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Gender and care

The following resources examine gender differences and similarities in carers.

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Psychometric evaluation of the caring ability of family caregivers of patients with cancer scale–mothers’ version for the mothers of children with cancer

Background: The experience of caring for cancer patients has adverse outcomes for family caregivers. The ability to care for a sick child is affected by the mother’s health; to empower mothers, it will be necessary to examine their caring ability. Objective: The aim of this study was to carry out a psychometric evaluation of the Caring Ability of Family Caregivers of Patients With Cancer Scale–Mothers’ Version (CAFCPCS–Mothers’ Version). Methods: The present study is a psychometric evaluation of the CAFCPCS–Mothers’ Version. The sample consisted of 196 mothers of children in treatment for cancer selected through convenience sampling. The face, content and construct validity, internal consistency, and stability of the scale were measured. Data were analyzed using the software SPSS 19 and LISREL 8.8. Results: After removing 2 items during confirmatory factor analysis, the values of root-mean-square error of approximation, comparative fit index, and nonnormed fit index were reported to be 0.066, 0.92, and 0.91, respectively. The Cronbach’s α was calculated to be 0.71 and the stability correlation coefficient was 0.75. The final tested scale included 29 items in 5 dimensions: effective role play, fatigue and surrender, trust, uncertainty, and caring ignorance for mothers of children with cancer. Conclusion: The CAFCPCS–Mothers’ Version has satisfactory content, face, and construct validity and adequate reliability in terms of internal consistency and stability in a sample of mothers of children receiving treatment for cancer. Implication for Practice: The CAFCPCS–Mothers’ Version can be used to assess the caring ability of Iranian mothers of children with cancer and to determine maternal care needs. 

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Male family carers' experiences of formal support – a meta‐ethnography

Background: Men represent a growing proportion of unpaid family carers across Europe. Comparative studies have proposed male carers experience their caring role differently to females; men are less likely to avail of formal support services than women. Social ideas around masculinity have been linked to the help‐seeking behaviours of male carers, as well as men's attitudes around accessing formal support. More understanding about this role from the perspective of male carers is required. Methods: The study followed a meta‐ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the selected studies was evaluated using the Mc Master checklist. Using NVivo 12 software, primary data were analysed and themes throughout the papers were identified. Results were synthesised as a meta‐ethnography that retained direct quotes from the studies. Results: Two themes and five sub‐themes were developed from the data. The first theme was ‘Men's experiences of formal support’ which contained sub‐themes ‘Reluctance to step back’, ‘A space to share emotions’ and ‘Education diminishes burden’. The second theme was ‘Coping without Formal Support’ with sub‐themes ‘Satisfied without help’ and ‘Duty prevents help seeking’. Conclusions: Fear of perceived failure and a loss of control in the caring relationship were key factors in men's low trust and dissatisfaction with available services. To engage more male carers, formal service providers should acknowledge men's wish to be seen as competent in the care role as well as their desire to stay involved in decision‐making around care for their family member. Support services that were collaborative, education‐based and gender‐sensitive were favoured by male carers.

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Influence of the caregiver on the cognitive and functional decline of people with dementia: A systematic review

Background: Dementia is a neurodegenerative disease that requires the accompaniment of a caregiver who is in charge of assisting and supervising basic and psychosocial needs. Objectives: The objective of this article was to determine the influence of the caregiver on the cognitive and functional decline of patients with dementia. Methods: The method was a systematic review by searching the Scopus, Pubmed and Science Direct databases between the years 2010-2020. Findings and conclusion: In conclusion, the informal caregiver condition was the most reported by the investigations, generally assumed by wives and children; Caregiver characteristics such as personality, subjective interpretations of the functional status of adults with dementia, and caregivers' coping strategies were associated with a decrease in the rate of cognitive and functional impairment of people with dementia. 

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How does she do it all? Effects of education on reconciliation of employment and informal caregiving among Austrian women

Background: The introduction of reforms to the Austrian pension system in the early 2000s resulted in a significant increase in the employment rate of older working age women. This increase was highly differentiated along education groups, with increases in employment rates concentrated among those with secondary and tertiary education. Methods: Logistic regression analysis is applied to SHARE data from waves 1 and 6, to determine whether the increase in labour market participation of women aged 50+ in Austria has affected informal caregiving across education lines. Results: Unlike their secondary and tertiary educated counterparts, lower educated women were more likely to provide high intensity care in 2015 than in 2004, resulting in an education gradient that was not present before. In comparison, the overall probability to provide care has not changed significantly, irrespective of older women's education. Other possible adjustments were also explored, such as decreased participation in social activities or higher care burden. There is also limited evidence of compensation by increased informal care provision among men. Conclusions: Both employment and informal care provision have become more segmented in Austria in the wake of the pension reforms of 2004.

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Formal and informal care work

Care work is an umbrella term for many services and activities, both formal and informal, that provide help and advice, healing and nursing, education and training. Such work on and with people, the productivity of which cannot readily be increased, could in future be a significant core area for all human work in post-growth societies. Whether this work will be performed solely through paid services, or whether a mix of care activities will emerge in the course of societal transformation, based on a newly defined relationship between formal and informal care work and a new division of roles between the sexes, is an open question.

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Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. Objectives: This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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Examination of validity, reliability, and interpretability of a self-reported questionnaire on Occupational Balance in Informal Caregivers (OBI-Care) – A Rasch analysis

Objectives: Informal caregivers often experience a restriction in occupational balance. The self-reported questionnaire on Occupational Balance in Informal Caregivers (OBI-Care) is a measurement instrument to assess occupational balance in informal caregivers. Measurement properties of the German version of the OBI-Care had previously been assessed in parents of preterm infants exclusively. Objectives: Thus, the aim of this study was to examine the measurement properties of the questionnaire in a mixed population of informal caregivers. Methods: A psychometric study was conducted, applying a multicenter cross-sectional design. Measurement properties (construct validity, internal consistency, and interpretability) of each subscale of the German version of the OBI-Care were examined. Construct validity was explored by assessing dimensionality, item fit and overall fit to the Rasch model, and threshold ordering. Internal consistency was examined with inter-item correlations, item-total correlations, Cronbach’s alpha, and person separation index. Interpretability was assessed by inspecting floor and ceiling effects. Results: A total of 196 informal caregivers, 171 (87.2%) female and 25 (12.8%) male participated in this study. Mean age of participants was 52.27 (±12.6) years. Subscale 1 was multidimensional, subscale 2 and subscale 3 were unidimensional. All items demonstrated item fit and overall fit to the Rasch model and displayed ordered thresholds. Cronbach’s Alpha and person separation index values were excellent for each subscale. There was no evidence of ceiling or floor effects. Conclusions: We identified satisfying construct validity, internal consistency, and interpretability. Thus, the findings of this study support the application of the German version of the OBI-Care to assess occupational balance in informal caregivers.

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Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies

Introduction/Aims: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. Methods: Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011–2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. Results: Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. Conclusions: Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation. 

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Effectiveness of a mindfulness-based intervention program for women family caregivers of older adults

Background: The objective of this study was to analyze the effectiveness of a mindfulness-based intervention program for the promotion of well-being and health in family caregivers. Methods: The participants were 111 family women caregivers aged between 33 and 75 years old. This was a double-blinded randomized controlled trial. The mindfulness intervention program lasted 12 weeks. The experimental group underwent mindfulness and acceptance-based interventions (MABIs). The control group performed physical activity training. Results: A cross-lagged panel analysis was computed with the two waves of health, well-being, burden and resilience and age in years and intervention as predictors. The cross-lagged path model fit well χ2 (8) = 7.179, p = 0.51, root mean square error of approximation (RMSEA) = 0.00, comparative fit index (CFI) = 1.00, standardized root mean square residual (SRMR) = 0.05. The mindfulness intervention program was a significant predictor accounting for decreasing health problems (β = −0.292, p < 0.01) and burden (β = −0.190, p < 0.01) and increasing well-being (β = 0.107, p < 0.05) at post-test. Conclusions: Mindfulness-based intervention programs are effective in coping with the burden of family caregivers and, in turn, in promoting resilience, well-being and health among caregivers. Our findings encourage clinical uses of mindfulness interventions to promote health. 

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Dual-duty caregivers: formal and informal care roles and their implications among nursing workers

Background: A nursing worker who is also a caregiver of an elderly family member, plays a dual-duty role, which is challenging and requires knowledge, skills and professional experience. The interaction between family and work entails a spillover between the two, and affects employees and healthcare organizations. Objectives: The current exploration study examined differences between nursing employees who hold a dual role and those who do not, while identifying implications of the dual-duty role and the correlations between them at the individual level that might negatively affect the organization. Methods: A cross-sectional quantitative study was conducted, including 158 staff members from nursing homes in Israel: 41.8% were also informal caregivers for elderly family members, 62.5% were women, and 79.2% were Arabs. A self-administered questionnaire was used to measure workload, family-work conflict, absenteeism, tardiness, and intentions to leave the organization. Participants with a dual role tended to be older, had more children, had worked for longer period, and held part-time positions compared to those who do not. Results: Preliminary results showed no significant differences between the two groups. Pearson correlations revealed that workload and family-work conflict were positively associated with leaving intentions (dual-role caregivers: r=.30, p<.05, r=.45, p<.01; others: r=.61, p<.01, r=.34, p<.05). Among the dual-role group, workload was related to absenteeism (r=.27, p<.05), and family-work conflict was related to absenteeism and tardiness (r=.24, r=.29, p<.05). Among the other group, only family-work conflict was associated with tardiness (r=.33, p< .01). Conclusions: As negative consequences were indicated for workers with a dual-duty role, additional research in the healthcare sector should be conducted, leading to intervention programs for helping employees and organizations deal with the dual role and serving as the basis of policies and procedures. Key messages Nursing workers often suffer from workload and family-work conflict. Workload and family-work conflict among dual-duty caregivers might result in withdrawal behaviors (tardiness and absenteeism).

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Does Unpaid Caregiving Erode Working Hours Among Middle-Aged Chinese Adults?

Background: Middle-aged adults are commonly confronted with the burden of paid work and multiple caregiving roles. Objectives: This paper examines the relationship between weekly hours of unpaid caregiving and hours of work using data from the baseline survey of the China Health and Retirement Longitudinal Study. Methods: The analysis was conducted on a nationally representative sample of 3645 working-age Chinese adults aged 45–60 years who were not farming and had a young grandchild and/or a parent/parent-in-law. For women and men separately, we combined the use of a Heckman selection procedure and instrumental variables to estimate the relationship between weekly caregiving hours and hours of work. A caregiving threshold was also identified for women and men separately to allow for the testing of a kink and/or a discontinuity in this relationship. Results: We found that for women, their working hours were initially unrelated to hours of caregiving before the threshold of 72 caregiving hours per week; then, their working hours experienced an almost two-fold increase at the caregiving threshold before falling by 2.02 percent for each additional hour of caregiving beyond the threshold. For men, their hours of work fell by 2.74 percent for each hourly increment in caregiving. Although a caregiving threshold of 112 h was identified for men, there was insufficient evidence for a statistically significant kink or discontinuity in this relationship. Conclusions: These findings provide support for a range of fiscal and human resource policies that target employed family caregivers in order to advance their well-being while also maintaining their work productivity.

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The burden of Alzheimer’s caregivers and social support in the Tunisian family

Background: Alzheimer is a pathology that concers the patient and his family having a physical, social, economic and psychological impact. Research on family caregivers is still lacking and little is known about caregivers burden and ist associated factors in Tunisia. Objectives: The aim of this study were to describe caregiver burden among Tunisian family caregivers of patients with alzheimeŕs disease, its associated factors and ist relationship to social support. Methods: We conducted a cross-sectional study among 118 family caregivers during three months at the neurology outpatient departments of two university hospitals. Sahloul, Sousse and Taher Sfar, Mahdia. Using the Zarit Burden Interview-22 (ZBI)items and the Medical Outcome Study-Social Support Survey to assess burden and social support among the caregivers. Results: We included 118 caregivers of patients with Alzheimeŕs disease,with an average age of 45±15 years. Women were more predominant with a sex ratio of 0.57.Half of caregivers were the descent of patients. The Mean years of caregiving was 5±3 years with an average of 13 hours ±3 of care assistance per day. The mean ZBI Score was 38.4±18.5 and 16.1% of caregivers percived a severe burden. The mean ZBI Score was higher in female, retired, lowmsocio economic status and in rural area with a statistically significance difference. We found that caregiver burden and social support were highly correlated (p < 0.001,r=-0.41)indicating that a high level of caregiver burden was asoociated with a less level of social support. Conclusions: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. A considerate help and support from helth care and social institutions is required by taking into account the factors that contribute to caregivers burden and considering the importance of social support in alleviating caregiver burden. Key messages: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. High level of caregiver burden was asoociated with a less level of social support.

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Characteristics of dyadic care types among patients living with multiple chronic conditions and their informal caregivers

Objectives: To examine the distribution of dyadic care types in multiple chronic conditions, compare self-care and caregiver contributions to patients' self-care in each care type and identify the patient and caregiver characteristics associated with each care type. Methods: Secondary analysis of a multicentre, cross-sectional study. Patient-caregiver dyads were enrolled from outpatient clinics and community settings. The Dyadic Symptom Management Type Scale was used to categorize dyads by type. Self-care, self-efficacy, comorbidities and cognitive impairment were measured in patients, whereas caregiver contributions to patient self-care, self-efficacy, caregiver burden and hours of caregiving were measured in caregivers. Sociodemographic characteristics perceived social support and mutuality were measured in both patients and caregivers. Univariate and multivariate analyses were performed. Results: A sample of 541 patient-caregiver dyads was examined. The most frequent dyadic care type was the collaborative-oriented (63%). In the patient-oriented type, patients scored higher on self-care compared with caregivers; in the caregiver-oriented and collaborative types, caregivers scored higher than patients supporting the typology. The patient-oriented type was associated with younger, healthier male patients with better cognitive status, who scored higher for mutuality and whose caregivers scored lower for burden. The caregiver-oriented type was associated with older, less educated patients, with caregivers experiencing higher burden and unemployment. The collaborative type was associated with sicker patients, with the caregiver more probably to be female and employed, with higher perceived social support, mutuality and burden. The incongruent dyadic care type was associated with lower caregiver mutuality. Conclusions: In the context of multiple chronic conditions, clinicians should consider targeting any educational interventions aimed at improving patient self-care and caregiver contributions to self-care by dyadic care types. 

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Changes in caregiver personal support networks: Gender differences and effects on health (cuidar-se study)

Background: Technological changes have led to important advances in medical diagnoses and treat-ments that prolong the informal care process. Support from the personal network of informal caregivers is an undervalued resource and the changes that have occurred over time are unknown. Objectives: The aim of this study was to analyze the changes in personal network support among informal caregivers and to examine the effect of these changes on self-perceived caregiver health, with a focus on differences between men and women and caregivers with high and low levels of burden We also investigated caregiver perceptions and explanations of changes to their support network (losses and additions and no change). Methods: Using a mixed-methods approach, data were obtained from 32 caregivers that were intentionally selected in Spain, who were interviewed twice with a one-year interval. In the quantitative phase, personal networks analysis was performed with Egonet software, which obtained data on the composition and functional content in social support from 1600 personal relationships (25 alters for each ego in the two waves). In the qualitative phase, semi-structured inter-views were conducted in the two waves with a guide in order to explore the changes in informal support resources over time. Results: The selected men with high levels of burden pointed out a loss of network support with more discouraging reports compared with the low-burden male caregivers. Furthermore, the selected women with low burden levels mentioned losses too; however, their reports were more positive. Women reported improved health, especially those with low burden scores in the first wave and those who did not lose support. Caregivers with a high initial burden and who lost support reported worse health, particularly men and women with a strong sense of duty toward care. Social support from personal networks is important for caregiver health and its effects are influenced by gender roles. Conclusions: Our findings could help by improving the relational and social capital of informal caregivers and adapting them to the new needs of formal home care sys-tems. 

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Caring for a relative with dementia: Determinants and gender differences of caregiver burden in the rural setting

Background: Dementia is a progressive disease that puts substantial strain on caregivers. Many persons with dementia (PwDs) receive care from a relative. Since male and female caregivers experience different issues related to stress, it is important to meet their different needs to prevent the early nursing home placement of PwDs. Objectives: This study investigated the multifactorial aspects of caregiver burden and explored gender differences in caregiver burden in a rural setting. Methods: This was a cross sectional study that administered anonymous questionnaires to family caregivers of PwDs. Caregiver burden was assessed using the Burden Scale for Family Caregivers—short version. A path model was used to determine the multivariate associations between the variables. To reflect the multifaceted aspects of caregiver burden, we used Pearlin’s model with its four dimensions. Results: A total of 113 family caregivers responded to our survey. The overall burden of caregivers was moderate. According to the path model, gender differences were predictors of caregiver burden. The behaviour of the person with dementia and cohabitation had direct effects on caregiver burden. Conclusions: Our results suggest that the experiences of men and women caring for a PwD are different and highlight the need for tailored support in dementia care. 

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Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

Background: Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia. Methods: PRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies. Results: The review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance. Conclusion: Optimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment. Practical Implications: A paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted. 

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Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective

Background: Family caregivers of persons with dementia often experience a negative impact on their health. More studies based on nursing theories are needed to improve the provision of care. Aims: To describe the care provided by family caregivers of persons with dementia and the impact on their health, as well as to analyse how personal variables of caregivers are related to care tasks and their health impact. Methods: Multi-centric cross-sectional prospective study conducted on a sample of 423 primary family caregivers of persons with dementia from Spain. Data were collected through ICUB97-R questionnaire (January–April 2019), based on the fourteen needs of Virginia Henderson's Nursing Model. Data was analysed through one-way analysis of variance and Student's t-test. Results: The caregiver profile was a middle-aged married woman without higher education living with the cared person, predominantly her mother. The most frequently provided care corresponded to “nutrition” and “movement” needs. Lack of free time, modifications on leisure activities, reduced sleep or rest and disruption of family life emerged as the greatest repercussions on the caregiver's health. The age of the caregiver and time caring showed differences on impact of care and care tasks, respectively. Conclusion: The identification of the types of care provided, the health impact of caring and the variables affecting the family caregiver's vulnerability is essential to develop effective individualised nursing care plans, including health education interventions to improve the quality of life of both caregivers and persons cared for. 

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Use of antidepressants among Finnish family caregivers: a nationwide register-based study

Objective: The purpose of this study was to compare the use of antidepressants over 6 years between family caregivers providing high-intensity care and a matched control population using register-based data. Methods: The study includes all individuals, who received family caregiver’s allowance in Finland in 2012 (n = 29,846 females, mean age 66 years; n = 12,410 males, mean age 71 years) and a control population matched for age, sex, and municipality of residence (n = 59,141 females; n = 24,477 males). Information on purchases of antidepressants, including the number of defined daily doses (DDD) purchased, between 2012 and 2017 was obtained from the national drugs reimbursement register. Results: During the follow-up, 28.5% of female caregivers and 23.5% of the female controls used antidepressants, while the numbers for males were 21.1% and 16.4%, respectively. Adjusted for socioeconomic status, female caregivers used 43.7 (95% confidence interval 42.4–45.0) and their controls used 36.2 (35.3–37.2) DDDs of antidepressants per person-year. Male caregivers used 29.6 (27.6–31.6) and their controls used 21.6 (20.2–23.0) DDDs of antidepressants per person-year. Among female caregivers, the relative risk for use of antidepressants was similar (about 1.3) from 20 to 70 years, after which the relative risk declined. In male caregivers, the relative risk was highest (about 1.4–1.5) between 45 and 65 years. Conclusions: Family caregivers providing high-intensity care use more antidepressants and hence, are likely to have poorer mental health than the age-matched general population in virtually all age groups. However, the magnitude of the higher use varies as a function of age and gender. 

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Are informal family caregivers stigmatized differently based on their gender or employment status?: a German study on public stigma towards informal long-term caregivers of older individuals

Background: Stigma and informal caregiving are determinants for health and wellbeing, but few studies have examined stigma towards informal caregiving. Public stigma may be expressed differently towards caregivers depending on their gender and employment status due to societal norms. Therefore, this study analyzes if there is a difference in public stigma shown by the general population toward informal caregivers of care recipients aged 65 years or older based on the observed caregiver’s gender or working status. Methods: A cross-sectional study was conducted in Germany. Data from 1038 adult participants from the general population in Germany were assessed with an Online-Survey. They were recruited with a quota-system based on the German micro census. Participants were randomly assigned to one of 16 vignettes describing a caregiving situation, which varied in the caregiver’s gender and working status, and care recipient’s gender and type of impairment. After reading the vignette, they were asked to provide sociodemographic information and complete three questionnaires on public stigma assessing their emotional (Emotional Reactions), behavioral (Social Distance) and cognitive reaction (Statements on informal caregivers) to the caregiver described in the vignette. Regression analyses, adjusted for sociodemographic data of the participants, were conducted. Results: Findings indicated an association between reading about male caregivers and increased social distance, compared with reading about female caregivers. Reading about working caregivers was associated with decreased social distance and increased appreciative statements, compared to reading about non-working caregivers. Analyses after stratifying by gender of the caregiver in the vignette indicated an association between reading about female working caregivers and increased appreciative statements, compared to reading about female non-working caregivers. When stratifying by working status, an association was found between reading about male working caregivers and increased social distance, when compared to reading about female working caregivers. Conclusions: This study’s findings indicate that gender and working status of the perceived informal caregivers are of relevance to the public stigma directed towards these caregivers. Male and non-working informal caregivers were shown more public stigma than female and working informal caregivers. Thus, interventions to reduce public stigma, in particular towards male and non-working caregivers, are recommended.

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Anxiety, depression, and stress in caregivers of children and adolescents with mental disorders in Ghana and implications for medication adherence

Objective: This study assessed levels of anxiety, depression, and stress among family caregivers of children and adolescents with mental disorders in Ghana and the implication on medication adherence. Design: A cross-sectional study. Setting: The study was conducted at the outpatient departments of the three main public psychiatric hospitals in Ghana. Participants: Two hundred and ten non-paid family caregivers of children and adolescents with mental disorders were recruited for this study. Main Outcome Measure: The study assessed symptoms of anxiety, depression and stress among the caregivers and estimated caregiver-reported medication adherence. Results: About 56.2%, 66.2% and 78% of the caregivers experienced severe anxiety, severe depression and moderate to severe stress symptoms respectively. From the multiple logistic regression model, while anxiety was significantly affected by religion and education, depression was influenced by sex, age, marital status, proximity to facility, and employment status. Female caregivers had about four times higher odds of being depressed compared to male caregivers (aOR: 3.81, 95% CI: 1.66 - 8.75). The caregiver-reported medication adherence was 11.9%. Anxiety was significantly predictive of medication adherence. Conclusion: Most family caregivers of children and adolescents with mental disorders experienced symptoms of anxiety, depression and stress with anxiety having implications for medication adherence. The study findings underscore the need to consider psychological characteristics of caregivers and the provision of mental health support for them, as part of the routine health care for children and adolescents with mental disorders. 

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Association between having cancer and psychological distress among family caregivers using three years of a nationwide survey data in japan

Objectives: We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. Methods: We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model. The family caregivers’ psychological distress was defined by the Kessler Psychological Distress Scale (K6) score (K6 ≥ 5). We conducted a Poisson regression analysis to examine the association between having cancer and family caregivers’ distress. Results: The sample of family caregivers consisted of mostly females (69.3%) and people within the 40–64 years age group (51.8%). As a result, family caregivers with cancer increased across the survey periods; a higher number of participants were unemployed. When adjusted for covariates, including the presence of other diseases, having cancer was significantly associated with distress (risk ratio 1.33, 95% confidence interval 1.05–1.69) among family caregivers. Conclusions: Family caregivers with cancer are expected to increase in the future; it is important to provide them with more support in managing both their treatment and caregiving to cope with their distress. 

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Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

Background: Finding a balance between care and personal needs is often challenging for individuals caring for a person with dementia. Objectives: The present study aimed to understand how primary and secondary family carers of people with dementia perceive the reconciliation of informal care and their personal life throughout the course of care. Methods: Narrative interviews with 14 carers (n=10 female, mean age: 48.79) from seven care networks were conducted. The interviews were analysed using the documentary method. Findings: The result was a relational type formation which comprises different process types: ‘Respect your boundaries, stay calm, but plan ahead’, ‘Acting strategic is making it work’, ‘Reflect the situation, deal with it, and pull it through’ and ‘There is no alternative, you have to live with it’. This typology was based on two related dimensions: the way people negotiate their own needs against the demands of care (prospective, strategic, reflective and limited) and the resulting attitudes towards reconciling informal care and personal life (accepting, withstanding and enduring). Conclusions: The results yield implications for practice, such as considering individual needs and the care network to provide effective support and promoting the importance of self-care behaviours to achieve a balance between care and personal life. 

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A qualitative exploration of how gender and relationship shape family caregivers’ experiences across the Alzheimer’s disease trajectory

Background: Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. Objectives: This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer’s disease. Methods: Forty spousal (10 husbands and 10 wives) and adult children (10 sons and 10 daughters) caregivers to persons with Alzheimer’s disease were interviewed using a semi-structured interview guide. Findings: Our findings suggest the experiences of caregiving, examined through a gender and relationship type lens, are complex and variable. The caregiving experience was not related to gender or relationship type alone, but often to a combination of the two. For instance, spousal caregivers did not immediately accept the diagnosis, with wives being more optimistic than husbands about a slow progression of the disease. Adult children caregivers were concerned about the ways the caregiving role would impact their personal and career obligations and sought ways to mitigate the changes to their daily lives. Sons and husband caregivers largely utilized home and community health services to assist with personal care tasks, whereas daughters and wives utilized the same services to allow them to complete other caregiving tasks (e.g., housekeeping). Conclusions: Recognition of the complex inter-relationships among gender and relationship type on caregiving experiences supports the need for family-centered interventions. This article also extends sex and gender research as it highlights that an in-depth understanding of the caregiving experience cannot be understood by gender alone and relationship type must also be considered. 

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The emotional experience of caregiving in dementia: Feelings of guilt and ambivalence underlying narratives of family caregivers

Objective: The aim of this study was to explore narrative domains of family caregivers’ emotional experiences, beyond intentional and explicitly reported contents, and to examine their associations with subjects defining characteristics, such as gender, kinship, duration of caregiving, and burden levels. Methods: The study participants were 17 Italian family caregivers (88.23% women) with a mean age of 59.14 years (SD = 7.76), who provided their loved ones affected by dementia with in-home care. Structured interviews and Caregiver Burden Inventory were administered according to a mixed method design. A computer-aided text analysis was used which allowed the detection of shared narrative domains (cluster analysis) and latent factors organizing the contraposition between them (multiple correspondence analysis). Findings: Five narrative domains emerged which were respectively referred to as perceived formal support (14.38% of the overall textual corpus), devotion (33.56%), anger (13.70%), sense of loss (18.49%), and feeling of uncertainty (19.86%). Kinship, duration of caregiving, and burden levels were differently associated with such domains. Two latent factors dealing with feelings of guilt and ambivalence explained 62.92% of overall data variance. Conclusion: Guilt feelings should be carefully taken into account in support intervention with caregivers, with specific regard to stress and anger management. As well, a greater focus on caregivers’ emotion regulation and on the promotion of their problem-solving skills is needed when faced with contrasting beliefs about care decisions or role conflicts. 

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Coronavirus and the social impacts on unpaid carers in Great Britain: April 2021

Indicators from the Office for National Statistics’ Opinions and Lifestyle Survey to understand the impacts of the coronavirus (COVID-19) pandemic on unpaid carers in Great Britain.

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Carers’ experiences of assistive technology use in dementia care: a cross sectional survey

Background: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life. Methods: A cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions. Results: Data from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46–65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores. Conclusions: Carers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia. 

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Gender differences in research samples of family carers of adults with cancer: a systematic review

Background: Rising global demand for informal care makes it increasingly important to have a comprehensive understanding of carers’ experiences. However, research is thought to be skewed towards women’s experience, leading some to call men ‘forgotten carers’. Methods: A systematic review following Preferred Reporting Items for Systematic reviews and Meta-Analysis guidelines was conducted to assess the gender balance of study samples of family carers of someone living with cancer. Findings: A total of 82 articles involving 14,352 participants were reviewed. Overall, 35.5 per cent of participants were men and 64.5 per cent were women. Conclusions: Researchers should seek to overcome barriers to men’s participation in carer research in order to ensure the experiences of male and female carers are recognised through research.

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Eldercare in Japan: Cluster Analysis of Daily Time-Use Patterns of Elder Caregivers

Methods: Using the data of the 2006 Japanese Survey on Time Use and Leisure Activities, we perform cluster analysis and identify seven unique patterns of daily time-use patterns of co-resident family elder caregivers: (1) ‘Overworkers’, (2) ‘Full-time Workers’, (3) ‘Part-time Workers’, (4) ‘Intensive Caregivers’, (5) ‘Houseworkers’, (6) ‘Leisurely’, and (7) caregivers, who needed medical attention on the diary day (‘Emergency Diaries’). Results: Our results show that the ‘Houseworkers’ and ‘Intensive Caregivers’ spend the most time on adult caregiving activities. Care activities for ‘Houseworkers’ are more likely to coincide with longer housework hours, increasing the total unpaid work volume. Conclusions: The analysis of demographic profiles suggests that similar daily patterns on weekdays and weekends do not belong to people with the same demographic characteristics. For instance, although on weekdays, ‘Leisurely Caregivers’ are mostly represented by the elderly taking care of other elderly, people of any age can belong to this category on weekends. Among all types of caregivers, only 'Intensive Caregivers' are as likely to be men as they can be women, suggesting that when the need for eldercare increases, family caregivers of any gender will step in.

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A comprehensive assessment of informal caregivers of patients in a primary healthcare home-care program

Background: Studies of the characteristics of informal caregivers and associated factors have focused on care-receiver disease or caregiver social and psychological traits; however, an integral description may provide better understanding of informal caregivers’ problems. Methods: A multicenter cross-sectional study in primary healthcare centers was performed in Barcelona (Spain). Participants were a random sample of informal caregivers of patients in a home-care program. Findings: Primary outcomes were health-related quality of life and caregiver burden, and related factors were sociodemographic data, clinical and risk factors, social support and social characteristics, use of healthcare services, and care receivers’ status. In total, 104 informal caregivers were included (mean age 68.25 years); 81.73% were female, 54.81% were retired, 58.65% had high comorbidity, and 48.08% of care receivers had severe dependence. Adjusted multivariate regression models showed health-related quality of life and the caregivers’ burden were affected by comorbidity, age, time of care, and dependency of care receiver, while social support and depression also showed relative importance. Aging, chronic diseases, and comorbidity should be included when explaining informal caregivers’ health status and wellbeing. Conclusions: The effectiveness of interventions to support informal caregivers should comprehensively evaluate caregivers when designing programs, centering interventions on informal caregivers and not care receivers’ conditions. : 

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“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

Background: Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. Objectives: This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants. Methods: Semi-structured interviews were conducted with 21 key stakeholders (12 family caregivers and 9 healthcare providers and community leaders). A descriptive, thematic analysis was conducted. Results: Qualitative data analysis revealed four themes related to the family caregiving experience: 1) perceptions of dementia symptoms as a normal part of aging rather than a disease, 2) caregiving as a moral and expected familial obligation, 3) patterns of caregiving that are heavily influenced by both gender and sibling order, and 4) multiple challenges or hardships, including time constraints, loss of income, increased social isolation, a toll on their perceived physical health, and emotional distress. Caregivers rejected the notion that caregiving was a “burden” and expressed their distress through terms such as frustration, sadness, and exhaustion. Conclusions: In this low-resource setting, the stress of family caregiving may be amplified by lack of community resources, cultural stigma discouraging outside help-seeking, and economic impact of care provision. The study highlights the vulnerability and predicament of Vietnamese women who often face multiple challenges in their caregiving role as well as the urgent need for the development of community-based programs and supports.

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"it can be hard but it's not bad": Three questions to solicit caregiver perceptions of benefits and burdens to participating in pediatric palliative care research

Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%). Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted. Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: "Hoping to help others,""Speaking about what is hard is important,"and "Being in the study was sometimes hard but not bad. Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge. 

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Work-family balance in the second half of life: caregivers' decisions regarding retirement and working time reduction in Europe

Objectives: This article investigates how different types of informal caregiving - upward, lateral and downward - impact men's and women's decisions to retire or to reduce their working hours, and how welfare policy characteristics moderate the linkage between informal care provision and employment participation. Methods: The analyses are based on six waves from the Survey of Health, Ageing and Retirement in Europe (SHARE). We exploit the data's longitudinal structure by applying fixed-effects regression models with lagged, time-varying country characteristics. Results: The results show that, in most cases, upward caregiving to parents is less relevant for deciding to remain in the labour market than lateral care (especially to siblings, friends and neighbours) and downward grandchild care. Conclusion: The welfare context moderates the impact of caregiving on labour market participation, with variation between the different types of care provided. [Abstract]

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Who is taking care of the Chinese functionally impaired older people? The characteristics of family caregivers from China Health and Retirement Longitudinal Study

Objective: To investigate caregiving in terms of personal, family and living arrangement among Chinese functionally impaired older people. Methods: A secondary cross‐sectional analysis of data obtained from China Health and Retirement Longitudinal Study (CHARLS) was performed. Among 6,252 participants aged 65 years or older, people with at least one indicator of Activities of Daily Living Scales (ADLs) of disabilities were included in this research. Statistical analyses included chi‐square tests and multiple logistic regression modelling. Results: Data of 973 functionally impaired people aged 65 and over, and 2772 adult offspring were extracted and analysed. The level of impairment, age, gender, marital status of the functionally impaired older people, adult offspring's income and living status were significantly associated with caregiving types. Conclusion: This research describes the characteristics of functionally impaired older people and their caregivers, which may help improve the efficiency, quality and equity within the Chinese social care system.

