBPC, the promotion of better patient care afforded by the model in comparison to office‐based care, and the benefits of and barriers to HBPC service provision. Underlying patterns also surfaced related to patients' feelings and emotions about their quality of life and satisfaction with HBPC services. We argue that HBPC is well positioned to serve frail homebound older adults, ensuring that patients receive appropriate primary and community care – which the office‐based alternative provides little guarantee – and that they will be cared for, pointing to a model that may not only lead to greater patient satisfaction but also likely contributes to bettering the quality of life of a highly vulnerable population.