A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services

The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health. This was a cross-sectional survey undertaken in one district in each of four randomly selected health authority areas in England. Structured interviews, comprising closed and open questions, with 184 informal carers and 93 associated older care recipients were conducted in participants' own homes. Data were gathered on the number and type of medication-related problems experienced in relation to the informal caring role, and the impact of these from carers' perspectives in terms of coping and health. Sixty-seven per cent of carers reported problems with at least one medication-related activity. Problems were associated with all types of medication-related activities, and experienced by carers providing different levels of care for older people. Four themes were identified from carers' accounts which illustrated a diversity of practical problems and anxieties: maintaining continuous supplies of medication in the home; assisting with administration; making clinical judgements; and communicating with care recipients and health professionals. Carers reporting greater numbers of medication-related problems were more likely to experience higher levels of carer strain (P < 0.001) and poorer mental health status (P < 0.001). The findings of the present study provide insights to inform the development of primary care services to support informal carers in the management of medication for older people.     

A survey of those who care for the elderly at home: their problems and their needs

One thousand and sixty-six over 70s were interviewed in their own homes, 256 of the subjects had main carers who were non-statutory. These informal carers of the dependent elderly were then interviewed to examine the nature of the care that they provided, the assistance both formal and informal that they received and the consequences such caring had on their quality of life. The evidence from this study supports the view that the family is the main source of assistance to dependent elderly; usually the woman in the family. Very little assistance, either informal or formal, was received by the carers. Consequently there was a great deal of distress and psychological morbidity among the carers.     

Informal care: the views of people receiving care

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.     

Formal support of stroke survivors and their informal carers in the community: a cohort study

This cohort study, aims to explore formal care provision to stroke survivors and their informal carers in the community in the UK. An initial cohort of 105 cohabitant carers of first-time stroke patients was recruited while the stroke patient was in hospital. Structured face-to-face interviews were carried out with carers prior to discharge of the stroke patient home, at 6 weeks after discharge, and 15 months after stroke. Questionnaires included measures of psychological health (CIS-R), physical health (self-rated health), social well-being (relationship quality and Sarason's social support questionnaire), handicap of the stroke survivor (Oxford Handicap Scale) and formal community support (amount of formal support and carer satisfaction). Multiple services were involved with most survivor-carer pairs (mean 5.4; range 2-9; SD = 1.7), and 74% of carers were satisfied with formal support provided. Number of services decreased with time (5.5 versus 4.1, t = 4.201, d.f. = 52, P < 0.001, 95% confidence interval: 0.71-2.01) but not time allocated. Using stepwise linear regression, service provision early after discharge was predicted by: level of handicap, recruitment centre, carer self-rated health, number of informal supporters and other care commitments. Satisfaction was predicted by quality of informal support and activity restriction. Fifteen months after stroke, predictors of formal care were: level of handicap, quality of informal support and previous caring experience. Predictors of satisfaction were: quality of the relationship between the stroke survivor and carer, age and mood. Quality of services was good, but carers lacked information, had insufficient help and were not consulted enough. Carer distress is common, yet not currently a factor influencing support provision. Formal care provided adapts with time reflecting the importance of quality of support from friends and family rather than quantity of informal supporters. These factors should be taken into consideration when planning and providing formal support for stroke survivors and their carers.     

Who cares for the carers? The district nurse perspective

BACKGROUND: Community care of elderly and disabled people is increasing. Primary care teams are expected to provide support to the informal carers essential for its success. OBJECTIVE: To explore district nurse (DN) views about roles of the primary care team and what is needed for support of informal carers. METHOD: A qualitative analysis of open-ended questions contained in a larger postal questionnaire. RESULTS: DNs viewed improved respite care, general support and information provision as priorities for supporting carers, and lack of resources and access as the main reasons why they could not be more active. They thought other team members might be better placed to take that role. GPs were seen as key members of the primary care team providing services, actively identifying carers and co-ordinating other services and team members. CONCLUSION: DNs identified several areas of support for carers that could be improved: respite, information provision and general support services. They did not feel able to be pro-active in support of informal carers themselves and viewed the GP in that role as a central co-ordinator of care and services.     

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.     

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.     

Informal carers' experiences of caring for a person with heart failure in a community setting

Heart failure (HF) is a life‐limiting condition with a poor prognosis and unpredictable disease trajectory. HF brings physical and emotional challenges for patients and their carers. Predominantly the informal carer population consists of older females, however, caring is evolving as longevity increases and complex conditions are becoming more commonplace. Consequently, more men and younger people are contributing to daily care. The aim of this study was to explore the positive as well as negative dimensions of caring in HF across a range of carer characteristics. Fourteen semi‐structured interviews were conducted with informal carers of people with HF in the UK (median age 71; female 10). Interviews were transcribed verbatim and analysed with the assistance of NVivo10 using Interpretative Phenomenological Analysis. Findings from the study demonstrated that most participants considered caring as integral to their relationships. Dimensions facilitating positivity in caring included compassion, thoughtfulness and understanding. An ability to cope was influenced by a range of attributes including quality of relationships in the carer/patient dyad and with formal social care providers who offered access to tailored and timely information and support. The unpredictable HF disease trajectory influenced the carer experience and enhanced the challenges encountered. The information needs of carers were not always adequately met and younger adult carers expressed particular difficulties with appropriate information and support. Expectations of our informal carer population are increasing and evolving. Health and social care policy requires innovative proposals for the funding and delivery of health and social care that has the contribution made by informal carers at its core.     