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“We are humans after all”: Family caregivers’ experience of caring for dependent older adults in Brazil

Objective: This paper aims to understand the experiences of family caregivers with dependent older adults in Brazil and the consequences of caring for dependent older adults in the family caregiver’s life. Methods: This is a qualitative multicenter study employing dialectical hermeneutics as a theoretical framework. In-depth interviews were conducted with 84 family caregivers in Brasília, Rio de Janeiro, Belo Horizonte, Fortaleza, Teresina, Porto Alegre, and Araranguá, and Manaus. Findings: The thematic analysis yielded three categories: motivations for taking on the caregiving role, influences on the family caregiver’s life, coping, and self-care modalities. The care assumed is influenced by affective relationships with older adults and ethical and moral responsibilities. The influences are related to the lack of preparation for caregiving, financial hardship, restricted freedom, and physical and mental health problems. Coping strategies were religion, spirituality, turn-taking between family caregivers, and learning about the tasks. Conclusions: Women predominate in caregiving due to cultural, ethical, and moral reasons. However, family caregivers often lack guidance and require protection and a support network. 

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'The Woman Gives': Exploring gender and relationship factors in HIV advance care planning among African American caregivers

Aims and objective: Advance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race. Background: Previous literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP. Design: The study was mixed methods and observational. Methods: Participants completed self‐report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor. Results: Less than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'. Conclusions: The present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender‐specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships. Relevance to Clinical Practice: Results underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life‐sustaining treatments at end‐of‐life. ACP is crucial now more than ever, as COVID‐19 complicates care for older adults with HIV at high risk of complications.

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What does anorexia nervosa mean? Qualitative study of the representation of the eating disorder, the role of the family and treatment by maternal caregivers

Background: Anorexia nervosa is a serious health problem worldwide. The literature widely recognises the roles of the family and caregivers in modulating the onset, development, maintenance and treatment of this disorder. However, few studies have addressed the problem from the perspective of maternal caregivers. Aims: This study aims to fill this gap by exploring how the meaning given to the term ‘eating disorder’ influences how mothers communicate with each other about a family member's health problems, how they present symptoms and how this problem is managed. Method: A narrative research project was conducted to capture the mothers’ experiences of living with a daughter diagnosed with anorexia nervosa. In particular, four semi-structured interviews were conducted to explore the ways in which they made sense of the disorder, their roles in treatment and their daughters’ treatment experiences. Results: The results show that the ways in which mothers characterise the disease guide their method of tackling it and the relationship they have with their daughter, as well as how they see their role in the care and treatment process. Conclusions: Anorexia is experienced as something that is uncontainable, and a dimension of its accommodation characterises the relationship between mothers and daughters receiving treatment for the disorder. Treatment is accompanied by a delegating dimension, and the clinical implications are discussed in this study.

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Structuring unequal relations: role trajectories in informal dementia care

Background: Transitions into informal care roles are associated with various characteristics, for example gender and geographic proximity, but such associations are insufficient to explain role delegation, overlooking the interpersonal structure–agency nexuses that constitute role trajectories. Methods: This paper explores unequal role delegation within 7 families affected by dementia, presenting data from interviews with 7 people with dementia and 26 carers living in the community in the United Kingdom. Findings: Two key care roles are identified: the relatively un‐involved role of peripheral actors and the lynchpin role of main carers who take on most of the care tasks. These roles emerge from negotiations around a range of extraneous factors that collectively comprise cumulative baggage, including historic conflicts and childcare commitments. The unequal distribution of care reflects widely noted demographic associations with role delegation, but is enacted and justified through the interpersonal negotiation of personalised meanings regarding individual circumstances and suitability. Conclusions: Though deeply personal when taken at face value, these meanings imbibe sociocultural norms and political economies of care to structurally position family members in relation to each other and signpost appropriate candidates for caring roles, even before such care is required.

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Stakeholder Voices: Interpreting Caregiving Research and Designing Next Steps

Background: Stakeholder engagement can enhance interpretation of research findings and promote meaningful dissemination into policy and practice. Methods: Several organizations dedicated to understanding the needs of diverse older adults and family caregivers and advancing practice and policy to improve their health came together in a series of discussions. More than 120 participants, including family/friend caregivers and their advocates and leaders and researchers from public and private organizations, generated an action agenda for those engaged with family caregivers in service delivery, research, and policy across three virtual sessions. Findings: Although there are common experiences and demands for caregivers, the meanings of these experiences are shaped by a cultural context, and the intersectionality of caregiver experiences by age, race/ethnicity, gender identity, sexual orientation, immigrant status, and other factors bring into focus the diversity of life and caregiving experience. Conclusions: This heterogeneity of experience crystalizes the importance of assuring the caregiver is at the center, and that design for programs, research, and policy recognize the importance of understanding caregivers and their unique needs before pre-supposing solutions.

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Race and Gender Differences in Perceived Caregiver Availability for Community-Dwelling Middle-Aged and Older Adults

Purpose: Informal family caregivers are increasingly recognized as critical for meeting the needs of individuals with chronic diseases associated with aging. This study examined race and gender differences in perceived informal caregiver availability for participants aged 45 and older in a large national epidemiological study. Design and Methods: Cross-sectional data were collected in structured telephone interviews from 32,999 participants from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants were asked if they believed that someone was available to provide care for them in the event of a serious illness or disability and, if so, to describe that person. Results: More than 80% of the participants reported having an available caregiver. Variables associated with lower perceived caregiver availability from a multivariable logistic regression analysis included being female, White, or unmarried; living alone; being older than 85; and having worse self-rated health. Spouses were the most likely caregivers for all racial and gender groups except for African American women, who identified daughters as the most likely caregivers. African American women also showed the smallest differential in perceived caregiver availability between married and unmarried (82.8% vs 75.7%), whereas White men showed the largest differential (90.9% vs 60.4%). Implications: Most individuals believe they have an informal caregiver available to them, but certain factors increase the risk of reporting no available caregiver. Increased efforts are needed to anticipate future caregiving needs, particularly for individuals who perceive a lack of available informal caregivers and may require more formal care services. 

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Prognostic awareness in advanced cancer patients and their caregivers: A longitudinal cohort study

Objective: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. Methods: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12‐month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty‐four patients completed all three phases of data collection. Results: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non‐significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185–0.510). Conclusions: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory. 

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Profile and needs of primary informal caregivers of older patients in Belgian geriatric day hospitals: a multicentric cross-sectional study

Background: With the improvement of life expectancy, the world faces increasing demands for care of older persons. In this manuscript, we define the characteristics of primary informal caregivers (PIC) of patients aged 75 years and older admitted to geriatric day hospitals (GDH) in Belgium. A PIC is defined as the person who most often provides care and assistance to persons who need to be cared for. We describe PIC socio-demographic characteristics, satisfaction, burden and wishes about caring; the type of assistance provided and received, their self-rated health, socio-demographic and medical characteristics of proxies, in particular the presence of behavioural disorders. Methods: We conducted a cross-sectional study in 25 GDH. Participants Four hundred seventy-five PIC of patients ≥75 years and their proxies. PIC completed a questionnaire at the GDH assessing burden by Zarit Burden Index-12 (ZBI-12), self-rated health, social restriction due to caregiving and financial participation. We compared the characteristics of PIC with high and low burden, and the characteristics of spouses and adult children PIC. We also analyzed factors associated with a high burden in a multivariable logistic regression model. Results: PIC were mainly women (72%), adult children (53.8%) and spouses (30.6%). The mean age was 64 ± 14 years for PIC and 84 ± 5 years for care recipients. PIC helped for most of Activities in Daily Living (ADL) and Instrumental ADL (iADL). The median ZBI-12 score was 10 [IQR 5–18]. In multivariable regression analysis, a high burden was positively associated in the total group with living with the relative (p = 0.045), the difficulty to take leisure time or vacation (p < 0.001), behavioral and mood disorders (p < 0.001;p = 0.005), and was negatively associated with bathing the relative (p = 0.017) and a better subjective health status estimation (p < 0.001). Conclusion: Primary informal caregivers, who were predominantly women, were involved in care for ADL and iADL. A high burden was associated with living with the relative, the difficulty to take leisure time or vacation and the relative’s behavioral and mood disorders. Bathing the relative and a subjective health status estimated as good as or better than people the same age, were protective factors against a high burden.

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Perceived health, caregiver overload and perceived social support in family caregivers of patients with Alzheimer’s: Gender differences

Background: Perceived health in caregivers is related to caregiver burden, psychological well‐being and social support. Women perceive poorer health and are more likely than men to experience caregiver overload. Objectives: The objectives of this study were to analyse perceived health, perceived social support and caregiver overload in family caregivers of patients with Alzheimer's disease, as well as to study the effect of the perceived social support as a mediating variable between perceived health and caregiver overload was also analysed, taking into account the caregivers’ gender. Methods: A cross‐sectional descriptive design was used. The sample consisted of 255 family caregivers of individuals with Alzheimer's disease in the Almería Health District (Spain). This study was conducted from January to December 2015. The caregivers’ mean age was 55.35 years (SD = 12.35), with 85.5% (n = 218) being women and 14.5% (n = 37) being men. The following questionnaires were administered: Goldberg's General Health Questionnaire‐28; the Caregiver Strain Index, measuring caregiver overload; and the Duke‐UNC‐11 functional social support questionnaire. Results: Poor perceived health, high caregiver overload and high perceived social support were found. Differences in perceived health and perceived social support were significantly higher in women than in men. In women, perceived social support was a mediating variable between perceived health and family caregiver overload. This mediation was not observed in men. Conclusion: This study suggests that perceived social support influences the emotional well‐being and the caregiver overload of family caregivers of patients with Alzheimer's. However, its effect differs according to gender. It would, therefore, be necessary to have an in‐depth understanding of the variables determining these differences in family caregivers.

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Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT

Backgrounds and Objectives: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. Methods: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. Results: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). Conclusions: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

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The Perceptions of Nurses and Nursing Students Regarding Family Involvement in the Care of Hospitalized Adult Patients

Background: Over the past few decades, there have been concerns regarding the humanization of healthcare and the involvement of family members in patients' hospital care. The attitudes of hospitals toward welcoming families in this respect have improved. In Arab culture, the main core of society is considered to be the family, not the individual. Objectives: The objective behind involving family in patient care is to meet patients' support needs. Consequently, this involvement affects nurses and their attitudes toward the importance of family involvement in patient care. Objectives: To describe nurses' and nursing students' perceptions of family involvement in the care of hospitalized adult patients in Saudi Arabia. Design: This study used a quantitative descriptive cross-sectional design. The data were collected using a convenience sampling survey via social media. Results: A total of 270 participants (staff and students) took part in this study, including 232 (85.9%) females and 38 (14.1%) males. Moreover, a high percentage of participants (78.8%) acknowledged that family presence strongly affected the improvement of the patient's condition. However, 69.3% of participants thought that involving family members during special care processes or cardiopulmonary resuscitation (CPR) would be traumatizing for these individuals. Moreover, there was a significant diffidence between the attitudes of the nurses and nursing students toward family involvement and the number of years of employment (F = 3.60, p < 0.05). On the contrary, there were insignificant differences between the attitudes of the nurses and nursing students toward family involvement and their gender, nationality, age, education level, and years of work experience in Saudi Arabia (p > 0.05). Furthermore, the regression analysis showed a significant negative correlation between nurses' years of employment and their support of family involvement in patient care (ß = −0.20, SE = 0.08, t = −2.70, p = 0.01). Conclusions: Nurses with more experience showed no support for family involvement in patient care. We have to consider the clinical barriers that affect nurses' support for family involvement in patient-centered care, such as hospital polices, guidelines, and the model used for family-centered care integration in the hospital system to facilitate the interaction between healthcare providers and family members.

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Non-spousal family support, marital status, and heart problems in adulthood

Background: Support from one's spouse has long been documented as a significant determinant of health for married individuals. However, non-spousal family support may play an important role in health particularly for unmarried individuals. Objectives: Therefore, this study examined whether the association between non-spousal family support and diagnosis of heart problems differed by marital status and whether gender and education moderated these associations. Results: Data came from the first two waves of the Midlife in the United States (MIDUS) study. This study selected respondents who participated in both waves of MIDUS and were not diagnosed with a heart problem at Wave 1 (N = 3,119). Participants reported whether they had any heart trouble. Discrete-time event history analysis was used to examine the risk of heart problems between MIDUS Waves 1 and 2. A higher level of non-spousal family support was associated with a lower risk of developing a heart problem only among unmarried women and unmarried individuals with high school education or less, and not for married individuals. Conclusions: Findings highlight the importance of considering specific sources of family support when studying heart health, and the health-protective role of non-spousal family support for those who are not married.

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#MoreThanAVisitor: Families as "Essential" Care Partners During COVID-19

The public health response to the current Coronavirus pandemic in long-term care communities, including assisted living, encompasses prohibiting visitors. This ban, which includes family members, has been criticized for being unfair, unhealthy, and unsafe. Against this backdrop, I examine the roles family play in residents' daily lives and care routines. I argue that classifying family as "visitors" rather than essential care partners overlooks their critical contributions and stems from taken-for-granted assumption about gender, families, and care work, and I demonstrate why families are more than visitors. Policies that ban family visits also reflect a narrow understanding of health that focuses on mitigating infection risk, but neglects overall health and well-being. This policy further stems from a limited comprehension of care relations. Research shows that banning family visits has negative consequences for residents, but also families themselves, and direct care workers. I argue that identifying ways to better understand and support family involvement is essential and demonstrate the utility of the Convoys of Care model for guiding the reconceptualization of family in long-term care research, policy, and practice during and beyond the pandemic.

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Modeling types of informal care dyads by gender, primary condition, and relative age

Background: While women remain the majority of caregivers, gender parity is reported among Millennials, people of color, and LGBTQ caregivers. Such dynamics of care dyads are rarely explored in relationship with caregiver selection, social support, or care outcomes, and without standardized measures we are uncertain whether this trend is associated with youth, demographic changes, or a societal shift. Methods: Utilizing the Caregiving in the US 2015 data set, this exploratory, quantitative study examines relationships between gender, primary condition, and two social designations around age (kinship generations and birth cohorts) to develop a preliminary categorization of informal caregivers in the United States by reviewing descriptives and correlations, then testing with multivariate regression. Results: A model combining Millennial caregivers, same-generation dyads, and two primary conditions (mental illness and stroke) successfully predicts variance as to whether a dyad will comprise one woman caring for another woman, the most common dyad. Conclusions: Findings demonstrate the interconnectedness of caregiving generational models, suggesting that categorizing dyads from such variables is viable. This study deepens inquiry into intergenerational caregiving and makes a case for generationality and caregiving to be studied together.

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Meaning through caregiving: A qualitative study of the experiences of informal carers

Background: This article reports the findings of a qualitative investigation of the way people find meaning through caregiving. Methods: It draws on the results of in-depth interviews with 37 informal carers and 11 stakeholders in Nottinghamshire, the United Kingdom. Findings: For most respondents caregiving involved looking after family members-for example, husband or wife, father or mother, young or adult children and mother-in-law. The meaning that respondents found through caregiving motivated them to cope with the difficulties associated with looking after a person in need. This research found that most informal carers operate with long-standing, gender-based understandings of their role, creating a potential risk that using gender-neutral terminology when referring to family members may obscure the subjective values that carers attach to informal caregiving and lead to role confusion. Moreover, although informal carers typically feel obliged to take care of family members in need and may value this role, they often require additional support from the state to reduce the pressures associated with caregiving and to enable them to continue to lead a meaningful life both within and beyond their caring role. 

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Does gender influence children's and young people's caring? A qualitative, systematic review and meta-ethnography

Aims and Methods: This qualitative, systematic review explored the influence of gender on children's and young people's caring roles. Findings: However, there was very limited research in this area. Eight studies were included and the synthesis yielded seven global themes. The meta- ethnography produced a higher- order concept— the gendered reproduction of children's and young people's caring. Conclusions: The review shows that children and young people are relied on as a caring resource in the global North and South. We emphasise that gender equality in caring, particularly among adults, is necessary to enhance the lifechances of girls and young women.

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“Neither a wife nor a widow”: an interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness

Background: Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Methods: Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): Findings: (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants’ accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Conclusions: Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.

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Informal Caregiving and Strains: Exploring the Impacts of Gender, Race, and Income

Background: Informal caregivers are those who provide care for others without compensation. In the US, 85 % of elderly individuals receive care from an informal caregiver, and this number is expected to increase. Caregivers often experience different types of strain, stemming from physical, emotional, and financial demands. Methods: Guided by intersectionality theory, this study explores the relationships between informal caregiving strains and gender, race, and income, along with various control variables, including age, marital status, education, number of hours spent providing care, and employment status. Data from the 2015 Caregiving in the US survey (N = 1248) were used. Results: Findings indicated male informal caregivers reported more financial strain compared to females. White women reported more emotional strain than women of color, and those with higher incomes reported less financial strain. Gender, race, and income were not significantly related to physical strain among informal caregivers. Conclusions: Implications, limitations, and suggestions for future research are discussed. 

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Informal caregivers’ preparation and administration of home hospice prescribed injectable subcutaneous drugs – a prospective observational pilot study

Introduction: Patients at the end-of-life often require subcutaneously administered medications. At present it is impossible for hospice home care nurses to prepare ampule drugs before each administration. Aim of the study: To assess the feasibility of the preparation and administration of these drugs in practice. Material and methods: The training was performed on 37, not previously instructed, adult informal caregivers. A written medical order from the authorial home medication template and the step-by-step drug preparation instruction were used. The percentage of persons who successfully passed the training self-performed the procedure properly directly after the education and a week later were assessed. We monitored the adverse events in drug preparation or administration and the number of both planned and intervention visits of the hospice team, external consultations, and hospitalisations within a week of observation. Results: The educated persons (typically close female relatives) described the procedure as easy to perform. All of them were able to prepare drugs properly and were confidently convinced of it, both directly after the training and after a week of practice. There were few local adverse events of subcutaneous injections. In one case an incorrect drug dose was noticed. Thirty-four patients remained under hospice home care until their death. Two hospice ward deaths were associated with the increasing dependency on incremental caregivers’ insufficiency, and one hospital death was linked to the rapid deterioration of the patient’s condition. Conclusions: The effective training of informal caregivers of hospice home care patients in the independent and safe preparation and administration of ampule drugs is feasible.

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Influence of gender determinants on informal care and health service utilization in spain: Ten years after the approval of the equality law

Background: The existence of gender inequalities in health, in the use of health services, and in the development of informal care has been demonstrated throughout scientific literature. In Spain, a law was passed in 2007 to promote effective equality between men and women. Despite this, different studies have shown that the previous gender inequalities are still present in Spanish society. Objectives: For all these reasons, the objective of this paper is to study the differences by sex in informal care and in the use of emergency care, and to identify the existence of gender inequalities in Spain 10 years after the adoption of the aforementioned equality law. Methods: In this case, we development a cross-sectional study based on the 2017 Spanish National Health Survey of the Spanish population aged 16 and over. To analyze the influence of gender determinants on informal care and emergency care utilization, logistic regressions were performed, model 1 was adjusted for age, and model 2 was further adjusted too by the variables of the Andersen care demand model. Results: The results showed that informal care and the use of the emergency care continues to be higher in women than in men. Informal care in women was related to a higher level of education. In emergency care, the older the age, the lower the probability of utilization, and living in a rural municipality was related to a higher probability of utilization for both sexes. Conclusions: Finally, we concluded that there is still a need for studies that analyze gender inequalities in different contexts, such as the informal care and the use of health services. This is especially relevant in Spain, where economic changes have led to a change in roles, mainly for women, and new management strategies are needed to achieve equity in care and effective equality between men and women. 

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Inclusion of relatives in stroke rehabilitation: Perception of quality of services they received in the context of early supported discharged (ESD), in- and out-patient services

Background: Relatives of stroke patients should be an integral part of the continuum of rehabilitation services. Objectives: The objective was to describe their perception of the quality of the services they received in the context of early supported discharged (ESD), in- and out-patient rehabilitation services. Methods: Descriptive study using the Quality of Services Questionnaire for Relatives post-stroke (QSQR) completed online by relatives after the patient's discharge. It consists of 22 statements with respect to three subscales: 1) the training/instructions, 2) the information provision and 3) the organizational process of the service offer. Space is allowed for free comments and two open-ended questions. Quantitative data were analyzed descriptively, and we used a content analysis for qualitative data. Results: One-third (30/90; 33.3%) of the sample are composed of relatives aged 55 and under, with a majority (81%) of women and 51.3% of spouses. The training/instructions and information provision were perceived positively with a mean % agreement at 85.0 ± 29.6 and 84.8 ± 22.4, respectively. The mean % agreement was 91.4 ± 17.8 for the organizational process subscale. A significantly higher score (p = 0,03; Kruskal Wallis test) was found for out-patient services (n = 20) as compared to ESD (n = 29) or in-patient rehabilitation (n = 41). Qualitatively, a lack of involvement of relatives was mentioned as well as a lack of personalized information about stroke and its consequences and provision of resources available. However, communication between professionals, their availability, and their professionalism were appreciated. Conclusions: Despite quantitative high scores, qualitative data allowed the identification of concrete avenues for improvement to truly and systematically include relatives in stroke rehabilitation.

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The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity. Results: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected. Conclusions: Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.

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I Was Not Expecting That! Ethical Dilemmas in Alzheimer’s disease and Alzheimer’s Disease Related Dementia Caregiving Research

Background: Alzheimer’s disease and Alzheimer’s disease Related Dementias (AD/ADRD) affect all aspects of life and relationships for those involved. Female family caregivers constitute an informal (unpaid) and critical workforce who provide 83% of the care for persons living with AD/ADRD in the community settings (Alzheimer’s Association, 2021). In 2020, U.S. informal caregivers provided an additional 400 million hours of unpaid care valued at $244 billion (18.6 billion hours) in comparison with 2017 (Alzheimer’s Association, 2021). Consequently, family caregivers of persons with AD/ADRD report a loss of mental, emotional, physical health 50% more often than other caregivers (Alzheimer’s Association, 2021). Family caregiving of a loved one with AD/ADRD is often counterintuitive and based on trial and error. Caregivers cannot subjectively understand their family members’ challenges with AD/ADRD. Thus, either partner of the AD/ADRD caregiving dyad may be at risk for injury or harm. Family dementia caregiving is often challenging due to the neurocognitive deficits associated with dementia, especially in later stages. The typical slow progressive nature of AD/ADRD often obscures a family dementia caregiver’s ability to identify important functional neurocognitive changes.

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How do middle-aged chinese men and women balance caregiving and employment income?

Background: Unpaid family caregivers might suffer losses in income as a result of care provision. Methods: Here we used data from the baseline survey of the China Health and Retirement Longitudinal Study to assess the relationship between hours of weekly caregiving provided to grandchildren/parents/parents-in-law and individual’s monthly employment income. Our study sample comprised 3718 middle-aged Chinese adults who were of working age (45–60 years). For women and men separately, we used a likelihood-based method to determine a caregiving threshold in a two-stage Heckman selection procedure. Instrumental variables were used to rule out the endogeneity of caregiving hours. Results: Our analysis revealed a negative association between caregiving and income for women that depended on a caregiving threshold of 63 h per week. There was an absence of caregiving-income relationship among men. Conclusions: These results offer new insights into the opportunity costs of unpaid caregiving and support tailored policies to protect the financial well-being of female caregivers. 

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Health, Work, and Social Problems in Spanish Informal Caregivers: Does Gender Matter? (The CUIDAR-SE Study)

Background: The aim of this study was (i) to analyze problems faced by informal caregivers in three areas of their life: health, work and finances, and family and social relationships, (ii) to investigate the main determinants of these problems, and (iii) to explore differences between men and women. Methods: The study population consisted of people aged ≥18 years living in a family home who were providing unpaid care to a dependent person in the same or another home and who were registered as caregivers with the Primary Health Care District of Granada or the Provincial Council of Gipuzkoa. Several logistic regression models were built to analyze the likelihood of caregivers experiencing health, work-related, or social problems as a result of their caregiving responsibilities. Results: Informal female caregivers were more likely to experience problems attributed to caregiving than their male counterparts, particularly in the areas of health and work. Additional factors associated with an increased likelihood of problems were low perceived social support, performance of ungratifying tasks, and fewer years as a caregiver. Conclusions: Informal caregivers in Spain face significant problems as a result of their caregiving duties, and the impact on men and women is different. Policies and interventions to mitigate the negative effects of unpaid caregiving should incorporate differential strategies to meet the specific needs of male and female caregivers in different caregiving contexts.

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Health Promotion Behavior among Older Korean Family Caregivers of People with Dementia

Background: People adopt health promotion behaviors to promote their health as they interact within the environment. Objective: The purpose of this study was to examine factors influencing health promotion behaviors among older adults caring for family members with dementia. Methods: For this cross-sectional study, data from 135 older adults who were the main caregivers were collected at an outpatient clinic at a university hospital in the capital city of South Korea between September and October in 2020. Sociodemographic characteristics, caregiver-related characteristics, dementia knowledge, fear of dementia, and health promotion behaviors were measured. Results: Univariate analysis revealed that the level of health promotion behaviors differed by age, sex, educational level, monthly income, relationship with the family member with dementia, and cohabitation with family members with dementia. In the multivariate analysis, a hierarchical multiple regression model explained 33.9% of the variance. Sex, duration of caregiving, use of long-term care service, and fear of dementia predicted health promotion behavior. Conclusion: A strategic tailored care plan for target population is needed to improve the health promotion behavior of older adults caring for family members with dementia.

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Gendered caregiving and structural constraints: An empirical ethical study

Background: The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential. Objectives: To examine female members’ lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences. Research design: This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry. This article focused on three cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China.  Approval was obtained from the university ethics committee. Findings: The empirical work highlights caregivers’ voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers. Conclusion: This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people.

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Gender, Class and the Cost of Unpaid Care: An Analysis of 25 Countries

Background: This article examines the relationship between gender, class and unpaid care for children and elderly household members across twenty-five countries. Methods: Using the microdata files of the 2015–2017 Luxembourg Income Study, we demonstrate that household income quintile shapes the relationship between resident caregiving and a) women's diminished share of household income and b) the associated "wage penalty" women experience in paid employment, examining dual-headed heterosexual households and grouping countries at varying levels of GDP per capita. Results: Our analyses demonstrate that both eldercare and childcare have a negative impact on women's economic outcomes, yet the effects of both types of unpaid care vary across class. Overall, childcare has a larger impact for women in lower income households, while eldercare has a larger impact for women in higher income households. However, the wage penalties experienced by wealthier women due to either type of potential care responsibilities are considerably less than those experienced by women in poorer households. Conclusions: Together, these data suggest that unpaid resident caregiving has effects that are both highly gendered and highly classed, leading to intersectional disadvantages for women performing unpaid care within poorer households across countries, and with effects that, in some cases, are further amplified within low-GDP countries. 

 

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Gender differences in grandparent caregiving and life satisfaction of older jamaicans

Purpose: Grandparents are common providers of childcare within the Caribbean region. Yet research on the implications of grandparent caregiving for older adults’ well-being is limited. This study examined gender differences in the relationship between grandparent caregiving and the life satisfaction of older adults in Jamaica. Methods: Using a sample of 1,622 grandparents 60 years and older drawn from the 2012 study “The Health and Social Status of Older Jamaicans,” we estimated binary logistic regression models to examine the association between the frequency of grandparent caregiving and the life satisfaction of grandparents. Findings: Grandmothers were more likely than grandfathers to provide care. We did not find a statistically significant gender difference in the life satisfaction of caregiving grandparents. Yet, gender differences in the patterns of association between grandparent caregiving and life satisfaction were evident. Among grandmothers, both occasional and regular caregiving was associated with higher life satisfaction relative to non-caregivers. Among grandfathers, however, only regular caregiving was positively associated with life satisfaction. Originality: This is the first population-based study within the Caribbean to examine gendered patterns of grandparent caregiving and the association with grandparents’ well-being. The findings of this study suggest that grandparent caregiving is beneficial to the well-being of older Jamaican men and women. This study challenges assumptions of gender norms that typically do not position men to be involved in caregiving roles, and to derive satisfaction from such roles, within Caribbean households. The authors suggest more attention should be given to interventions to encourage men to be actively involved in family caregiving.

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Gender Differences in Caregiver Burden Among Family Caregivers of Persons With Dementia

Objectives: The current study aimed to identify gender-dependent factors that influence caregiver burden among family caregivers of persons with dementia through secondary data analysis. Methods: We used a nationally representative survey of 379 family caregivers of persons with dementia completed in 2014. We examined factors affecting the burden experience of male and female caregivers, guided by the stress process model, using hierarchical regression. Results: The analytic sample included 159 males (42%) and 220 females (58%). For males, age of care recipient, being an adult child, social support, instrumental activities of daily living performed, and caregiving impact on caregivers' health influenced burden. For females, co-residence, social support, caregivers' current health, and caregiving impact on caregivers' health impacted burden. Conclusions: Understanding gender differences related to caregiving burden is beneficial for developing effective targeted interventions that support the caregiving role and improve the quality of life of caregivers. 

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From the Other Side of the Bed: Lived Experiences of Registered Nurses as Family Caregivers

Background: To provide patient- and family-centered care, health care providers must understand the caregiver experience. Evidence suggests that registered nurses functioning as family caregivers (RNFCs) may have unique experiences and challenges. Purpose: The purpose of this study was to explore the lived experiences of RNFCs during an adult family member's episode of care in the southern United States. Methods: A descriptive phenomenological approach was used to describe the essence of the RNFC experience throughout an episode of care. Twenty-five participants were recruited for semistructured, audiorecorded interviews. Data were analyzed using descriptive data analysis and constant comparison techniques. Results: Participants were predominantly female (88%). The essence of the phenomenon was dual roles. Five themes emerged: (1) blurring the boundaries, (2) revealing my identity, (3) having insider knowledge, (4) managing expectations, and (5) learning from my experience. Conclusions: While caregiver experiences may be similar, RNFCs struggle with dual roles of registered nurse and caregiver, occasionally blurring boundaries of care.

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Family relations of older people: Personal and practical support

Summary: In this study, we examined older people's views and experiences of family relations in Iceland. Objectives: The goal was to explore the frequency and kinds of contact, and the support older people received from their adult biological children and stepchildren. Methods: We performed cluster sampling covering community centers in municipalities nationwide in Iceland. The questionnaire was answered by 273 older people, including 193 women (75%) and 64 men (25%). The average age was 79 years. About 200 (74%) lived in the capital area of Reykjavik, while 70 (26%) lived in the countryside. Findings: Older people received more support from biological children than stepchildren. Specifically, differences were found in both frequency and quality of contact. The results revealed gender differences; daughters offering more help and support than sons. Older women have more frequent contact and closer relationships with their biological children than with other children. Relationships with stepchildren were weaker in all respects. These results are discussed in connection to structural and cultural factors, with a focus on the implications of changes in family structure, new communication styles, and effects of media. Applications: Although the increased frequencies of divorce and stepparenting can affect connections within families, communities commonly disregard the different needs of stepfamilies, sometimes called "stepblindness". Policy makers and professionals such as social workers need to concede different needs of older people in stepfamilies. Conclusions: Conclusions are drawn from the perspective of welfare policy issues, such as the need of more precise law provisions and implementations on social services for families.

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Family functionality and burden of family caregivers of users with mental disorders

Objective: to verify the difference of mean or median in the scores of family functionality and burden of family caregivers of people with mental disorders. Methods: cross-sectional study carried out in a Psychosocial Care Center with 61 family caregivers. Instruments were used for sociodemographic characterization, care process, Family Apgar Index and Family Burden Interview Schedule. Mean/median difference tests were adopted. Results: women with mental disorders and the presence of children in the home decreased the median of the family Apgar score. Difficulty in the relationship between caregiver/user, nervousness/ tension, physical aggression and agitation of patients increased the global average of subjective burden. Conclusions: nursing interventions to reduce burden and promote family functionality should prioritize caregivers of women with mental disorders, assist them in managing troublesome behaviors and raising awareness of family nucleus to co-responsibility for caring for sick people, especially in families with children who demand daily care.

 

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Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome

Background: Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Methods: Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Results: Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Conclusions: Individually tailored psychosocial support is needed.

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Family dermatology life quality index in patients with pemphigus vulgaris: A cross-sectional study

Background and Aims: Pemphigus vulgaris is a rare autoimmune intraepidermal vesiculobullous disease involving the skin and mucosa. It impacts the quality of life of both patients and their families. Methods: A total of 70 patients with pemphigus vulgaris (either outpatient or hospitalized) were enrolled using the simple sampling method between 2016 and 2017 from the dermatology clinic at Faghihi Hospital, Shiraz, Iran. A validated Persian version of the Family Dermatology Life Quality Index (FLDQI) questionnaire was filled by a family caregiver. The questionnaire contained 10 items assessing the quality of life of the family. Demographic variables were recorded in a separate form. Results: The mean age of the patients was 51 ± 11.3 years and that of the family caregivers was 32 ± 8.8 years. The FLDQI score was higher (poorer quality of life) if the patient was male, older, had shorter disease duration or had fewer disease recurrences (P = 0.046, 0.01, 0.001 and >0.001, respectively). Higher scores were also obtained in the less-educated caregivers (P = 0.026) but there was no association with either gender or age (P = 0.399, 0.1). Conclusion: Pemphigus vulgaris significantly affects the Family Dermatology Life Quality Index. Education and counseling of family caregivers by various support groups such as Pemphigus Family Associations could be effective in improving the quality of life of the caregivers.<bold>Limitations: </bold>This study did not assess the effect of comprising domain analysis, severity of disease, patients' Dermatology Life Quality Index (DLQI), mucosal involvement, response to treatment, outpatient or admitted status, socioeconomic status, or the quality of life among the various family members. 

