Cohort study of informal carers of first-time stroke survivors: Profile of health and social changes in the first year of caregiving

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.     

The social consequences of living with and dealing with incontinence--a carers perspective

Incontinence is a discrediting and stigmatising condition for those who experience it, as it signifies a person who is lacking in self-control. For their carers, the very nature of undertaking 'dirty work' signifies a low status and low paid job. Those health care professionals higher in status and financial reward put distance between themselves and bodywork, especially bodywork that deals with bodily decay. However, little is known or has been highlighted about the social consequences that living with and dealing with incontinence can have on informal carers. In this paper we examine the notion of dirty work and 'unbounded' bodies in the role of informal carers. Through qualitative interviews with carers of stroke survivors the negative social consequences of dealing with incontinence for both the survivor and the carer are explored. We also examine the strategies employed by carers and stroke survivors in order to manage the symptom in an attempt to prove the adult status of the survivor and to protect both the identity of the survivor and the carer. The embarrassment of leakage and the moral danger of odour can lead some carers and survivors to make decisions that can isolate both within the confines of their home. In this sense the very meaning of home is transformed into an isolated and marginalised space.     

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.     

The impact of stroke on informal carers: a literature review.

Stroke incidence is set to rise in Western societies as population projections predict an increase in the proportion of older people. Most of these stroke survivors are supported by close kin members who play an important role in the rehabilitation and care of this group. The objective of this review was to establish the following: (a) to evaluate the impact of the stroke on the informal carers' quality of life, (b) to identify factors which help carers to cope with their caring role, (c) to evaluate health service provision for stroke carers. A systematic literature search using BIDS-EMBASE, MEDLINE and PSYCHLIT, identified 31 relevant studies. These showed that most studies concentrated on carers' psychological health and the negative impact that the stroke had. Carers ability to cope with the stroke was enhanced both by the use of positive coping strategies and more concrete measures e.g. more stroke information. Furthermore, whilst most carers were generally satisfied with health services, the few interventions directed at improving carer outcomes showed mixed results. The studies reviewed had many limitations; few gave definitions of 'informal' carer and there was a predominant use of cross-sectional studies and non-standardised outcome measures. Future studies should broaden their research question to evaluate quality of life, using standardised measures to do this and employing either a longitudinal or randomised control design to improve the robustness of results. More studies are also needed evaluating the effectiveness of health services on carers' quality of life.     

Formal carers: attitudes to working with the dementing elderly and their informal carers

This paper presents a discussion of some of the results arising from a study into the inter-relationships between the dementing elderly in the community, and their informal and formal carers. The results from one phase of the study, which gathered data from informal carers, were used in the development of an attitudinal questionnaire. The questionnaire was distributed to a sample of 60 formal carers drawn from a wide variety of health, social and voluntary services. The questionnaire sought to gather data about the formal carers’ responses to their work with dementing people and their co-resident informal carers. The results of the questionnaire indicated that most of the formal carers believed that it was part of their job to maintain the dementing person in their own home and that they were effective in doing this. However, many of the respondents were uncertain whether homecare was best for the dementing person. The results also suggested that the majority of respondents felt that maintaining the dementing person at home was not detrimental to the informal carers welfare and that their intervention was effective in supporting the informal carer. These findings are discussed within the context of the informal carer phase of the study and demonstrate some variance between the formal and informal carer perspectives of care control and the significance of formal carer input.     

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long‐term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty‐four semi‐structured interviews, with 25 participants were conducted, audio‐recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self‐identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.     

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.     

An assessment of the relationship between informal caring and quality of life in older community‐dwelling adults – more positives than negatives?

The main objective of the study was to apply the recently developed Index of Capability (ICECAP‐O) instrument to measure and value the quality of life of a representative sample of the older South Australian population (aged ≥ 65 years) according to carer status. A Health Omnibus survey including the ICECAP‐O instrument, carer status (informal carer vs. non‐carer) and several socio‐demographic questions was administered in 2009 as a face‐to‐face interview to 789 individuals aged 65 years or older in their own homes. A total of 671 individuals (85%) characterised themselves as a non‐carer and 115 individuals (15%) characterised themselves as an informal carer. In general, carers exhibited relatively high quality of life as measured by the ICECAP‐O, with carers having comparable mean ICECAP‐O scores to non‐carers in the general population [carers: mean (SD) 0.848 (0.123), non‐carers: mean (SD) 0.838 (0.147)]. The results of the multivariate regression model for the total sample indicated statistically significant variations in overall ICECAP‐O scores according to age (with younger participants tending to have slightly higher scores on average), country of birth (with those participants who were born in Australia having higher scores on average than those who were born elsewhere) and household income (with participants with higher income levels having higher scores on average). The results of the multivariate regression model differentiated by carer status also indicated some important differences. Specifically, average ICECAP‐O scores were noticeably lower for carers who are separated or divorced and for carers who lived alone and these differences were statistically significant. The study findings provide support for the existence of process utility in informal care‐giving. The provision of informal care may be associated with a positive impact upon quality of life for many caregivers, which may mediate the negative aspects arising from the burden associated with informal care‐giving.     

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.     

Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.     

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.     

Development and results of a questionnaire to measure carer satisfaction after stroke.