Which carers of family members at the end of life need more support from health services and why?

With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005–June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.     

Evaluating the effects of a multicomponent support service for people recently diagnosed with dementia and their carers: A qualitative study

Introduction

Although prior research has provided an understanding of the needs of people living with dementia (PLWD) and their carers, less is known about how tailored multicomponent interventions impact their lives. This study explored the effect of providing ongoing support to people who had been recently diagnosed with dementia and to their carers.

Methods

We conducted interviews with a convenience sample of key stakeholders: 11 interviews with people who had dementia and their familial carers (n = 14) and six interviews with staff and other practitioners involved with the service (n = 13). Inductive thematic analysis was performed on the data.

Results

Four themes were developed: the service as a source of respite, peer support, activities as facilitators of emotional wellbeing, and social support. The service was well-respected, credible, and trusted and was highly valued by practitioners, clients, and carers. It had a clear role in supporting PLWD and their carers. Peer support provided through the service contributed to greatly reducing self-reported carer burden.

Conclusion

Recommendations arising from this study include offering holistic services to PLWD and their carers, developing activities for men, raising awareness of services among practitioners working with PLWD, and improving partnerships between services and agencies working with older people.

Patient or Public Contribution

Service users were consulted on the themes generated from the data and were asked to provide feedback to help guide the interpretation of the data and ensure this reflected their views and experiences.     

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.     

Mental health carers’ experiences of an Australian Carer Peer Support program: Tailoring supports to carers’ needs

Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers’ experiences within a community‐based CPSW pilot program in an Australian mental health service. Semi‐structured phone interviews were conducted with 20 carer participants in 2015, 5–10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the “ripple effect” the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.     

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.     

Informal care and terminal illness

This paper is based on a study of the care and services received by people in the year before death in one Yorkshire health authority. In the spring of 1997 in-depth interviews were carried out with bereaved relatives and carers of a weighted sample of 33 people who had died in one Yorkshire health authority in the previous 18 months. Deaths where people were judged to have needed no input from palliative care services were excluded. The sample covers a range of different caring arrangements, experiences of caring for someone who is dying, support from formal services, place and manner of death. All those interviewed were providing some form of informal care or support to those who died, in some cases 24-h care. The interviews provided a valuable insight into ordinary people's experiences of death and of caring for someone who is dying. Most importantly for the purposes of this study, they gave insight into their experiences of services to support both the dying person and themselves in their caring role. The paper discusses the ways in which care of the terminally ill is distinctive. It explores the role of informal care in relation to the wider character and history of the local community, in particular the significance of its declining industrial base, and secondly, the availability of appropriate services to support those caring for the terminally ill. Finally, it makes recommendations about service planning and delivery which challenge the current framework for providing services to the terminally ill.     

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.     

A questionnaire to measure satisfaction with community services for informal carers of stroke patients: construction and initial piloting

Stroke affects 120 000 people each year in the UK and is the most common cause of adult-onset disability. Most stroke patients are cared for at home by informal carers. Support for these carers is provided by the community services, but although single-item measures have shown that there is a relatively high level of dissatisfaction with those services, there is no specific satisfaction measurement instrument. The present study aimed to construct and initially validate a questionnaire to measure carers' satisfaction with community services for clinical and research purposes. Qualitative interviews with a purposive sample of informal carers of stroke patients identified via stroke unit discharge records gave information about content, context and language. Together with information from the carers' literature, this formed the basis of the questionnaire. A self-completion questionnaire proved unacceptable to carers with a very poor response rate (20%). Face-to-face interviews were more acceptable, with the questionnaire taking approximately 10 minutes to administer. All carers approached agreed to take part and only three carers dropped out from follow up, all because of reasons not related to the study. Initial validity and reliability testing with a sample of 44 carers identified through stroke groups and general practice showed good correlation with a single-item satisfaction measure (RHO = 0.797), test-retest reliability (RHO = 0.885) and inter-rater reliability (RHO = 0.868), and a high degree of internal consistency (Cronbach's alpha = 0.859). Further validation with larger and more diverse groups of informal carers is needed before the questionnaire can be considered to be a robust and reliable tool. Factor analysis revealed seven factors: information about community support and involving the carer; amount, appropriateness and coordination of services; information about stroke; speed of change and concern about the carer; listening to the carer and being heard; problem management; and confidence in and accuracy of information. These factors have marked similarities to those found in the field of patient satisfaction with community services.     

Improving long-term outcome after stroke--the views of patients and carers

Stroke is a major cause of long-term disability, often with devastating consequences for individuals and their families. Suggestions for alleviating these problems have come from professionals, but patients and carers have not specifically been asked their views on how to improve outcome. The results show that most care and support came from informal sources, formal services were poorly targeted and a third of carers were under considerable strain. Recommendations are made for improving services and support for patients and their carers.