 

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Family Caregiving During the COVID-19 Pandemic

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected persons with existing chronic health conditions. The pandemic also has the potential to exacerbate the stresses of family caregiving. We compare family caregivers with noncaregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research Design and Methods: We conducted a cross-sectional online survey of 576 family caregivers and 2,933 noncaregivers from April to May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation, and financial well-being and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured sociodemographic, caregiving contextual variables, and COVID-19-related caregiver stressors (COVID Caregiver Risk Index). Results: Controlling for sociodemographics, family caregivers reported higher anxiety, depression, fatigue, sleep disturbance, lower social participation, lower financial well-being, increased food insecurity (all p <.01), and increased financial worries (p =.01). Caregivers who reported more COVID-19-related caregiver stressors and disruptions reported more adverse outcomes (all p <.01). In addition, caregivers who were female, younger, lower income, providing both personal/medical care, and providing care for cognitive/behavioral/emotional problems reported more adverse outcomes. Discussion and Implications: Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress–health process models. Family caregivers should receive increased support during this serious public health crisis.

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Family Caregiver Access of Online Medical Records: Findings from the Health Information National Trends Survey

Over 40 million Americans provide unpaid support to an adult relative for tasks including accompanying them to doctor visits and/or supporting them in medical decisions. Over the past several years—and particularly amid COVID-19—there has been increasing interest and demand for caregivers to be more involved in communication with providers to support patient engagement and patient-centered care as evidenced by recent state and federal policy initiatives to expand support to caregivers. One way to improve communication between caregivers and providers is through an online medical record (patient portal), which enables patients to acquire important health information and communicate with medical providers. However, caregivers’ access to adult care recipients’ portals is limited and varies across healthcare organizations and states. The objective of this study was to determine the relationship between socio-demographic attributes and responsibilities of caregivers and likelihood of (a) communicating with recipients’ providers and (b) accessing recipients’ online records.

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Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US

Background: Despite the important role that family members can play in dementia care, little is known about the association between the availability of family members and the type of care, informal (unpaid) or formal (paid), that is actually delivered to older adults with dementia in the US. Results: Using data about older adults with dementia from the Health and Retirement Study, we found significantly lower spousal availability but greater adult child availability among women versus men, non-Hispanic Blacks versus non-Hispanic Whites, and people with lower versus higher socioeconomic status. Adults with dementia and disability who have greater family availability were significantly more likely to receive informal care and less likely to use formal care. In particular, the predicted probability of a community-dwelling adult moving to a nursing home during the subsequent two years was substantially lower for those who had a co-resident adult child (11 percent) compared with those who did not have a co-resident adult child but had at least one adult child living close (20 percent) and with those who have all children living far (23 percent). Conclusions: Health care policies on dementia should consider potential family availability in predicting the type of care that people with dementia will use and the potential disparities in consequences for them and their families.

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Factors predicting quality of life in family carers of people with dementia: The role of psychological inflexibility

Aims: The current study aimed to investigate the impact of carer-related modifiable factors (i.e., knowledge about dementia, psychological inflexibility, self-compassion and hours of support from other family members) on quality of life (QoL) among family carers. Methods: A multiple regression analysis was conducted with QoL as a dependent variable. All factors were entered into the model simultaneously as independent variables. Ninety-one family carers with a mean age of 69.5 years old were assessed. Results: Participants were primarily female family members looking after a person with severe Alzheimer's disease. The model's R2 was 24%. The results demonstrated that psychological inflexibility was the only significant independent variable predicting QoL (β = −0.46, p = 0.00, 95% CI: −0.71 to −0.20), and higher psychological inflexibility was associated with worse QoL. Conclusions: These findings suggest that targeting carer's psychological inflexibility through psychological interventions such as Acceptance and Commitment Therapy may be particularly important in promoting QoL among family carers of people with dementia.  

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Factors influencing scales of burden, coping mechanisms, and quality of life in caregivers of hemodialysis patients in Andhra Pradesh, India

Background: Evaluation of factors influencing scales of burden, coping mechanisms, and quality of life (QOL) in caregivers of hemodialysis (HD) patients may lead to the revision of interventions aimed at the betterment of QOL of caregivers of HD patients. In this study, we investigated the influence of demographic, social, and clinical variables on burden, coping mechanisms, and QOL in caregivers of HD patients. Methods: In this prospective study, 150 caregivers of HD patients were recruited. Assessment of burden, coping strategies, and QOL were made by the Zarit Burden Interview, Revised Ways of Coping, and Short Form-36 QOL. The role of age, gender, and social and clinical variables on these constructs was investigated using multivariate analysis of variance. Results: The mean age was 43.86 ± 1.11 years. Males outnumbered females. Most were Hindu, married, primary school educated, unemployed, spouses, caring the patients, and suffering from chronic diseases for <5 years. In multivariate analysis of variance, effect of age on physical functioning (PF), general health (GH), and physical component summary (PCS) score (P < 0.01); gender on burden, distancing, seeking social support, role limitation due to emotional problem, and pain (P < 0.05); role limitations due to physical health, energy/fatigue (EF), emotional well-being, PCS, and mental component summary (MCS) score (P < 0.01); religion on PF (P < 0.05); marital status on burden and GH (P < 0.05); PF and PCS (P < 0.01); relationship of caregiver with the patient on PCS (P < 0.05); EF and MCS (P < 0.01); and presence of chronic diseases on GH and social functioning (P < 0.01) were observed. Conclusion: The role of demographic, social, and clinical variables should be taken into consideration while initiating therapies for reducing the burden and improving the QOL of caregivers.

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Factors associated with post-traumatic stress disorder in family caregivers of psychotic patients

Introduction: An association can be found between patient with psychosis and perpetrating acts of violence. So, the caregiving role can impact negatively on psychosis carer psychological health and wellbeing. Objectives: The aim of this study was to identify the factors associated with post-traumatic stress disorder (PTSD) in family caregivers of psychotic patients following exposure to aggression. Methods: This cross-sectional study was carried out involving 95 family caregivers of psychotic patients followed in psychiatry. Data were gathered from caregivers about their experiences in providing care. Sociodemographic and clinical data of patients were collected from medical records.We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: The caregivers were male in 51.6% and with low educational level in 46.3% of cases. A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD. Decreased contact with patient (p=0.01), male gender (p=0.00), older age (p=0.00), living far from patient (p=0.00), parent relationship of caregivers (p=0.00), diagnosis of schizophrenia or schizoaffective disorder (p=0.00) and poor adherence to treatment (p=0.00) in affected relatives were associated with the presence of PTSD following exposure to moderate to severe aggression. Conclusions: These findings highlight the need for interventions to promote family psychoeducation and to provide psychosocial support for caregivers of patients in order to prevent the traumatic impact of violence on them.

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Factors Associated With Intention to Adopt mHealth Apps Among Dementia Caregivers With a Chronic Condition: Cross-sectional, Correlational Study

Background: In the United States, nearly 80% of family caregivers of people with dementia have at least one chronic condition. Dementia caregivers experience high stress and burden that adversely affect their health and self-management. mHealth apps can improve health and self-management among dementia caregivers with a chronic condition. However, mHealth app adoption by dementia caregivers is low, and reasons for this are not well understood. Objective: The purpose of this study is to explore factors associated with dementia caregivers’ intention to adopt mHealth apps for chronic disease self-management. Methods: We conducted a cross-sectional, correlational study and recruited a convenience sample of dementia caregivers. We created a survey using validated instruments and collected data through computer-assisted telephone interviews and web-based surveys. Before the COVID-19 pandemic, we recruited dementia caregivers through community-based strategies, such as attending community events. After nationwide closures due to the pandemic, the team focused on web-based recruitment. Multiple logistic regression analyses were used to test the relationships between the independent and dependent variables. Results: Our sample of 117 caregivers had an average age of 53 (SD 17.4) years, 16 (SD 3.3) years of education, and 4 (SD 2.5) chronic conditions. The caregivers were predominantly women (92/117, 78.6%) and minorities (63/117, 53.8%), experienced some to extreme income difficulties (64/117, 54.7%), and were the child or child-in-law (53/117, 45.3%) of the person with dementia. In logistic regression models adjusting for the control variables, caregiver burden (odds ratio [OR] 1.3, 95% CI 0.57-2.8; P=.57), time spent caregiving per week (OR 1.7, 95% CI 0.77-3.9; P=.18), and burden of chronic disease and treatment (OR 2.3, 95% CI 0.91-5.7; P=.08) were not significantly associated with the intention to adopt mHealth apps. In the final multiple logistic regression model, only perceived usefulness (OR 23, 95% CI 5.6-97; P<.001) and the interaction term for caregivers’ education and burden of chronic disease and treatment (OR 31, 95% CI 2.2-430; P=.01) were significantly associated with their intention to adopt mHealth apps. Perceived ease of use (OR 2.4, 95% CI 0.67-8.7; P=.18) and social influence (OR 1.8, 95% CI 0.58-5.7; P=.31) were not significantly associated with the intention to adopt mHealth apps. Conclusions: When designing mHealth app interventions for dementia caregivers with a chronic condition, it is important to consider caregivers’ perceptions about how well mHealth apps can help their self-management and which app features would be most useful for self-management. Caregiving factors may not be relevant to caregivers’ intention to adopt mHealth apps. This is promising because mHealth strategies may overcome barriers to caregivers’ self-management. Future research should investigate reasons why caregivers with a low education level and low burden of chronic disease and treatment have significantly lower intention to adopt mHealth apps for self-management.

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Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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Exploring resilience in adult daughter and spousal carers of people living with dementia in North West England: an ecological approach

Purpose: Research has shown that informal carers of people living with dementia (PLWD) can be resilient in the face of caregiving challenges. However, little is known about resilience across different kinship ties. This study aims to update and build on our previous work, using an ecological resilience framework to identify and explore the factors that facilitate or hinder resilience across spousal and adult daughter carers of PLWD. Design/methodology/approach: This study conducted in-depth qualitative interviews with a purposive sample of 13 carers from North West England and analysed the data using a constructivist grounded theory approach (Charmaz, 2003). Findings: Adult daughters were motivated to care out of reciprocity, whereas spouses were motivated to care out of marital duty. Spouses had a more positive and accepting attitude towards caregiving and were better able to maintain continuity, which facilitated their resilience. Research limitations/implications: Resilience emerged on multiple levels and depended on the type of kinship tie, which supports an ecological approach to resilience. The implications of these findings are discussed. Originality/value: This paper makes a novel contribution to the literature as it uses an in-depth qualitative methodology to compare resilience across spousal and adult daughter carers of PLWD. This study adopts an ecological approach to identify not just individual-level resilience resources but also interactive community- and societal-level resources. 

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Eldercare in Transnational Families and the Swiss Immigration Regime

International migration research increasingly addresses the complex mobility that occurs in transnational contexts. Authors who study ties between migrants and their parents often focus on money transfers and financial investments. However, exchanges within transnational families are broader and multifaceted, and include an important care dimension that is shaped by gendered and cultural social codes. Studies show that women are often engaged in caring for their older parents even from a great distance. They develop strategies to attend to the well-being of their parents, including relocating them in order to bring them in closer proximity. While the economic aspects of care work within transnational family networks are well-researched, we lack knowledge about the impacts of national migration regimes on the abilities of migrants to take care of the parents that they have left behind. This chapter points to some areas in need of conceptual development in addressing this gap. We draw on existing literature and legal documentation to explore how some legal contexts (e.g., selective immigration policies, limited family reunification) restrict care circulation within transnational families and tend to reinforce inequalities between advantaged and disadvantaged migrants, particularly women. We emphasise the need for research concerning transnational family care circulation that focuses more on South-North migrants whose economic and legal situations are particularly precarious.

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Elder care and paid work: gender differences in the relationship between unpaid elder care work and employment in Bulgaria

Background: Care of elderly family members affects the welfare of the elderly and caregivers and has macroeconomic implications. In Eastern Europe, aging populations combined with under-developed care policy increase family care burdens, but the impact of care on labour force participation is understudied in this context. Methods: Using two waves of the Generations and Gender survey, we estimate the impact of care demand on paid employment in Bulgaria. Results: We find that living with an elderly or disabled parent has a negative impact on employment for women and that this impact cannot be explained by reverse causality or unobserved individual characteristics. Conclusions: More developed care policy would benefit caregivers and would be likely to generate broader fiscal benefits.

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The effect of socioeconomic status on informal caregiving for parents among adult married females: evidence from China

Background: Married female caregivers face a higher risk of an informal care burden than other caregivers. No study has explored the effect of socioeconomic status (SES) on the intensity of informal care provided by married female caregivers in China. The purpose of this study is to empirically examine how the SES of married female caregivers affects the intensity of the informal care they provide for their parents/parents-in-law in China. Methods: The data for this study were drawn from 8 waves of the China Health and Nutrition Survey (CHNS). The respondents were married women whose parents/parents-in-law needed care and lived in the same city as them. SES was defined based on four indicators: education, economic status, employment status, and hukou (China’s household registration system). Informal caregivers were divided into three categories: non-caregivers (0 h/week), low-intensity caregivers (less than 10 h/week), and high-intensity caregivers (10 h/week and above). Multinomial logistic regression analysis was used to examine the relation between SES and the likelihood of a low- and high-intensity caregiving among married female caregivers, adjusting for age, family characteristics and survey wave. Results: Of the 2661 respondents, high-intensity and low-intensity caregivers accounted for 16.35 and 21.27%, respectively. The multinomial logistic regression results showed that the likelihood of being a high-intensity caregiver versus (vs. a non-caregiver) increased as the caregiver’s educational attainment increased (p < 0.05), and that high economic status was related to the likelihood of being a high-intensity caregiver, but this relationship was only significant at the 10% level. Urban females were 1.34 times more likely than their rural counterparts to provide low-intensity care vs. no care (p < 0.05) and were 1.33 times more likely to provide high-intensity care vs. no care (p < 0.05). Employed females were 1.25 times more likely than those unemployed females to provide low-intensity care vs. no care (p < 0.05). Conclusions: Differences in SES were found between high-intensity caregivers and low-intensity caregivers. Women with high educational attainment and urban hukou were more likely to provide high-intensity informal care, and women who were employed and had urban hukou were more likely to provide low-intensity care.

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Do Informal Caregivers Expect to Die Earlier? A Longitudinal Study with a Population-Based Sample on Subjective Life Expectancy of Informal Caregivers

Introduction: Subjective life expectancy is a good predictor of health and could therefore be a relevant factor in the informal caregiving context. However, no research has been conducted on the perception of life expectancy by informal caregivers. This is the first study that examines the association between transitioning into, and out of, informal caregiving, and subjective life expectancy, and the relevance of employment status and gender for these associations. Methods: A longitudinal study was conducted with data from the German Ageing Survey (waves 2008, 2011, 2014, and 2017). Up to 20,774 observations pooled over all waves were included in the main models. In total, 1,219 transitions into and 1,198 transitions out of informal caregiving were observed. Fixed effects (FE) regression analysis was used. Moderator and stratified analyses were conducted with gender and employment status used as moderator variables and to stratify the sample. Sociodemographic information, health, and lifestyle factors were controlled for. Results: Results of adjusted FE regression analyses indicated a significant reduction of subjective life expectancy when transitioning into informal caregiving. No significant change was found when transitioning out of informal caregiving. Subjective life expectancy was significantly decreased when employed individuals transitioned into informal caregiving and significantly increased when they transitioned out of caregiving. Findings for women transitioning into informal caregiving indicated a significant decrease in subjective life expectancy, while no significant change was found among men. Conclusion: The study's findings indicate that informal caregivers, female and employed caregivers in particular, perceive informal care provision as dangerous for their longevity and expect to die earlier when transitioning into informal caregiving. Thus, supportive interventions for informal caregivers, particularly employed and female informal caregivers, are recommended. 

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Demographic, health, and economic transitions and the future care burden

Background: Care needs across countries depend on fertility rates, aging of the population, and the prevalence and causes of morbidity. Method/Disucussion: A care dependency ratio measures future care needs relative to the potential future supply of caregivers. Time-use survey data indicate that future unpaid caregivers will be equivalent to one- to two-fifths of the labor force. • Unless the gender division of family care work changes, women and girls will be providing four-fifths of future unpaid caregiving. To lessen the family's care burden, governments should invest in care programs, basic infrastructure, and measures to protect caregivers and recipients. The COVID-19 pandemic has caused millions of infections and deaths worldwide, forced schools to suspend classes, workers to work from home, many to lose their livelihoods, and countless businesses to close. Throughout this crisis, families have had to protect, comfort and care for their children, their elderly and other members. While the pandemic has greatly intensified family care responsibilities for families, unpaid care work has been a primary activity of families even in normal times. This paper estimates the future global need for caregiving, and the burden of that need that typically falls on families, especially women. It takes into account projected demographic shifts, health transitions, and economic changes in order to obtain an aggregate picture of the care need relative to the potential supply of caregiving in low-, middle- and high-income countries. This extensive margin of the future care burden, however, does not capture the weight of that burden unless the quantity and quality of care time per caregiver are taken into account. Adjusting for care time given per caregiver, the paper incorporates data from time-use surveys, illustrating this intensive margin of the care burden in three countries that have very different family and economic contexts—Ghana, Mongolia, and South Korea. Conclusions: Time-use surveys typically do not provide time data for paid care services, so the estimates depend only on the time intensity of family care. With this caveat, the paper estimates that the care need in 2030 would require the equivalent of one-fifth to two-fifths of the paid labor force, assuming 40 weekly workhours. Using the projected 2030 mean wage for care and social service workers to estimate the hypothetical wage bill for these unpaid caregivers if they were paid, we obtain a value equivalent to 16 to 32 percent of GDP in the three countries.

 

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Daughters' experiences of shared caregiving to a parent with dementia

Background: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. Aim: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. Materials & methods: Thirty‐four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6‐step process. Results: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. Discussion: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. Conclusions: Healthcare providers can utilise these findings to better support adult–child caregivers negotiating care with their siblings.

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Coping strategies mediate the association between family functioning and posttraumatic growth in family caregivers of people with dementia

Objectives: This study aimed to examine the mediating effect of coping strategies on the relationship between family functioning and posttraumatic growth in family caregivers of people with dementia (PwD). Methods: A total of 124 family caregivers of PwD from a memory clinic were investigated from July to October 2017. Family functioning, coping strategies, and posttraumatic growth of family caregivers of PwD were measured. Data were processed using descriptive statistics, correlation analysis, regression analysis, and structural equation modelling. Posttraumatic growth was observed in family caregivers of PwD. Results: The caregiver's gender, relationship with the patient, and difficulty balancing financial income and expenditures in the past month, as well as disease severity of PwD, are significant predictors of posttraumatic growth. There were significantly positive correlations among posttraumatic growth, family functioning and positive coping strategies (P<0.01). Positive coping strategies exert a complete mediating effect between family functioning and posttraumatic growth (β = 0.49, P < 0.05). Conclusions: A model of the posttraumatic growth of family caregivers of PwD can be established, and the relevant mechanisms can be explored. Healthcare providers should pay attention to the family functioning of caregivers and take effective measures to provide them with positive coping strategies to promote their posttraumatic growth.

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Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education

Background: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG. Objective: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group. Methods: A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos. Results: Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience. Conclusion: Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.

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Challenges Facing Family Caregivers of Children With Disabilities During COVID-19 Pandemic in Palestine

Background: COVID-19 has caused great changes in all aspects of life which affected all people especially vulnerable groups such as children with disabilities (CWD) and their families. Objective: This study aimed to examine the challenges facing caregivers of CWD during the pandemic, and to explore these challenges from various physical, social, psychological, and financial aspects. Methods: A cross-sectional design was conducted in Palestine, a total of 130 caregivers of CWD completed a survey consisting of demographic and clinical characteristics questionnaire and the short version of the burden scale for family caregivers (BSFC-s) between March and May 2021. Results: Most of the caregivers were mothers (76.9%), the mean age of the children was (6.09 ± 3.43 years). The majority (88.5%) of the caregivers felt physically exhausted, about (75.4%) had decreased living standards, and (86.2%) indicated that caregiving is taking their strength. A high burden score was recorded, the mean BSFC-s score was 20.17 ± 5.57. Significant differences in BSFC-s scores were recorded based on the type of disability, and child’s ability to take care of oneself, P <.05. The total scores of the BSFC-s were positively correlated with the physical, social, psychological, and financial challenges facing the caregivers (P <.001). Conclusions: COVID-19 has caused increased burdens on the caregivers of CWD and a negative impact on the child’s mobility accompanying a lack of access to health and rehabilitation services. Vital factors are to be considered in developing strategic health and rehabilitative plans for promoting better care for caregivers and their CWD during lockdown restrictions time. 

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The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Conclusions: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

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Caring for those who care for dependent older adults: for a necessary and urgent policy

The situation of caregivers and family caregivers of dependent older adults is presented and discussed, highlighting their dedication, problems, and possible recommendations to value them. The task of caring is known to be eminently feminine, invisible, unpaid, but affects society as a whole. Policies of some European countries, Canada, and the United States in favor of male and female caregivers are described. However, most existing support models have gaps. The laws and regulations enacted have been poorly comprehensive, inorganic, and the family remains responsible for long-lived relatives who have lost their autonomy. In many countries, besides other measures, the tendency is to integrate the family care as the first PHC level, universalizing support to caregivers. One must not be forgotten that the tendency to keep dependent older adults at home is acquiescence to their desire, but it also hides the delegation of responsibility from the State to families through dehospitalization and deinstitutionalization policies. In Brazil, the issue has not yet entered the public policy radar, although it is urgent because of the accelerated increase of the elderly population, particularly those aged 80 and over. 

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Caring for People With Dementia Under COVID-19 Restrictions: A Pilot Study on Family Caregivers

Introduction: The present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated. Materials and methods: Thirty-five caregivers of RwD attending formal healthcare services before the lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients’ BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience. Results: No clear changes emerged in either the BPSD of the RwD or the caregivers’ distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers’ resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience. Discussion: Our findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic.

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Caregivers of Persons with Diverse Health Conditions: Demographics and Burden of Care

Background: Although caregiver identity theory asserts there is no single generic caregiver identity, comparisons on demographic characteristics and burden of care have not been made among caregivers of persons with various health conditions. Methods: Using social media to access study participants, this cross-sectional study of 234 family caregivers of persons with various health conditions examined their demographic characteristics (age, gender, and race/ethnicity) and burden of care (daily care hours and caregiving years) using online data collection. Results: Nine groups of caregivers were formed by the care recipient’s health condition. Caregiver groups were similar in gender (95% women) and race/ethnicity (88% white), and differed on age (F=4.74; p<.001) daily care hours, and caregiving years (F’s=2.76 and 2.84; p<.01). Conclusions: The findings suggest that caution is needed when recruiting caregivers through social media as the sample may not represent all caregivers. However, differences by care recipient condition on age and burden of care warrant further consideration.

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Caregiver Social Status and Health-Related Quality of Life in Neurologically Impaired Children on Home Enteral Nutrition

Background: We aimed to investigate the association between caregiver social status and health-related quality of life (HRQoL) in children with neurological impairment (NI) on home enteral nutrition (HEN). Methods: This was an ancillary study of a multicenter, cross-sectional study which explored HRQoL in 75 NI children on HEN. All the caregivers from the original cohort were contacted, and data on education level, occupation and marital status were collected. The association between social status and HRQoL was investigated using a multiple Poisson Generalized Linear Model. In total, 93 caregivers were included, responsible for the care of 71 children. The caregivers of four children of the original cohort did not answer the questionnaire. Results: Mothers with high-level education presented lower HRQoL in comparison to mothers with low-level (β: −5.97; 95% CI −11.51, −0.10; p = 0.027) or medium-level education (β: 4.85; 95% CI −9.87, 0.53; p = 0.044). The analysis of the subgroup of cases in which the main caregiver was represented by both parents gave similar findings, with education level of the father being negatively correlated with HRQoL. Conclusions: Our data showed that higher education level may negatively affect quality of life of caregivers of NI children. This could be helpful in identifying at-risk families and addressing supportive efforts.

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Caregiver burden, psychological distress and hopelessness among carers of thalassemia patients

Objective: To assess the relationship between care giver burden, hopelessness and Psychological distress. To explore the impact of care giver burden on Psychological distress and mediating role of hopelessness among carers of Thalassemia patients. Study Design: Descriptive cross-sectional study. Place and Duration of Study: At the Thalassemia center of The Children’s Hospital &amp; the Institute of Child Health Multan, Pakistan, in seven month from 17th November 2018 to 26th March 2019. Material and Methods: Two hundred and forty (240, 48.3% males and 51.6% female) carers of Thalassemia patients were assessed on Burden Scale for Family Caregivers (BSFC), Kessler Psychological Distress Scale (K10) and Beck Hopelessness Scale (BHS). Results: Findings showed that caregiver burden was positively correlated with psychological distress (p&lt;0.01) and hopelessness (p&lt;0.01). Results also revealed that caregiver burden significantly positively predicted hopelessness (p&lt;0.00) and hopelessness mediated the relationship between care giver burden and psychological distress (p&lt;0.00). Outcomes also illustrated that there were differences on care giver burden (p&lt;0.01), Psychological distress (p&lt;0.00) and hopelessness (p&lt;0.00) among carers of patients with thalassemia disorders on the ground of carer’s gender. Conclusion: Care giver burden, Psychological distress and Hopelessness are interlinked phenomenon, while male have more hopelessness and female have more care giver burden and psychological distress. 

Caregiver Burden with Alzheimer’s and Dementia Patients: A Systematic Literature Review

Background: As the aging population increases, the rates of degenerative diseases associated with advanced age, such as Alzheimer’s disease and dementia, also rise. Thus, the caregiver population grows in response, increasing the rates of caregiver burden. Caregivers of older adults are usually family members, and providing care to older adults with Alzheimer’s disease and dementia can be very physically and emotionally depleting for the caregivers, leading to negative consequences on the physical and mental health of the caregivers; subsequently leading to caregiver burden. Methods: This systematic literature review examined articles within the APA PsychInfo database related to informal caregivers of Alzheimer’s and dementia patients, caregiver burden, risk factors associated with caregiver burden such as gender, kinship, cohabitation, and marriage status, and coping strategies, interventions, and resources that aid in mitigation of caregiver burden for these types of caregivers. Findings: This search yielded 26 studies that were included based on having met the eligibility criteria. Findings suggest that there are several risk factors associated with increased rates of caregiver burden in this caregiver population. Results addressed the benefits of coping strategies, interventions, and accessible resources on informal caregivers’ QOL and impacts on caregiver burden. Implications regarding ideal and accessible coping strategies and appropriate interventions for informal caregivers of individuals diagnosed with Alzheimer’s disease and dementia was addressed. 

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Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.

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Caregiver burden and associated factors amongst carers of women with advanced breast cancer attending a radiation oncology clinic in Nigeria

Background: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria. Aim: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer. Setting: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria. Methods: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained. Results: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78). Conclusion: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role. 

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Care in times of COVID-19: the impact of the pandemic on informal caregiving in Austria

Background: Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? Methods: We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Results: Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future. 

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The capacity of informal caregivers in the rehabilitation of older people after a stroke

Objective: To characterize informal caregivers of dependent older people after a stroke related to aspects of care, and to describe the activities performed and the difficulties faced by these caregivers. Methods: Cross-sectional, descriptive study, held in southern Brazil with 190 informal caregivers of older adults after stroke. The sociodemographic data instrument and the Capacity Scale for Informal Caregivers of Elderly Stroke Patients (ECCIID-AVC), adapted and validated for use in Brazil by Dal Pizzol et al., were used. Results: Most caregivers were women (82.6%) or children (56.3%), had average schooling of 9.6 years, and the majority (68.3%) provided care for people with moderate to severe disability. The main activities carried out included: providing materials and/or support for eating (99%), dressing (98.4%), and administering medications (96.2%). Caregivers had the most difficulty with transferring and positioning activities. Conclusion: Most caregivers have adequate capacity to provide essential care to the dependent older adult after a stroke. However, a significant portion had difficulty in the activities of transferring and positioning the older person due to the lack of guidance regarding the posture to carry out these activities. The assessment of nurses regarding the activities performed and the difficulties faced by caregivers is an important strategy to identify problems and effectively attend to the needs of these individuals at all levels of health care.

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Burden and social support in informal caregivers of people undergoing kidney dialysis: a mixed study

Objectives: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. Methods: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. Results: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". Conclusions: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.

 

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Being the Family Caregiver of a Patient With Dementia During the Coronavirus Disease 2019 Lockdown

Background: Family caregivers of patients with dementia are at high risk of stress and burden and quarantine due to COVID-19 pandemic may have increased the risk of psychological disturbances in this population. The current study was carried out during the national lockdown declared in March 2020 by the Italian government as a containment measure of the first wave of coronavirus pandemic, and is the first nation-wide survey on impact of COVID-19 lockdown on mental health of dementia informal caregivers. Methods: Eighty-seven Dementia Centers evenly distributed on the Italian territory enrolled 4710 caregiver-patient pairs. Caregivers were delivered a telephone interview assessing classical symptoms of caregiver stress and concern for the consequences of COVID-19 infection on patient’s health. We calculated prevalence of symptoms and regressed them on various potential stress risk factors: caregivers' socio-demographic characteristics and lifestyle, patients' clinical features, and lockdown-related elements, like discontinuity in medical care. Results: Approximately 90% of caregivers reported at least one symptom of stress, and nearly 30% reported four or more symptoms. The most prevalent symptoms were Concern for consequences of COVID-19 on patient's health (75%) and Anxiety (46%). The main risk factors for stress were identified as a conflicting relationship with the patient and discontinuity in assistance, but caregiver's female sex, younger age, lower education and cohabitation with the patient also had an impact. Availability of help from institutions or private individuals showed a protective effect against Sense of Abandonment, but a detrimental effect on concern about the risk for the patient to contract COVID-19. The only protective factor was mild dementia severity, which was associated with a lower risk of feeling isolated and abandoned; type of dementia, on the other hand, did not affect stress risk. Conclusion: Our results demonstrate the large prevalence of stress in family caregivers of patients with dementia during COVID-19 pandemic, and has identified both caregivers and situations at higher risk of stress, that should be taken into account in the planning of interventions in support of quarantined families and patients.

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A Balancing Act: Working and Caring for a Child with Cancer

Background: Parenting a child with cancer creates numerous additional care demands that may lead to increased difficulties in balancing work and family responsibilities. Still, there is limited knowledge of how parents cope with both parenthood and paid work after a child's cancer diagnosis. The aim of the study was to explore mothers' and fathers' experiences of balancing the dual roles of work and parenthood following a child's cancer diagnosis. Method: Nine focus groups with in total 32 parents of children with cancer in Sweden were conducted. The data was analysed using qualitative content analysis. Results: Three categories were identified: Shifts in the importance of the parent role and the work role, Influence of context and conditions on the balance of roles, and Long-term unbalance of roles. Parents expressed an increased appreciation of time spent with family, but also emphasized the importance of work to counterbalance the sometimes overwhelming parenting demands. The pre-existing financial situation, work situation, and employer behaviour were important factors influencing the parents' ability to balance work and family. Traditional gender roles influenced how couples divided responsibilities and reflected on their experiences. Mothers and fathers were also met with different expectations, which highlights the need for the healthcare to consider their communication with caregivers. Importantly, the parents expressed how the child's illness affected their ability to balance work and family for a long time, while the understanding and support from others had steadily declined. Conclusions: Enabling parents to care for their ill child without sacrificing their own career is of utmost importance, and future research should focus on identifying which factors facilitate for parents to achieve a sustainable work-life balance. 

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Baby Boomers Who Provide Informal Care for People Living with Dementia in the Community

Background: One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). Methods: We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Results: Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Conclusions: Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being.

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Assisted Living Transitions: Experiences of Family Members of Older African American Women

Background: Long-term care, also known as aging services, is evolving to meet the needs of the aging population in the United States, which is increasingly ethnically and racially diverse. The objective of this qualitative multiple case study was to understand how immediate family members experienced the transition of older African American women as they moved into assisted living facilities. Design: Black feminist theory provided a theoretical framework. Narrative interview data were collected from four adult children family caregivers who facilitated the move. Results: Three themes emerged from the content analysis: (a) Transition is not planned in advance and does not happen until a critical event or incident occurs that changes the older adult’s physical, social, or emotional status; (b) The transition was more difficult than had been thought for the older women and their families; and (c) Older adults expect that family members stay connected and involved after the transition, and family members may have similar expectations. Human services professionals may use the results to provide better-informed programs and services for older African American women and their family member caregivers. Conclusion: Social change implications suggest developing a transition model to improve assessment and evaluation processes, promote cultural competence initiatives, and promote a person-centered approach to the transition process in order to begin to identify a framework that might be useful for human services practitioners.

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Assessment of the Psychological Burden among Family Caregivers of People Living with Alzheimer's Disease Using the Zarit Burden Interview

Background: In China, family caregivers play a major role in caring for people living with Alzheimer's disease (PLWAD), but little is known about the burden this creates. Objective: This study aimed to investigate the burden among family caregivers of PLWAD and the factors influenced it. Methods: Family caregivers of PLWAD were recruited from a hospital in China from January 2018 to July 2018. All data were collected online using the Chinese version of the Zarit Burden Interview (ZBI), and the participants' sociodemographic and caregiving details were obtained. T-tests and Kruskal-Wallis H (K) tests were used to compare ZBI scores between groups. Factors related to the caregiver psychological burden were analyzed using multiple linear regression analysis. Results: A total of 300 participants were assessed, of which 213 (71.00%) were female. More than half of the caregivers were the patient's daughter (51.0%, n = 153). The average ZBI score of the caregivers was 43.05 (13.42). The level of burden was influenced by age, the relationship of the caregiver to the patient, the severity of AD, the caregiver's retirement status, the income level of the caregiver, and the caring time. Regression analysis showed that retired caregivers were more likely to have higher levels of burden and that burden increased with AD severity. Conclusion: Most family caregivers of PLWAD have a considerable caregiver psychological burden. The findings increase the understanding of factors that influence family caregiver burden, and pave the way for potential interventions, such as social support and caregiver empowerment, to reduce their burden. 

