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.     

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.     

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

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

Hidden caring,hidden carers? Exploring the experience of carers for people with long‐term conditions

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain ‘hidden carers’. We aimed to explore how carers of people with common long‐term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term ‘carer’ or access for support. We conducted semi‐structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared‐for person. The data were interpreted in terms of types of ‘work’ undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring ‘work’. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self‐management of LTCs in the community must be complemented by recognition of this group as potentially ‘hidden carers’, who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.     

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.     

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.     

Discharge Planning Quality from the Carer Perspective

Discharge planning endeavours to assist the transition of patients from the acute hospital setting into the community. We examined the quality of discharge planning from the perspective of the carer. Spouses were the most common carers for the elderly patients in our study. Many carers were also elderly, with their own health problems. Using a new instrument (entitled PREPARED) (K. Grimmer and J. Moss, Int J Qual Health Care (in press)), carers rated the quality of planning for discharge much lower than did the patient, indicating that their needs were often not met when discharge was being planned. In free text responses, carers expressed their dissatisfaction over communication about how the family would cope once the patient went home. Carers generally had lower summary mental quality of life scores than the Australian norms (as measured by the SF-36 health survey (J. Ware and R. Sherbourne, Med Care 1992; 30: 473–483)), suggesting that the caring role may have impacted upon their emotional wellbeing. The rate of use of community services in the first week post-discharge was low, suggesting that carers and patients carried the majority of the burden immediately after discharge. We suggest that planning for hospital discharge requires more consideration of the carer. This revised version was published online in July 2006 with corrections to the Cover Date.     

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.     

Carers’ representations of affective mental disorders in British Chinese communities

Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers’ narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients.     

'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.     

Carers' reflections on nursing home and NHS long-stay care for elderly patients

The aim of this study was to compare the perceptions of carers of elderly long-stay care patients who are now in nursing homes in three health districts in a former Regional Health Authority and in remaining long-stay geriatric National Health Service (NHS) wards. One hundred and ninety-eight nursing home carers (78%) and 128 NHS carers (83%) were interviewed by telephone, using a semi-structured questionnaire and open questions. The impact of caring at home was shown to be greater on NHS than on nursing home carers. Most were satisfied with the care, staff and atmosphere of the nursing home or hospital. Nursing homes were perceived to offer better ‘hotel’ facilities and a more pleasant environment. They were seen as better at respecting patients' privacy. The NHS was regarded as superior in offering clinical and rehabilitative services. Most participants thought the institution was the right place for their relative, although in general, it was thought to be better to care for elderly people at home. ‘Care in the community’ was supported, but carers were realistic about alternatives when informal care ceased to be a reasonable option. There was little ‘choice’ between public and private sector care. For many patients, entry into the institution followed directly from an acute hospital admission. The only choice was between care in a long-stay facility or remaining at home, with the patient becoming increasingly dependent and the carer becoming increasingly unable to cope. The formal aspect of community care should be to be organized rationally and accepted as a valid response to the needs of some dependent elderly patients and their carers.     

Do they look after their own? Informal support for South Asian carers

Policy on care in the community was founded on the premise that the care of frail elderly people with disabilities would be a joint responsibility for health and social care professionals, and family carers, supported by people within their social networks. The policy assumes that such social networks are common features of all communities in contemporary Britain, containing a reserve of people who can be called upon to provide support to carers. The present paper draws on material gathered for a qualitative study of the experiences carers in South Asian communities to examine the quality and quantity of informal support that was available in different types of households. Male and female carers were selected from the Punjabi Sikh, Gujarati Hindu, and Bangladeshi and Pakistani communities. A total of 105 carers participated in the project. Participants were caring for people in all age groups with physical and/or mental distress, and in some cases, with multiple and complex impairments. The analysis of carers' accounts suggested that, for a variety of reasons, the main carer, irrespective of gender, had limited support both in nuclear and extended households. In addition, societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks. The paper concludes that the evidence does not support the assumption about extended families, and their willingness and ability to support carers. Many issues highlighted in this paper have far-reaching implications for policy makers in many countries in the West where South Asian people have made their homes.     

