Family Carers Of Older People Research Articles

THE ROLE OF SOCIAL ENTERPRISE ORGANIZATIONS IN SUPPORTING FAMILY CARERS OF OLDER PEOPLE LIVING WITH DEMENTIA

Abstract This paper aims to present findings from a primary qualitative study that explored the role of social enterprise organisations (SEOs) in delivering co-produced support for family carers of older people living with dementia (PLWD). Defined in the UK, as businesses with a social or environmental purpose, SEOs are increasingly recognised as occupying a unique space in the landscape of adult social care delivery. In Wales, devolved legislation requires public bodies to collaborate with SEOs - this provision is intended to create a mixed economy of care with co-produced user-led services. To date, however, there is little firm evidence of SEOs delivering co-produced care solutions within the policy framework in Wales, which can be understood to be particularly permissive of SEO involvement, or of how the sector is involved in the delivery of support for family carers of older PLWD. Findings gathered through five focus groups with a purposive sample of family carers, and SEO care providers in South Wales, show how co-produced family carer support programmes are navigated and enacted, as well as how the individual agency of service providers, PLWD, and their carers are involved in these processes. Adopting an ethics of care approach, and utilising reflexive thematic analysis, key themes identified include competition between and within organisations, parochialism, capacity, and organisational barriers. This study highlights implications for policy and practice related to the rhetoric of co-produced support services for family carers, SEOs’ views on delivering that support, and family carers’ experiences of navigating and receiving SEO-delivered services.

Seeking a care–life balance: family carers’ perspectives on how quality of life can improve when caring for an older person living with dementia

Many family carers of older people living with dementia report reduced quality of life, but limited research has investigated what they believe could improve it. Our thematic analysis of in-depth interviews with 23 family carers questions the standardisation of carer support and the appropriateness of the current scope of services, and suggests strengthening carers’ independent right to support. We propose the notion of a ‘care–life balance’, which also draws attention to the different logics inherent in informal and formal care that future service development should seek to reconcile to better support families affected by dementia.

Factors associated with family carers’ fall concern: Prospective study protocol

BackgroundFamily carers are important in preventing community-dwelling older people from falling. Family carers’ concerns about older people’s risk of falling could affect their own physical and psychological health, lifestyle, and burden of care. While there are many studies exploring factors associated with fear of falling among older people, there is no research on family carers’ fall concern of older people (care recipients) who are hospitalised. AimThis paper describes a prospective study protocol exploring the relationship of fall concern, psychological distress, and quality of life of family carers when their care recipient is hospitalised and after discharge. MethodsThe study will recruit 180 family carers and older people. Family carers providing support for an older person without cognitive impairment who has been admitted to a private metropolitan hospital in Western Australia and assessed to have a risk of falling will be included. Data will be collected using an interviewer-administered survey. All participants will complete the survey within 48 h before the patient’s discharge, follow-up one week later (only for family carers), and again 30 days after the patient is discharged. Data related to falls, fall concern, psychological distress, and quality of life will be obtained from family carers and care recipients. DiscussionThis study will provide deeper understanding about the factors affecting fall concern among family carers of older people during hospitalisation and after discharge. This will help healthcare professionals better support family carers to implement fall prevention strategies for older people whilst in hospital and in the community.

Health and well‐being of sibling carers of adults with an intellectual disability in Ireland: Four waves of data

AbstractBackgroundAs the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well‐being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS‐TILDA) provides a unique insight into the health and well‐being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS‐TILDA Carer's Study.MethodsThe IDS‐TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3‐yearly cycle. The family carers complete a self‐administered, mixed‐methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS.FindingsIn each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard.ConclusionsThere is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well‐being as they provide care for an increasingly ageing sibling.

Experiences of family carers of older people in marginalised communities in Namibia

Namibia’s lengthy colonial history and current high levels of inequality foreshadow care in the context of poverty and marginalisation, and within families that are diverse and whose care capacities are poorly understood. Focus group interviews with family carers of older people in two marginalised communities provide insights into their experiences of care. We highlight three findings: first, contexts of care perpetuate and entrench marginalisation; second, care is not widely shared within families, raising questions of what it means to ‘do family’; and, third, care has negative consequences for carers and their families, foreshadowing generational replication of carer exclusion.