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Assessment of the burden among family caregivers of patients with Alzheimer’s disease

Introduction: The objective of this study was to examine the caregiving burden and identify the predictors of burden among family caregivers of patients with Alzheimer’s disease. Materials and Method: The sample consisted of 154 family caregivers of community-dwelling Alzheimer patients. Zarit Burden Inventory was used to measure caregiver burden. Depending on the total score, the level of burden is classified as absent to little burden (0 to ≤20), mild to moderate burden (21 to 40), moderate to severe burden (41 to 60), and very severe burden (≥61). The cutoff point for the clinical depression was taken as 24. Results: The caregivers were mainly women (78.6%), the patient’s daughters (56.5%), living with the patient (79.1%), and they were not receiving any support from other family members for patient care (54.5%). The average time spent on caregiving tasks was 4.8 hours a day. The mean Zarit Burden Inventory score was 22.4. The burden scores of 39.6% of the caregivers were significant for clinical depression. The most pronounced predictors of higher burden were the absence of someone supporting the care, social isolation, the length of time spent daily for caregiving, and the patient’s age, comorbidities, and functional impairment in daily activities. Receiving psychological counselling was a protective factor against the development of burden. Conclusion: The results suggest that burden is high among the caregivers of patients with Alzheimer’s disease. Strategies should be developed to support family members in countries such as Turkey, where the care is undertaken by informal caregivers. 

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Are the gender gaps in informal caregiving intensity and burden closing due to the COVID-19 pandemic? Evidence from the Netherlands

Background: This research note presents the findings of changes in the gender gap in informal care provision and caregiver burden during the Spring 2020 COVID-19 lockdown in the Netherlands. Government measures in response to the pandemic strongly restricted informal caregivers in providing help and care to persons with health-related needs. At the same time, formal care was scaled back and informal caregivers' urge to help their loved ones was likely higher than before the pandemic. Generally, women pick up a larger share of informal care and experience more caregiver burden. Method: We assessed whether the COVID-19 pandemic affected the gender gaps in informal caregiving by analyzing unique data on Dutch informal caregivers (N = 1672 caregiving situations in 1196 respondents). Results: showed that women, compared to men, were more likely to have stopped and reduced caregiving, but also to have cared more during the pandemic. Moreover, based on longitudinally comparing levels during and before the lockdown, we found that the gender gap in caregiver burden narrowed down, especially because burden decreased for women. Conclusions: This means that the caregiver burden was more equally distributed among women and men during the Spring 2020 COVID-19 lockdown than before. 

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Are mothers and daughters most important? How gender, childhood family dissolution and parents’ current living arrangements affect the personal care of parents

Background: This study examines adult children’s propensity to provide personal care to older mothers and fathers. The theory of intergenerational solidarity facilitates the understanding of commitment and support between adult children and parents. Solidarity may depend on childhood events as well as the current situation, and we therefore focus on whether there was a parental breakup in childhood and the parent’s current living arrangements. We also focus on the gendered aspects of the relations as earlier research has found stronger matrilinear relationships. Method: The propensity for personal care was analyzed with regression analysis using the 2012 Swedish Generations and Gender Survey. Results: The results show that daughters are more likely than sons to provide personal care to both parents. Parental breakup in childhood does not change the propensity of personal care to any parent. The probability of receiving care is higher for lone mothers than for mothers living with the father, but not for repartnered mothers. Adult children’s care provision does not differ for lone fathers and fathers living with the mother, but children are more likely to provide care to lone fathers than to repartnered fathers. We interpret this to indicate that repartnering weakens ties to fathers but not mothers. The results indicate that the child’s gender and the parent’s living arrangements operate differently with regard to care for mothers and fathers. The most common pattern is care provided from daughters to mothers. For example, daughters of lone mothers are more likely to provide care than sons in the same situation. Conclusion: We conclude that intergenerational solidarity is not affected by parental breakup in childhood but that present living arrangements affect such solidarity in gendered ways. 

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Aging and dependence in Brazil: sociodemographic and care characteristics of older adults and caregivers

Aims: This paper aims to identify sociodemographic and care characteristics of dependent older adults, formal and family caregivers in municipalities from different Brazilian regions. Methods: A cross-sectional study was carried out with a sample of 175 people, of whom 64 were older adults, 27 formal caregivers, and 84 family caregivers. Semi-structured interviews were conducted with specific questions for each group on the theme of care and dependence. Most older adults were female, aged 80 years or older, with low education and have been dependent for four years or more. Findings: Older adults reported feelings of loneliness, pointed out difficulties in medical care, and 29% had only access to Primary Health Care actions. Inequalities, burden, illnesses, and social problems were found among family caregivers. Black females with no formal employment, little or no training for the function, and low remuneration predominated among formal caregivers, and care was associated with domestic chores. Conclusion: We can conclude that gender and race inequalities persist in the care of dependent older adults, and we observed that the rigid social roles assigned to men and women in Brazil persist in the family and work dynamics in caring for the dependent older adults.  

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Age-dependency in mortality of family caregivers: a nationwide register-based study

Background: Evidence on family caregivers' health is conflicting. Aim: To investigate all-cause and cause-specific mortality in Finnish family caregivers providing high-intensity care and to assess whether age modifies the association between family caregiver status and mortality using data from multiple national registers. Methods: The data include all individuals, who received family caregiver's allowance in Finland in 2012 (n = 42,256, mean age 67 years, 71% women) and a control population matched for age, sex, and municipality of residence (n = 83,618). Information on dates and causes of death between 2012 and 2017 were obtained from the Finnish Causes of Death Register. Results: Family caregivers had lower all-cause mortality than the controls over the follow-up (8.1 vs. 11.6%) both among women (socioeconomic status adjusted hazard ratio [HR]: 0.64, 95% CI 0.61–0.68) and men (adjusted HR: 0.73, 95% CI 0.70–0.77). When modelling all-cause mortality as a function of age, younger caregivers had only slightly lower or equal mortality to their controls, but older caregivers had markedly lower mortality than their controls, up to more than 10% lower. Caregivers had a lower mortality rate for all the causes of death studied, namely cardiovascular, cancer, neurological, external, respiratory, gastrointestinal and dementia. The lowest risk was for dementia (subhazard ratio = 0.29, 95% CI 0.25–0.34). Conclusions: Older family caregivers had lower mortality than the age-matched general population while mortality did not differ according to caregiver status in young adulthood. This age-dependent advantage in mortality is likely to reflect the selection of healthier individuals into the family caregiver role.

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Accentuate the Positive: The Association Between Informal and Formal Supports and Caregiving Gains

Background: To promote resilience among caregivers for persons living with dementia (PLWDs), we examine how formal and informal supports are linked to caregiving gains, and whether gender moderates the association between supports and gains. Method: Using the National Health and Aging Trends Study and associated National Study of Caregiving, sources of informal (emotional support, practical support, and help with the PLWD) and formal support (respite care, training program, support group) are considered as predictors of caregiving gains, with gender as a moderator of these associations. The sample included 707 caregivers for 502 PLWDs. Results: Greater caregiving gains were significantly associated with emotional support from friends/family (β = 0.14, SE = 0.09, p =.03). Furthermore, attending a caregiver training program was only associated with increased caregiving gains among men (β = 0.11, SE = 0.08, p =.02). Conclusion: Emotional support from family/friends appears particularly consequential for caregiving gains, and male caregivers may benefit most from programs that emphasize skill building.

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Rethinking Care Ethics: On the Promise and Potential of an Intersectional Analysis

This article contributes to current debates and discussions in critical social theory about diversity, inclusion/exclusion, power, and social justice by exploring intersectionality as an important theoretical resource to further develop and advance care ethics. Using intersectionality as a critical reference point, the investigation highlights two key shortcomings of care ethics which stem from this ethics’ prioritization of gender and gendered power relations: inadequate conceptualizations of diversity and power. The article draws on concrete examples related to migrant domestic work to illustrate how an intersectionality lens can advance new theoretical insights for understanding caring practices (or lack of them), and generate new methodological and practical strategies for confronting and transforming the deeply entrenched interlocking power inequities that undermine the realization of care in an increasingly complex context of national and international policy and politics.

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Women's Caregiving Experience of Older Persons Living With Alzheimer Disease and Related Dementias and Multiple Chronic Conditions: Using Wuest's Theory

Introduction Care of persons living with chronic conditions rests heavily on women within the context of the family. Research demonstrates that women experience more caregiving strain compared to men, yet less is known about the differences in experiences between women carers: namely, wives and daughters. Objective The purpose of this study was to examine and compare the experiences of wife and daughter carers of older adults living with Alzheimer disease and related dementias, plus at least two other chronic conditions. Methods Using qualitative description with Wuest's feminist caring theory of precarious ordering as an analytic framework, interview transcripts of women carer participants who were from the control group of a larger multi-site mixed methods study evaluating the web-based intervention My Tools 4 Care were analyzed. Findings Both wives and daughters experienced daily struggles, altered prospects, and ambivalent feelings around their caring role. Negotiating the role of professional carer was an important part of balancing caring demands and anticipating the future, and women took an active role in trying to harness caring resources. Findings indicated wives and daughters were generally similar in how they described their caregiving, although daughters reported more shared caring and decision-making, and needed to balance paid employment with caregiving. Conclusion Wives and daughters face similar challenges caring for persons with a dementia and multiple chronic conditions, and actively engage in strategies to manage caring demands. The findings illuminate the importance of accessible, appropriate support from professional carers/health care providers, and suggest that assistance navigating such supports would benefit women carers.

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Psychosocial consequences of transitioning into informal caregiving in male and female caregivers: Findings from a population-based panel study

The purpose of this paper was to investigate the psychosocial consequences of transitioning into informal caregiving, and to investigate this association in male and female caregivers with a longitudinal design. Longitudinal panel data from the population-based German Ageing Survey (wave 2014, 2017) were used. The complete sample included up to 13,333 observations (N = 8658) pooled over waves 2014 and 2017. In total, 2.56% of the complete sample transitioned into informal caregiving (N = 547). Individuals who transitioned into informal caregiving, were on average aged 66 years and 54.48% of these participants were female. Wellestablished scales were used to assess the psychosocial outcomes of network size, loneliness and social isolation, depressive symptoms, as well as positive and negative affect. Transitioning into informal caregiving was used as the main predictor. Sociodemographic characteristics and physical health were controlled for. Results of fixed effects regression analyses showed that transitioning into informal caregiving was significantly associated with increased network size (b = 0.35, p < 0.05), increased depressive symptoms (b = 0.63, p < 0.05) and increased negative affect (b = 0.08, p < 0.001). When stratifying the sample by gender, the results showed increased network size (b = 0.43, p < 0.05), depressive symptoms (b = 0.93, p < 0.01), and loneliness (b = 0.06, p < 0.05) among male caregivers, while female caregivers reported increased negative affect (b = 0.10, p < 0.001). The study's results extend previous research by showing that transitioning into informal caregiving is mainly associated with negative psychological outcomes. Additional analyses suggest that female and male caregivers experience different psychosocial consequences. Thus, gender should be taken into consideration when investigating informal care and its outcomes, and support should be tailored specifically to the needs of female and male caregivers.

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Open communication between caregivers' and terminally ill cancer patients about illness and death: The role of gender - A correlational study

Purpose: Caregivers face severe difficulties in communicating openly with their terminally ill relatives about illness and death. Some studies suggest that females are more likely than males to hold such conversations. We compared level of open communication between male and female spouse-caregivers, and the contribution of personal and situational characteristics to the explanation of open communication level within each gender group. Methods: The study design was correlational. We interviewed 77 spousal-primary caregivers of terminal cancer patients. Participants were recruited over a 10-month period from the home hospice unit of the central region of Israel's largest Health Maintenance Organization. The questionnaire included measures of open communication, along with caregiver's personal and situational characteristics. Results: Female spouses reported higher levels of open communication about illness and death with their loved ones, compared to male spouses. Among males, duration of care and self-efficacy emerged as significant contributors to open communication level. Among females, self-efficacy and ethnic origin were found to be significant explanatory variables. Conclusions: This study demonstrates the important role gender plays in level of open communication between spousal caregivers and terminal cancer patients, concerning their illness and approaching death. Self-efficacy, ethnic origin and duration of care are also significant factors explaining open communication of both male and female caregivers. These factors should be considered by nurses and other healthcare professionals when developing intervention programs to increase the level of open communication between family caregivers and their terminally ill relatives.

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Life course partnership and employment trajectories and parental caregiving at age 55: prospective findings from a British Birth Cohort Study

We investigate whether work and partnership life courses between ages 16 and 54 predict the likelihood of providing care to a parent or parent-in-law at age 55, and whether these associations differ by gender or early life socio-economic circumstances. In the National Child Development Study (NCDS), fully adjusted models showed that strong life course ties to marriage were linked with a greater likelihood to provide parental care for both men and women. The longer women spent in part-time employment the more likely they were to provide care to a parent, while stronger life course ties to full-time employment were linked with a greater likelihood of providing care to a parent for men. The importance of part-time employment among women and long-term marriage for both men and women for uptake of parental care may imply a reduced pool of potential informal caregivers among subsequent generations for whom women have much stronger life course labour-market ties and life course partnerships have become more diverse.

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Informal Caregiving, Poor Mental Health, and Subjective Cognitive Decline: Results From a Population-Based Sample

The current study examined potential gender differences in the associations between informal caregiving, poor mental health, and subjective cognitive decline (SCD). Data were obtained from the U.S. Behavioral Risk Factor Surveillance System (N = 16,042; 9,410 women, 6,632 men). Multivariate linear and logistic regression models were used to obtain adjusted beta s and odds ratios (ORs), and 95% confidence intervals (CIs) depicting the association between informal caregiving, poor mental health, and SCD overall and by gender. Caregiving was positively associated with poor mental health among men (adjusted beta = 2.60; 95% CI [2.59, 2.62]) and women (adjusted beta = 0.40; 95% CI [0.23, 0.57]). Poor mental health was positively associated with SCD among men (adjusted OR = 1.05; 95% CI [1.02, 1.08]) and women (adjusted OR = 1.07; 95% CI [1.04, 1.10]). Poor mental health may be associated with SCD, irrespective of gender, and additional studies are needed that will identify key variables influencing SCD among male and female informal caregivers.

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Health-related Quality of Life of Cancer Caregivers in Kiang Valley, Malaysia

Cancer is a chronic and life-threatening disease that causes complications to the patients diagnosed with it as well as to those who were taking care of them; i.e. the caregivers who normally are family members of the patient. Cancer caregivers experience burden and stress during the period of caregiving which contributes to their quality of life (QOL). However, there is scarce literature on the QOL of gastrointestinal cancer caregivers in the local population. The purpose of this study is, therefore, to determine the health-related quality of life (HRQOL) of male and female caregivers and identify contributing factors to their caregiving. This cross-sectional study was conducted in three major tertiary government hospitals in the Klang Valley. Systematic random sampling was used to recruit the main caregivers of gastrointestinal cancer patients. The inclusion criteria for the caregivers were respondents aged 18 and above, Malaysian, able to understand and read Bahasa Melayu, free from any diagnosed cancer. A total of 323 respondents completed the validated questionnaire on HRQOL from October 2017 to April 2018. Data were analysed using independent t-test and chi-square tests. In the sample population, the majority of patients were females compared to males (68.1% vs 31.9%). The mean HRQOL score for females was 77.66 (SD=21.36) while the mean HRQOL for males was 85.52 (SD=21.16). Data shows that males had a better quality of life in comparison to females. The HRQOL scores were significantly different according to gender, t=3.09, mean difference=7.85(SD=2.54), 95%Cl 2.85,12.85. p value=0.002. Factors that were significantly different between males and females were: relationship between the caregiver and the patient (p-value=0.001); education level (p value=0.019); employment status (p value=<0.001), marital status (p value=0.048), household income (p value=0.021) and presence of disease (p value=0.015). These findings indicate that gender affects caregiving. This implies that health care providers should acknowledge the role of gender in caregiving. This is also a significant factor to guide policymakers in improving the existing healthcare system for caregivers.

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Gender differences in the manifestation of burden among family caregivers of people with mental disorders

This is a cross-sectional study conducted with 537 family caregivers of people with mental disorders. The objective was to quantify the degree of burden experienced by men and women, and identify the most affected dimensions of their lives and the factors associated with burden manifestation by gender. The Zarit Burden Interview (ZBI) scale was used to assess burden. Mean burden was 22.8 points (SD = 6.3) for men and 27.8 points (SD = 17.8) for women. The most affected dimensions among the two groups were the same; however, among the 22 items on the scale, 11 presented significantly higher means among women. The factors associated with the manifestation of burden in both groups were as follows: low income; use of psychotropic drugs; greater degree of dependence of the service user; not receiving family support; and dissatisfaction with family relationships. For men, manifestation of burden was also associated with age. For women, there were further associations of the outcome with the presence of health problems, not having someone to share care with, and caring for the assisted person for >10 years. Our findings suggest that the degree of burden of family members caring for those with mental disorders is associated with gender, and this should be considered by services responsible for planning care shared by professionals and relatives. Guidelines for Strengthening the Reporting of Observational Studies in Epidemiology (STROBE Statement) were adhered to in this study. 

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Who Cares for Carers? Perspectives on Covid-19 Pressures and Lack of Support

Embracing CarersTM created the Carer Well-Being Index to determine the current and residual impacts of COVID-19 on unpaid carers, including its impact on their economic, physical and psychological well-being.

While carers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments often overlooked by society. They must now navigate fast-changing care delivery models, learn new telehealth and technology, provide emotional support despite their own emotional needs, and handle increased responsibilities at home—all at once.

Amid these rising responsibilities, many carers sacrifice their own health and well-being for the sake of people they love. They deal with emotional isolation. Financial strife hits hard as unemployment spikes and salaries are imperiled. Many lack the time to care for their own physical and emotional health. There are even more nuanced challenges when looking at women carers, younger, middle-aged and older carers, who encounter inequities.

In taking a hard look at how the pandemic has affected the globe, carers have faced unprecedented challenges – they are undercounted, unheard and struggling.

Now more than ever, governments, public entities, the private sector and all citizens have roles to play in addressing that problem. Carers should not have to face these hardships and inequities alone. They’re sacrificing for us, one by one. As a society, we can help them, together.

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Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers

Objective: We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD). Methods: Participants were recruited through an agreement with the Rush Alzheimer's Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants' perceptions of family caregiving. Direct content analysis was performed. Results: Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future. Conclusions: The influence of gender roles seemed to play a role in caregivers' perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving. 

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Relationships between informal caregiving, health and work in the Health and Employment After Fifty study, England

Background To investigate the prevalence of caregiving and its relationship with work, health and socio-economic circumstances in the Health and Employment After Fifty (HEAF) study. Methods The HEAF study comprises 8134 men and women aged 50–64 years recruited from 24 general practices. Socio-demographic, lifestyle and health characteristics and hours per week giving personal care were elicited by postal questionnaire. Objective clinical information about diagnoses/medications was retrieved from health records. Work-related and health risk factors for intense caring responsibilities (≥20 h/week vs. no hours) were explored using logistic regression with adjustment for age and social class. Results In all, 644 (17%) men and 1153 (26%) women reported caring responsibilities, of whom 93 and 199 were intense caregivers, who were more likely to be socio-economically disadvantaged; less likely to be working and, if combining caring with working (41 men and 90 women), more likely to be part-time/working shifts, than non-carers. Men caring ≥20 h/week were more likely to have COPD and to report musculoskeletal pain, poor/fair self-rated health, depression and sleep problems. Among working women, caring ≥20 h/week was associated with these same health outcomes and also with a doctor-diagnosed mental health problem or musculoskeletal pain in the previous year. Conclusions Caregiving is common and unequal in the HEAF cohort, with more high-intensity informal care provided by those with greater levels of socio-economic deprivation, which could affect their employment and health. Caregivers need support to lead long, healthy lives, rather than becoming care needers themselves. Employers and governments need to take caregiving into account and support it actively. 

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Prevalence of depression and burden among informal care-givers of people with dementia: a meta-analysis

This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so. 

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Leisure activity, gender and depressive symptoms among dementia caregivers: findings from the REACH II

Objectives: Providing care to individuals with dementia places burden on family caregivers, which may relate to depressive symptoms. Although leisure activities may serve as a coping resource to relieve caregiving stress, only a few studies exist on how leisure and depressive symptoms associate in dementia caregivers. Moreover, less is known about the role of gender in this relationship. Thus, this study examined the relationship among leisure activity, gender and depressive symptoms. Method: A cutoff score (≥10) on the short form of the Center for Epidemiological Studies Depression Scale was used to measure presence of depressive symptoms. Independent variables were frequency of engagement in and satisfaction with leisure activities. Results: Logistic regression analyses from 632 dementia caregivers in the Resources for Enhancing Alzheimer's Caregiver Health II Study showed that more frequent and higher satisfaction in leisure engagement were negatively related to having depressive symptoms. Moreover, the negative association between frequent leisure engagement and depressive symptoms was more pronounced among male caregivers. Conclusion: Providing respite care for dementia caregivers to engage in leisure can be a promising coping strategy for this population. Also, gender difference in leisure-depressive symptoms relationship suggests different support needed for male and female caregivers in addition to leisure. 

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Informal Caregiving and Network Turnover Among Older Adults

Objectives Personal network turnover, a combination of lost and added network contacts, is suggested to affect health as well as moderate access to social support and resources. This article tests whether the caregiving process is associated with network turnover in later life and whether the process is different for men and women. Methods Network turnover was assessed using two waves of personal network data from the National Social Life, Health, and Aging Project. Network contacts were uniquely identified in each wave making it possible to document contact loss and addition. Rates of change were modeled using Poisson regression. Results Respondents transitioning into caregiving lost and added network contacts at higher rates than non-caregivers. Conversely, respondents providing care during both waves and respondents transitioning out of the role saw no significant levels of network turnover. The analysis provided minimal evidence of gender differences. Discussion Findings suggest that the initial shift into the caregiving role is associated with notable personal network change. This is an important consideration given that long-term network instability may lead to poor health and limited access to social resources whereas adaptive network change tends to elicit more positive outcomes.

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The pains and reliefs of the transitions into and out of spousal caregiving. A cross-national comparison of the health consequences of caregiving by gender

Spousal caregiving offers a unique opportunity to investigate how gender shapes the influence of care responsibilities on health at older ages. However, empirical evidence supporting a causal link between the transitions into and out of caregiving and health is mixed. This study investigates the influence of spousal care transitions on the health of older men and women living in 17 European countries. We use five waves of the Survey of Health, Ageing and Retirement in Europe (SHARE) between the years 2004 and 2015 for a total of 43,435 individuals and 117,831 observations. Health is defined as a Frailty Index calculated from 40 items. Caregiving is defined as intensive help with personal care provided to spouses. Results from asymmetric fixed-effects linear regression models show that the transitions into caregiving have a detrimental effect on health. On the contrary, the transitions out of caregiving have in most cases no beneficial consequences on health. Most importantly, we found evidence supporting differential effects of caregiving transitions by gender and welfare arrangement: the transitions out of caregiving are associated with better health conditions only for Southern and Eastern European women. Our study highlights the asymmetric and gendered nature of care transitions and suggests that the impact of caregiving is somewhat permanent and has long lasting effects for the caregiver. Policies should account for this asymmetry when assessing the impact and consequences of caregiving.

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Gender Differences in the Associations Between Informal Caregiving and Wellbeing in Low- and Middle-Income Countries

Background: Health risks among informal caregivers have received inadequate attention in low and middle income countries. We examined cross-sectional data from 28611 adults 18 years and older in Ghana, India, Mexico, Russia and South Africa in the WHO Study on Global AGEing and Adult Health (SAGE) to examine gender differences in informal caregiving and wellbeing. Methods: Wellbeing was measured by self-rated health, difficulties with tasks, self-reported and diagnosed depression and anxiety. Informal caregiving was specific to adults and constructed as categorical variable with the respondent as: the main caregiver, non-caregiver but an adult in the household needs care, and no-one ill in the household; multinomial gender-stratified regression models assessed adjusted relative risk ratios (ARRRs). Results: Female caregivers were more likely to report moderate difficulties with life tasks [ARRR = 1.45 (95% CI: 1.01, 2.08)], feel mild-moderate anxiety [ARRR = 1.64 (95% CI: 1.22, 2.22)], and report feeling severely depressed [ARRR = 1.86 (95% CI: 1.28, 2.69)] compared to female non-caregivers. Even when women were not caregivers, having someone ill at home was associated with extreme difficulties with life tasks [ARRR = 2.32 (95% CI: 1.33, 4.04)]. Male caregivers, compared to no-one ill in the household, were more likely to report mild-moderate anxiety [ARRR = 1.8 (95% CI: 1.2, 3.7)] and severe-extreme anxiety [ARRR = 2.22 (95% CI: 1.07, 4.6)]. Conclusions: Caregiving for older adults results in greater health burdens, particularly mental health, for both women and men, though evidence shows that these burdens may be prominent and manifest in more diverse ways for women relative to men.

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Examining the support needs of older male spousal caregivers of people with a long‐term condition: A systematic review of the literature

Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design A systematic literature review. Methods Four electronic databases and grey literature were systematically searched. Results The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male‐specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.

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Emotional Burden and Perceived Social Support in Male Partners of Women with Cancer

Background: The aim of this study was to describe the correlations between the psychosocial burden on male caregivers and their perception of social support, as well as distress, anxiety, and depression among their partners in the first six months after a cancer diagnosis.; Methods: A cross-sectional, longitudinal and observational study was conducted on a group of 61 couples, with the use of Zarit Burden Interview (ZBI), Caregiver Burden Scale (CBS), Berlín Social Support Scales (BSSS), Hospital Anxiety and Depression Scale (HADS) and Distress Thermometer (DT). Statistical analysis was performed using Statistica v.13.; Results: A strong positive correlation between the ZBI and CBS, as well as between support-seeking and the emotional involvement of male partners, was documented. The negative correlation between the lack of instrumental support and a much greater burden on caregivers, in emotional, social, and family life was documented. The level of distress, anxiety, and depression, as well as family problems reported by female patients, were positively correlated with the male caregiver's burden. A demographic analysis showed significant relationships between the number of offspring and the negative health indicators of patients and their partners.; Implications: The obtained results encourage deeper reflection on the need to improve the availability of instrumental support for male caregivers and support for families with an oncological ill parent in caring for minor children, and to maintain the social activity of the caregiver.

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Effectiveness of a Physical Therapeutic Exercise Programme for Caregivers of Dependent Patients: A Pragmatic Randomised Controlled Trial from Spanish Primary Care

Female family caregivers (FFCs) constitute one of the basic supports of socio-health care for dependence in developed countries. The care provided by FFCs may impact their physical and mental health, negatively affecting their quality of life. In order to alleviate the consequences of providing care on FFCs, the Spanish Public Health System has developed the family caregiver care programme (FCCP) to be applied in primary care (PC) centres. The effectiveness of this programme is limited. To date, the addition of a physical therapeutic exercise (PTE) programme to FCCP has not been evaluated. A randomised multicentre clinical trial was carried out in two PC centres of the Spanish Public Health System. In total, 68 FFCs were recruited. The experimental group (EG) performed the usual FCCP (4 sessions, 6 h) added to a PTE programme (36 sessions in 12 weeks) whereas the control group performed the usual FCCP performed in PC. The experimental treatment improved quality of life (d = 1.17 in physical component summary), subjective burden (d = 2.38), anxiety (d = 1.52), depression (d = 1.37) and health-related physical condition (d = 2.44 in endurance). Differences between the groups ( p < 0.05) were clinically relevant in favour of the EG. The experimental treatment generates high levels of satisfaction.

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Caring for a spouse with advanced cancer: similarities and differences for male and female caregivers

Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health. 

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Burden on Caregivers of Adults with Multiple Chronic Conditions: Intersectionality of Age, Gender, Education level, Employment Status, and Impact on Social Life

Intersectionality analysis is the study of overlapping or intersecting social identities. Intersecting social identities may have an impact on the perception of burden by family caregivers of older persons with multiple chronic conditions (MCC). The purpose of this study was to explore the interaction of social factors on the burden of caring for older adults with MCC. A total of 194 caregivers of older adults with MCC were recruited from Alberta and Ontario. Survey data were collected at two time points, six months apart. Additive and multiplicative models were analysed using a generalised linear model to determine the level of caregiver burden. Medium-high social interference (impact on social life) was associated with higher burden when adjusted for age, gender, education, and employment status. The overall results of the five-way interaction suggest that males in general had lower burden scores than females. Irrespective of their education and employment status, females had generally higher burden scores. These results add to the current body of literature, suggesting areas for further research to fill knowledge gaps, and promoting ideas for evidence-guided public health interventions that focus on caregivers.

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"You have got to get off your backside; otherwise, you'll never get out": older male carers' experiences of loneliness and social isolation

Loneliness is framed as an enduring problem for carers of all ages, including older carers; however, there is little examination of older men's experiences of caring, loneliness and social isolation. Based on interviews with 25 men (aged 68-92 years), we discuss findings from a study of older male carers' experiences of loneliness in England. Within their accounts, loneliness is framed as a future, rather than present, problem as caring provides a time-limited buffer to loneliness while concurrently increasing social isolation. Further, the findings shed light on how male carers seek and benefit from carers' support groups while also maintaining autonomy.

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Sex and gender differences in technology needs and preferences among informal caregivers of persons with dementia

Background: Dementia is a major public health concern associated with significant caregiver demands and there are technologies available to assist with caregiving. However, there is a paucity of information on caregiver needs and preferences for these technologies, particularly from a sex and gender perspective. To address this gap in research, the objectives of this study are to examine (1) the knowledge of technology, (2) perceived usefulness of technology, (3) feature preferences when installing and using technology and (4) sex and gender influences on technology needs and preferences among family caregivers of persons with dementia (PWD) across North America. Methods: A secondary analysis was conducted on an existing cross-sectional survey with family caregivers of PWDs. Respondents were recruited through the Alzheimer Society of Canada, the Victorian Order of Nurses and Adult Day Programs and other Canadian health care provision institutes. Descriptive statistics, bivariate and multivariate analyses were used to describe the study sample, uncover differences between male and female caregivers and examine sex and gender influences on caregivers' technology needs and preferences. Results: A total of 381 eligible responses were received over a nine month data collection period. The majority of respondents did not know much about and never used any technologies to assist with caregiving. "Being easy to install", "easy to learn how to use" and "cost" were identified as the most important features when purchasing and setting up technology, while "reliability" was identified as the most important feature when using technology. Most respondents were willing to pay up to $500 to acquire individual technologies. Controlling for other socio-demographic variables, female respondents were more likely to have some or more knowledge about technology for caregiving while male respondents were more willing to pay higher amounts for these technologies compared to their female counterparts. Conclusions: As one of the first studies of its kind, our findings represent a step towards the incorporation of sex and gender considerations such as cost and reliability in technology design and promotion for caregivers. Future efforts are warranted to establish an in-depth understanding of sex and gender influences in relation to other social and environmental factors..

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Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review

Objectives Much is known about the demands of caregiving for persons with dementia (PWD) and its effects on family caregivers, however sex and gender aspects have received less attention. We synthesized the evidence on sex and gender distinctions in: (1) the caregiving burden and (2) the impact of caregiving on the physical and mental health of family caregivers of PWD. Design Systematic review. Data sources Medline, Embase, PsycINFO and Cumulative Index to Nursing and Allied Health Literature between January 2007 and October 2019 were searched. Eligibility criteria for selecting studies Included studies met the following criteria: (1) examine experiences and/or impacts of caregiving among family caregivers of individuals with any form of dementia; (2) report sex and/ or gender distribution of study population and/or report results stratified by sex and/or gender, and (3) include both male and female family caregivers. Data extraction and synthesis Two independent reviewers extracted the data and assessed risk of bias using the Critical Appraisal Skills Program checklist and National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies. Data were synthesized using a narrative synthesis approach. Results A total of 22 studies were included. Caregiving burden was measured using various methods. A majority of studies reported higher burden among females. All studies that did not report a sex and gender difference in caregiving burden accounted for confounders. Findings on sex and gender differences on physical and mental health conditions were inconsistent with most studies failing to account for confounders in their analyses. Conclusions Current evidence on sex and gender differences in caregiving burden, mental and physical health is limited. Findings suggest presence of sex and gender differences in caregiving burden. Given the variety of mental and physical health constructs that were examined, further research is required to substantiate the evidence. 

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Making Women's Unpaid Care Work Visible in India: Importance and Challenges

From the 1970s onward, the work performed by women within the household was critically examined, and a feminist critique of Marx emerged. The critique was first developed in the Campaign for Wages for Housework, founded in 1972, by Mariarosa Dalla Costa, Selma James and other renowned feminists. A major contribution of this critique was to highlight women's domestic labor in the process of capital accumulation, an issue which Marx did not address. This movement therefore sought to make visible women's work which was naturalized into nonexistence by capitalism. This problem of visibility exists all over the world, and women continue to bear the brunt of unpaid care work; they are perceived as "natural" caregivers and shunned for seeking paid care services. Although this phenomenon is common all over the world, this paper will deal with the importance of making women's unpaid work visible in India, as India is a developing country and more people tend to engage in unpaid subsistence work (production for self-consumption, unpaid work in family enterprises and care related work) in developing countries compared to wealthier countries. Portraying the importance and challenges of making women's unpaid care work visible in India can trigger economic and social development of the country. This paper aims to put forward the value of women's unpaid care work in India, and to pinpoint the obstacles that stand in the way of exposing their unpaid contributions. Considering the context of India this paper will examine the following questions: 1. Why is it important to make unpaid care work visible? 2. What are the challenges of making unpaid care work visible? The questions mentioned above will be answered by looking at suitable literature so that theoretical and methodological issues that have emerged can be brought forward and the problems and recommendations can be grasped to arrive at a conclusion.