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

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

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.     

Correlates of wellbeing of spousal and children carers of disabled people over 65 in Spain

BACKGROUND: The aim of this study was to evaluate the associations between carer's wellbeing and stressors and to assess if these associations are different for spousal and children carers of disabled elderly. METHODS: Information was collected by home interviews of a population sample of carers (N = 195), who were providing assistance in activities of daily living to a community-dwelling population over 65. Associations between indicators of wellbeing (number of depressive symptoms, number of physical symptoms, self-perceived health and life satisfaction) and caring stressors were examined, controlling for carer's socio-economic characteristics and health status. Hierarchical logistic regressions were used to fit the data. Religion and social support were included as resources and spousal and children differential associations were tested. RESULTS: The four indicators of wellbeing are moderately correlated, indicating a common underlying concept. Spousal carers have lower socio-economic status, poorer health and lower levels of wellbeing than children carers. However, children carers bear a significantly greater burden. In the multivariate analysis of the associations between wellbeing and stressors, the similarities between spouse and adult child carers are more striking than the differences. Emotional support was consistently associated with higher levels of wellbeing while the associations of religiosity and instrumental support with wellbeing did not reach statistical significance. CONCLUSION: As formal care services are being developed in Spain, their ability to work in a supportive way with family networks should be taken into account. Research should be carried out on patterns of formal care interventions that use the resources in the natural support network of the family.     

Which informal carers are most satisfied with services for dying cancer patients?

This paper examines the relationship between the satisfactionof informal carers with the care delivered to dying people inthe last year of life and patient and carer characteristics.A secondary analysis was conducted on a subsample from the RegionalStudy of Care for the Dying (RSCD) in which bereaved relativesor friends of a random sample of deaths in 1990 in 20 healthdistricts across England were interviewed some 10 months afterthe death. There were 1,858 informal carers who were close relativesor friends/neighbours of people who died from cancer in thisanalysis. Results show that highly satisfied carers were thosewho perceived caring as rewarding (OR=2.31, 95% Cl: 1.04–5.11),those who reported having had no unmet needs while caring forthe deceased at home (OR=2.50, 95% Cl: 1.87–3.34), andthose who rated their post-bereavement health as excellent (0R=2.61,95% Cl: 1.70–3.90). Reporting for the deceased who wereowner-occupiers was also associated with a high odds ratio forsatisfaction (0R=2.52, 95% Cl: 1.37–4.61). Factors suchas the patient's duration of functional limitation, the durationof confusion and psychological symptoms, and the carer's strengthof religious faith were also found to predict satisfaction butto a lesser extent. Health planners and managers should be awarethat informal carers' overall satisfaction with health and socialservices is predicted by carer and patient attributes.     

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.     

Disciplinary power and the process of training informal carers on stroke units

This article examines the process of training informal carers on stroke units using the lens of power. Care is usually assumed as a kinship obligation but the state has long had an interest in framing the carer and caring work. Training carers in healthcare settings raises questions about the power of the state and healthcare professionals as its agents to shape expectations and practices related to the caring role. Drawing on Foucault's notion of disciplinary power, we show how disciplinary forms of power exercised in interactions between healthcare professionals and carers shape the engagement and resistance of carers in the process of training. Interview and observational field note extracts are drawn from a multi‐sited study of a training programme on stroke units targeting family carers of people with stroke to consider the consequences of subjecting caring to this intervention. We found that the process of training informal carers on stroke units was not simply a matter of transferring skills from professional to lay person, but entailed disciplinary forms of power intended to shape the conduct of the carer. We interrogate the extent to which a specific kind of carer is produced through such an approach, and the wider implications for the participation of carers in training in healthcare settings and the empowerment of carers.     

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.