Carers' quality of life and experiences of adult social care support in England

Informal carers make a vital contribution to the well‐being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.     

A review of the factors associated with the non‐use of respite services by carers of people with dementia: implications for policy and practice

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub‐groups of the carer population who may be more vulnerable to service non‐use.     

Creating ‘therapeutic landscapes’ for mental health carers in inpatient settings: A dynamic perspective on permeability and inclusivity

Although there has been a shift toward treatment in the home and the community, in the UK, inpatient facilities are still important in modern mental health care. ‘Informal carers’, including family members, often play an essential role, not only in providing care in the community but also in care of patients during periods of hospitalisation. UK National Health Service policies increasingly consider the position of these carers as ‘partners’ in the care process, but relatively little attention has been paid to their position within the hospital settings where treatment is provided for inpatients. This paper contributes to geographical work on carers experiences, by reporting how this issue emerged through a study focused on perceptions of a newly built hospital, compared with the inpatient facilities it replaced. We draw on qualitative research findings from discussion groups and interviews with informal carers. The material considered here focused especially on carers' views of aspects of the hospital environment that were important for wellbeing of carers and the people they look after. The carers' views were supplemented by relevant material drawn from other interviews from our wider study, which included service users and members of hospital staff. These accounts revealed how informal carers experienced the hospital environment; we interpret our findings through a conceptual framework that emphasises carers' experiences of a ‘journey’ along a ‘caring pathway’ to and through the hospital space. This perspective allows us to make a connection between three bodies of literature. The first relates to phenomenological interpretations of one's environmental perception, formed as one moves through the world. The second derives from the literature concerning ‘permeability’ of hospital institutions. Bringing these ideas together provides an innovative, dynamic perspective on a third strand of literature from health geography that examines hospitals as ‘therapeutic landscapes’. The analysis helps to explore the extent to which carers in this study were positioned as ‘outsiders’ in the hospital space.     

Does integrated governance lead to integrated patient care? Findings from the innovation forum

Good integration of services that aim to reduce avoidable acute hospital bed use by older people requires frontline staff to be aware of service options and access them in a timely manner. In three localities where closer inter‐organisational integration was taking place, this research sought patients’ perceptions of the care received across and within organisational boundaries. Between February and July 2008, qualitative methods were used to map the care journeys of 18 patients (six from each site). Patient interviews (46) covered care received before, at the time of and following a health crisis. Additional interviews (66) were undertaken with carers and frontline staff. Grounded theory‐based approaches showed examples of well‐integrated care against a background of underuse of services for preventing health crises and a reliance on ‘traditional’ referral patterns and services at the time of a health crisis. There was scope to raise both practitioner and patient awareness of alternative care options and to expand the availability and visibility of care ‘closer to home’ services such as rapid response teams. Concerns voiced by patients centred on the adequacy of arrangements for organising ongoing care, while family members reported being excluded from discussions about care arrangements and the roles they were expected to play. The coordination of care was also affected by communication difficulties between practitioners (particularly across organisational boundaries) and a lack of compatible technologies to facilitate information sharing. Finally, closer organisational integration seemed to have limited impact on care at the patient/practitioner interface. To improve care experienced by patients, organisational integration needs to be coupled with vertical integration within organisations to ensure that strategic goals influence the actions of frontline staff. As they experience the complete care journey, feedback from patients can play an important role in the service redesign agenda.     

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia

Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co‐resident with a psychological disability. One‐quarter (27.2%) of these carers reported service demand for respite care, of whom one‐third had used respite services in the past three months and four‐fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under‐utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated.     

Why carers of people with dementia do not utilise out‐of‐home respite services

While many people with dementia require institutional care, having a co‐resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out‐of‐home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community‐dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009–January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non‐use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non‐use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non‐use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out‐of‐home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.     

What do we know about older former carers? Key issues and themes

Despite a significant growth in the number older former family carers, they remain largely invisible in carer‐related research and literature. To begin to address this deficit, a four‐stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes – the concept of ‘older former carer’, the legacies of caring, influences on the legacies of caring, conceptualising post‐caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health‐related legacies older former carers’ experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub‐groups, such as carers of relatives admitted to a care home, than others. Methodology‐related weaknesses include small sample sizes and a focus on a single, often condition‐specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post‐caring tends to be viewed as one of the final temporal ‘stages’ of the carer's ‘care‐giving career’, a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer – namely formerality – as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.     