STUDY OBJECTIVE--To develop a carer satisfaction questionnaire for use as an outcome measure in stroke, to test the measure for reliability and validity, and to survey levels of carer satisfaction with services for stroke patients. DESIGN--Postal survey of carer satisfaction with stroke services was carried out using the questionnaire we developed and tested. Internal consistency was tested and construct validation was explored by examining correlations with other outcome measures (the Faces Scale, the Nottingham Health Profile, the short form of the Geriatric Depression Scale, and the patient's Barthel Index score). SETTING--Two adjacent districts in North East Thames Regional Health Authority. PARTICIPANTS--A total of 103 carers were identified from 219 people who had survived a stroke to six months. During the pilot stage, six of seven carers who were invited to participate in in depth interviews and 15 of 23 carers (65%) who were invited to completed the first draft of the questionnaire. MAIN RESULTS--The questionnaire was divided into two sections, one on inpatient services (Carer Hospsat) and one on services after discharge (Carer Homesat). The questionnaire had construct validity, providing significant correlations with the Faces Scale (Carer Hospsat r = 0.59, p < 0.00001 and Carer Homesat r = 0.68, p < 0.00001), the patients' Barthel score (Carer Hospsat r = 0.25, p = 0.01), and the patients' Nottingham extended Activities of Daily Living (ADL) scale (Carer Hospsat r = 0.31, p = 0.002). Internal consistency was high for both sections (Cronbach's alpha: Carer Hospsat 0.87, Carer Homesat 0.79). Most carers (77%) were satisfied with the care their relative or friend received while in hospital, but only 39% were satisfied with services after discharge. CONCLUSIONS--Carer satisfaction is an important outcome measure in stroke research. This study has shown that carers are dissatisfied with services after hospital discharge. Our questionnaire is valid, reliable, and sensitive and could be used to test interventions aimed at improving services.     

System induced setbacks in stroke recovery

This study reports research on the experiences of stroke survivors and their informal carers who are receiving stroke services in the community. As part of a qualitative evaluation of a Pilot Community Stroke Service in Nottingham, England, interviews were conducted with stroke survivors, their families and friends, alongside interviews with the managers and professionals providing the service. The findings from the interview data were compared across cases and with findings from analyses of documentary data such as clients' individual plans, and participant observational data, such as those of team meetings. Data analysis revealed that of the 57 survivors, 13 had suffered setbacks that were a direct consequence of their interactions with health and social care services and were system induced. This paper introduces and discusses the concept of the system induced setback by exploring the experiences of these 13 survivors. Implications for understanding the interplay of service provision and disease process are highlighted.     

Home-based care provision within the German welfare mix

With the introduction of long-term care insurance (LTCI) in 1995/96, Germany established a universal long-term care scheme within a cost containment framework to provide public support in defined situations of care dependency. The scheme aimed to promote ageing in place with an emphasis on public support for family care provision as a precondition. A further aim was the expansion of market-oriented professional care services to offer users a choice between family and professional care provision and care providers. The focus of this study is on the interplay of formal and informal family care provision within the institutional framework of LTCI, as well as the organisation, regulations and mix of different types of formal care services. In a first step, an examination of the interplay of formal and informal care provision shows the largely family-oriented care strategy, the burdened situation of informal carers, the mix of rationalities of service use and their interrelationship with socioeconomic inequality. In a second step, an analysis of the organisation of different types of formal services reveals paid care provision that emerges in the interplay of politicians' strategies to develop professional care services within the framework of LTCI, bottom-up strategies of users to increase the range of services outside the framework of LTCI and efforts of politicians to regulate the latter. Basic orientations of care provision underlying the development process such as user orientation, quality and comprehensiveness guided the process and are used to analyse the development. Finally, the discussion of the situation of care workers reveals a contradictory picture with increasing employment opportunities, a comparably well-qualified workforce and worsening employment conditions. Empirically, the research is based on an institutional analysis of LTCI combined with a literature review and representative statistics.     

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.     

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.     

Regenerative medicine: Stroke survivor and carer views and motivations towards a proposed stem cell clinical trial using placebo neurosurgery

Background

Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2‐arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability.

Objective

To explore views and motivations towards a proposed 2‐arm stem cell trial and identify factors that may impede and enhance participation.

Design

This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action‐research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40‐75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach.

Discussion and Conclusion

Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post‐trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2‐arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation.     

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.     

The use of pluralistic evaluation to explore people's experiences of stroke services in the community

The aim of the present study was to explore the experience of stroke survivors and their informal carers of stroke services in the community, as part of a pluralistic evaluation of a Pilot Community Stroke Service (PCSS) in Nottingham, England. The research design involved qualitative in-depth interviews with four main stakeholder groups in the evaluation, in combination with analyses of varied data sources, including participant observational and documentary. In addition to interviews with 57 stroke survivors and their carers (as appropriate), interviews were conducted with the team of the PCSS, individually and as a group, and with a range of other workers. The pluralistic approach of the evaluation revealed that tensions and social conflicts at the interface between services, and particularly between health and social care services, had a negative impact on the quality of life of clients and carers alike, which were experienced as 'setbacks', and which could be shown to be system induced. Such 'System Induced Setbacks' also had negative consequences for the team of the PCSS, since rather than being a 'top up' service, in such cases it became a 'mop up' service, compensating for the shortfall in service provision. Thus its aims and objectives could not be fully realized. It was concluded that pluralistic evaluation had a number of strengths including that, because of its attention to process and social context, it revealed the existence of System Induced Setbacks and their negative and long-term impact on the daily lives of clients and carers, and on the team of the PCSS, in a way which would not have been possible had a quantitative approach been used.