Gender differences in informal caring

Men have hitherto largely been invisible in research on informal care. This paper examines gender differences in informal caring, focusing on gender differences according to the relationship between the carer and care-recipient and the location of caring. The paper uses secondary analysis of the 1990–91 General Household Survey, which identified over 2700 adults as informal carers. Four per cent of men and women provide care for someone living in the same household. More women than men, 13% compared with 10%, provide care for someone living in another household. Men carers are less involved in care provision than women, providing fewer hours of care each week, and are less likely to be the main carer. However, gender differences are most marked among married carers, apart from those caring for their spouse, and least among unmarried carers. Married men can often rely on their wives to perform caring roles rather than performing them personally. Women carers are more likely to provide personal care than men carers, but the gender difference is least among those caring for their spouse or for disabled children. Cross-sex personal care is performed within the marital relationship and by parents caring for disabled children, but seldom by adult children caring for their parents or in more distant caring relationships. Evidence of cross-sex taboos in giving personal care is largely restricted to care provided in another household. Since the majority of elderly people in need of care are women, such cultural taboos may reinforce the pressure on mid-life women to care for mothers and mothers-in-law.     

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.     

Transitions to informal care in Great Britain during the 1990s

OBJECTIVES: To estimate annual changes and trends in the population of informal carers and to investigate transitions to caregiving by age, gender, locus of care, and level of involvement. DESIGN: Longitudinal analysis of data from the British household panel survey, 1991 to 1998, an annual prospective survey of a nationally representative sample of more than 5000 private households in England, Scotland, and Wales. SUBJECTS: Over 9000 adults over 16 years interviewed personally in successive waves of the survey, including around 1300 informal carers each year. RESULTS: One third of co-resident carers and 40% of extra-resident carers start caregiving each year and similar proportions cease to provide care. Five year period rates are at least 75% higher than the one year prevalence estimates. Almost everyone is involved in caregiving at one time or another and over half are likely to provide 20 hours or more care per week at some point in their lives. Recent trends indicate that more adults are becoming heavily involved in providing longer episodes of care. Although the onset of caregiving peaks in late middle and early older age, above average incidences span three decades or more of adult life. Age variations in the start of caring relationships are driven by the changing demands for care within and between generations over the life course. There is no firm evidence that carers increase their involvement in caring activities over the first three years of a caring episode. CONCLUSIONS: The population of carers is constantly changing as some people stop providing care and others take on a caring role or vary their level of involvement. Policy measures responsive to the diversity of caring roles, and geared around key transitions, are likely to be most effective in supporting carers through changing circumstances. Recognition and support for carers who are heavily involved in caring activities from the outset should be a priority.     

Carer distress: a prospective, population-based study

This study investigates whether transitions into and out of unpaid caregiving are associated with increased risk for onset of or delayed recovery from psychological distress, and traces the prevalence of distress across successive years of caring activity and after caregiving has ceased. The analysis is based on data from the British Household Panel Survey covering 3000 would-be carers, 2900 former carers, and 11,100 non-carers during the 1990s; their psychological well-being was assessed at annual intervals using the General Health Questionnaire. Carers providing long hours of care over extended spells present raised levels of distress, women more so than men. Compared with non-carers, risk for onset of distress increases progressively with the amount of time devoted to caregiving each week. Adverse effects on the psychological well-being of heavily involved carers are most pronounced around the start of their care episodes and when caregiving ends. Ongoing care increases their susceptibility to recurring distress, and adverse health effects are evident beyond the end of their caregiving episodes. Several groups of carers experience psychological health inequalities compared with non-carers, especially those looking after a spouse or partner, and mothers caring for a sick or disabled child. The findings underline the importance for effective carer support and health promotion of early identification of carers, monitoring high risk groups, timing appropriate interventions, and targeting resources.     

Caring for older people in the 21st century: 'notes from a small island'

Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers' views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home.     

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.     

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.     

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 experiences of the caring dyad: (Un)articulated realities of living with cardiometabolic risk,metabolic syndrome and related diseases in severe mental illness

BackgroundInformal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health.AimThis study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad.DesignBetween October 2018 and March 2020, we conducted 11 in‐depth semi‐structured interviews across 6 adult caring dyads, interviewing each individual separately.SettingDyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support.Variable Being StudiedParticipants were asked about the impacts of illness and caring on daily life.Data AnalysisData were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual.ResultsThemes were identified: enhanced closeness, dissonance and balance within the caring dyad.Discussion and ConclusionsThis study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers.Patient/Public InvolvementIn this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer.     

'Normal disruption': South Asian and African/Caribbean relatives caring for an older family member in the UK

Little has been written on informal care of an older relative among minority ethnic groups in the UK. This paper examines the meanings of being an informal carer of an older family member for South Asian and African/Caribbean carers. The analysis presented here is based on qualitative interviews with 21 African/Caribbean and 15 South Asian carers. Drawing primarily on the notions of biographical continuity, biographical reinforcement and biographical disruption, the meanings of caring are examined. The findings indicate that the experience of informal care has many similarities to the experience of chronic illness. Carers generally described the experience of caring as an accepted part of their biography, talking about their caring relationship in terms of their pre-caring and a continuation of their previous relationship with the person being cared for and their roles within the family. However, the participants also described highly disruptive elements to this change in the relationships. The paper attempts to consider the relationship between individual experiences, cultural factors and macro-social structures.     

A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers' social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.     

The informal sector of welfare: a crisis in caring?