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Women with high level of education, victims of the care of people with Alzheimer's

The aim of this job is to know the existing relationship between the task of caring patients with Alzheimer's disease, caregivers' gender and their level of academic studies. Descriptive study, 69 persons diagnosed with Alzheimer's disease and their respective familiar caregivers as subjects of the study. Age, gender, academic level, burden, depression, anxiety level, quality of life and social loneliness have been measured in caregivers. Age, gender, dependency level and neuropsychological state have been measured in patients. Data collection was done in 2016. Logistic regression analysis was performed. Caregivers with high levels of academic studies suffer more burden, being women in their majority. They are more likely to present social loneliness and higher levels of anxiety and a worse quality of life than men. The burden may be due to a greater number of responsibilities to respond to, and to the inability to combine it with the role of caregiver. We can conclude that women become victims of caring Alzheimer' patients. 

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Downshifting to care: The role of gender and care in reducing working hours and consumption

The relationship between working hours and sustainability has attracted research attention since at least the early 2000s, yet the role of care giving in this context is not well understood. Focusing on Australians between 40 and 60 years who have reduced their working hours and income, we explore the relationship between working hours, care giving and consumption. Data from the national census (ABS, 2006, 2011, 2016c) were analysed to contextualise patterns in paid working hours, income and carer roles for men and women aged between 40 and 60 years. Findings from a national survey on informal carers (ABS, 2016a) were also consulted. Taken together, the two sources of national data showed that two thirds of all informal carers are women, that the likelihood of assuming informal carer roles increases with age, and that men and women in carer roles work fewer paid hours per week and have a lower weekly income than non-carers of the same age. To gain qualitative insights into these patterns in Australian national data, and the likely implications of carer roles for household consumption, semi-structured interviews were conducted with ten households who subsequently recorded details of their consumption-related expenses over a seven-day period. The interview data showed the strong connection between carer roles, reduced income and paid working hours and its strongly gendered dimension. We argue that women primarily ‘downshift’ to undertake care rather than for sustainability motivations and that there is consequently a need to connect scholarship on gender and care with that on downshifting. The link between reducing paid working hours, care-giving and household consumption appeared to be less straight forward and varied between households. Our findings suggest that a complex relationship exists between environmental and social welfare concerns that has policy implications and warrants further exploration.

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Traditional Gender Roles and Effects of Dementia Caregiving within a South Asian Ethnic Group in England

Background: Despite the integral role that women play in the care of older adults in South Asian families, limited empirical data are available on the impact of migration from South Asia to England. The purpose of this research was to examine caring for a family member with dementia from a gender role perspective. Methods: Data were gathered in two phases: (1) focus groups and (2) semi-structured interviews. Focus groups were held with the general public, and semi-structured interviews were conducted with family carers. Data were audio-recorded and analysed using thematic analysis. The NVivo qualitative software was utilised to simplify the thematic analysis. Results: While traditionally family care for frail older adults has been mainly provided by women in South Asian families, the samples in this study revealed how women's attitudes towards caregiving are changing in British societies. Conclusion: There is a dearth of research about socioeconomic transformations in South Asian women's migration to Western countries that could contribute to deterring them from providing family care. More research is warranted to understand the ways in which migration shapes gender relations in South Asian families and its impact on care for the frail elderly. 

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Care in the Time of Coronavirus: Why care work needs to be at the centre of a post-COVID-19 feminist future

New research by Oxfam and partners reveals that while COVID-19 and the related containment efforts have caused increases in women’s – and men’s – unpaid care workloads, women are still doing the bulk of this work. Women living in poverty, single mothers and essential workers as well as those belonging to minority racial and ethnic groups are being pushed furthest to the margins. It shows the real consequences this has for the health, economic security and wellbeing of these women and their families. Women report feeling more anxious, depressed, overworked or ill because of their increased unpaid care work.  Care work is essential to the healthy functioning of our societies and economies and must be better supported through policy and social norms change.  Care work must be at the heart of a feminist COVID-19 recovery.

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Persons With a Migration Background Caring for a Family Member With Dementia: Challenges to Shared Care

Background and Objectives By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing. Research Design and Methods A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules. Findings Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks. Implications Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care–support can achieve this.

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The Moral Resilience of Young People Who Care

This paper draws on findings from a qualitative study of the social wellbeing of young people caring for a close family member. The research makes a novel contribution to the international literature by examining the moral resilience of young adult carers. Focus groups or individual, semi-structured interviews were undertaken with fifteen young people in South-East England during 2018?2019. The paper explores whether young people with a seriously ill or disabled family member define and conduct themselves in moral terms and how they respond to the moral challenges of a caring life. It was found that the participants saw moral value in their caring role and their actions reflected a desire to provide compassionate care. Previous research into young adult carers had indicated that the caring role stimulated their political consciousness, but this study suggests that the role also strengthens their moral consciousness. However, designating girls as carers in early life shifts the moral responsibility to females and compounds gender inequity in caring. Hence, there is a need to address social and gender inequalities in care. In addition, healthcare professionals should recognise when statutory input is necessary to facilitate young people's broader lifeplans.

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Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review

Background: While people with intellectual disability (ID) face disparities relating to sexual and reproductive health (SRH) services, little is known about the role of family caregivers who assist women and girls with ID access SRH services. This scoping review examined the findings of studies to elucidate the role of family caregivers with regard to SRH for women and girls with ID.; Method: We used Arksey and O'Malley's six-stage scoping framework, with Levac, Colquhoun and O'Brien's revisions, to evaluate identified sources. We searched three electronic databases, six ID journals and reference lists in full-text articles. Inclusion criteria included (1) primary and secondary source research studies in peer-reviewed journals; (2) published in English; (3) all research methodologies (i.e. qualitative, quantitative, mixed methods and systematic reviews or commentaries); (4) published between 2000 and 2016; and (5) studies from any country.; Results: The search yielded 2062 studies; 57 articles met inclusion criteria. Most studies employed purposive, convenience or criterion sampling. Participants included people with ID, family caregivers, paid caregivers and health-care professionals. Findings were summarised thematically: (1) menstruation and menopause; (2) vaccinations and preventive screenings; (3) supporting sexuality and healthy relationships; (4) coordinating with health-care providers and (5) contraception and sterilisation.; Conclusions: Findings from this scoping review underscore the need for more and better-quality research, including how family caregivers assist women and girls with ID access perinatal and preventive SRH services and sexual abuse education. Family caregivers, women and girls with ID and health-care providers need increased access to information about SRH.

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The Changing Status of Israeli Arab Women as Reflected in Their Role as Main Caregivers

The study evaluated how changes in the status of women in the Israeli Arab sector are perceived in light of the role of women as main caregivers of older adults. Interviews with 25 older adults and 27 family members were conducted. Qualitative analysis consisted of constant comparisons and contrasts of relevant themes. Two main themes emerged from the interviews. The first theme was the expected and actual role of women. The immediate response of most interviewees was the expectation that women are responsible for housework in their own home and in that of their aging parents. The second theme was the changes in the woman’s status in the Arab society. Most respondents noted that women today are very busy, and they sometimes work outside the home. In other words, the themes reflect the conflict between tradition and the rules that were followed in the past, and the changes that have appeared in recent years.

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What is an older husband's experience of caring for his wife who has dementia?

A significant number of informal carers look after people who have dementia. Women's caring experiences are well documented. However, a substantially smaller amount of research exists specifically investigating the male carer perspective. This literature review explores older husbands' experiences of caring for their wives who have dementia. The findings suggest that husbands are committed to their caring role but can feel socially isolated. The caring role of older men has altered the dynamic in the marriage. Husbands continue to show commitment towards their spouses but feel that male-only support groups could offer some respite from their responsibilities. Nurses need to take time to listen to husbands' experiences, offering emotional support and signposting them to other services. Further research on the long-term effects and support needs of older male carers is needed.

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A Scoping Review of Literature on Sex and Gender Differences Among Dementia Spousal Caregivers

Background and Objectives Sex and gender differences among dementia spousal caregivers have been investigated, but never systematically reviewed or synthesized. A synthesis of findings can help facilitate specificity in practice and in health policy development. As a first step towards such a synthesis, this scoping review reports the available evidence, identifies research gaps, and suggests possible directions for future research. Research Design and Methods A scoping review methodology was used to identify articles, and to chart and analyze data. Systematic searches for published, empirical studies, with an explicit goal or hypothesis related to sex or gender differences were conducted in seven databases. Results Sixty-one studies met inclusion criteria. Most (n = 45) were quantitative, cross-sectional studies. Caregivers included in the studies were generally 61–70 years old, Caucasian, middle-class, and highly educated. The most extensively investigated differences are: depression, burden, objective physical health, and informal supports. Discussion and Implications This scoping review is the first to summarize and critique the research on sex and gender differences that are specific to dementia spousal caregivers. The review can be used by researchers to make decisions regarding future systematic reviews and primary studies. To further strengthen the evidence base, future studies may benefit from including more caregivers of ethnic minorities, using more qualitative, longitudinal, or experimental designs, and focusing on variables needed to inform caregiving models and theories. Overall, this scoping review contributes to furthering gender-sensitive practices and policies that are better tailored to the specific needs of this population. 

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Male and Female Partner-Caregivers' Burden: Does It Get Worse Over Time?

Background and Objectives The general view is that partner-caregiver burden increases over time but findings are inconsistent. Moreover, the pathways underlying caregiver burden may differ between men and women. This study examines to what degree and why partner-caregiver burden changes over time. It adopts Pearlin's Caregiver Stress Process Model, as it is expected that higher primary and secondary stressors will increase burden and larger amounts of resources will lower burden. Yet, the impact of stressors and resources may change over time. The wear-and-tear model predicts an increase of burden due to a stronger impact of stressors and lower impact of resources over time. Alternatively, the adaptation model predicts a decrease of burden due to a lower impact of stressors and higher impact of resources over time. Research Design and Methods We used 2 observations with a 1-year interval of 279 male and 443 female partner-caregivers, derived from the Netherlands Older Persons and Informal Caregivers Survey Minimum Data Set. We applied multilevel regression analysis, stratified by gender. Results Adjusted for all predictors, caregiver burden increased over time for both men and women. For female caregivers, the impact of poor spousal health on burden increased and the impact of fulfillment decreased over time. Among male caregivers, the impact of predictors did not change over time. Discussion and Implications The increase of burden over time supports the wear-and-tear model, in particular for women. This study highlights the need for gender-specific interventions that are focused on enabling older partners to be better prepared for long-term partner-care. 

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Informal caregivers in Chile: the equity dimension of an invisible burden

Population aging is driving a process of increase in long-term care needs in Chile and many countries around the world. In this context, this article asks about the consequences of this increase in informal caregivers, emphasizing the inequity issues arising from these changes. Using the CASEN 2017 survey, caregivers are identified and matched to people with long-term care needs. Results show that most caregivers are women, and a large fraction of them are also elderly; this is similar to what has been found previously in developed countries. Caregivers have fewer opportunities than non-caregivers, which translates into lower income-generating ability and higher poverty. The nature of these tasks creates a vicious cycle in which people get trapped with increasing needs and fewer resources to meet them. Important differences arise between caregivers and the rest of the population. Even more concerning is that these disparities are avoidable to some extent, adding an equity dimension to the problem. This emphasizes the need for the generation of policies that will support caregivers and meet their needs.

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Informal care. European situation and approximation of a reality

Introduction: In European countries, the increasing of dependency affects individual, family-level and political aspects. The purpose is to analyse the effects on the health of informal carers living with a dependent person and the number of hours taken up by this care. Results between genders will be compared with other situations (time, energy commitments, influential socio-economic factors and differences among countries).; Materials/methods: This research is a cross-sectional study analysing secondary data and is carried out as part of the European Social Survey (ESS), 2014/2015. A total of 32,992 participants aged over 25 years took part in the ESS. Using an empirical framework, we have selected a simple logit model (logit) and a logit model with a multilevel structure ranking by country of residence (Xtmelogit).; Results: Being a carer is associated with a decrease in health indicators. Moreover, being a woman is related to an intense load of hours of care, no level of studies and living with difficulties. Living in southern or eastern European countries can also be considered a risk factor for carers. There are also important north-south political differences.; Political Implications: These results show the need to apply gender policies to reconcile and regulate the distribution of the income of economically more vulnerable families, as well as the provision of social services to help dependents.

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Do gender differences in housework performance and informal adult caregiving explain the gender gap in depressive symptoms of older adults?

We assess whether gender differences in domestic time-use, including informal adult caregiving and housework, explain the gender gap in depression among older adults. Using data from the Panel Study of Income Dynamics, we model depressive symptoms as a function of informal adult caregiving and housework. The analytic sample includes 539 men and 782 women. Findings suggest informal adult caregiving is associated with increased depressive symptoms for women (p < .05) and men (p < .05). Time spent on housework is associated with decreased depressive symptoms for women and female caregivers (p < .01). Women may experience elevated depressive symptoms relative to men despite their domestic time-use.

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Differences within Differences: Gender Inequalities in Caregiving Intensity Vary by Race and Ethnicity in Informal Caregivers

Among the 50+ million informal caregivers in the US, substantial gender, racial/ethnic, and socioeconomic disparities in caregiving intensity are well-documented. However, those disparities may be more nuanced: gender disparities in caregiving intensity may vary by race/ethnicity (White, Black, and Hispanic) and socioeconomic status (SES). We used data from the 2011 National Study of Caregiving and applied generalized linear models to estimate associations between three measures of caregiver intensity (ADLs, IADLs, and hours caregiving/month) and the three sociodemographic factors with their interaction terms. Black female caregivers provided significantly higher levels of care than White females and males for both IADL caregiving and hours/month spent caregiving. Black caregivers spent an average of 28.5 more hours/month (95%CI 1.7-45.2) caregiving than White caregivers. These findings highlight the need to understand the complex disparities within population subgroups and how intersections between gender, race/ethnicity, and SES can be used to develop effective policies to reduce disparities and improve caregiver quality-of-life. 

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Determinants of Burden and Satisfaction in Informal Caregivers: Two Sides of the Same Coin? The CUIDAR-SE Study

The aim of this study conducted in Spain was to analyze and compare burden, severe burden, and satisfaction among informal caregivers in relation to health-related quality of life (HRQoL), type and duration of caregiving, perceived social support, and use of social and health care services. We performed multivariate analyses to identify variables associated with caregiver burden, severe burden, and satisfaction with caregiving, stratified by gender. The results showed that secondary or third-level education, performance of ungratifying tasks, negative coping with caregiving, and more years providing care were associated with greater burden. Variables with protective effect were better perceived health of the person being cared for, better caregiver HRQoL, and high perceived social support. Women were 75% more likely to experience severe burden compared with male caregivers. Burden was reduced by high perceived social support in the case of women and by high caregiver HRQoL in the case of men. The main determinant of caregiving satisfaction for both men and women was perceived social support (OR = 3.11 and OR = 6.64). This study shows the need for interventions that promote gender equality and social support as a means of relieving burden and severe burden and improving satisfaction in both male and female caregivers.

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Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review

Background and Objectives Family carers of people with dementia (PWD) experience high rates of depression and anxiety. However, the factors that are associated with these mental health concerns among family carers are not well understood. The purpose of this review was to identify factors that are associated with depression and anxiety in family carers of PWD. Research Design and Methods A systematic review was conducted of studies that examined depressive or anxiety symptoms among family caregivers of community-dwelling older adults with dementia. Twenty-six studies met inclusion criteria and were included in the review. Results Depressive and anxiety symptoms were related to demographic factors, dementia characteristics, carer psychological and social factors, and dyadic relationship factors. Some prominent factors were consistently associated with depressive symptoms across studies. Female carers and adult–child carers, rather than spousal carers, were more likely to experience depressive symptoms. Carers' coping strategies and activity restriction were also found to be strongly related to depressive symptoms. Severity of dementia-related problematic behaviors was related to carers' depression and anxiety symptoms. In addition, relationship type and quality were important factors associated with depressive symptoms. Discussion and Implications Several important risk factors for carer depression were highlighted in this review. However, a lack of measurement precision and a reliance on cross-sectional studies limits our understanding of exactly how depression and anxiety progress during the caregiving experience. The implications for prevention and intervention programs for depression and anxiety are discussed, as well as suggestions for future research to improve the quality of research in this area. 

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Depressive symptoms among adult children caregivers in China: moderating effects of working status and gender

Objectives: With over one-fifth of the world's older population, shrinking family size and increasing number of women in the workforce, elder care is a growing challenge for families in mainland China. This study explored the moderating effect of working status and gender on caregiving time and depressive symptoms among adult children caregivers in mainland China. Method: Participants were 660 adult children caregivers from a nationally representative sample of individuals aged 45 + (N = 13,204) who participated in the China Health and Retirement Longitudinal Study (CHARLS) Wave 2 (2013). Multiple linear regression was used to analyze the direct effect of caregiving time and the moderating effects of working status and gender on symptoms of depression among caregivers. Results: Significant main effect between caregiving time and depressive symptoms was found controlling for demographic covariates. The three-way interaction between working status, gender and caregiving time was also significant. Working status and gender moderate the effect of caregiving time on depressive symptoms: among employed men and women caregivers, spending more hours providing care predicted fewer depression symptoms. Unemployed men caregivers who spent more hours providing care showed highest level of depressive symptoms. Conclusion: The relationship between caregiving time and depressive symptoms was moderated by working status and gender. Future research is needed to explore factors that influence changes in caregivers' health and well-being over time. 

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77 Behind the Scenes: the Burden Experienced by Informal Carers of People with Dementia

Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the 'CHESS' research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman's correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.

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59 Male Family Carers' Perceptions of Formal Support Services, a Meta-ethnography

Background Family carers provide thousands of hours of unpaid work every year, a third of whom are men, however this group are generally under-represented in research. Comparative studies have shown that male carers experience their caring role differently to female counterparts. Social concepts related to masculinity can help to explain help-seeking behaviours of male carers, as well as their attitudes to accessing outside support. Compared to women carers, men have lower rates of uptake of formal support services. This aim of this review, therefore, was to examine accounts of male carers' experiences and perceptions of receiving formal support. Methods The study followed a meta-ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the included studies was evaluated using the McMaster checklist. Using NVivo 12 software, primary qualitative data was analysed and key themes were identified. Results were synthesised using Noblit and Hare's (1988) process of meta-ethnography, retaining direct quotes from the studies. Results Eighteen studies were included in the final paper. Three main themes were identified: 1) asserting control over the caring role 2) desire to excel in caring role and 3) coping without formal support. Conclusion For the most part, male carers expressed a desire to be competent in their caring role. Perceived loss of control within the caring relationship was a key factor when men had low trust and dissatisfaction with services. Support services that were collaborative, education-based and gender-sensitive were favoured by the men. To engage more male carers, service providers should acknowledge men's experience and capabilities as well as their wish to stay involved in decision-making around care for their family member. For men over the age of 85 male family carers outnumber females in Ireland (CSO 2016). It is important to understand male carers' experience to develop more inclusive supports and consequently increase service uptake

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Caregiving time costs and trade-offs: Gender differences in Sweden, the UK, and Canada

Population ageing is putting pressure on pension systems and health care services, creating an imperative to extend working lives. At the same time, policy makers throughout Europe and North America are trying to expand the use of home care over institutional services. Thus, the number of people combining caregiving responsibilities with paid work is growing. We investigate the conflicts that arise from this by exploring the time costs of unpaid care and how caregiving time is traded off against time in paid work and leisure in three distinct policy contexts. We analyze how these tradeoffs differ for men and women (age 50-74), using time diary data from Sweden, the UK and Canada from 2000 to 2015. Results show that women provide more unpaid care in each country, but the impact of unpaid care on labor supply is similar for male and female caregivers. Caregivers in the UK and Canada, particularly those involved in intensive caregiving, reduce paid work in order to provide unpaid care. Caregivers in Sweden do not trade off time in paid work with time in caregiving, but they have less leisure time. Our findings support the idea that the more extensive social infrastructure for caring in Sweden may diminish the labor market effects of unpaid care, but highlight that throughout contexts, intensive caregivers make important labor and leisure tradeoffs. Respite care and financial support policies are important for caregivers who are decreasing labor and leisure time to provide unpaid care.

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Estimates for Numbers of Family Carers in Ireland

Since 2002, thanks to extensive lobbying and representation by the family carers movement, there has been a formal state-endorsed approach to quantifying the number of individuals in the Republic of Ireland who are providing unpaid care to a relative or friend. Initially, the Census of Population provided this data every five years. More recently a number of other large-scale surveys have been undertaken in an attempt to capture the prevalence of family caring in Ireland. This document seeks to summarise this new data and draws on the population data published by the Central Statistics Office in August 2019.

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Will I care? The likelihood of being a carer in adult life

The report finds that 65% of UK adults can expect to care unpaid for a loved one in their lifetime. The findings released in this report add crucial new data. Past studies have often relied on ‘snapshot’ data (which capture a moment in time), or research that shows what caring means for individuals but that is not representative of the whole population. Our new findings are from the highest quality UK surveys, based on data collected over decades from large representative samples of people regularly asked about caring and other aspects of their lives. We hope this new analysis will also contribute to achieving progress for carers, who, across the UK, urgently need better services and more support to manage work and care.

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Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia

Objective: This study examined different predictive factors of burden in a sample of family caregivers of patients with dementia (PWD). In particular, the influence of social support and resilience on burden was tested, considering potential mediation effects. Methods: A total of 283 primary and family caregivers in Spain were evaluated using a standardized protocol to assess sociodemographic characteristics, clinical state of PWD and specific variables of caregiving and care providers. Results: The role of caregiver of PWD was more common in women, reporting significantly higher levels of burden than men. Resilience and social support accounted for most of the variance in burden. Furthermore, social support partially mediated the relationship between resilience and burden in caregivers. Conclusions: Caregivers’ resilience and social support are protective factors against burden in caregivers of PWD. Both factors should be considered for tailored interventions aimed at reducing the health costs of burden in this population. 

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An asymmetric burden: Experiences of men and women as caregivers of people with psycho-social disabilities in rural North India

Caring for a family member with a psycho-social disability can be both rewarding and burdensome. This study analyses the experiences of caregivers of people with psychosocial disabilities (PPSDs) in rural communities in North India using relational gender theory. In-depth interviews with 18 female and male caregivers of PPSDs probed the social, emotional and health impacts of their caregiving role. Nine themes were identified that were grouped under three meta-themes: intra-personal, inter-personal and institutional impacts. Under the intra-personal meta-theme, all caregivers experienced high tension, with women describing almost overwhelming stress. Women minimised their role as caregivers, and felt negative and hopeless about their futures, while men had a more positive view of the future and themselves. Embodied experiences of psychological and social distress were consistently described by women, but not by men. Within the interpersonal meta-theme, men experienced opportunity for social connection and social support that was seldom available to women. Interpersonal violence with other household members was described by both men and women. Within the institutional meta-theme, both men and women described strength in unity, and gestures leading to the reordering of gender relations. These findings underline the significant and diffuse impacts of a gender order that values males and disadvantages females as caregivers of PPSDs, with the asymmetry of a greater burden for women. The findings point to the urgent need for global mental health policies that support and empower caregivers and that strengthen gender equality.

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Male/Female Differences in the Impact of Caring for Elderly Relatives on Labor Market Attachment and Hours of Work: 1997-2015

Objectives: Using representative samples of the Canadian labor market (N = 5,871,850), this study examined male/female differences in the impact of informal care on labor market attachment, and the extent to which differences in labor market participation and employment relationships explained these differences over a 19-year period. Methods: We examined four outcomes related to labor market impacts associated with caring for elderly relatives: leaving the labor market, working part-time, taking time off work in the previous week, and the amount of time taken off from work. Regression models examined differences between men and women, and the extent to which gendered labor market roles accounted for these differences. Results: We observed an increase in all labor market outcomes over the study period. Women were more likely than men to experience each outcome. Adjusting for labor market role variables did not change these estimates appreciably. After adjustment for differences in labor market roles women were 73% more likely to leave the labor market, more than 5 times more likely to work part-time, and twice as likely to take time off in the last week due to informal care. Further, for temporary absences to provide care, women took an average of 160 min more per week than men. Discussion: Taken together, these results suggest an increasing impact of informal care on labor market participation in Canada between 1997 and 2005, and it remains gendered. 

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Does the Presence of a Disabled Person in the Household Affect the Employment Probabilities of Cohabiting Women? Evidence from Italy, France and the UK

This paper investigates how the presence of a disabled person in the household affects the employment probabilities of cohabiting women. Using a unique data source and a dynamic probit model accounting for unobserved heterogeneity and endogenous initial conditions, we analyze Italy, France, and the UK, three countries that diverge substantially in terms of welfare system regimes, family and employment policies, and social norms. In line with care theory suggestions, we find that in Italy, where formal caring services are limited, and the male breadwinner model persists, women see reduced employment possibilities when cohabiting with disabled persons. In France and the UK, where family and employment policies, such as low-cost formal care and part-time jobs, provide some support for women in reconciling unpaid and paid work, the presence of a disabled person increases employment probabilities. In disentangling the contributions of disability benefits, it appears that they might provide financial resources to support formal caregiving and, therefore, mitigate the caregiving responsibilities of women.

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Gender Differences in Longitudinal Associations Between Intimate Care, Resiliency, and Depression Among Informal Caregivers of Patients Surviving the Neuroscience Intensive Care Unit

Background/Objective: Informal caregivers (e.g., family and friends) are at risk for developing depression, which can be detrimental to both caregiver and patient functioning. Initial evidence suggests that resiliency may reduce the risk of depression. However, gender differences in associations between multiple psychosocial resiliency factors and depression have not been examined among neuroscience intensive care unit (neuro-ICU) caregivers. We explored interactions between caregiver gender and baseline resiliency factors on depression symptom severity at baseline through 3 and 6 months post-discharge. Methods: Caregivers (N = 96) of neuro-ICU patients able to provide informed consent to participate in research were enrolled as part of a prospective, longitudinal study in the neuro-ICU of a major academic medical center. Caregiver sociodemographics and resiliency factors (coping, mindfulness, self-efficacy, intimate care, and preparedness for caregiving) were assessed during the patient’s hospitalization (i.e., baseline). Levels of depressive symptoms were measured using the Hospital Anxiety and Depression Scale at baseline, 3 months, and 6 months post-discharge. Results: Baseline depressive symptoms predicted depressive symptoms at both 3- and 6-month follow-ups, with no difference at any time point in rates of depression by gender. At baseline, greater levels of coping, mindfulness, and preparedness for caregiving were individually associated with lower levels of concurrent depression regardless of gender (ps < 0.006). The main effect of baseline coping remained significant at 3-month follow-up (p = 0.045). We observed a trend-level interaction between gender and baseline intimate care, such that among male caregivers only, high baseline intimate care was associated with lower depression at 3-month follow-up (p = 0.055). At 6-month follow-up, we observed a significant interaction between caregiver gender and baseline intimate care, such that male caregivers reporting high intimate care reported lower symptoms of depression than females reporting high intimate care (p = 0.037). Conclusions: Results support implementation of psychosocial resiliency interventions for caregivers of patients admitted to the neuro-ICU early in the recovery process. Male caregivers may particularly benefit from strategies focused on increasing intimate care (e.g., physical and emotional affection with their loved one) and quality of the patient-caregiver dyadic relationship.

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Caregiving, ethnicity and gender in Māori and non-Māori New Zealanders of advanced age: Findings from LiLACS NZ Kaiāwhina (Love and Support) study

Objective: This study investigates sex and ethnicity in relationships of care using data from Wave 4 of LiLACS NZ, a longitudinal study of Māori and non‐Māori New Zealanders of advanced age. Methods: Informal primary carers for LiLACS NZ participants were interviewed about aspects of caregiving. Data were analysed by gender and ethnic group of the LiLACS NZ participant. Results: Carers were mostly adult children or partners, and three‐quarters of them were women. Māori and men received more hours of care with a higher estimated dollar value of care. Māori men received the most personal care and household assistance. Carer employment, self‐rated health, quality of life and impact of caring did not significantly relate to the gender and ethnicity of care recipients. Conclusions: Gender and ethnicity are interwoven in caregiving and care receiving. Demographic differences and cultural expectations in both areas must be considered in policies for carer support. 

Policy Impact: Female predominance in caregiving is a robust finding in ageing studies. That men, particularly Māori men, received more informal care suggests that more research is needed to tease out influential demographic and cultural factors, to underpin equitable carer support services.

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Informal caregiving patterns and trajectories of psychological distress in the UK Household Longitudinal Study

Background: Approximately seven million people in the UK are engaged in informal caregiving. Informal caregivers are at risk of poorer mental and physical health. However, less is known about how the relationship between the informal caregiving and psychological distress changes over time. The aim of this study was to investigate longitudinal associations between the informal caregiving and psychological distress amongst UK men and women aged 16+. Methods: Data were analysed from the UK Household Longitudinal Study (UKHLS, n = 9368), a nationally representative study of UK households. Longitudinal linear mixed modelling was used to estimate associations between the longitudinal patterns of informal caregiving (non-caregiver/one episode of 1–2 years/intermittent caregiving/3+ years caregiving) and trajectories of psychological distress across seven waves of UKHLS data. Results: Informal caregiving was not associated with psychological distress for men. Women engaged in long-term (⩾3 years) or intermittent caregiving had higher levels of psychological distress at the point of initiation, compared with women who were not caregivers throughout the study period (3+ years caregiver: regression coefficient 0.48, 95% confidence interval (CI) 0.07–0.89; intermittent caregiver: regression coefficient 0.47, 95% CI 0.02–0.92). Trajectories of psychological distress changed little over time, suggesting a plateau effect for these caregiving women. Conclusions: Women engaged in long-term or repeated shorter episodes of informal caregiving reported more symptoms of psychological distress than non-caregiving women. Given the increased risk of reporting psychological distress and the increasing importance of the informal care sector, the risk of poorer mental health of informal caregivers should be a priority for public health. 

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Reciprocity, Autonomy, and Vulnerability in Men's Experiences of Informal Cancer Care

Men are increasingly participating, and acknowledging their roles, as informal . Yet, there has been comparatively little exploration of their experiences therein, especially within the context of cancer care. Here, drawing on semi-structured qualitative interviews with 16 Australian male carers for a relative with cancer, and using constructivist grounded theory, we explore their experiences of informal caring. Our analysis highlights a series of tensions, including the following: the meanings and practicalities of care provision including notions of reciprocity, duty, autonomy, and interdependence; the discomforts of dependency and vulnerability; and the complicated moralities that inflect "caring well." Given the shifting dynamics around informal care, we argue for increased attention to the affective tensions that arise at the nexus of moralities and masculinities in informal caring relations, especially as they are articulated in the context of illness, affliction, and dependency.

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Factors Associated with Anxiety and Depression among Family Caregivers of Patients Undergoing Palliative Radiotherapy

Objective: The family caregivers of patients receiving palliative care experience high levels of anxiety and depression. The aim of the present study was to investigate the factors associated with family caregivers' anxiety and depression when caring for patients with advanced cancer in Greece.; Methods: The sample consisted of 100 patients undergoing palliative radiotherapy and their respective caregivers. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the MD Anderson Symptom Inventory. Their respective caregivers completed the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the HADS. Correlational and multiple regression analyses were conducted to identify potential predictors of anxiety and depression.; Results: The majority of patients were male (63.0%), whereas the majority of their caregivers were female (76.0%). The mean ages of patients and caregivers were 63.9 ± 10.8 and 53.3 ± 12.6 years, respectively. Caregiving anxiety and depression were associated with patients' variables, such as gender (P < 0.0005), primary cancer (P = 0.008), and past surgery (P = 0.002), and caregiver's variables, such as gender (P = 0.001), co-residence (P = 0.05), previous care experience (P = 0.04), and means of transport (P = 0.038). In multiple regression analyses, caregiving anxiety and depression were significantly predicted by caregivers' and patients' characteristics, in a model that accounted for 48% of the anxiety variance (P < 0.0005) and 39% of the depression variance (P < 0.0005).; Conclusion: The caregivers who experienced more anxiety and depression shared the following traits: they were women, cared for men with lung cancer, cared for patients not undergoing surgery, lived together, were younger, went to the hospital by private means of transport, had previous care experience, and perceived an increased degree of general burden. Further investigation of the factors that may affect caregivers' psychological state is required to better identify parameters that may predict it.

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State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

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Caring for the carer: quality of life and burden of female caregivers

Objective: To assess the quality of life and the burden of female caregivers.; Method: Descriptive, cross-sectional, quantitative study carried out with 224 informal caregivers from March to July 2016. Three instruments were used: a characterization form for the caregiver, the WHOQOL-Bref questionnaire and the Zarit Burden Interview. The following tests were used: Cronbach's Alpha, Kolmogorov-Smirnov, Kruskal-Wallis, Spearman and Mann-Whitney.; Results: The mean age of caregivers was 51.8 years with a standard deviation of 13.7. They were predominantly married, had a low income and low level of education, were first-degree relatives, had been providing care for one to five years and presented some pathology. The associations of quality of life that presented statistical significance were: income, marital status, number of people living with the caregiver and time of care.; Conclusion: The burden was negatively correlated with QOL, that is, the greater the burden, the more impaired will be the life of these caregivers.

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Informal health care: examining the role of women and challenges faced as caregivers in rural and urban settings in Ghana

Objective: Globally, the informal health sector is continuing to experience increasing growth despite the parallel development of the formal health care sector over the years. However, studies in Ghana concerning caregiving are limited since little attention has been given to the informal health care sector. This study therefore explores the role of women as caregivers and the challenges they face in the Kumasi Metropolis and Ejisu Juaben Municipality in Ashanti Region of Ghana. Methods: In-depth interviews were conducted with 20 caregivers from the two study areas. Data were analyzed and presented based on a content and thematic analysis approach. Results: Findings from the study showed that caregivers perform key roles including those of a domestic, health care, economic, social and spiritual nature. However, caregivers were confronted with many challenges, including inadequate funds, inability to work effectively, prolonged stress, limited time for socialization and emotional trauma. Conclusion: For caregivers to perform their roles efficiently and effectively, government and health care authorities must provide them with immediate financial support and training. Also, in the near future policy makers should put a comprehensive policy in place to bolster caregiving in general.

