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.     

Training as a vehicle to empower carers in the community: more than a question of information sharing

Much confusion still surrounds the concept of empowerment and how it is to be translated into practice within the context of community care for service users and carers. A major limitation has been the tendency to treat empowerment as synonymous with participation in decision-making with little attention given to the 'ecological' model of empowerment where linkages have been found between community participation and measures of psychological empowerment. Training has been suggested as a means through which carers might become empowered , yet to date little empirical evidence has appeared within the literature to support this proposition. This study investigated whether attendance on a training programme to empower carers resulted in improvements in carers' levels of perceived control, self-efficacy and self-esteem as partial measures of psychological empowerment. The findings demonstrated that whereas carers' knowledge of services and participation increased as a result of the programme, no changes were found in measures of carer empowerment. The failure to consider how training needs to be designed in order to achieve changes in individual competence and self-agency are suggested as the most likely explanation for the lack of change observed in carers' psychological empowerment. It is suggested that community care agencies should focus greater energies in determining how the policy objectives of empowerment are to be achieved through training, and in so doing make far more explicit the supposed linkages between training content, design, and its posited impact on individual behaviour or self-agency.     

Bereaved informal cancer carers making sense of their palliative care experiences at home

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty‐two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed‐method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones’ death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.     

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.     

Trust in older persons: A quantitative analysis of alignment in triads of older persons,informal carers and home care nurses

Self‐management by older persons could be influenced by the level of trust found in triads of informal carers, formal care providers and care recipient, the older person. Little research has been done on care providers’ trust in older persons. This study aims to explore the level of trust that informal carers and home care nurses have in older persons, the extent of alignment in triads and the relationship between trust in older persons and self‐management. We conducted a cross‐sectional survey study in the Netherlands, sampling 133 older persons, 64 informal carers and 72 nurses, which resulted in 39 triads. Alignment level was analysed through Intraclass Correlation Coefficient 1 scores and absolute and mean difference scores. Correlation analysis and one‐way analysis of variance measured the relationship between trust and self‐management. The results show that triads contain both alignment and misalignment. Misalignment occurs mostly when informal carers and nurses have little trust in the older person while this person views their own behaviour towards their caregivers positively. Care providers’ trust levels relate significantly to their perception of the person's ability to self‐manage, but not to the person's self‐rated ability. This could be explained by care providers not communicating their intrinsic trust in the older person to them. Trust building could be enhanced by organising discussions of mutual expectations of trust and both formal and informal care providers could benefit from compassionate assessment training, to learn how to openly express their trust in the older person.     

Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers’ experiences of caring, factors contributing to their stress, and strategies used to overcome stress.

Design: A qualitative approach involving in-depth interviews was used to explore informal carers’ experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.

Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers’ emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers’ pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers’ strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.

Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.     

Systematic review of the effects of telecare provided for a person with social care needs on outcomes for their informal carers

Telecare devices have been put forward as a potentially effective intervention to benefit the well‐being and functioning of informal carers of people with social care needs, and to reduce the negative effects of providing care to a family member or friend. Much of the evidence used to support this view is qualitative, and therefore does not provide good‐quality evidence to answer questions about its effect on carer outcomes. This review aimed to document and evaluate the quantitative evidence base for the effect of telecare interventions on outcomes for informal carers. A systematic search was conducted between October 2009 and January 2010 to identify peer‐reviewed and ‘grey’ intervention evaluations, using electronic databases and expert/interested party recommendations. Clear inclusion and exclusion criteria and a reliable screening process were applied to select papers for inclusion in the review, and a checklist was used to assess risk of bias for each evaluation. Of 1071 identified evaluations, seven fulfilled the inclusion and exclusion criteria. Of these, two were peer‐reviewed, and the remainder were unpublished or internal reports. Included evaluations were heterogeneous; they had investigated diverse technologies and outcomes, using varied evaluation designs and measures. All included evaluations were rated as being of weak methodological quality, indicating risk of bias within the evidence base. The evidence tentatively indicated that telecare exerts a positive effect on carer stress and strain, but there is no evidence to indicate benefits on burden or quality of life. The evidence is conflicting about the effect of telecare on the amount of time carers spend on their caring duties, and on relationships between the carer, cared‐for person and other family members. Additional good‐quality evaluations are required to establish the effects of telecare on informal carer outcomes.     