‘The living death of Alzheimer's’ versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse

Understanding dementia is a pressing social challenge. This article draws on the ‘Dementia talking: care conversation and communication’ project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets – a corpus of 350 recent UK national newspaper articles and qualitative data derived from in‐depth interviews with informal carers. These data were analysed using a thematic discursive approach. A ‘panic‐blame’ framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia ‘preventative’ behaviour in media discourse is problematic, especially in comparison to other more ‘controllable’ and treatable chronic conditions. Engagement with, and critique of, the nascent panic‐blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers.     

Descriptive study of carers' support,encouragement and modelling of healthy lifestyle behaviours in residential out‐of‐home care

Objective: Given the high prevalence of overweight/obesity among young people in residential out‐of‐home care (OOHC), and as their carers are in loco parentis, this research aimed: 1) to examine the healthy lifestyle cognitions and behaviours of residential carers; and 2) to describe resources needed to improve diet and/or physical activity outcomes for residents. Methods: Cross‐sectional data were collected from 243 residential carers. Measures included: demographics; knowledge of dietary/physical activity recommendations; self‐reported encouragement/importance of health behaviours; physical activity/screen time (at work); unit ‘healthiness’; and necessary resources for creating a healthy environment. Results: Staff placed importance on the residents eating well and being physically active. However, examination of carer knowledge found significant gaps in staff education. Three key priority areas were identified to help build a healthy food and activity environment in residential OOHC: funding, professional development and policy. Conclusion: Carer knowledge of healthy lifestyles can be improved and they need to be well resourced to ensure children in public care settings live in a healthy environment. Implications: These findings may inform the development of ongoing professional development to improve carers' health literacy, as well as policy to support dietary/activity guidelines for the OOHC sector.     

What constitutes ‘good care’ and ‘good carers’? The normative implications of introducing reablement in Danish home care

As populations worldwide are ageing, Western welfare states are currently implementing welfare reforms aimed at curbing the rising need for social and healthcare services for ageing populations. A central element in home‐care reforms in several welfare countries is reablement: short‐term home‐based training programmes aimed at re‐enabling older people to live in their own homes independently of care. In this paper, we explore how transitioning from compensatory care to reablement care is not merely a practical process, but also a deeply normative one. Drawing on Annemarie Mol's concept of ‘ontonorms’ we analyse the normative dynamics involved in transitioning from one form of care to another as reflected in reablement professionals' practices and discourses. The paper draws on 10 months of multisited ethnographic fieldwork carried out from April 2015 to February 2016 in a Danish municipality, including participant observations of reablement practices as well as qualitative interviews with 13 professionals working with reablement. We demonstrate that professionals generally consider reablement to represent a desirable shift in home care from ‘bad care’ practices of making people passive through compensatory care, towards ‘good care’ practices of ‘keeping people going’ despite their limitations. Moreover, we demonstrate that while therapists are valued as ‘good carers’ due to their ability to focus on development and training, nurses and in particular home helpers are devalued as ‘bad carers’ due to their ‘caring genes’ and lack of technical and theoretical skills necessary for documentation work. Finally, we discuss the implications of these normative dynamics, which may risk stigmatising compensating care practices, although this form of care to a large extent continues to coexist with reablement practices. In conclusion, we argue for a more nuanced approach to care, recognising compensatory care and reablement as complementary forms of care, each doing good under different circumstances.     

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care‐recipients. Working carers in the UK say that the care‐recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care‐recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care‐recipient dyads in England about perceived need for services for the care‐recipient, disability, unpaid care hour provision and individual and socio‐demographic characteristics. We find that care‐recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer‐recipient and being the daughter or son of the care‐recipient; for care‐recipients it is associated with unpaid care hours, carers’ employment status and carers’ health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care‐recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.     

Evaluation of a West Australian residential mental health respite service

Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi‐structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with “psychosocial disability” in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery‐oriented respite services is highlighted.     

Incredible Years parent training support for foster carers in Wales: a multi‐centre feasibility study

Background the incidence of conduct disorder in young children is 10% in the general population and 37% among fostered children. Up to 40% of untreated children diagnosed with conduct disorder develop problems later in life including drug misuse, criminal and violent behaviour. There are more than 80 000 looked after children in the UK, with 5000 in Wales. Challenging child behaviour is the main reason for placement breakdown and has huge cost implications as challenging children cost up to 10 times more in service use than children without conduct disorder. The Incredible Years (IY) evidence‐based parenting programme is an effective, low cost solution in improving child behaviour and social competence in ‘conventional’ families and thus has the potential to support foster carers in managing difficult behaviours. Our main aims were to establish:

• ? The feasibility of delivery and the effectiveness of the IY parenting programme in supporting carers in managing difficult behaviour in looked after children.
• ? Service use costs for foster carers and looked after child.