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Male working carers: a qualitative analysis of males involved in caring alongside full-time paid work

Given ageing demographics, the need for carers will increase and studies suggest that men are nearly as likely as women to become carers. The purpose of this study is to understand the specific challenges that male working carers experience with regard to social life and paid work. Participant recruitment was conducted through local carer support groups and male-dominated workplaces. Using a semi-structured format, 15 interviews were conducted. Findings suggest a variety of themes, including caring characteristics, the effects of caring, support systems and coping strategies. Our results indicate that the male working carer population faces specific challenges in the workplace and social settings.

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Physical and mental health of Chinese grandparents caring for grandchildren and great-grandparents

The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.

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A pilot study: Resistive behavior in the context of informal caregiver-assisted activities of daily living

Providing care for people with dementia is difficult when resistive behaviors displayed by people impede caregiving efforts.; Purpose: To examined the frequency of resistive behaviors during informal caregiver-assisted activities of daily living and the impact of these occurrences.; Design: A cross sectional design was used to recruit 17 caregivers from Alzheimer's support group meetings in 2010.; Method: Self-report surveys were used to obtain participants' report of resistive behaviors.; Findings: A positive correlation was found between caregivers reported frequency of bathing behaviors and their reported upset with dressing behaviors. Gender differences emerged in caregiver reported frequencies of the resistive behaviors. Caregivers reported behaviors occurring between two and six times per week but rated the not frequent behaviors as somewhat to very upsetting when they occurred.; Conclusions: When informal caregivers provide assisted care, resistive behaviors occur. Future research is needed to identify interventions to help caregivers manage their upset when resistiveness occurs.

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The relationship between perceived social support and depressive symptoms in informal caregivers of community-dwelling older persons in Chile

Aim: Depression among caregivers of older persons is a serious concern, but it is often overlooked and neglected in developing countries. The aim of this study was to examine the relationship between perceived social support and depression in informal caregivers of community-dwelling older persons in Chile.; Methods: We analyzed cross-sectional secondary data on 377 dyads of community-dwelling older persons and their informal caregivers from a nationwide survey in Chile. The Duke-UNC Functional Social Support Questionnaire (FSSQ) was used to measure caregivers' perceived social support, and the Center for Epidemiologic Studies Depression Scale assessed their depression.; Results: In this study, 76.9% of the caregivers perceived a high level of social support, and 46.9% were assessed as having depression. Based on multivariable analysis, factors that decrease the likelihood of being depressed are a high level of social support (odds ratio (OR) = 0.311, 95% confidence interval (CI): 0.167-0.579) and having taken holidays in the past 12 months (OR = 0.513, 95%CI: 0.270-0.975). Factors that increase the likelihood of being depressed are being a female caregiver (OR = 2.296, 95%CI: 1.119-4.707), being uninsured (OR = 4.321, 95%CI: 1.750-10.672), being the partner or spouse of the care recipient (OR = 3.832, 95%CI: 1.546-9.493), and the number of hours of care (OR = 1.053, 95%CI: 1.021-1.085).; Conclusion: Higher levels of perceived social support and holidays were associated with lower levels of depression. However, being female, being the care recipient's partner or spouse, being uninsured, and having long care periods had detrimental effects. Interventions to preserve and enhance perceived social support could help improve depressive symptoms in informal caregivers. Additionally, support should be available to caregivers who are women, uninsured, and the care recipient's partner or spouse, as well as those who provide care for long hours, to ensure they have respite from their caregiving role.

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The opportunity costs of caring for people with dementia in Southern Spain

Objective: The aim of this paper is to study the opportunity costs (OC) that are involved in being a caregiver and to compare them with the direct costs assumed by the State and the families. We evaluate direct cost (those that imply a payment-out-of-pocket) and indirect cost (those that imply a dedication in time). We hypothesized that costs increase with the severity of the dementia, with the educational level and active occupational situation of caregiver. They are greater if the caregiver is male, but if the patient and caregiver cohabit they are reduced.; Method: 778 surveys were analyzed. Data was collected using a questionnaire specifically designed for the purpose, with the collaboration of Alzheimer's Diseases Associations in Andalusia (Spain). For the indirect cost, we used the reveal preferences method. For the comparison between groups an ANOVA and a MANOVA was done.; Results: The hypotheses were confirmed. The OC exponentially increases with severity. More than 55% of costs are assumed by families. Occupied people have higher educational level and incomes and contract more external support. Costs are significantly higher for male caregivers. Cohabiting reduces all kinds of costs.; Conclusions: The relationship between educational level and employment situation lead to think that if these variables are greater more people will seek professional support. Cultural reasons still maintain women as main caregivers for all educational levels. The existence of these informal caregivers as the main care providers is a saving for the State, and a brake for the development of professional supply.

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Health issues and informal caregiving in Europe and Italy

Informal caregivers are the unpaid persons who take care of a not self-sufficient family member, due to old age or chronic illness or disability. As in all the European countries, the demand for informal cares is further increased as a result of the ageing societies and the social and political fallout of informal caregiving is a very current and important issue. We have overviewed some international scientific literature, with the aim of understanding the key research objectives to be firstly pursued to address this problem. In particular, we focused on the psycho-physical health differences in informal caregivers, subjected to long lasting load and prolonged stress, as compared to non caregiver persons. We also underlined the relationship between caregiver health differences and stress, gender type, kind of the care recipient (autism) and social and political situation in Europe and Italy. The collected data indicate the necessity to prevent caregiver psychological and physical health by appropriate laws, especially supporting women, often most involved in care activities.

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Male partners' experiences of caregiving for women with cervical cancer—a qualitative study

Aims and objectives: This study aimed to develop knowledge on the experiences of male partners of women with cervical cancer during and after the illness. We explore men's experiences of becoming caregivers as well as how the illness trajectory affects or has affected the relationship. Background: Receiving a cancer diagnosis has a significant impact on the lives of both the cancer patient and their family members. However, studies of male partners' experiences with cancer patients are scarce. Additionally, cervical cancer and its impact on male caregivers are less explored than how other cancer diagnoses impact male caregivers. The theoretical concept of caring masculinities is helpful to interpret men's experiences as caregivers and partners. Design: The study employs a qualitative design with semi‐structured interviews with six men/partners recruited through the gynaecological section at a hospital. COREQ reporting guidelines have been applied. Findings: Based on our analyses, we find that men's experiences of being caregivers and partners of women treated for cervical cancer are multifaceted, comprising emotional and practical aspects. However, three main findings stand out as particularly significant for men in the context of cervical cancer: loneliness, an altered sexual relationship and shared feelings of vulnerability. Conclusions: The men describe an interdependence in the relationship with the women but also how the relationships have been seriously altered, particularly when it comes to sexuality. These findings resonate with hegemonic as well as caring masculinities. Relevance to practice: Complex issues of intimacy and sexuality should be a pivotal element in educating future healthcare professionals. We strongly suggest that issues such as dealing with masculinity and caregiving roles should be on the agenda and reflected upon in teaching and supervising in clinical practice. A broader approach to sexual health and relationships is needed in the patient–clinician relationships, including information about human papillomavirus. 

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Male Caregivers: Shifting roles among family caregivers

BACKGROUND: More than 16 million men in the United States are acting in the role of family caregiver. Men are usually viewed as not being caring simply because they provide care differently than women. However, this is not the case. OBJECTIVES: This article explores male caregiving from the perspective of family and professional roles. METHODS: A review of the literature related to men in the caregiving role was conducted. This review included only men providing care to a family member and was limited to men caring for an adult. FINDINGS: The main traits of male caregivers were defined as masculinization of caregiving behaviors, social support needs, and caregiver role strain/emotional aspects of caring. Men in the caregiving role must be supported. Education related to how men provide care is needed. Hands-on education should also be provided to men in the family caregiving role.

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Informal caregiving and diurnal patterns of salivary cortisol: Results from the Whitehall II cohort study

The objective was to investigate the relationship between various aspects of informal caregiving and diurnal patterns of salivary cortisol, with special attention to the moderating effect of sex and work status. The study population was composed of 3727 men and women from the British Whitehall II study. Salivary cortisol was measured six times during a weekday. Aspects of caregiving included the relationship of caregiver to recipient, weekly hours of caregiving, and length of caregiving. Diurnal cortisol profiles were assessed using the cortisol awakening response (CAR) and diurnal cortisol slopes. Results showed that men, but not women, providing informal care had a blunted CAR compared with non-caregivers (P Interaction = 0.03). Furthermore, we found a dose-response relationship showing that more weekly hours of informal care was associated with a more blunted CAR for men (P trend = 0.03). Also, the blunted CAR for men was especially pronounced in short-term caregivers and those in paid work. In women, the steepest cortisol slope was seen among those in paid work who provided informal care (P Interaction = 0.01). To conclude, we found different cortisol profiles in male and female informal caregivers. Male caregivers had a blunted CAR, which has previously been associated with chronic stress and burnout. Future research should investigate whether results are generalizable beyond UK citizens with a working history in the civil service.

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Reconstruction of Masculine Identities Through Caring Practices: The Experiences of Male Caregivers in Hong Kong

The purpose of this study was to explore from a gender perspective how masculinities might be reworked into identities of care through men taking on the role of family caregiver. A qualitative method was adopted for this research. Twenty Chinese men in Hong Kong who were the main caregivers in their families were invited for in-depth interviews to understand their views on caring and their experiences as caregivers. We identified four types of male caregiver: (a) conforming caregivers, (b) traditional caregivers, (c) transitional caregivers, and (d) transforming caregivers. Based on our findings, we argue that when men engage in caring, changes can occur in their perceptions of the value of care, their relationships with family members, and their male identities. The involvement of men in caring may lead to social change for men and transform gender relations.

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Eldercare and Childcare: How Does Caregiving Responsibility Affect Job Discrimination?

Despite rising legal claims, little research has examined discrimination against job applicants or employees because of their family caregiving responsibilities. Across three studies, we examine discrimination in hiring and starting salary decisions among equally qualified job applicants based on their elder, child, or sandwiched caregiving responsibilities. In study 1, primary caregiving parents were less likely to be hired, were offered lower salaries, and were rated as less competent, committed, available, and agentic, compared to non-primary caregiving parents. In study 2, primary child and elder caregivers were less likely to be hired and received lower salaries, and they were evaluated more negatively on job-related factors than non-caregivers, especially if they were female. In study 3, primary sandwiched caregivers (i.e., those responsible for both elder and child care) were less likely to be hired and were given lower salaries than primary child caregivers in a male-dominated job. Sandwiched caregivers were evaluated more negatively than other caregivers in both female- and male-dominated jobs.

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Employed Caregivers’ Response to Family-Role Overload: the Role of Control-at-Home and Caregiver Type

Drawing from role theory, stress and coping, and caregiving literatures, this paper develops a model of family-role overload involving two forms of caregiver burden (subjective, objective) and two types of maladaptive changes in employee behavior (at work, personal), and hypothesizes that caregiver type (eldercare-only vs. sandwich) moderates all paths in the model. Partial Least Squares structural equation modeling (SEM) supported all hypothesized direct paths. Contrary to our hypotheses, data analysis showed two positive relationships (i.e., objective caregiver burden to family-role overload, family-role overload to maladaptive changes in personal behavior) were stronger for those in the eldercare-only sample than for those in the sandwich sample. Post hoc analysis revealed five significant gender differences in the relationships included in our model. This study contributes to work–family theory by reinforcing the need to consider both caregiver type and gender when researching the challenges faced by employees trying to balance work and caregiving.

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Gender Differences in Social Support Received by Informal Caregivers: A Personal Network Analysis Approach

Social support is an important predictor of the health of a population. Few studies have analyzed the influence of caregivers' personal networks from a gender perspective. The aim of this study was to analyze the composition, structure, and function of informal caregiver support networks and to examine gender differences. It also aimed to explore the association between different network characteristics and self-perceived health among caregivers. We performed a social network analysis study using a convenience sample of 25 female and 25 male caregivers. A descriptive analysis of the caregivers and bivariate analyses for associations with self-perceived health were performed. The structural metrics analyzed were density; degree centrality mean; betweenness centrality mean; and number of cliques, components, and isolates. The variability observed in the structure of the networks was not explained by gender. Some significant differences between men and women were observed for network composition and function. Women received help mainly from women with a similar profile to them. Men's networks were broader and more diverse and they had more help from outside family circles, although these outcomes were not statistically significant. Our results indicate the need to develop strategies that do not reinforce traditional gender roles, but rather encourage a greater sharing of responsibility among all parties.

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Health Behavior Among Men With Multiple Family Roles: The Moderating Effects of Perceived Partner Relationship Quality

Men in the United States are increasingly involved in their children's lives and currently represent 40% of informal caregivers to dependent relatives or friends aged 18 years and older. Yet much more is known about the health effects of varying family role occupancies for women relative to men. The present research sought to fill this empirical gap by first comparing the health behavior (sleep duration, cigarette smoking, alcohol consumption, exercise, fast food consumption) of men who only occupy partner roles and partnered men who also fill father, informal caregiver, or both father and informal caregiver (i.e., sandwiched) roles. The moderating effects of perceived partner relationship quality, conceptualized here as partner support and strain, on direct family role-health behavior linkages were also examined. A secondary analysis of survey data from 366 cohabiting and married men in the Work, Family and Health Study indicated that men's multiple family role occupancies were generally not associated with health behavior. With men continuing to take on more family responsibilities, as well as the serious health consequences of unhealthy behavior, the implications of these null effects are encouraging - additional family roles can be integrated into cohabiting and married men's role repertoires with minimal health behavior risks. Moderation analysis revealed, however, that men's perceived partner relationship quality constituted a significant factor in determining whether multiple family role occupancies had positive or negative consequences for sleep duration, alcohol consumption, and fast food consumption. These findings are discussed in terms of their empirical and practical implications for partnered men and their families.;

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The Impact of Informal Caregiving for Older Adults on the Health of Various Types of Caregivers: A Systematic Review

Objective: Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers.; Methodology: A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively.; Results: The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving.; Conclusion: The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving.;

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Enabling Social Change with Immigrant and Refugee Caregivers: Beyond Dualistic Difference to Intersectionality

A personal narrative is presented which explores the author's experience of participating in a case study of his work for an immigrant and refugee women's health organization in Australia, to deliver multilingual health education and peer support to informal family caregivers in Melbourne, Victoria.

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Women's perspectives on home‐based care for family members with chronic illness: An Interpretive phenomenology study

The number of people with chronic illness who need home‐based care is increasing globally. Home‐based care is socially constructed to be work carried out by women. However, little attention has been paid to the opinions of middle‐aged women caring for family members with chronic illness at home. In this study, Thai women's perspectives on home‐based care for family members with chronic illness using interpretive phenomenology were identified. Fifteen middle‐aged women were interviewed twice, and the data were analyzed using thematic analysis. Four major themes emerged: (i) role obligation; (ii) social life change; (iii) doing good things; and (iv) lack of support. Important findings were that care was considered a woman's duty owing to cultural beliefs. Most participants sacrificed their own needs to care for others, as doing good things is considered an important Buddhist belief. Caring for others decreased women's social networks, but they cared more for their own health. Support with finances, information, workplaces, and care recipients should be provided to women with care responsibilities. These results can help nurses to better understand women's caring roles and the consequences of home‐based care that influence woman's health.

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Better Support for Carer-Employees in Canada: The Development of Standardised Guidelines for The Workplace

In 2012, it was estimated that more than 5.6 million Canadian employees (35% of the workforce) had adult/elder care responsibilities (Fast et al, 2014). Lack of workplace support leads to consequences such as: carer-employees leaving the workforce/missing work; premature retirement; reduced productivity; health problems; and increased costs to employers (Peters and Wilson, 2017). In 2016, a partnership of committed stakeholders set out to develop a bilingual Canadian Caregiver-Friendly Workplace Standard and Implementation Guide. It is a gender-sensitive, accessible guide for employers and human resource professionals and is suitable for use in a wide range of workplaces.

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'Special Mothers' in Ireland: Gender, Identity and The Social Construction of Caring for a Relative With an Intellectual Disability

Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women. The impact on identity is discussed and suggestions are made regarding how discourse, policy and advocacy can support this cohort of carers.

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Engaging men as fathers and caregivers: an entry point to advancing women's empowerment and rights

Engaging men and boys to do unpaid care work is key to achieving gender justice. This article argues that caregiving programmes with men can be effective and serve as an entry point to engage men as allies for feminist agendas. There is a need to increase the uptake and scale-up of such initiatives, while ensuring quality, local contextualisation and ownership, and full accountability to women and girls. Furthermore, such programmes must be connected with efforts to advance women's economic empowerment and rights, challenge social norms around caregiving, transform institutions, and be combined with progressive national policies to recognise, reduce and redistribute unpaid care work.

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Gender-based analysis of working-carer men: a North American scoping review

The purpose of this scoping review is to find all existing North American literature on male working carers and compare this information with female working carers. Searches were performed using various databases, published between 1996 and 2016. A total of 506 articles were found and 45 (<i>n</i> = 45) met all inclusion criteria. Five qualitative themes were identified: caregiving characteristics; motives for caring; work impacts; health impacts; and caring in the workplace and coping strategies. This review narrows the gap in the literature with respect to the similarities and differences between male and female working carers, and the way in which they approach caregiving tasks.

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Women, work and care in the Asia Pacific Edited by M. Baird, M. Ford and E. Hill

Gender equality is at the centre of government policy agendas around the world. Boosting women’s labour force participation is seen as the key to economic growth and human development in developing economies, and as an important way of managing ageing population crises in advanced welfare states. Yet, there is scant recognition, especially in developing countries, of the significance of care responsibilities in shaping women’s participation in the labour market. Scholars have analysed the connections between gender, work and care in the rich countries of the Global North, but little research addresses the Asia-Pacific – a region that is home to more than half the world’s population and over 40% of domestic workers. In this compelling collection, the editors – Marian Baird, Michelle Ford and Elizabeth Hill – put the spotlight on this diverse and complex region.

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Care Burden And Quality of Life of Family Members Caring for Cancer Outpatients

Background: Today, most cancer treatment is given in outpatient treatment centers. In this process, family members who are responsible for the primary care of the patient have difficulty coping with the side effects of the disease and the treatment. This can change the reactions of family members to care giving, affecting the physical and psychological health of family members. Aim: This study has been carried to determine the relationship between caregiving burden and quality of life (QOL) of family caregivers of outpatients receiving chemotherapy. Method: This descriptive and cross-sectionalstudy was carried out 120 patients' family caregivers applying to the outpatient center of university to receive chemotherapy. The data were collected through "Personal Information Form", "Caregiver's Stress Index'', " Cancer Patients' Caregiver Family Members' Life Quality Scale (CQOLC) " and by the researchers. Result: It has been determined that the family caregivers being female, having a low level of education, having a job, having lower incomes than their expenses, giving care for their spouses and giving care 21 hours and over daily have the worst QOL. All the family caregivers giving care reported that they live psychological distress while looking after the patient. Due to chemotherapy, all the family members providing care stated to have difficulties while handling the side effects occurred in patients. It was found that 30.8% of the family members could not cope with nausea, 29.1% with fatigue, 24.2% with loss of appetite, and 19.2% with vomiting. Conclusion: By reducing the maintenance burden of family member caregivers, it can be considered that the QOL of both family members and patients may increase.

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Gender Differences in Spousal Caregivers’ Care and Housework: Fact or Fiction?

Many studies reveal a gender gap in spousal care during late life. However, this gap could be an artifact of methodological limitations (small and unrepresentative cross-sectional samples). Using a data set that overcomes these limitations, we re-examine the question of gender differences in spousal care and housework adjustment when a serious illness occurs.We use biannual waves between 2001 and 2015 of the German Socio-Economic Panel Study and growth curve analyses. We follow couples longitudinally (identified in the household questionnaire) to analyze shifts in spousal care hours and housework plus errand hours that occur as a response to the spousal care need. We test for interactions with levels of care need and with gender.We found that men increase their care hours as much as women do, resulting in similar care hours. They also increase their housework and errand hours more than women do. Yet at lower levels of spousal care need, women still do more housework and errands because they spent more time doing housework before the illness. Even in a context of children’s decreasing availability to care for parents, male spouses assume the required caregiving role in systems relying on a mixture of public and private care.

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Psychological distress, social support, and quality of life among cancer caregivers in Albania

Objective Drawing on the Stress Process Model, this study examines cancer caregiving in Albania. We used conditional process analysis to test the relationship between psychological distress and quality of life through social support and to examine whether gender moderates pathways in this mediation model. Methods Face-to-face interviews were conducted with a non-probability sample of 377 caregivers from the public oncology service. Standardized measures were selected based on psychometric properties and cross-cultural adequacy; all had good internal consistency. Results Participants reported high levels of psychological distress, moderate social support, and poor quality of life. Compared with men, women had higher levels of distress, worse quality of life, and comparable levels of support. Men were more likely to be caring for a spouse and to rely on friends, while women also cared for others and relied more on family. Social support mediated a strong negative relationship between psychological distress and QoL. These pathways did not differ by gender. Conclusions Cancer is increasing rapidly in developing countries, where family caregiving is the preferred and often only option for long-term, intensive care. This study points to high risks for psychological distress and reduced quality of life, especially for female caregivers in Albania. Findings further highlight the importance of social supports an as avenue for prevention and intervention to improve quality of life for both men and women. 

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Gender effects on components of burden and depression among dementia caregivers

Objective: Previous literature has examined burden and depression predominately as unitary constructs in relation to dementia caregiving. No studies thus far have examined gender differences in the specific components of burden and depression in dementia caregivers. The current study examined whether empirically validated dimensions of caregiver burden differed by gender for dementia caregivers. Methods: The sample consisted of 211 dementia caregivers enrolled in a longitudinal intervention study. Only baseline functioning was evaluated in this study. Levels of burden were assessed using the Zarit Burden Interview (ZBI), and levels of depression were assessed using the Center for Epidemiologic Studies Depression Scale (CES-D). Results: Factor analysis revealed three facets of burden: impact of caregiving on the caregivers’ lives, guilt, and frustration/embarrassment, and four facets of depression: depressed affect, somatic activity, positive affect, and interpersonal feelings. Overall burden (p < .001) and impact of caregiving on the caregivers’ life (p < .001) were significantly higher in females. Overall levels of depression (p = .018), somatic and retarded activity (p = .018), depressed affect (p = .005), and positive affect (p = .012) were significantly higher in females. Conclusions: Findings suggest that distressed male and female dementia caregivers experience caregiving differently. Results from this study could be used to identify gender-specific interventions related to subtypes of burden and depression to optimize quality of life for caregivers.

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Alzheimers’ disease and caregiving: a meta-analytic review comparing the mental health of primary carers to controls

Objectives: To quantitatively review the literature comparing depressed mood, anxiety and psychological distress in caregivers (CGs) of older adults with Alzheimer's disease (AD) with non-caregivers (NCGs) Methods: Eighteen independent studies comparing AD CGs (N = 2378) with NCGs (N = 70,035) were evaluated in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines. Standardised mean differences (Hedges’ g) with associated 95% confidence intervals and p-values were calculated using a random-effects model. Results: Studies generally conformed to STROBE criteria in terms of their methodological and procedural detail, although data management issues that may contribute to methodological bias were identified. Pooled effect estimates revealed medium to large group differences in depression (gw = 1.01 [CI: 0.73, 1.29] p < 0.01) and anxiety (gw = 0.64 [CI: 0.39, 0.89] p < 0.01): AD caregivers reported higher symptom severity. Gender was a significant moderator: female caregivers experienced poor self-reported mood (gw = 1.58 [CI: 1.11, 2.05], p< 0.01), although this analysis was limited in power given the small number of contributing studies. Discussion: Caregivers of patients with AD experience poor mental health in comparison to the general population, with female caregivers being disproportionately affected. Further exploration of the psychosocial variables that contribute to these group differences is needed to inform effective support services and, in turn, help caregivers manage the emotional demands of AD.

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Gender and sex differences in carers' health, burden and work outcomes: Canadian carers of community-dwelling older people with multiple chronic conditions

Using two waves of survey data on family carers caring for older adults with multiple chronic conditions in Ontario and Alberta, this article provides a sex and gender analysis of 194 carers' health outcomes. Gender and sex differences were examined on the following health outcomes: general self-efficacy; physical and mental health composite scores; overall quality of life; and the Zarit Burden Inventory – as well as experiences with work interference for carer-employees. Multivariate ordinary least squares linear regressions were used to estimate the effects of sex and gender, controlling for the carer's socio-demographic and geographic characteristics, as well as for the characteristics of the care recipients. Sex and gender were found to have differentiated effects on each health outcome examined, providing evidence for specifically targeting health interventions by sex and gender. First, sex matters, as illustrated by the fact that female carers were found to be experiencing more negative health impacts than male carers (shown in the physical composite score and the quality of life score). This suggests that health-related interventions need to be targeted at female carers. Further, male carers are more likely to experience less carer burden, and more work interference, than female carers. Second, gender matters, as illustrated by the fact that masculine and androgynous genders showed significantly positive associations with general self-efficacy. This suggests that carers with feminine and undifferentiated gender roles experience more challenges with general-self-efficacy and could benefit from training and educational interventions to enhance their confidence in the caring role.

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Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Objectives To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. Design Cross-sectional study. Setting People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). Participants A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. Measurements Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. Results Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. Conclusion A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer. 

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Women and the Crisis of Care in the United States

The need for long-term care (LTC) services has been growing, and is escalating with the aging of the baby boomers. Women are the main providers and recipients of care in the formal (paid) and informal (family) LTC system, meaning they bear the brunt of the gap between the need for care and available resources. Without strong public resistance, this gap is likely to be filled by relying upon family care, mainly provided by women. This re-familization of care could turn our crisis of care into a catastrophe for low- and middle-income families.

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Valuing Informal Care in Ireland: Beyond the Traditional Production Boundary

Measures of economic output captured by traditional national account metrics emphasise the importance of paid work over unpaid work which can lead to inefficient policy decision making. We utilise Irish census data to measure the economic value of informal care in Ireland. Our results reveal the considerable value of informal care in Ireland ranging between E2.1 and E5.5 billion, depending on valuation approach. They also show a gendered distribution of informal care activities and the consequences of transposing market-based gender compensation asymmetries directly onto non-market activity. We discuss evidence of best practice in long-term care policy across Europe, which involves a combination of income supports for informal carers and substantial investment in formal home care provision. We also discuss apparent incongruences in current Government policy, which appears to prioritise a formal residential care model over more community-based care models, contradicting previously stated policy objectives and best practice in Europe.

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The degree of social difficulties experienced by cancer patients and their spouses

Background Although recent studies have increasingly reported physical and psychological problems associated with cancer and its treatment, social problems of cancer patients and their families have not been sufficiently elucidated. The present study aimed to identify cancer-associated social problems from the perspectives of both patients and their spouses and to compare and analyze differences in their problems. Methods This was a cross-sectional internet-based study. Subjects were 259 patients who developed cancer within the previous five years and 259 patients’ spouses; the data were derived from two surveys in 2010 (patients) and 2016 (spouses) whose participants were not part of the same dyad but matched by propensity scores, estimated for age, sex, and the presence or absence of recurrence. We investigated the social difficulties of cancer patients and patients’ spouses. Regarding social difficulties experienced by cancer patients and spouses, the 60 patient survey items were categorized into 14 labels by the Jiro Kawakita (KJ) method, which is a qualitative synthesis method developed by Kawakita to classify categorical data. Results Although patients had higher scores on most subcategories, young spouses aged 39 or younger and female spouses had difficulty scores as high as the corresponding patients on many subcategories. Conclusion Health care providers should show sufficient concern for both patients and their spouses, particularly young and female spouses.

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Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey

Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers’ own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data. Design: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers’ psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient’s last 3 months of life. Participants: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 (N = 6477–6790). Results: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers’ general health scores were lower than population scores, median 75 (interquartile range, 50–80) versus 80 (interquartile range, 70–90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers. Conclusion: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.

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Spotlight: Mind the care gap – exposing the health system’s vulnerability to the gap between family care provision and anticipated demand

This Spotlight offers an analysis of family carers, those who provide care and support on an unpaid basis to people who are sick, disabled or frail in the community. It explores how demand for care at home is likely to increase dramatically while the future supply of family carers may be limited by demographic factors. High calculations of the monetary value of family care to the State underscore it’s vulnerability to any future shortage in family carers. Current developments which may have an impact on carers’ lives and the future supply of carers are considered.

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Holding Up More Than Half the Sky

In recognition of the contributions that women made to Chinese society, Mao Zedong said that “women hold up half the sky.” In my family of origin, I am 1 of 5 children. Our ages range from mid-70s to early 60s. On Mother’s Day 2017 our mother “went home” following 2 years of steady decline. Mom lived on her own for 34 years, and she did quite well managing her affairs, keeping house, and visiting her children who were scattered around the country. But failing eyesight, hearing loss, and an inability to maintain personal hygiene and adequate nutrition and hydration began to take hold.

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New Evidence on Employment Effects of Informal Care Provision in Europe

Objective To estimate how labor force participation is affected when adult children provide informal care to their parents. Data Source Survey of Health, Ageing and Retirement in Europe from 2004 to 2013. Study Design To offset the problem of endogeneity, we exploit the availability of other potential caregivers within the family as predictors of the probability to provide care for a dependent parent. Contrary to most previous studies, the dataset covers the whole working‐age population in the majority of European countries. Individuals explicitly had to opt for or against the provision of care to their care‐dependent parents, which allows us to more precisely estimate the effect of caregiving on labor force participation. Principal Findings Results reveal a negative causal effect that indicates that informal care provision reduces labor force participation by 14.0 percentage points (95 percent CI: −0.307, 0.026). Point estimates suggest that the effect is larger for men; however, this gender difference is not significantly different from zero at conventional levels. Conclusions Results apply to individuals whose consideration in long‐term care policy is highly relevant, that is, children whose willingness to provide informal care to their parents is altered by available alternatives of family caregivers.

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Exploring experiences of informal carers of mental health: Developing community intervention in social work in Jordan

The purpose of this article is to generate meaningful understanding of the mental health informal carers’ experience and to identify a possible approach to social work intervention. A mixed method of quantitative and qualitative analysis was used for data collection. The findings reveal that most of the informal carers are female adult. They experience stress, domestic violence, social exclusion as a result of the caring role, and fear of stigma. Cultural and religious factors must be considered when translating the caring role. The findings suggest implications for social work practice at a community level, utilizing a familial and support-group approach, with a practice that is sensitive to gender and religion.

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Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews ([i]n[/i] = 25), observations of agency home care visits ([i]n[/i] = 9) and analyses of policy and home care agency documents ([i]n[/i] = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences. 

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In sickness and in health: The strains and gains of caring for a chronically ill or disabled spouse

Objectives To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. Methods Mixed-methods exploratory study involving questionnaires (N equals 40) and in-depth interviews (N equals 8) with spousal carers in the southwest of England. Results Participants used a combination of negative and positive terms to describe their experiences, with the cared-for spouse's mental acuity, behavior towards the carer, and amount of care required, impacting on carers' subjective experience. Women were more likely to report neglecting their own health because of being a carer (p equals 0.02). The marital relationship itself was highly significant, and many carers took special measures to maintain and develop their marital bonds. Carers adapted to their roles in various ways, with those finding acceptance of their situation and accessing support appearing to cope best with the demands of the role. Discussion This study, though based on a small and geographically restricted sample, offers insight into the positive, negative, and relational experiences of spousal carers. Support that encourages carers to engage in health-promoting activities, and ideally provides opportunities for both partners to be involved in such activities together, may be particularly beneficial. 

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Relationships between Caregiving Stress, Depression, and Self-Esteem in Family Caregivers of Adults with a Disability

This study aimed to examine the relationships between caregiving stress, depression, and self-esteem of family caregivers of an adult person with a disability and to identify their effects on their caregiving burden. The study was performed with 108 care providers of adult people with a disability who visited hospital rehabilitation centers. Caregiving stress showed a significant positive correlation with depression and with economic and psychological stress, and it showed a significant negative correlation with self-esteem. When the care provider was aged, female, and without a job and the caregiving cost and time were higher, the caregiving stress was high. When the care provider was female and had a lower income, the depression index was high. When the person with a disability was male and in the forties and the level of disability was higher, the caregiving stress was high. When the disability was related to spinal cord damage, the care provider’s depression index was the highest. To reduce caregiving stress and depression in the family caregivers and to improve their self-esteem, continuous support and help from specialists are necessary. Additionally, a variety of intervention programs need to be designed to motivate them to participate regularly at the community level.

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A carer burden and stigma in schizophrenia and affective disorders: Experiences from Sri Lanka

Objectives: Stigma compounds the burden experienced by family members of those with a mental illness. This study aimed to examine burden experienced by carers of people with schizophrenia or affective disorders and to explore the relationship between carer burden and stigma. Method: A cross sectional descriptive study was conducted with patient-carer dyads involving 67 patients diagnosed with schizophrenia and 51 diagnosed with affective disorder. Carers completed the Zarit Burden Interview (short version) and stigma was measured using the Stigma Scale and the Internalised Stigma of Mental Illness Scale. Results: Carer burden was significantly higher for schizophrenia than affective disorders. Female carers experienced significantly higher burden than male carers. Diagnosis, gender of carer and stigma predicted 22% of the variance in carer burden, with gender identified as a significant predictor. Conclusions: Reducing stigma related to disclosure of mental illness in carers has the potential to reduce carer burden.

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A systematic review on the factors associated with positive experiences in carers of someone with cancer

The aim of this review was to identify the factors associated with positive experiences in non‐professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990 to June 2015. Two raters were involved in data extraction, quality appraisal, coding, synthesis and analysis. Evolutionary concept analysis was used as a guiding framework in order to focus on attributes associated with positive experiences. Fifty‐two articles were included in this review. Analysis identified four overarching attributes: “gender,” “personal resources,” “finding meaning” and “social context.” Despite the challenges associated with caring, this combination of internal and external factors enabled some carers to report positive experiences related to caring. This knowledge may be clinically helpful when designing supportive interventions. Strengths and limitations of these claims are discussed.

Systematic review registration number: CRD42014014129.