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.     

Combining informal care and work: supporting carers in the workplace

The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.     

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 gaze and visibility of the carer: a Foucauldian analysis of the discourse of informal care

Working from a Foucauldian perspective, this paper examines the discourse of informal care and addresses three questions. When was it first possible to speak of ‘the informal carer’? What are the characteristics of the discourse of informal care? And, what are the conditions of the possibility of the informal carer’s recognition? Following an analysis of the appearance and conceptualisation of the informal carer in policy and related discourse since the 1970s, the visibility of this figure is situated in the context of the historical transformation of the medical gaze. It is argued that two broad axes of the gaze’s ongoing transformation – its devolution to ‘relays’ and its extension to the whole population and the ‘whole person’–underpinned the shift in emphasis from care in the community to care by the community in the 1970s, and the associated development of the discourse of informal care.     

The physical functioning and mental health of informal carers: evidence of care‐giving impacts from an Australian population‐based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care‐giving. This study investigated the impact of care‐giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care‐giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score‐matched non‐carers. Health was self‐assessed, measured with the SF‐36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care‐giving was classified as non‐carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care‐giving, covariates (including work, family and socio‐demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care‐giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17‐point decline in PF (P = 0.009) and a 14‐point decline in MH (P < 0.0001) after 2 years for female high caregivers working full‐time and 9.3 point improvement (P = 0.02) for non‐working male high caregivers. Change was not significant for non‐carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care‐giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.     

Age and gender of informal carers: a population-based study in the UK

This paper identifies variations in the age and gender characteristics of informal carers in the UK. The paper is based on the Individual Sample of Anonymous Records, a 3% random sample of the 2001 UK Census. The sample size was 1 825 595. Of this sample, 10% were reported to be carers. The analysis shows that informal caregiving is systematically linked with both age and gender. Caregiving increased with age until reaching a peak in the 45-59 age group, in which almost 20% were carers. Similarly, the amount of time spent caregiving increased with age, with the highest levels of caregiving commitment in people aged 80-89 years. Regarding gender, 11.3% of women were carers compared to 8.6% of men and overall women committed more time to caregiving than men. However, this pattern was reversed in later life (70+), where there was a higher proportion of carers and greater time commitment to caregiving amongst men. While the predominance of women as informal carers has been well reported, the importance of men as informal carers in old age is much less commented upon. This study thus suggests that informal caregiving is most prevalent in groups of the population that, according to previous research, may experience most strain from doing so: elderly people who may be frail and often are in a spousal relationship with the care-recipient, and middle-aged women with multiple roles. Therefore, it is of great importance that their particular needs and circumstances are fully taken into account both in the development of formal support and when information about available support is targeted.     

Determinants of informal care-giving in various social relationships in the Netherlands

This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). One-third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care-giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45–64 year olds, women, multiperson households and those with strong family beliefs. Helping second-degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non-kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non-kin is also correlated with beliefs. If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.     

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.     

早期平衡训练对脑卒中患者平衡功能的影响

目的探讨早期平衡训练对脑卒中患者平衡功能的影响。方法 60例有不同程度平衡功能障碍的脑卒中患者随机分为平衡训练组和对照组,每组30例,对照组进行常规康复治疗,平衡训练组在常规康复治疗的基础上增加平衡训练,包括坐位平衡训练、立位平衡训练和行走训练,一月后进行平衡功能的评价。结果对照组治疗前BBS评分和Tinetti评分分别为(36.45±7.33)分、(18.43±2.09)分,治疗后分别为(40.11±6.52)分、(23.05±2.13)分;平衡训练组治疗前BBS评分和Tinetti评分分别为(35.74±6.78)分、(18.51±1.97)分,治疗后分别为(48.95±3.47)分、(26.24±2.11)分,与对照组相比,平衡训练组患者Berg平衡量表和Tinetti平衡功能评分明显增高,差异有统计学意义(P0.05)。结论早期平衡训练对脑卒中患者平衡功能的恢复有促进作用,临床上对于有平衡功能障碍的脑卒中患者应尽早介入平衡训练。     