Methods This was a 12‐month trial platform study with 46 foster carers in three authorities in Wales. Carers were allocated 2:1 intervention to waiting‐list control. Validated measures were used to assess ‘parenting’ competency, carers' depression levels, child behaviour and service use. Measures were administered at baseline and 6‐month follow‐up. Intervention carers received the programme between baseline and follow‐up. Results Analyses showed a significant reduction in child problem behaviour and improvement in carers' depression levels for intervention families at follow‐up, compared with control. Unexpectedly, there was a significant improvement in control carers' self‐reported ‘parenting’ strategies. Special education was the greatest service cost for looked after children. Conclusions Initial foster carer training could incorporate the IY programme to support carers in establishing positive relationships and managing difficult child behaviour. Programme participation may lead to reduced service use and improved placement stability.     

Caregiver Assessment of Support Need,Reaction to Care,and Assessment of Depression

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.     

Important features of home‐based support services for older Australians and their informal carers

In Australia, newly initiated, publicly subsidised ‘Home‐Care Packages’ designed to assist older people (≥65 years of age) living in their own home must now be offered on a ‘consumer‐directed care’ (CDC) basis by service providers. However, CDC models have largely developed in the absence of evidence on users’ views and preferences. The aim of this study was to determine what features (attributes) of consumer‐directed, home‐based support services are important to older people and their informal carers to inform the design of a discrete choice experiment (DCE). Semi‐structured, face‐to‐face interviews were conducted in December 2012–November 2013 with 17 older people receiving home‐based support services and 10 informal carers from 5 providers located in South Australia and New South Wales. Salient service characteristics important to participants were determined using thematic and constant comparative analysis and formulated into attributes and attribute levels for presentation within a DCE. Initially, eight broad themes were identified: information and knowledge, choice and control, self‐managed continuum, effective co‐ordination, effective communication, responsiveness and flexibility, continuity and planning. Attributes were formulated for the DCE by combining overlapping themes such as effective communication and co‐ordination, and the self‐managed continuum and planning into single attributes. Six salient service features that characterise consumer preferences for the provision of home‐based support service models were identified: choice of provider, choice of support worker, flexibility in care activities provided, contact with the service co‐ordinator, managing the budget and saving unspent funds. Best practice indicates that qualitative research with individuals who represent the population of interest should guide attribute selection for a DCE and this is the first study to employ such methods in aged care service provision. Further development of services could incorporate methods of consumer engagement such as DCEs which facilitate the identification and quantification of users’ views and preferences on alternative models of delivery.     

Missed opportunities for tobacco use screening and brief cessation advice in South African primary health care: a cross-sectional study

Background

Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.

Methods

Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.

Results

Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.

Conclusions

GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.     

Is occupation missing from occupational therapy in palliative care?

Background/aim: The role of occupational therapists in palliative care is largely undocumented in Western Australia (WA). Little is known about the services occupational therapists provide or the needs of people who are dying and their carers in relation to these services. The aims of this study were as follows. First, to determine the number of occupational therapists employed and the range of services they provide in palliative care in WA. Second, with particular reference to self care, leisure, productive roles and occupations, to explore the daily experiences of people who were dying as well as their primary carers to determine the services that might be offered by occupational therapy to this population. Methods: Semi‐structured interviews were used to gather information from carers (n = 10 metro, n = 4 rural) and occupational therapists (n = 13 metro, n = 5 rural). Data were analysed qualitatively using grounded theory to develop categories. Themes were defined using the constant comparison method. Results: Four themes emerged that impacted people who were dying and their carers. These were; ongoing disengagement from usual activities with resultant occupational deprivation; disempowerment of both people who are dying and their carers within palliative care services; ‘occupation’ not being addressed adequately in palliative care and occupational therapists experience frustration with limited opportunities to contribute to the care of people who are dying. Conclusions: This paper highlights gaps in service provision in WA to people who are dying and their carers. It provides direction for occupational therapists to offer an occupation‐focussed approach to the care of this vulnerable group.     

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co‐ordinated way. The cost‐effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross‐sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care‐related quality of life [CRQoL], self‐efficacy and subjective well‐being), use of health and social care services, out‐of‐pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self‐efficacy and subjective well‐being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross‐sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.