The informal sector is the major provider of informal care for dependent people and everyday care for able-bodied people in Britain. A large and complex sector of care, it has come to occupy a central place in British government policies for health and welfare. Through the 1980s, the informal sector was increasingly identified as a solution to problems in the formal systems of care. The paper reviews the concept of informal care and the welfare philosophies which informed the development of these policies, arguing for a broader and more critical perspective which locates informal care within the context of the wider caring work that goes on in households. Seen in this context, structural features of caring that are celebrated as strengths (its base in kinship relations where carers are unpaid, for example), can be experienced as problematic by those involved in caring. As a case study, the paper focuses on the experiences of mothers caring for children on low incomes for insights into some of the contradictions of caring.     

Legacies of caring: the experiences and circumstances of ex-carers

Although there is extensive literature on carers and their care-giving role, the circumstances of carers after care-giving remains largely uninvestigated. This paper documents the socio-economic and psychological legacies of care-giving among 157 ex-carers who were included in a larger national study of the effectiveness and targeting of social security help to carers, which was carried out in 1989. Therefore, the sample included only those whose care-giving responsibilities had been relatively substantial, that is, over 35 hours a week. Survey data covering the employment status and income levels of these ex-carers are presented, as is in-depth interview material on the psychological and social circumstances of a small group of ex-carers. The article concludes that there are long-term negative financial effects of caring, which the social security system appears to ignore. In addition, the psychological, social and physical health consequences of caring may leave some carers poorly equipped for life after care, a situation which might call for the development of support services in the immediate post-care period. Further investigation of the material and non-material circumstances of ex-carers, preferably on a longitudinal basis, should be a priority in health and social care research. Without such research, our knowledge of the costs of caring borne by individuals, and our assessment of the appropriate contributions that should be made by statutory welfare agencies, remains incomplete. Finally, given the prevalence of informal care-giving, our lack of knowledge of the legacies of care-giving limits our understanding of the causes of income and health inequalities between people approaching pension age and older.     

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 qualitative study of the experience of caring for a person with bulimia nervosa. Part 1: The emotional impact of caring

OBJECTIVE: Family carers of individuals with mental disorders have been found to experience mental health difficulties of their own. There has been little research into the impact of caring for individuals with eating disorders. A preliminary study found that carers of individuals with anorexia nervosa experience more difficulties and distress than carers of people with psychoses (Treasure et al., [2001]. Social Psychiatry and Psychiatric Epidemiology, 36, 343-347). This is the first study to qualitatively investigate the experiences of carers of individuals with bulimia nervosa (BN). METHOD: Twenty carers of individuals with BN were interviewed using a semistructured interview. Interviews were transcribed and the texts analyzed using content analysis to identify themes. RESULTS: The principal themes to emerge were the impact of the discovery of BN on the carer, the ongoing impact of care-giving, coping strategies used by the carer, and the positive impact of the illness for both the carers and the persons in their care. DISCUSSION: BN has a potent impact on carers' lives. This has implications in terms of service provision and future research in this area.     

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

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

The influence of the cardiac surgery patient''s sex and age on care-giving received

Care-giving research has predominantly focused on the care-givers of those with long-term illness and the elderly. Little attention has been given to examining care-giving from the perspective of the person receiving the care, differentiating how the sex or age of the person may influence the care received, or examining care-giving in the context of shorter term situations where the patient is expected to recover. The purpose of this study was to examine the characteristics of the informal care-givers of cardiac surgery patients from three hospitals in one Canadian province and the effect of patient characteristics (sex, age) on their experience of receiving that care. A prospective, non-randomized design, was used to examine the short-term recovery from cardiac surgery of 120 subjects (60 men, 60 women). Patients were interviewed preoperatively and then at monthly intervals through the third postoperative month. The findings from this study suggest that the patterns of informal care-giving noted in the chronic care literature are also present in the short-term care of post-surgical cardiac patients. The burden of care-giving continues to rest predominantly on women. Female patients relied on their spouses for help less frequently than did male patients and their care-givers were more frequently employed outside the home and in lower status jobs than were the care-givers of male patients. 30% of care-givers were reported to have a health problem of their own to manage while caring for the recovering patient. Patients who were male or who were < 65 years of age had higher social support scores than did patients who were female or who were > or = 65 years of age. These findings suggest that the cardiac patient's sex affects the availability of home-based care. In addition, care-givers may themselves be patients in need of care. Further research is needed to examine the receipt of home-based care-giving, particularly for female patients.     

Older carers in the UK: are there really gender differences? New analysis of the Individual Sample of Anonymised Records from the 2001 UK Census

The aim of this paper is to disentangle the role of gender and partnership status in the caring commitments of older people (age 65 and over). Logistic and interval regression models are applied to individual records from the 2001 UK Census to estimate: (1) the impact of gender on the likelihood of being a carer; (2) the impact of gender on the hours of care provided; and (3) the impact of gender on the likelihood of being a carer for different groups defined by marital status. In the general population the share of women who provide care is higher than the corresponding share of men, but men have a higher probability of being carers among people aged 65 or above. This phenomenon is largely explained by gender differences in marital status. As older men are more likely to be married, and married people are more likely to be carers, we observe higher levels of caring among older men. Once differences in marital status are accounted for, the relationship between gender and care provision among older people is overturned. In particular, we find that, without controlling for household size, limiting long-term illness or marital status, the odds of being an informal carer are lower for older women than men [odds ratio (OR): 0.85; 95% confidence interval (CI): 0.83–0.87]. Once these factors are accounted for, older women have higher odds of caring than older men (OR: 1.12; 95% CI: 1.09–1.15). Restricting the sample to care providers, and controlling for the same factors, it is shown that older women supply on average 3.77 (95% CI: 3.14–4.40) more hours of care per week than older men. Gender differences in the provision of care among older people disappear only when considering married individuals and adjusting for the presence of other household residents affected by a limiting long-term illness.