早期康复训练在缺血性脑卒中的应用

目的探讨早期康复缺血性脑卒中临床疗效。方法运用随机数字表法将2009年9月～2010年9月在某院神经内科治疗的168例缺血性脑卒中患者分为对照组和康复组,每组各84例,对照组患者给予神经内科常规药物治疗,而康复组患者在此基础上早期给予运动疗法、ADL训练及心理干预等康复干预,2周后对所有患者进行临床疗效评价。结果经过为期14d的住院治疗后,康复组患者治疗有效率明显高于对照组(χ2=8.178,P﹤0.05)。结论早期康复训练能明显改善患者的神经功能缺损程度,减轻患者的残疾程度,提高其生活自理能力,值得在缺血性脑卒中患者临床治疗中推广使用。     

Place of death: preferences among cancer patients and their carers

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining. The study design involved an in-depth qualitative interview with each patient soon after referral to the study, followed by an interview some 4 weeks later and subsequent tracking interviews by telephone at 2-4 week intervals until death occurred. Interviews were also conducted with main coresident carers soon after patient referral to the study and again in the post-bereavement period. Thirteen factors were identified as shaping the place of death preference of patients and carers. These are organised into four thematic domains: the informal care resource, management of the body, experience of services, and existential perspectives. In documenting these factors, this paper adds significantly to current knowledge on the factors that shape place of death preference, a field of enquiry acknowledged to be underdeveloped (J. Palliative Med. 3 (2000) 287). More importantly, it uncovers some of the reasons that underpin these preferences. Our research revealed a much stronger preference for deaths in a hospice than had been anticipated, leading us to take a qualified stance on the current policy drive in favour of home deaths by those charged with delivering UK cancer and palliative care services.     

Impact of Medicare eligibility on informal caregiving for surgery and stroke

Objective

To assess whether the intensity of family and friend care changes after older individuals enroll in Medicare at age 65.

Data Sources

Health and Retirement Study survey data (1998–2018).

Study Design

We compared informal care received by patients hospitalized for stroke, heart surgery, or joint surgery and who were stratified into propensity-weighted pre- and post-Medicare eligibility cohorts. A regression discontinuity design compared the self-reported likelihood of any care receipt, weekly hours of overall informal care, and intensity of informal care (hours among those receiving any care) at Medicare eligibility.

Data Collection

Not applicable.

Principal Findings

A total of 2270 individuals were included; 1674 (73.7%) stroke, 240 (10.6%) heart surgery, and 356 (15.7%) joint surgery patients. Mean (SD) care received was 20.0 (42.1) weekly hours. Of the 1214 (53.5%) patients who received informal care, the mean (SD) care receipt was 37.4 (51.7) weekly hours. Mean (SD) overall weekly care received was 23.4 (45.5), 13.9 (35.8), and 7.8 (21.6) for stroke, heart surgery, and joint surgery patients, respectively. The onset of Medicare eligibility was associated with a 13.6 percentage-point decrease in the probability of informal care received for stroke patients (p = 0.003) but not in the other acute care cohorts. Men had a 16.8 percentage-point decrease (p = 0.002) in the probability of any care receipt.

Conclusions

Medicare coverage was associated with a substantial decrease in family and friend caregiving use for stroke patients. Informal care may substitute for rather than complement restorative care, given that Medicare is known to expand the use of postacute care. The observed spillover effect of Medicare coverage on informal caregiving has implications for patient function and caregiver burden and should be considered in episode-based reimbursement models that alter professional rehabilitative care intensity.