The Impact of COVID-19 on the Health and Experience of the Carers of Older Family Members Living with Dementia: An Italian-Hungarian Comparative Study.

This quantitative study (n = 370) compares the pandemic-related experiences of the family carers of older people living with dementia during the first wave of the pandemic, in two countries with different care regimes: Italy (Mediterranean) and Hungary (Eastern European). It aims at answering the following research questions: (1) How did the pandemic affect the subjective health of carers, and what were their experiences with care-related worries and workload? (2) What factors significantly predicted negative changes in these experiences? (3) What were carers’ main difficulties during the first pandemic wave? Results have shown that carers in both samples reported a worsening in mental health (Italy/Hungary: M = 2.25/2.55, SD = 0.93/0.99), and Italian carers also in general health (M = 2.54, SD = 0.98) (on a scale of 1 to 5, with values under “3” representing deterioration). Carers in both samples experienced high worry levels (Italy/Hungary: M = 4.2/3.7, SD = 0.93/0.89) and feeling overwhelmed with care tasks (M = 3.2/3.7, SD = 1.3/1.3) (on a scale of 1 to 5, higher values representing higher worry/work overload). In regression models, all of the above negative experiences were predicted by a combination of factors. Two of these factors stood out in importance due to being a predictor of more than one type of negative experience: a decline in the carer–care receiver relationship, predicting work overload, as well as general and mental health deterioration and being the child of the care receiver, predicting both high worry and subjective work overload. The top five encountered problems were the unavailability of medical and social care, difficulties with shopping (medicine included), restricted freedom, isolation, and anxiety.

Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities.

Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. The mean age of carers was 38.3±14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies.

Impact of the COVID-19 Pandemic on Family Carers of Older People Living with Dementia in Italy and Hungary

The COVID-19 pandemic has had a major effect on both older people with dementia and families caring for them. This paper presents the results of an online survey carried out among Italian and Hungarian family carers of people with dementia during the first pandemic wave (May–July 2020, n = 370). The research questions were the following: (1) How has the pandemic changed the lives of family carers? (2) How did government restriction measures change the availability of care-related help? (3) What other changes did families experience? Results show that about one-quarter of both subsamples experienced a deterioration in their financial status. A decline in both general and mental health was also reported. Due to “lockdown”, family carers’ burden increased substantially. Utilization of care-related help decreased, and the share of those left with no help increased in both countries. Cross-country differences emerged in terms of dementia care system, severity of the first pandemic wave, and measures put in place by governments. Findings outline the weaknesses of support structures and their country-specific vulnerabilities to a worldwide pandemic. To better protect people with dementia in the future, it is essential to strengthen their family carers, and support structures need to be re-evaluated and re-designed.

Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.

An analysis of carer burden among family carers of people with and without dementia in Ireland.

Despite the policy relevance of carer burden, limited research focuses on family carers' experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (-6.95 ppts and -3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

Symptoms of mood disorders in family carers of older people with dementia who experience caregiver burden: a network approach

informal carers of people with dementia are at greater risk of anxiety and depressive disorders if they find caregiving to be a burden. The aim of this study was to use a network analysis of cross-sectional data to investigate the relationships between anxiety and depressive symptoms in family carers of older people with dementia who experience burden. sixty family carers exhibiting high levels of burden using the Zarit Burden Interview were included in the study. Participants completed the Hospital Anxiety and Depression Scale. The network analysis identified the depression and anxiety symptom network using features including a topological graph, network centrality metrics and community analysis. The network was estimated through the graphical LASSO technique in combination with a walktrap algorithm to obtain the clusters within the network and the connections between the nodes (symptoms). A directed acyclic graph was generated to model symptom interactions. the resulting network architecture shows important bridges between depression and anxiety symptoms. Lack of pleasure and loss of enjoyment were identified as potential gateway symptoms to other anxiety and depression symptoms and represent possible therapeutic targets for psychosocial interventions. Fear and loss of optimism were highly central symptoms, indicating their importance as warning signs of more generalised anxiety and depression. this network analysis of depressive and anxiety symptoms in overburdened family carers provides important insights as to what symptoms may be the most important targets for behavioural interventions.

65 The Health and Well-Being of Family Carers of Older People: An Exploratory Cross-Sectional Analysis

Abstract Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future.1 The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland’s largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs.