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‘Because it’s the wife who has to look after the man’: A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life

Background: Research indicates that women are the primary family caregivers for others at life’s end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women’s understandings of providing care. Aim: To explore how gender norms constructed older women’s views about the appropriate roles of women and men in providing palliative and end-of-life care for family members. Design: Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants’ reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women’s caregiving experience. Setting/participants: A total of 36 women in the age ranges of ‘50–59 years’ through to ‘90–99 years’ from New Zealand. Results: Three themes regarding gender and caregiving were identified: the expectation women will care, women’s duty to care and women’s construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction. Conclusion: The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers. 

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Care-related Quality of Life of informal caregivers of the elderly after a hip fracture

Background: Reforms in the Dutch healthcare system in combination with the aging of the population will lead to a strong increase in the demand for informal care in the Netherlands. A hip fracture is one of the most important causes of hospital admissions among frail elderly and informal caregivers experience stress that may have significantly negative impact on the caregivers’ Quality of Life. The purpose of the study was to determine the nature, intensity and the care-related Quality of Life (CarerQoL) of informal caregivers of elderly patients in the first six months after a hip fracture. In this cross-sectional study, were interviewed the primary informal caregivers of patients with a hip fracture about the informal care provided after one, three or six months following the injury. The CarerQoL of the informal caregivers was measured with the CarerQoL-7D instrument. Results: In total, 123 primary informal caregivers were included. The CarerQoL-7D score was on average 83.7 (SD 15.0) after one, three and six months, and there were no major differences between the measurement time points. The average amount of informal care provided per patient per week was 39.5 during the first six months. Partners of patients with a hip fracture provided significantly more hours of informal care (β 34.0; 95% CI: 20.9 – 47.1). Female informal caregivers stated a significantly lower level of CarerQoL (β -7.8; 95% CI: -13.3 – -2.3). Female caregivers were 3.0 times more likely to experience relational problems (aOR 3.02; 95% CI 1.08-8.43). Caregivers provided care at 6 months were associated with physical health problems (aOR 2.54; 95% CI 1.05-6.14). Conclusions: Informal caregivers, especially partners, are faced with providing care of greater intensity to elderly patients during the first six months after a hip fracture. The CarerQoL was not associated with the intensity of the provided informal care. However, this study shows that a considerable group of informal caregivers for elderly patients with a hip fracture experienced relational, physical and mental health problems that stemmed from providing intensive informal care during the first six months.

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The socioeconomic within-gender gap in informal caregiving among middle-aged women: Evidence from a Japanese nationwide survey

Caregiving to older people with needs has been mainly dependent on informal care provision by female caregivers. Compared with the care burden gender gap, the within-gender gap in women's socioeconomic status (SES) has attracted less policy attention. We investigated the association between middle-aged women's SES and the likelihood of being a primary caregiver for elderly informal care, focusing on household income, women's marital status, work status, and educational background under the universal and public system of formal long-term care provision in Japan. We used repeated cross-sectional data from nationally representative household surveys conducted between 2010 and 2013 to obtain a sample of 2399 women aged between 40 and 60 years living in the same household as a care recipient. We conducted multiple logistic regression analysis to obtain odds ratios of being a primary caregiver in the household regressed on women's SES variables, adjusting for the characteristics of care recipients and household composition. The results showed that single women with lower education were likely to be primary caregivers when the care recipients had severe levels of care needs, whereas the association was null in the case of care recipients with milder conditions. The results indicated that women's low education and non-married status were related to a higher likelihood of becoming a primary caregiver of severely disabled elderly for reasons other than lower economic power.To emancipate socioeconomically vulnerable women from the care burden, a broader set of social, economic, and welfare policies are needed.

  • Long-term elderly care has mainly been provided informally by women.
  • Our study focused on unequal burden within women across socioeconomic status (SES).
  • Single women with lower education were at risk of heavier caregiving burdens.
  • A broader policy is needed to reduce SES-bound disparity in women's caregiving.
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Informal care and long-term labor market outcomes

In this paper we estimate long-run effects of informal care provision on female caregivers' labor market outcomes up to eight years after care provision. We compare a static version, where average effects of care provision in a certain year on later labor market outcomes are estimated, to a partly dynamic version where the effects of up to three consecutive years of care provision are analyzed. Our results suggest that there are significant initial negative effects of informal care provision on the probability to work full-time. The reduction in the probability to work full-time by 4 percentage points (or 2.4-5.0 if we move from point to partial identification) is persistent over time. Short-run effects on hourly wages are zero but we find considerable long-run wage penalties.

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When Employment and Caregiving Collide: Predictors of Labor Force Participation in Prospective and Current Caregivers

Objective: Female caregivers often reduce time spent at work to care for aging family members, which precipitates financial hardship and other adverse outcomes. Little is known about psychosocial correlates of labor force participation (LFP) among female caregivers. The theory of planned behavior posits that social norms, attitudes, and perceived control predict intentions and volitional behaviors, but also that the compelling influence of situational variables undermines enactment of behaviors consistent with one’s intentions. The objective of this study was to employ the theory of planned behavior to examine how psychosocial characteristics predict willingness to reduce LFP among prospective caregivers and actual LFP reduction among active caregivers. Methods: Subsamples of 165 female prospective caregivers and 97 active female caregivers responded to a survey assessing filial beliefs and LFP. Results: Filial obligation and caregiver preparedness predicted intentions to reduce LFP among prospective caregivers, but did not predict actual reduction in LFP in active caregivers. Weekly care demands exceeding 20 hours emerged as the sole correlate of LFP among active caregivers. Conclusions: Domains of the theory of planned behavior predict LFP intentions, but LFP decisions are subject to external pressures, specifically, time demands of the caregiving relationship. Prospective caregivers may benefit from proactive interventions aimed at reducing conflict between situational demands and filial beliefs.

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Informal parental care and female labour supply in Japan

Using the Japanese Study of Aging and Retirement, Japan’s first globally comparable panel survey of the elderly, we estimate the effect on female employment in Japan due to the provision of informal parental care. We observe that informal parental care has little impact on female employment, after controlling for endogeneity of informal care or individual unobserved time-invariant heterogeneity. This finding is consistent with those observed in Europe and the US, underscoring a limited association between care and work in Japan, which is facing ageing at the fastest pace among advanced economies.

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Caregiver Burden Among Caregivers of Individuals With Severe Mental Illness: Testing the Moderation and Mediation Models of Resilience

The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n = 201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden.

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Female Caregivers and Stroke Severity Determines Caregiver Stress in Stroke Patients

Background: Stroke is among the major causes of short- and long-term disability. This study aimed to understand the caregivers (CGs) stress in stroke survivors. Materials and Methods: A 22-item questionnaire was administered to 201 CGs of stroke survivors. The variables tested were physical and mental health, social support, financial, and personal problems. CGs were divided into Group A (Barthel index [BI] <75) and B (BI >75) according to patient's BI, according to gender (male and female CG) and relation; spouses (wife, husband), daughters, sons, daughter-in-law, grandchildren, and rest (father, mother, brother, sister, and in-laws). Data were analyzed using SPSS software version–21. Data were analyzed to determine which variables of the patient effects the CG stress. Results: Majority of the CGs (74.62%) were females. 65% of CGs graded their burden as moderate to severe. 81% of CGs had left their work for caregiving. More than half of the CGs felt sleep disturbance and physical strain. Psychological instability and financial burdens were reported in 3/4th of CGs. Group A CGs faced more sleep, financial, health, and social life disturbance. Patient's bladder and bowel problems, shoulder pain, patients noncooperative attitude for medication administration, and physiotherapy were more upsetting for Group A CGs. Female CGs were subjected to more sleep disturbance, physical and psychological stress, faced more difficulty regarding the patient's bladder, bowel, personal hygiene needs, and physiotherapy. Female CGs felt less motivated in caregiving than male CGs. Wives and daughters-in-law experienced more burden. Time spent and burden perceived was more by female CGs (χ2 = 15.199, P = 0.002) than males (χ2 = 11.931, P = 0.018); wives and daughters than other relations (χ2 = 32.184, P = 0.000), (χ2 = 35.162, P = 0.019). Conclusion: Our study showed that caregiving burden was predominantly shouldered by females CGs. CGs faced physical, psychological, and socioeconomic burden. The burden was more evident in female CGs and in patients with severe stroke.

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Informal employment, unpaid care work, and health status in Spanish-speaking Central American countries: a gender-based approach

To assess the relationship between paid work, family characteristics and health status in Central American workers; and to examine whether patterns of association differ by gender and informal or formal employment.Cross-sectional study of 8680 non-agricultural workers, based on the First Central American Survey of Working Conditions and Health (2011). Main explicative variables were paid working hours, marital status, caring for children, and caring for people with functional diversity or ill. Using Poisson regression models, adjusted prevalence ratios of poor self-perceived and mental health were calculated by sex and social security coverage (proxy of informal employment).A clear pattern of association was observed for women in informal employment who were previously married, had care responsibilities, long working hours, or part-time work for both self-perceived and mental health. No other patterns were found.Our results show health inequalities related to unpaid care work and paid work that depend on the interaction between gender and informal employment. To reduce these inequalities suitable policies should consider both the labor (increasing social security coverage) and domestic spheres (co-responsibility of care).

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Lifting the Burden Formal Care of the Elderly and Labor Supply of Adult Children

We use a reform in the federal funding of care for the elderly in Norway to examine the effects of formal care expansion on the labor supply decisions of middle-aged children. We find a consistent and significant negative impact of formal care expansion on insured work absences for the adult daughters of single elderly parents. This effect is particularly strong for daughters with no siblings, who are also more likely to exceed earnings thresholds after the reform. We find no impacts of the reform on daughters’ mobility or parental health, and no effects on adult sons.

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Gender differences in the long-term care of older parents: evidence from India

This paper examines gender differences in the long-term care of older parents in India by studying the expected provision of care by married sons and daughters. Gender differences in long-term care are important, as the sociocultural environment of India shapes the role of married children. While married sons are expected to provide long-term care for their biological parents, married daughters have limited scope to do so, a tendency that was revealed through our data from Osaka University’s ‘Preference Parameters in India, 2011.’ Other family members are also expected to play a significant role in parental care, while neither gender expects their parents to rely on professional long-term care. This paper contributes to the scarce empirical evidence on long-term care for older parents by married children, as opposed to previous research that has focused on the division of caregiving activities between sons and daughters in general.

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Development of older men's caregiving roles for wives with dementia

This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5‐ to 6‐year period. The findings comprise three themes, me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.

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The Mental Health of Children Providing Care to their Elderly Parent

Providing care to a disabled parent can be a psychologically strenuous activity with potential negative consequences for the caregiver's mental health. At the same time, experiencing the declining health of a parent – often the very reason for the parent's care needs – can impact the adult child's mental health negatively. Because both events are usually observed simultaneously, disentangling the “caregiver effect” and the “family effect” remains a challenge. Using longitudinal data of the elderly population in Europe and an instrumental variable approach to address possible endogeneity concerns, this paper separately estimates the effect of caregiving and the decline of a parent's health on adult children's mental health. While I find negative but small caregiver and family effects for the “average” caregiver, the caregiver effect is multiplied for daughters if care provision is triggered by higher parental care needs. 

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The longitudinal association between informal caregiving and body mass index in the second half of life: findings of the German Ageing Survey

Objective We aimed to investigate the relation between informal caregiving and body mass index (BMI) longitudinally. Study designThe data were drawn from wave 2 (2002) to wave 5 (2014) of the German Ageing Survey. This is a representative sample of the community-dwelling population aged 40 years and above in Germany. Methods Self-rated BMI was used. Individuals were asked whether they provide informal care on a regular basis. Adjusting for employment status, age, marital status, morbidity and depressive symptoms, fixed effects regressions were used. Results The fixed effects regressions showed that the onset of informal caregiving was not associated with changes in BMI in the total sample and in women, whereas the onset of informal caregiving was associated with increasing BMI in men (β = 0.15, P < 0.05). In addition, an increase in BMI was positively associated with ageing, an increase in morbidity and a decrease in frequency of sports activities in the total sample and in both sexes. Conclusions Our findings stress the longitudinal relation between informal caregiving and BMI in men. Consequently, it might be helpful to generate weight management strategies specifically designed for male informal caregivers.

  • We examined the longitudinal association between informal care and body mass index (BMI).
  • A representative sample of individuals aged 40 years and above was used (2002–2014).
  • Onset of informal caregiving was not associated with changes in BMI in the total sample and in women.
  • Onset of informal caregiving was associated with increasing BMI in men.
  • Findings are useful to tailor weight management strategies.
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Adult Children's Serious Health Conditions and the Flow of Support Between the Generations

Purpose: The life course perspective suggests that serious physical or mental health conditions that limit the daily activities of any one family member are likely to be consequential for other family members as well. In this article, we explored whether adult children’s serious health conditions affected the flow of expressive and instrumental support between mothers and both the offspring with health conditions and other offspring in the family. Design and Methods: We used data collected from 369 older mothers (M = 78 years) regarding 1,338 of their adult children (M = 49 years), as part of the Within-Family Differences Study-II. Results: Adult children with serious health conditions were more likely than their siblings to be given support by their mothers. The presence of adult children with health issues did not reduce mothers’ provision of expressive or instrumental support to their children without health conditions. However, in families in which a higher proportion of children had serious health conditions, mothers received expressive support from a greater proportion of their healthy adult children than in families with a smaller proportion of adult children with health conditions. Implications: These findings contribute to a growing body of research demonstrating the ways in which conditions in adult children’s lives affect their mothers.

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An intersectional analysis of male caregiving in South African palliative care

Care work is often feminised and invisible. Intangible components of care, such as emotional labour, are rarely recognised as economically valuable. Men engaging in care work can be stigmatised or simply made invisible for non-conformance to gender norms (Dworzanowski-Venter, 2008). Mburu et al (2014) and Chikovore et al (2016) have studied masculinity from an intersectional perspective, but male caregiving has not enjoyed sufficient intersectional focus. Intersectional analysis of male caregiving has the twin benefits of making 'women's work' visible and finding ways to keep men involved in caring occupations. I foreground the class-gender intersection in this study of black male caregivers as emotional labourers involved in palliative care work in Gauteng (2005-2013). Informal AIDS care and specialist oncology nursing are contrasting cases of male care work presented in this article. Findings suggest that caregiving men interviewed for this study act in gender-disruptive ways and face a stigmatising social backlash in post-colonial South Africa. Oncology nursing has a professional cachet denied to informal sector caregivers. This professional status acts as a class-based insulator against oppressive gender-based stigma, for oncology nursing more closely aligns to an idealised masculinity. The closer to a 'respectable' middle-class identity, or bourgeois civility, the better for these men, who idealise traditionally white male formal sector occupations. However, this insulating effect relies on a denial of emotional aspects of care by male cancer nurses and a lack of activism around breaking down gendered notions of care work. Forming a guild of informal sector AIDs caregivers could add much-needed professional recognition and provide an organisational base for gender norm disruption through activism. This may help to retain more men in informal sector caregiving roles and challenge the norms that are used to stigmatise male caregiving work in general.

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Health-related quality of life in Spanish informal caregivers: gender differences and support received

PURPOSE: We analyzed gender differences in health-related quality of life (HRQoL) and associated factors between informal male and female caregivers in Spain. It is important because of growing rates of dependent people and dwindling public resources. METHODS: We conducted a cross-sectional study of 610 informal caregivers (265 male and 345 female) using an ad hoc structured questionnaire. We performed a descriptive analysis and used multivariate logistic regression to analyze the risk of poor HRQoL, measured with the EQ-5D-5L, according to caregiver sex, sociodemographic characteristics of caregivers and dependents, caregiving circumstances, and support received. RESULTS: Male caregivers were older than women were, and cared more often for their partners. More women used family caregiving allowance (FCA), respite care services, and counseling services, while more men used paid help, home help, and other forms of instrumental help. Women had worse HRQoL than men, particularly in the pain/discomfort dimension. In addition to older age and poor previous health, caring for a partner (OR = 2.379), for a person with major dependence (OR = 1.917), low social class (OR = 1.634), and low social support (OR = 2.311) were factors associated with poor HRQoL. Receiving FCA was associated with better HRQoL (OR = 0.319). Controlling for all these variables, women had 131% more odds than men to have poor HRQoL. CONCLUSIONS: Male and female caregivers in Spain differ in received support and how their HRQoL is affected. These differences are important to design interventions to promote more equitable sharing of care responsibilities and better caregiver health.

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Gender and socio‐economic inequalities in health and living conditions among co‐resident informal caregivers: a nationwide survey in Spain

AIMS: To explore the associations between social determinants, caregiver's network support, burden of care and their consequences in health and living conditions of informal caregivers.

BACKGROUND: The socio-demographic trends regarding population ageing and changes in family models trigger an increased demand for care.

DESIGN: Cross-sectional study based on the 2008 edition of the National Disability, Independence and Dependency Situations Survey (DIDSS-2008) conducted by the National Statistics Institute in Spain.

METHODS: Analyses focused on persons identified as primary caregivers who co-reside with the dependent person. The associations between social determinants of caregivers, burden of care, support network and problems attributed to informal care (impaired health, depression, professional, economic and personal issues) were estimated by fitting robust Poisson regression models. Analyses were conducted separately for women and men.

RESULTS: The study sample included 6923 caregivers, 73% of women and 27% of men. Gender and socio-economic inequalities were found in assumption of responsibilities and burden of caring for dependents, which tend to fall more on women and persons of lower socio-economic level, who in turn have less access to formal support. These aspects translate into a higher prevalence of health, professional, economic and personal problems.

CONCLUSIONS: The study highlights gender and socio-economic inequalities in informal caregiving and its negative consequences. These findings may be useful in the design of policies and support programmes targeting the most affected groups of informal caregivers.

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Impact of parents' need for care on middle-aged women's lifestyle and psychological distress: evidence from a nationwide longitudinal survey in Japan

Background: Many studies have separately addressed the associations of informal caregiving with coresidence, a caregiver's work status, and health conditions, but not jointly. We examined how their parents' need for care affects middle-aged women's lifestyle and psychological distress, considering the potential simultaneity of decisions on caregiving and living adjustments.; Methods: We used 22,305 observations of 7037 female participants (aged 54-67 years) from a nationwide longitudinal survey in Japan conducted during 2009 and 2013. We considered the occurrence of parents' need for care (OPNC) as an external event and estimated regression models to explain how it affected the probabilities of the participants becoming caregivers, coresiding with parents, and working outside the home. We further conducted the mediation analysis to examine how the impact of OPNC on participants' psychological distress measured by Kessler 6 (K6) scores was mediated by caregiving and living adjustments.; Results: OPNC made 30.9% and 30.3% of middle-aged women begin informal caregiving for parents and parents-in-law, respectively, whereas the impact on residential arrangement with parents or work status was non-significant or rather limited. OPNC raised middle-aged women' K6 scores (range: 0-24) by 0.368 (SE: 0.061) and 0.465 (SE: 0.073) for parents and parents-in-law, respectively, and informal caregiving mediated those impacts by 37.7% (95% CI: 15.6-68.2%) and 44.0% (95% CI: 22.2-75.4%), respectively. By contrast, the mediating effect of residential arrangement with parents or work status was non-significant.; Conclusions: Results underscore the fact that OPNC tends to promote middle-aged women to begin informal caregiving and worsen their psychological distress.

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The last taboo: The experience of violence in first-episode psychosis caregiving relationships

Objectives: Informal caregiving relationships play an important role in facilitating recovery outcomes in psychosis. The relationship can serve as a source of positive experiences that co-exist alongside common challenges typically associated with mental health problems. People with psychosis, when compared to the general population, are more likely to perpetrate acts of violence, a relationship that is particularly evident during the first psychosis episode. Although victims of service user violence are typically people already known to them, such as informal carers, there remains a lack of understanding about their caring experiences and needs. This study sought to address gaps in the literature by exploring the subjective accounts of informal carers supporting a relative experiencing their first episode of psychosis who has also behaved violently towards them.; Design: A cross-sectional design was employed.; Methods: Individual semi-structured interviews, which were audio recorded and later transcribed for analyses, were undertaken with a convenience sample of eight carers drawn from a specialist early psychosis service. Interview questions focused on their experiences of patient violence, the subjective impact, and coping strategies. An interpretative phenomenological approach was used to analyse the data.; Results: Participants were mostly living with their relative with psychosis and were typically female, parents, and from a black and minority ethnic background. Data analyses identified seven key themes from participant interviews including the lack of predictability over when the violence occurred, being scared and fearful, keeping quiet about what happens at home and in the caregiving relationship, and staying safe.; Conclusions: Reports by informal carers about experiencing violence and victimization from their relatives with psychosis are an important issue in some caregiving relationships during the first episode. Developing a more informed understanding of the specific needs of these carers and the caregiving relationship is indicated. The implications for service providers are discussed.; Practitioner Points: Carers were exposed to a broad range of patient violence, which included being kicked and having weapons used against them. The violence typically occurred within carers' homes, when no other people were around. Patient violence impacted negatively on carer emotional and physical functioning, which included leaving carers living in fear of their own safety and what might become of their relative. The results highlight the importance of routinely asking first-episode carers about their experience of patient violence. The development of interventions (e.g., identification of early triggers, de-escalation) that are able to take account of the ongoing nature and complexity of the caregiving relationship but are purposefully aimed at supporting carers to remain safe in their relationship should be explored for their impact.

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Care Arrangements in Dementia Care Networks: Findings From the DemNet-D Study Baseline and 1-Year Follow-Up

Objective: This study was conducted to describe care arrangements for persons with dementia (PwDs) who are living at home with the support of a dementia care network (DCN).; Method: Data on the utilization of formal and informal support were collected in face-to-face interviews at baseline and 1-year follow-up with PwDs and caregivers receiving support from 1 of 13 DCNs.; Results: Men with dementia were supported by twice as many informal caregivers as women (2 vs. 1, respectively, p < .001). Regional differences were found in home-care nursing services, social care groups, companion home services, and day care. The care situations were considered stable by most caregivers.; Discussion: DCNs appear to contribute to a high degree of perceived stability in care situations. Future research should investigate possible gender differences in informal support networks. DCNs should continue their efforts in making low-threshold services in rural areas available and accessible.

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Labor supply effects of long-term care reform in Germany

Many informal caregivers are of working age, facing the double burden of providing care and working. Negative labor supply effects can severely reduce the comparative cost advantage of informal over formal care arrangements. When designing long-term care (LTC) policies, it is crucial to understand the effects not only on health outcomes but also on labor supply behavior of informal caregivers. We evaluate labor supply reactions to the introduction of the German long-term care insurance in 1995 using a difference-in-differences approach. The long-term care insurance changes the caregivers' trade-off between labor supply and care provision. The aim of the reform was to strengthen informal care arrangements. We find a strong negative labor supply effect for men but not for women. We argue that the LTC benefits increased incentives for older men to leave the labor market. The results reveal a trade-off for policy makers that is important for future reforms-in particular for countries that mainly base their LTC system on informal care.

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Sex disparities in access to caregiving in Parkinson disease

Objective: To compare access to caregiving between men and women with Parkinson disease (PD).; Methods: This was a cross-sectional and longitudinal study among participants with PD enrolled in the National Parkinson Foundation Parkinson's Outcomes Project from 2009 to 2014 at 21 international sites. The primary outcome measures were presence of a caregiver at the baseline visit, caregiver burden as measured by the Multidimensional Caregiver Strain Index (MCSI) at baseline, and time to first paid caregiver.; Results: A total of 7,209 participants (63% men, 37% women) with PD were evaluated. Men had a mean age of 66.0 (SD 9.8) years, and women had a mean age of 66.9 (SD 9.7) years. More men than women had a caregiver (88.4% vs 79.4%, p < 0.0001). Caregivers of men reported greater strain than those of women (MCSI score 19.9 vs 16.4, p < 0.0001). These differences persisted after controlling for age, disease stage, number of comorbidities, cognitive and mobility measures, and health-related quality of life. In addition, the odds of caregiver accompaniment at baseline visit were lower for women compared to men (odds ratio 0.76, 95% confidence interval [CI] 0.67-0.86), and women had a faster rate to using a paid caregiver than men (hazard ratio 1.76, 95% CI 1.35-2.28) after controlling for potential confounders.; Conclusions: Informal caregiving resources are lower for women than men with PD, despite the finding that their caregivers report less strain than those of men. In addition, women are more likely to use formal, paid caregivers. Strategies to improve access to caregiving, particularly for women, are needed.

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Explaining the Gender Gap in the Caregiving Burden of Partner Caregivers

Objectives: We examine gender differences in the experienced burden of partner caregivers using the stress-appraisal model. Gender differences can be explained by differences in conditions of burden (primary stressors, help from others, hours of caregiving, and secondary stressors) and how strong their effects are.; Method: The data are from the Netherlands' Older Persons and Informal Caregivers Survey-Minimum Data Set (N = 1,611 caregivers). We examine mediation and moderation effects using structural equation modeling.; Results: Women experience greater partner caregiver burden than men, which is related to women experiencing more secondary stressors (relational and financial problems, problems combining different tasks). For women and men alike, there is a positive association between burden and more primary stressors (partner's care need indicated by health impairment), help from other caregivers, and secondary stressors. For male caregivers, caregiving intensity also contributes to a greater burden.; Discussion: This study corroborates the structural impact of gender on the conditions of as well as their effects on the partner caregiver burden. Reducing the hours of caregiving for male caregivers in severe care situations and helping female and male caregivers deal emotionally with the caregiving situation can reduce the partner caregiver burden.

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Coping and adjustment in informal male carers: A systematic review of qualitative studies

Informal caregivers represent a significant proportion of the population. This can be a challenging role associated with adverse psychological outcomes. Gender can have important influences on choice of coping strategies; however, male caregivers have been a relatively understudied group in this regard. A systematic review of qualitative studies was conducted to synthesize research on male carer self-initiated coping strategies. A total of 16 studies met inclusion criteria for the current review. Caregiving in the context of neurological conditions was a key focus of studies, as was a focus on older male carers. Data on coping strategies were extracted and summarized under 4 metathematic categories: Finding meaning and purpose; creating new behaviors, roles, and identities; maintain status quo and utilize existing resources; promoting masculinities and taking charge. The findings of the current review suggest that men employ various coping strategies, many of which can be conceptualized as adopting either a traditional or flexible approach to gender role socialization. The implications for the review are discussed, along with directions for future research.

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Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline

Objectives: This paper aimed to describe the burden experienced by informal caregivers supporting a person with dementia (PwD) who lives at home and utilizes a dementia care network (DCN), to investigate the factors that are associated with caregiver burden, and to identify possible differences in caregiver burden among different types of DCNs.; Method: This study was part of a multi-center, interdisciplinary evaluation of DCNs in Germany (DemNet-D). Cross-sectional data were collected in face-to-face interviews with people with dementia (PwDs) and their caregivers, and 13 DCNs were represented. Standardized questionnaires were used to assess caregiver burden, challenging PwD behaviors, functional competence and caregiver health status. Based on qualitative data, four DCN governance types were used in a multivariate analysis of burden categories.; Results: There were 560 PwD-caregiver dyads enrolled in the study. Informal caregivers (n = 536) reported a low-to-moderate burden associated with PwD characteristics (instrumental activities of daily living, challenging behaviors) and caregiver characteristics (gender) as well as the relationship between the caregivers and PwDs. Women felt more burdened but also showed higher levels of personal development. No differences were observed among the different DCN governance types.; Conclusions: DCNs might contribute toward moderate to low caregiver burden. Indicators of positive caregiving aspects can be used by DCNs to advance support structures for informal caregivers drawing upon interventions already established for other community settings. Particular interest should be paid to female and spousal caregivers who might be in in need of greater and/or different kinds of support.

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Caregivers' Support Network Characteristics Associated with Viral Suppression among HIV Care Recipients

Informal care receipt is associated with health outcomes among people living with HIV. Less is known about how caregivers' own social support may affect their care recipient's health. We examined associations between network characteristics of informal caregivers and HIV viral suppression among former or current drug using care recipients. We analyzed data from 258 caregiver-recipient dyads from the Beacon study, of whom 89% of caregivers were African American and 59% were female. In adjusted logistic regression analysis, care recipients had lower odds of being virally suppressed if their caregiver was female, was caring for youth involved in the criminal justice system, and had network members who used illicit drugs. Caregivers' greater numbers of non-kin in their support network was positively associated with viral suppression among care recipients. The findings reveal contextual factors affecting ART outcomes and the need for interventions to support caregivers, especially HIV caregiving women with high-risk youth.;

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Will you still need me, will you still feed me when I'm 64? The health impact of caregiving to one's spouse

Informal care may substitute for formal long-term care that is often publicly funded or subsidized. The costs of informal caregiving are borne by the caregiver and may consist of worse health outcomes and, if the caregiver has not retired, worse labor market outcomes. We estimate the impact of providing informal care to one's partner on the caregiver's health using data from the Survey of Health, Ageing, and Retirement in Europe. We use statistical matching to deal with selection bias and endogeneity. We find that in the short run caregiving has a substantial effect on the health of caregivers and, for female caregivers, on their health care use. These effects should be taken into account when comparing the costs and benefits of formal and informal care provision. The health effects may, however, be short-lived, as we do not find any evidence that they persist after 4 or 7 years.;

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High perceived caregiver burden for relatives of patients following hip fracture surgery

Purpose: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery.; Methods: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed at four points during 1 year following hip fracture surgery in a regional hospital in southern Spain. The perceived caregiver burden was assessed using the Caregiver Strain Index (0-13 points).; Results: The mean (Standard Deviation) age of the 172 caregivers was 56 (13) years, of which 133 (77%) were woman and 94 (55%) were daughters of the patient. Seventy-nine of the 172 (46%) caregivers perceived a high level of burden (≥ 7 points on the Caregiver Strain Index) at the hospital. The corresponding numbers with perceived high level of burden at 1-month, 3-months, and 1-year were 87 (50%), 61 (36%), and 45 (26%) caregivers. A low pre-fracture functional status, post-operative complications, older age of patients, and younger age of caregivers negatively influence caregiver burden at 1-year.; Conclusions: The main caregiver is predominantly female and is most often the daughter of the patient. New treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture patients during the hospital stay to prepare the process of going back home. The caregivers of older patients, those with a low pre-fracture functional level, and of those who suffered post-operative complications, should receive more attention prior to hospital discharge and receive more assistance at home to reduce caregiver burden.

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Musculoskeletal Symptoms among Family Caregivers of Community-Dwelling Stroke Survivors in Nigeria

Introduction: Caring for stroke survivors may be burdensome with adverse consequences on caregivers' physical health. This study examined the prevalence of musculoskeletal symptoms and associated factors among family caregivers of stroke survivors in Nigeria. Methods: A hospital-based cross-sectional study involving 90 stroke caregiver and stroke survivor dyads was conducted. Data on the participants' demographics and post-stroke duration were obtained. Seven-day prevalence of musculoskeletal symptoms among the caregivers and level of stroke survivors' disability were respectively assessed using the Nordic Musculoskeletal Questionnaire and Modified Rankin Scale. Prevalence of musculoskeletal symptoms was presented as percentages while participants' characteristics associated with prevalence of musculoskeletal symptoms were examined using inferential statistics. Results: Mean (SD) age of caregivers and stroke survivors was 33.2 (10.7) years and 58.9 (9.7) years respectively. Majority of the caregivers were females (61.1%), and children of the stroke survivors (58.9%). Prevalence of musculoskeletal symptoms was 82.2%. The low back was the most affected body region (72.2%) followed by the upper back (40%) while musculoskeletal symptoms in the wrist was least prevalent (3.3%). Female caregivers, caregivers of female stroke survivors and spousal caregivers had significantly higher prevalence of musculoskeletal symptoms compared to other categories of caregivers. Only 5 (5.6%) caregivers had however received any training on safe care giving methods while only 21 (28.4%) caregivers with musculoskeletal symptoms had received treatment. Conclusion: With the high prevalence of musculoskeletal symptoms among family caregivers of stroke survivors, effective preventive strategies including training and education as well as timely access to treatment would be required. 

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A bittersweet relationship: What does it mean to be the caregiver of a patient with bipolar disorder?

Background: As with most of the chronic illnesses, the changes and consequences brought on by bipolar disorder (BD) are not exclusive to the patient and often spread to those around them, especially for direct caregivers of these patients. It is known that there is a significant emotional and physical toll among persons who coexist daily with those who suffer from this disorder. Objective: Aware of the importance of the role played by informal caregivers (especially the family) in the stability and evolution of patients with bipolar disorder, this study seeks to explore the perception that family members responsible for bipolar persons have of themselves as caregivers of these patients. Method: This is a qualitative study using a phenomenological design, for which the technique of focused or semi-structured interviews was employed. Ten caregivers of people with diagnosis of BD agreed to participate. Results: Within the family, it is a single individual who has the role of caregiver. Experiences and meanings that are generated into the nucleus of the patient–caregiver relationship are full of ambivalence and involve many aspects worthy of analysing, such as the development of identities, the feminization of patient care, the process of therapeutic decision-making and the evolution of the disease. Conclusions: It is necessary to integrate evaluation and attention for patients’ caregivers, recognizing them as individuals and elucidating their constructed meanings and the dynamics established in their relationship with patients. In this way, there would be a more integrative clinical approach of the patient–caregiver relationship, considering not only the necessary pharmacological treatments but also accompanying both patient and family, along the path they travel as they experience BD. 

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Long-Term Care Needs in the Context of Poverty and Population Aging: the Case of Older Persons in Myanmar

Myanmar is one of the poorest and least healthy countries in Southeast Asia. As elsewhere in the region, population aging is occurring. Yet the government welfare and health systems have done little to address the long-term care (LTC) needs of the increasing number of older persons thus leaving families to cope on their own. Our study, based on the 2012 Myanmar Aging Survey, documents the LTC needs of persons aged 60 and older and how they are met within the context of the family. Nearly 40% of persons in their early 60s and 90% of those 80 and older reported at least one physical difficulty. Spouses and children constitute the mainstay of the financial and instrumental support of elderly including those with LTC needs. Nearly two-thirds of older persons reported receiving assistance with daily living activities. More than three quarters coreside with children, a living arrangement that in turn is strongly associated with receiving regular assistance in daily living. Daughters represent almost half and spouses, primarily wives, one-fourth of primary caregivers. Unmet need for care as well as inadequate care decline almost linearly with increased household wealth. Thus elderly in the poorest households are most likely to experience gaps in LTC. Given mounting concerns regarding health disparities among Myanmar's population, this pattern of inequality clearly needs to be recognized and addressed. This needs attention now rather than later given that reduced family size and increased migration pose additional challenges for family caregiving of frail elderly in the coming decades. 