Dementia and patient safety in the community: a qualitative study of family carers\u2019 protective practices and implications for services

BackgroundDementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients’ homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community.MethodsThis was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants’ experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis.ResultsThe ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs.ConclusionsWhen family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers.

For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study.

ObjectivesDemographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period.MethodsAnalyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad’s status at follow-up.ResultsWhere care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change.DiscussionThe majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

HOW NEW TECHNOLOGIES SUPPORT CARERS OF OLDER PEOPLE: THE EUROCARERS’ INFORMCARE PLATFORM

AbstractThis presentation discusses how new technologies support family carers of older people with reference to the Eurocarers’ hub ‘InformCare’, the web-platform of support services for carers of older people co-funded by the European Union within the INNOVAGE project. After highlighting the status of technology-based services for carers in Europe, the main features of InformCare will be demonstrated. Tested in three European countries (Germany, Italy and Sweden), this tool provides a standardised, integrated, multilingual and culturally adapted set of on-line information and interactive services addressing carers’ needs and preferences which are available for the first time in 27 Member States. The implementation followed a pilot test with 117 carers, showing improvements in carers’ self-awareness and empowerment over a 3 month period. However, to ensure optimal benefit from InformCare, appropriate training and promotion campaigns are needed in order to overcome low digital literacy skills and lack of self-recognition characterising many carers.

'If it weren't for me…': perspectives of family carers of older people receiving professional care.

In the Scandinavian countries and elsewhere, family care is important as a complement for older people in the professional care system. Better understanding of this role could lead to better cooperation between professionals and family carers and better use of family carers as a resource in care for older people. The aim of this study was to explore experiences of the role of family carers of older people in need of services and therefore to increase our understanding of this role. The study was designed as a qualitative interview study. In 2014 and 2015, we conducted semistructured interviews with a varied sample of 16 family carers of older people in both urban and rural locations in Norway. Interviews were transcribed and analysed thematically. The way the caregiving role was enacted varied greatly between the family carers in this study, but they all conveyed mixed feelings regarding their role. They saw caring for their relative both as a duty and a strain, as well as a choice and a meaningful task. One reason for their engagement was perceived deficiencies in professional care services. Family carers thus felt they made a difference to the older person's well-being and health, and more so if this role was acknowledged by professional caregivers. This study suggests that in spite of or perhaps even because of feelings of obligation and strain, family care is experienced as highly meaningful. However, it seems important that family carers receive explicit appreciation from professional health or care staff.

The prevalence of potentially abusive behaviours in family caregiving: findings from a national survey of family carers of older people

family caregiving can be both rewarding and fulfilling; however, conflicts can occur in the caregiving relationship, and some family carers may engage in behaviours that could be potentially harmful to the older person for whom them provide care. to determine the prevalence of potentially abusive behaviours towards older people by family carers. a postal cross-sectional survey of a nationally representative sample of family carers of community-dwelling older people. a randomly selected sample of family carers in receipt of a social welfare payment for the care they provide to a relative aged 65 and older. a self-completion questionnaire was posted to 4,000 family carers of older people across Ireland, and a total of 2,311 eligible completed questionnaires were returned, yielding a response rate of 58%. more than a third of family carers (36.8%) reported that they engaged in potentially harmful behaviours towards their older family member in the 3 months prior to the survey. Of those potentially harmful behaviours, a third (35.9%) reported that they engaged in potentially harmful psychological behaviours and 8% reported engaging in potentially harmful physical behaviours. potentially abusive carer behaviours need to be detected at an early stage so that preventive interventions can be introduced to avert caregiving situations deteriorating into serious cases of elder abuse.

Protocol for a randomised controlled trial of an outreach support program for family carers of older people discharged from hospital.

BackgroundPresentations to hospital of older people receiving family care at home incur substantial costs for patients, families, and the health care system, yet there can be positive carer outcomes when systematically assessing/addressing their support needs, and reductions in older people’s returns to hospital attributed to appropriate discharge planning. This study will trial the Further Enabling Care at Home program, a 2-week telephone outreach initiative for family carers of older people returning home from hospital. Hypotheses are that the program will (a) better prepare families to sustain their caregiving role and (b) reduce patients' re-presentations/readmissions to hospital, and/or their length of stay; also that reduced health system costs attributable to the program will outweigh costs of its implementation.Methods/DesignIn this randomised controlled trial, family carers of older patients aged 70+ discharged from a Medical Assessment Unit in a Western Australian tertiary hospital, plus the patients themselves, will be recruited at discharge (N = 180 dyads). Carers will be randomly assigned (block allocation, assessors blinded) to receive usual care (control) or the new program (intervention). The primary outcome is the carer’s self-reported preparedness for caregiving (Preparedness for Caregiving Scale administered within 4 days of discharge, 2–3 weeks post-discharge, 6 weeks post-discharge). To detect a clinically meaningful change of two points with 80 % power, 126 carers need to complete the study. Patients’ returns to hospital and subsequent length of stay will be ascertained for a minimum of 3 months after the index admission. Regression analyses will be used to determine differences in carer and patient outcomes over time associated with the group (intervention or control). Data will be analysed using an Intention to Treat approach. A qualitative exploration will examine patients’ and their family carers’ experiences of the new program (interviews) and explore the hospital staff’s perceptions (focus groups). Process evaluation will identify barriers to, and facilitators of, program implementation. A comprehensive economic evaluation will determine cost consequences.DiscussionThis study investigates a novel approach to identifying and addressing family carers’ needs following discharge from hospital of the older person receiving care. If successful, the program has potential to be incorporated into routine post-discharge support.Trial registrationAustralian and New Zealand Clinical Trial Registry: ACTRN12614001174673.

Experiences of family carers of older people with mental health problems in the acute general hospital: a qualitative study

To explore the experiences of family carers of people with cognitive impairment during admission to hospital. Providing appropriate care in acute hospitals for people with co-morbid cognitive impairment, especially dementia or delirium or both, is challenging to healthcare professionals. One key element is close working with family members. Qualitative interview study. Semi-structured interviews with family carers of 34 older people who had been admitted to a UK general hospital and had co-morbid cognitive impairment. Interviews conducted in 2009 and 2010. Analysis was undertaken using Strauss and Corbin's framework. The findings elaborate a core problem, 'disruption from normal routine' and a core process, 'gaining or giving a sense of control to cope with disruption'. Family carers responded to disruption proactively by trying to make sense of the situation and attempting to gain control for themselves or the patient. They tried to stay informed, communicate with staff about the patient and plan for the future. The interaction of the core problem and the core process resulted in outcomes where family members either valued the support of hospital staff and services or were highly critical of the care provided. Family carers are not passive in the face of the disruption of hospitalization and respond both by trying to involve themselves in the care and support of their relative and by trying to work in partnership with members of staff. Nurses need to foster this relationship conscientiously.

Migrant care workers as protective factor against caregiver burden: results from a longitudinal analysis of the EUROFAMCARE study in Italy

Objective: The aim of the analysis is to assess the impact of privately employed migrant care workers (MCWs) on the burden of Italian family members who care for a disabled older person. Methods: EUROFAMCARE is a one-year prospective survey carried out to provide evidence on the availability and use of support services by family carers of older people in Europe. In Italy, 990 family caregivers were enrolled and successful follow-ups were completed for 863 subjects. The survey also assessed the level of caregiver burden using the COPE index, which has three sub-sections: ‘Positive Value’ (PV), ‘Quality of Support’ (QS) and ‘Negative Impact’ (NI). We used the one-year change of the COPE-NI as dependent variable and we realised multilevel regression models to estimate the longitudinal predictors of caregivers’ burden increase. Results: At a cross-sectional level, most burdened caregivers are those caring for a demented relative (COPE-NI = 13.6), with no educational title (14.5) and looking after their own spouses (15.1). Longitudinally those employing an MCW are significantly protected against burden increase (regression coefficient: −1.52; p < 0.01) while those who cannot rely on the support of other family members are exposed to the risk of burden increase (0.991; p < 0.05). Other formal services do not have any protective effect. Conclusion: Our study suggests that employing an MCW, rather than using formal services, is associated with a reduction of caregiving burden. Further research should assess whether the shift in care responsibilities to the MCWs also implies a transfer of care burden, and understand how these workers can be better supported by existing formal services.