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Support groups for Alzheimer’s caregivers: Creating our own space in uncertain times

Older men are often excluded from family caregiving research despite the steady increase in the number of husbands assuming primary caregiving roles. We explored perceptions of older, male caregivers’ experiences with caring for a wife with Alzheimer’s Disease (AD) and examined what aspects of the support group were beneficial. Our qualitative research methods invited six caregivers ranging in age from 74 to 85 years to narratively construct their perspectives on caring for their wives with Alzheimer’s Disease and benefits of participation in an all-male support group. Thematic analyses revealed caregivers faced several transitions. “Losses related to their personal relationships with their wife, family, and self,” captured as loss of golden years. The second area, benefits and improvements of support groups, were captured in the following theme: “creating our own space,” which included two sub-themes: “releasing our frustration” and “developing coping strategies.” There was also “Gendered experience of caregiving.” This study revealed that male caregivers benefited from the support and company of other men in similar caregiving situations. Results from this study have implications for health care professionals for the development of psychosocial educational groups aimed at providing support to male caregivers. 

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Caregiving and Caregiver Burden in Dementia Home Care: Results from the Prospective Dementia Registry (PRODEM) of the Austrian Alzheimer Society

Background: Comprehensive studies on caregiver burden (CB) of persons caring for dementia patients differ methodologically and show variable results.<bold>Objective: </bold>Analysis of known and hypothesized factors of CB in home care of dementia patients. Methods: Multicenter longitudinal study comprising 585 persons caring mostly for Alzheimer's disease patients (age median 77.25 years, Mini-Mental State Examination raw score median 23) using the Zarit Caregiver Burden Interview (CBI). Known patient-related determinants of CB were studied, such as dementia severity (Clinical Dementia Rating, CDR), neuropsychological deficits (CERAD-Plus), neuropsychiatric symptoms (Neuropsychiatric Inventory, NPI), disability (Disability Assessment for Dementia, DAD), dependency (Dependency Scale, DS), and moreover, unclarified potential factors (age, sex, education of patients; age, sex, occupational status of the caregivers; family relationship). Psychological and somatic effects of CB were analyzed (factor analysis). Results: Caregiver age was median 61. Female caregivers prevailed (67.8%). Median CBI sum score (CBIss) was 16 at baseline. After two years, CBIss was 22 and 37% of the caregivers reported mild to moderate (CBIss 21-40), 16.8% moderate to severe or severe (≥41), and 46.2% absent to little CB (CBIss ≤ 20). CB correlated positively with NPI, CDR, DS scores, disability (DAD), years of education of the patients, and proximity of patient and caregiver sex (female), and negatively with caregiver age. Caregivers reported restrictions of time, health problems, and negative emotions. Conclusion: The findings are applicable to identify persons at risk for substantial CB and its consequences. There is demand for personal, psychological, and medical support of caregivers and increasing male participation. 

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Allocating Family Responsibilities for Dependent Older People in Mexico and Peru

This paper applies different analytical frameworks to explore processes of family bargaining about providing care for dependent older people in Mexico and Peru. These frameworks include cultural norms, life course effects and material exchange. The paper is based on 19 in-depth qualitative family case studies, which are linked to a wider set of quantitative survey data. Care arrangements and bargaining processes are revealed to be highly gendered, and largely conform to prevailing cultural norms. Rather than neutral and objective, the self-identified role as main carer is found to be subjective and potentially ambiguous. The few men who self-identify as main carers are more likely to play an indirect, organisational role than engage directly in daily care. As such, bargaining mainly relates to which woman performs the main care role, and large family networks mean that there is usually more than one candidate carer. Bargaining can occur inter-generationally and conjugally, but bargaining between siblings is of particular importance. Bargaining is framed by the uncertain trajectory of older people's care needs, and arrangements are sometimes reconfigured in response to changing care needs or family circumstances. Taking the narratives at face value, the influence of life course effects on bargaining and care arrangements is more obvious than material exchange. There are, however, indications that economic considerations, particularly inheritance, still play an important behind the scenes role. [ABSTRACT FROM AUTHOR]

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‘It’s Like Chicken Talking to Ducks’ and Other Challenges to Families of Chinese Immigrant Older Adults in Long-Term Residential Care

Immigrant older adults are increasingly moving into long term residential care (LTRC) homes; however, most were designed and continue to be run in accordance with Anglocentric norms and values. Participation and interest in Family Councils—through which they might collectively voice concerns—was low within our purposive sample of nine Chinese-origin residents living in LTRC homes and 11 family carers. Our study, conducted in two LTRC homes in British Columbia, Canada between January and March 2016, further explored participants’ perceptions of quality of care by staff and quality of life of residents. Our findings negate participants’ rationale that they do not attend because they have no issues to raise. Solutions must recognize that carers’ time is precious and care-work is gendered; language incongruity and failure to address it marginalizes residents and their family members. A culturally informed reticence to speak out is reinforced when attempts to do so are silenced. 

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Characteristics of informal caregivers who provide transportation assistance to older adults

The study aim was to gain a better understanding of the characteristics of informal caregivers who provide transportation assistance and to explore the types and frequency of this assistance. A telephone survey was administered to a representative sample of 268 informal caregivers (age 45–80) who provide transportation assistance to older adults (age 70 and older) in Michigan. Responses were analyzed overall and by the caregiver sex and care recipient age. Informal transportation caregivers were: most often women; on average 61 years old; generally college educated; employed full- or part-time jobs; relatively healthy; providing care to a parent/family member 1–4 times per week, living close to the care recipient; and providing assistance by giving rides. Less than one-half of caregivers sought information to help them provide assistance. No significant burden was reported and there were few differences by sex of the caregiver of the age group of the care recipient. 

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What Factors Predict Family Caregivers' Attendance at Dementia Cafés?

Background: Dementia Cafés are community support groups which provide post-diagnostic support for families affected by dementia. However, little is known about the characteristics of caregivers who attend Cafés. Objectives: To describe the demographic and psychosocial characteristics of caregivers who attend Dementia Cafés, and to identify which of those factors may influence the likelihood of family caregivers attending Dementia Cafés. Methods: A cross-sectional study on caregivers (n = 80; July 2016- July 2017). Resilience (Brief Resilient Coping Scale), Subjective Wellbeing (Personal Wellbeing Index), and Social Support (MOS-Social Support Survey) were measured. Café attendees and non-attendees were compared in regards to demographic characteristics (Chi-Square tests), resilience, subjective wellbeing and social support (independent t-tests). Bivariate and multivariate regression analyses were run to detect associations between predictor variables and café attendance. Results: Caregivers who attended Cafés reported higher resilience (OR: 1.26; 95% CI 1.10-1.45; p = 0.001) and subjective wellbeing (OR: 1.63; 95% CI 1.24-2.142; p = 0.001); no significant difference in social support was detected. Female caregivers were more likely to attend a Café (OR: 3.23; 95% CI 1.14-9.10; p = 0.03). However, only higher subjective wellbeing (OR: 1.63; 95% CI 1.10-24.2; p = 0.02) and fewer years formal education (OR: 4.99; 95% CI 1.12-21.36; p = 0.03) predicted attendance at a café. Conclusion: Dementia Cafés may bring about benefits in resilience and subjective wellbeing, or may be best suited to those with higher resilience and wellbeing. Cafes are not being accessed by all caregiver groups. Alternative models of post-diagnostic support should be considered to increase equity of care. 

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Changing moralities: Rethinking elderly care in Spain

Demographic and social changes in Europe and OECD countries have increased the number of dependents in recent decades, challenging the organisation of health systems and raising calls for re‐definition of long‐term care services. In Spain the crisis of care has challenged a care regime based strongly on the family. Recent social policies have attempted to address this challenge. This article analyses the ideal of family care expressed by women who have traditionally played the role of caregivers. Reflecting a disruption of previously held moral attitudes throughout society, elderly women manifest new expectations in relation to their own care, redefining the scope of filial obligation and linking it to a renewed notion of independency and autonomy. However, in the current context of financial crisis, family care appears not as a choice, but an undesirable consequence of the lack of public policies. The study applies a theoretical approach based on the anthropology of moralities. 

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Informal Caregiver Stress

Research shows the stressful demands of caregiving to older family members can have negative effects on physical health. The effects on physical health may include: immune system functioning, heart rate reactivity, raised blood pressure levels, and increased risk of mortality among older spousal caregivers. Gender differences in caregivers' outcomes exist because, compared with male caregivers, female caregivers face higher levels of caregiving stressors, have fewer social resources, and report lower levels of psychological and physical health. Gender and education effects on health show that female caregivers experience more stress and have poorer health than male caregivers. African-Americans, unlike White caregivers, are more likely to provide care in collectivist versus individualistic caregiving systems. In the same notion, African-American caregivers are less likely to utilize formal support systems and African-Americans expressed stronger cultural reasons for providing care. 

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Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana

Background: Low and middle income countries face many challenges in meeting their populations' mental health care needs. Though family caregiving is crucial to the management of severe mental health disabilities, such as schizophrenia, the economic costs borne by family caregivers often go unnoticed. In this study, we estimated the household economic costs of schizophrenia and quality of life of family caregivers in Ghana.; Methods: We used a cost of illness analysis approach. Quality of life (QoL) was assessed using the abridged WHO Quality of Life (WHOQOL-BREF) tool. Cross-sectional data were collected from 442 caregivers of patients diagnosed with schizophrenia at least six months prior to the study and who received consultation in any of the three psychiatric hospitals in Ghana. Economic costs were categorized as direct costs (including medical and non-medical costs of seeking care), indirect costs (productivity losses to caregivers) and intangible costs (non-monetary costs such as stigma and pain). Direct costs included costs of medical supplies, consultations, and travel. Indirect costs were estimated as value of productive time lost (in hours) to primary caregivers. Intangible costs were assessed using the Zarit Burden Interview (ZBI). We employed multiple regression models to assess the covariates of costs, caregiver burden, and QoL.; Results: Total monthly cost to caregivers was US$ 273.28, on average. Key drivers of direct costs were medications (50%) and transportation (27%). Direct costs per caregiver represented 31% of the reported monthly earnings. Mean caregiver burden (measured by the ZBI) was 16.95 on a scale of 0-48, with 49% of caregivers reporting high burden. Mean QoL of caregivers was 28.2 (range: 19.6-34.8) out of 100. Better educated caregivers reported lower indirect costs and better QoL. Caregivers with higher severity of depression, anxiety and stress reported higher caregiver burden and lower QoL. Males reported better QoL.; Conclusions: These findings highlight the high household burden of caregiving for people living with schizophrenia in low income settings. Results underscore the need for policies and programs to support caregivers.

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A journey without maps—Understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru

Purpose of the study: Populations in Latin America, Asia and sub-Saharan Africa are rapidly ageing. The extent to which traditional systems of family support and security can manage the care of increased numbers of older people with chronic health problems is unclear. Our aim was to explore the social and economic effects of caring for an older dependent person, including insight into pathways to economic vulnerability. Design & methods: We carried out a series of household case studies across urban and rural sites in Peru, Mexico, China and Nigeria (n = 24), as part of a cross-sectional study, nested within the 10/66 Dementia Research Group cohort. Case studies consisted of in-depth narrative style interviews (n = 60) with multiple family members, including the older dependent person. Results: Governments were largely uninvolved in the care and support of older dependent people, leaving families to negotiate a ‘journey without maps’. Women were de facto caregivers but the traditional role of female relative as caregiver was beginning to be contested. Household composition was flexible and responsive to changing needs of multiple generations but family finances were stretched. Implications: Governments are lagging behind sociodemographic and social change. There is an urgent need for policy frameworks to support and supplement inputs from families. These should include community-based and residential care services, disability benefits and carers allowances. Further enhancement of health insurance schemes and scale-up of social pensions are an important component of bolstering the security of dependent older people and supporting their continued social and economic participation. 

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Care work and care jobs for the future of decent work

Care work and care jobs for the future of decent work is an important contribution to the ILO’s women at work centenary initiative and to the process that the ILO is undertaking to guide its work for social justice as it advances into its second centenary. The women at work centenary initiative began by examining why progress in closing the gender gaps in the world of work had been so slow and what needed to be done for real transformation. The data, research, analysis and surveys all led back to care work. 

Care work – both paid and unpaid – is at the heart of humanity and our societies and economies are dependent on care work to survive and thrive. Across the world, women and girls are performing more than three-quarters of the total amount of unpaid care  work and two-thirds of paid care workers are women. Demographic, socio-economic and environmental transformations are increasing the demand for care workers, who are often trapped in low quality jobs. If not addressed properly, current deficits in care work and its quality will create a severe and unsustainable global care crisis and further increase gender inequalities in the world of work.

Who is going to provide for the increasing care needs in the future? Under what conditions will both unpaid and paid care work be provided? What policies can be put in place  to recognize, reduce and redistribute unpaid care work, create more and  decent jobs for  care workers, and guarantee care workers’ representation, social dialogue and collective bargaining? These are the questions that for the first time are addressed in a comprehensive manner, based on a wealth of research and data.

A high road to care work is within our reach, and the report charts a new road map of quality care work –one in which unpaid carers are able to enjoy the rewards of care provision without paying a high price for it, and care workers have access to decent jobs, which form the bases of quality care services.

The policy environment put forward to achieve good quality care work, grounded in  gender equality, is context specific but feasible. In all instances, care, macroeconomic, social protection, labour and migration policies need to be engineered so as to yield positive outcomes both for those in need of care and those who give care, whether for pay or not. It requires the engagement of governments, employers, workers and their organizations as well as representatives of unpaid carers and care recipients. By providing a  global picture of the care economy from the angle of the world of work, this report builds a compelling and evidence-based case for placing good quality care work as a priority in national policy agendas. Urgent action is needed to pursue the high road to care work if  there is to be a future of work for both women and men that is decent by design.

Video: Investment in the care economy needs to be doubled to avert a looming global care crisis, says a new ILO report Care work and care jobs for the future of decent work . Sweeping changes in policies should address the rising need for care and tackle the huge disparity between women’s and men’s care responsibilities.https://www.youtube.com/watch?v=zVbsM8IvZYY 

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Perceived Stress in Family Caregivers of Individuals With Mental Illness

The current study aimed to measure the stress levels of family caregivers of individuals with mental illness and compare their stress levels according to the diagnosis and other sociodemographic characteristics. The sample comprised 310 family caregivers of individuals with mental illness in Jordan. Family caregivers completed a demographic checklist and the Arabic version of the Perceived Stress Scale 10-Item (PSS-10) questionnaire. A significant difference was found in PSS-10 levels among family caregivers according to gender, diagnosis of their family member, and time since diagnosis. Female caregivers reported significantly higher stress levels than male caregivers. Family members of individuals with schizophrenia reported the highest stress levels (p < 0.001). Results also indicated that there was a significant negative correlation between PSS-10 levels of family caregivers and time since diagnosis. Investigating stress levels in family members of individuals with mental illness may be helpful when designing interventions to reduce such stress. [Journal of Psychosocial Nursing and Mental Health Services, 55(6), 30-35.].; Copyright 2017, SLACK Incorporated.

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Caregiver's quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia

Background: Although the quality of life (QoL) experienced by patients with schizophrenia has been recognized, few studies have assessed the relationship between the caregivers' QoL and patients' QoL.; Methods: The study included 253 stabilized outpatients with schizophrenia and their caregivers from 3 Mental Health Services in Bolivia (N = 83), Chile (N = 85) and Peru (N = 85). Caregivers' and patients' QoL were respectively assessed using two specific QoL questionnaires (S-CGQoL and S-QoL 18). We collected socio-demographic information and clinical data. Multiple linear regressions were performed to determine which variables were associated with patient's QoL. We tested the following hypothesis using structural equation modeling (SEM): caregivers' QoL may have an indirect effect on patients' QoL mediated by their influence of the severity of psychotic symptoms.; Results: In the multivariate analysis, the caregivers' QoL was not significantly associated with the patients' QoL, except for one QoL dimension about relationship with family (Beta = 0.23). Among patients' characteristics, being a woman and Aymara, having lower educational level, unemployment and severity of symptoms was significantly associated to a lower QoL. The SEM revealed a moderate significant association between caregivers' QoL and psychotic symptoms severity (path coefficient = -0.32) and a significant association between psychotic symptoms severity and patients QoL (path coefficient = -0.40). The indirect effect of caregivers' QoL on patients' QoL was significant (mediated effect coefficient = 0.13).; Conclusion: Improvement of caregiver's QoL may have a direct impact on the psychotic symptoms of patients and indirectly on patient's QoL, confirming the need for ongoing family interventions in these regions.;

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Profiles of Alzheimer's caregivers in Spain: social, educational and laboral characteristics

Background A person suffering from dementia needs increasing help from another person, who, in most cases, is a female family member. Times are changing and this traditional role can no longer be maintained. Aim The aim of this research was mainly centred on ascertaining the profile of caregivers and to find out how determinants such as age, sex and educational level and living conditions led people to assume that role. Methods A survey was designed and applied to 925 caregivers (778 of which were analysed) with the collaboration of the Alzheimer's Associations of Andalucía (Spain). Associations gave their ethical approbation for this research prior to the beginning and they informed their members. The participation was entirely voluntary, and caregivers were given the option to withdraw consent. Results Women are the main caregivers in any kind of profile. Males become carers if they are old and the partner of a patient. Males use more external services. Cohabiting and working outside the home increase the use of external support services, and having a higher level of education increases the use of nursing homes. Younger caregivers perceive more intense socio-economic consequences than the general profile. Conclusions Being a caregiver implies limitations to entering the job market and for job promotion. There is a generational gap in the caregiver profile, and more and new support services will be needed. Policymakers should take those into account. 

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Profiles of Alzheimer's caregivers in Spain: social, educational and laboral characteristics

Background A person suffering from dementia needs increasing help from another person, who, in most cases, is a female family member. Times are changing and this traditional role can no longer be maintained. Aim The aim of this research was mainly centred on ascertaining the profile of caregivers and to find out how determinants such as age, sex and educational level and living conditions led people to assume that role. Methods A survey was designed and applied to 925 caregivers (778 of which were analysed) with the collaboration of the Alzheimer's Associations of Andalucía (Spain). Associations gave their ethical approbation for this research prior to the beginning and they informed their members. The participation was entirely voluntary, and caregivers were given the option to withdraw consent. Results Women are the main caregivers in any kind of profile. Males become carers if they are old and the partner of a patient. Males use more external services. Cohabiting and working outside the home increase the use of external support services, and having a higher level of education increases the use of nursing homes. Younger caregivers perceive more intense socio-economic consequences than the general profile. Conclusions Being a caregiver implies limitations to entering the job market and for job promotion. There is a generational gap in the caregiver profile, and more and new support services will be needed. Policymakers should take those into account. 

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Carer Characteristics and Health, Wellbeing and Employment Outcomes of Older Australian Baby Boomers

Supporting caregivers and enabling continued workforce participation are central strategies in Australia's response to an ageing population, however these strategies have potential disadvantages for carers, particularly women, including reduced workforce participation and retirement income, and poorer health status. This paper explores the nexus between paid work and caregiving for Australia's baby boomer cohort as this group faces unprecedented pressures to manage paid work alongside caring longer and more intensively for family members, including grandchildren. A sample of 1261 men and women aged 60 to 64 completed the 2011-12 Life Histories and Health survey, a sub-study of the New South Wales 45 and Up Study. The survey collected data on sociodemographic, psychosocial, life history and health-related variables including caregiving and employment status. Around a third (32.5%) of the sample (52.2% female) were involved in some type of caregiving at the time. Compared to non-carers, carers reported lower workforce participation (45.8% versus 54.7% for non-carers) as well as poorer health, more mobility difficulties, lower quality of life and lower self-rated SES. Carers who also cared for grandchildren were more likely to be in part-time or no paid work compared to other carers. Working carers tended to be more highly educated, have fewer mobility difficulties, better self-rated health and higher SES than non-working carers. Male carers were more likely than female carers to be in full-time or no paid work. Results indicate that reduced workforce participation and health status of caregivers varies by gender and type of caregiving. Policy reforms are recommended to mitigate these adverse consequences on those providing care, their families, employers and the community.

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Physical and psychological health of family carers co‐residing with an adult relative with an intellectual disability

Background: Providing long‐term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well‐being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio‐economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population‐based, longitudinal research is needed.

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Older people from white-British and Asian-Indian backgrounds and their expectations for support from their children

The importance of ties between older people and their children has been widely documented as a fundamental component in the provision and receipt of support. While the reference to such support is usually made in a benign manner, it is overly simplistic to assume that support provided by family members will always and necessarily lead to positive outcomes for older people. A person's perception of the adequacy or quality of support is inevitably influenced by his or her expectation of the type, frequency and source of support preferred or required. Most existing British research on the family support of older people has concentrated on those from the white‐British majority with little cross‐group comparisons. This article reports on in‐depth qualitative research with 17 and 21 older people from white‐British and Asian‐Indian backgrounds respectively. It demonstrates how gender, ethnicity, migration history and a range of other factors interweave in complex manners to affect individuals' expectations for support from their adult children. The findings reveal commonalities and differences within and between groups and demonstrate that the association between expectations of support and resultant sense of well‐being is complicated and is often conditional. Stereotypes within and across groups need to be examined given the observation that while familial norms may be played out differently in different cultural contexts, individuals make sense of and rationalise their expectations for support to take into account the dynamics of changing structures and attitudes.

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Carers in the region: a profile of the West Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.

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The long-term consequences of partnership dissolution for support in later life in the United Kingdom

There has long been an interest in the United Kingdom about whether and how changes in family life affect support for older people, but nevertheless the consequences of partnership dissolution for late-life support have been little researched. Using data from the British Household Panel Study (1991–2003), this study investigated the longitudinal association between partnership dissolution and two types of support for 1,966 people aged 70 or more years: (i) informal support from children in the form of contacts and help (e.g. household assistance including care), and (ii) formal support from community care services (i.e. health visitor or district nurse, home-help and meals-on-wheels). The paper also examines the level of reported support among: (i) all parents aged 70 or more years and (ii) 1,453 unpartnered parents in the same age group (i.e. those lacking the most important source of support in later life: a spouse). We found diversity in the experience of partnership dissolution in the past lives of people aged 70 or more years. Patterns of support varied by the respondent's age, whether partnered, the timing and type of partnership dissolution, and by gender, having a daughter and health status. Overall, however, partnership dissolution did not show the expected detrimental relationship with later-life support. Health needs and increasing age were strongly associated with increases in contact and informal and formal help, regardless of family history.

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Carers in the region: a profile of the North West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.

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Contracting one's family members: the Dutch care allowance

This chapter focuses on systems of payment for social care in the Netherlands where an elaborate system was developed in the 1990s of 'personal budgets', supplied directly to care users and heavily regulated, which enabled them to pay relatives, friends and neighbours for appropriate help. Despite the efficiency and popularity of the PGB (Dutch Care Allowance or personal budget) the Dutch government is committed to reducing the scope and costs of the scheme. The chapter reviews the PGB in 2004, the impact of the subsequent changes and the PGB's uncertain future. Statistics supply background to the demographic context in the Netherlands with formal services assisting approximately half the heavily impaired population aged 55 or over and many fewer with less serious disabilities. The chapter moves on to policy on income, health, care and well being for older people and traces the origins of the PGB. The 2001 'Shifting Boundaries' study interviewed 15 budget holders and 14 helpers. Carers' situations and wages [...]

No effects of a combination of caregivers support group and memory training/music therapy in dementia patients from a memory clinic population

Objectives: To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group.

Method: Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline.

Results: There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment.

Conclusions: The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of ‘treatment as usual’ needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright © 2004 John Wiley & Sons, Ltd.

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Time costs associated with informal care for colorectal cancer: an investigation of the impact of alternative valuation methods

Background: A societal perspective in economic evaluation necessitates that all resources associated with a disease or intervention should be valued; however, informal care time costs are rarely considered.

Objective: We estimated time allocated to care by informal carers of colorectal cancer survivors; and investigated the impact of applying alternative valuation methods to this time.

Methods: Colorectal cancer cases (ICD10 C18-C20) diagnosed 6–30 months previously and identified from the National Cancer Registry Ireland were invited to provide details of informal carers. Carers completed a postal questionnaire. Time estimates per week associated with hospital-related and domestic-related care activities were collected for two phases: diagnosis and initial treatment (initial 3 months) and ongoing care (previous 30 days). Seven valuation scenarios, based on variants of the opportunity cost approach (OCA), and the proxy good approach (PGA), were considered. The base-case was OCA with all carer time valued at the average national wage.

Results: We received 154 completed questionnaires (response rate = 68 %). Average weekly time allocated to caring was 42.5 h in the diagnosis and initial treatment phase and 16.9 h in the ongoing care phase. Under the base-case, average weekly time costs were €295 (95 % CI 255–344) for hospital-related activities and €630 (95 % CI 543–739) for domestic-related activities in the diagnosis and initial treatment phase and €359 (95 % CI 293–434) in the ongoing care phase. PGA estimates were 23 % below the base-case. Only one alternative scenario (occupation and gender-specific wages for carers in paid work and replacement wages for non-working carers) surpassed base-case costs, and the difference was modest.

Conclusions: Overall, significant time is associated with informal caring in colorectal cancer. Different time valuation methods can produce quite different cost estimates. A standardised methodology for estimating informal care costs would facilitate better integration of these into economic evaluations.

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Young caregivers in the end-of-life setting: a population-based profile of an emerging group

Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.

Methods: A population-based analysis of caregivers was performed from piloted questions included in the 2001–2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence.

Findings: Most active care was provided by older, close family members, but large numbers of young people (ages 15–29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking “hands-on” care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief.

Conclusion: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

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Informal home care and labor-force participation of household members.

In Germany, informal home care is preferred to professional care services in the public discussion as well as in legal care regulations. However, only minor importance is ascribed to the opportunity costs caregivers face. Therefore, this article explores the influence home care has on the labor supply of caregivers who cohabitate with the care recipient. I use data from the German Socio-Economic Panel from 2001 to 2007, which allows researchers to merge the characteristics of both groups for the first time. Owing to diverging gender roles, I examine female and male caregivers separately. The results show that having an individual in need of care in the household does not decrease labor supply to an economically relevant quantity. As providing care might be endogenous to the labor-supply decision, I test for endogeneity by using characteristics of care recipients as instruments and I additionally test for sample attrition. Moreover, the panel structure allows me to control for unobserved heterogeneity.

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Searching for LGBT carers: mapping a research agenda in social work and social care

Tentative efforts have been made in UK government policy and through pockets of social work and social care research to recognise how sexuality and gender identity shape the experiences of lesbian, gay, bisexual and transgender (LGBT) individuals providing care to others. In this article, we map the literature base of existing research in the field of LGBT care provision and outline themes of LGBT caring developed from a recent eight-month scoping exercise. Themes were generated from a scoping exercise conducted in England and Wales in which we gathered stakeholders' perspectives, including carers and carer organisations, about future research and problems for LGBT carers through focus groups and semi-structured interviews. We discuss three thematic areas developed from qualitative data: (i) the absent presence of LGBT carers in data collection and monitoring; (ii) the heterosexist responses and heteronormative assumptions encountered by LGBT carers from health and social care professionals, and (iii) efforts to disentangle the needs of transgender people providing care from LGB carers' experiences. To conclude, we identify lessons learnt for future social work research and directions for developing a wider research agenda.

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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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'The Tender Trap': Gender, Part-Time Nursing and the Effects of 'Family-Friendly' Policies on Career Advancement

With the Government promoting flexible and ‘family-friendly’ policies within the NHS, an increase in the number of part-time nurses is imminent, particularly in view of current pro-active recruitment drives in this area. Research, however, indicates that it is mainly female employees who continue to utilise such policies with few male nurses employed on a part-time or flexible basis. Working part-time and taking career breaks, usually because of caring commitments, results in female nurses falling behind male colleagues in terms of career development and promotion prospects, with managers selecting males over females (particularly those who work part-time) regarding functional role allocation in the hospital setting. Based on a recent study of full-time and part-time nurses and their managers in three Outer London NHS Trusts, this paper argues that so-called ‘family-friendly’ policies must target both sexes and that the underlying attitudes of men to childcare and the domestic division of labour must change before the sexes can compete on equal terms in the workplace. Until this happens men will continue to advance the development of their nursing careers more rapidly than women. Already, in a female-dominated area of employment, male nurses form a disproportionate percentage of those in higher grades and management posts.

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Gender differences in intergenerational care in European welfare states

Elderly people with functional limitations are predominantly cared for by family members. Women – spouses and daughters – provide most of this care work. In principle, gender inequality in intergenerational care may have three causes: first, daughters and sons have different resources to provide care; second, daughters and sons respond differently to the same resources; third, welfare state programmes and cultural norms affect daughters and sons differently. In this paper, we address the empirical question whether these three assumed causes are in fact responsible for gender differences in intergenerational care. The empirical analyses, based on the Survey of Health, Ageing and Retirement in Europe (SHARE), reveal that parents in need are in fact more likely to receive care from daughters than from sons. Daughters are more responsive to the needs of their parents than sons and respond differently to the same resources. Gender inequality is highest in countries with a high level of intergenerational care, high public spending on old-age cash-benefits, a low provision of professional care services, high family obligation norms and a high level of gendered division of labour. Welfare state programmes reduce or increase gender inequality in intergenerational care by reducing or increasing the engagement of daughters in intergenerational care. In general, care-giving by sons is hardly influenced by social care policies.

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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.

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Burden and happiness in head and neck cancer carers: the role of supportive care needs

Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).

Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness

Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.

Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

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Living wages and the ‘making work pay’ strategy

Poverty among workers is a perennial problem. Recently there has been much interest in the idea of living wages. As mechanisms to increase wages above the ‘poverty line’, living wages present an alternative to New Labour’s ‘making work pay’ strategy; a combination of minimum wage regulation and means-tested, in-work relief. Through a comparison of living wages and the ‘making work pay’ strategy this paper critically examines both by focusing upon the aims of the two strategies, their ability to deliver higher incomes to workers and their families, and the assumptions upon which the two strategies are based. The paper demonstrates that while the ‘making work pay’ strategy is more sensitive to need than living wages, outside of wider changes in the social relations of capital and gender, the two strategies are similar in buttressing capitalism and institutionalizing stereotypes of women as dependants and carers.

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The support of parents in old age by those born during 1945-1954 : a European perspective

In 2004 in Europe, more than two-thirds of those born during 1945–54 had a parent or parent-in-law alive, and the rates of co-residence with their ascendants ranged from less than four per cent in Sweden, Denmark and The Netherlands, to between 17 and 24 per cent in Italy, Spain and Greece. The proportions that had provided practical help to their parents during the previous 12 months had a north-south gradient, from approximately one-in-three in the northern countries to 15 per cent or less in the southern countries. In contrast, the proportions of the helpers that provided regular and almost daily help had an inverse pattern, being low in Sweden and Denmark and much higher in the south. Some of these differences may be attributable to variations among the countries in the interpretation of ‘help’. Help to elderly parents tends to be most associated with the gender of givers and receivers, the living arrangements, geographical proximity and needs of the parents, and the availability of adult children who can help. There is little evidence of a specific ‘baby-boomer generation’ effect on the probability of giving help.

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Family caregiver knowledge of treatment intent in a longitudinal study of patients with advanced cancer

Goals of work: Caregivers have become part of a triad of care and frequently attend patient consultations in the ambulatory cancer setting. Effective caregiving and decision making require that they understand the course of the disease and the changing treatment goals. This study sought to evaluate caregiver perception of treatment intent.

Patients and methods: A cohort of 317 subjects (181 patients and 136 caregivers) from The Canberra Hospital's Cancer Services were followed for 6 months. Caregiver understanding of patient treatment intent was measured over time together with sources of information.

Main results: Most caregivers understood that the illness was life-threatening (92% at week 12) and that treatment goals were to control illness and improve quality of life. Only half understood that treatment was noncurative (48% at week 12); 27% were unsure and 25% believed that treatment would cure. A high proportion of caregivers identified the specialist as the source of information (77%) and almost half also included the general practitioner (47%). These figures remained fairly constant over time. There were significant gender and age differences in understanding. At baseline, more women than men had an accurate perception of treatment intent and these numbers increased over time. Men's perception did not change.

Conclusions: Caregivers' ability to fully engage in the task of caring for those with a terminal illness may be hampered by their lack of understanding of the treatment patients receive.

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Elasticity of care networks and the gendered division of care

The gender gap in family care-giving is an established research finding: men dedicate less time to care-giving and provide specific gendered types of help. This article argues that in order to grasp men's contribution to care arrangements one should recognise the multifaceted nature of care and examine care networks beyond the ‘care receiver–primary care-giver’ dyad with a dynamic perspective. A qualitative analysis of the care networks of three large Dutch families with an older parent in need of care confirms the greater involvement of women in care-giving and men's tendency to provide specific types of care. However, men also contribute to the elasticity and stability of the care arrangement by filling temporary gaps and supporting the female care-givers. This article puts forward the idea that men's contribution is in turn a factor in the perpetuation of the gendered structure of care-giving.

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The relationships between depression and other outcomes of chronic illness caregiving

Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).

Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.

Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.

Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

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Caregiving patterns in rural Andean Colombia

Are there local cultural ideals of filial caregiving responsibility - a type of repayment of a debt to parents - and do they differ by gender? How are filial caregiving responsibilities allocated among siblings in such instances, and how do they fit cultural ideals? Is caregiving negotiated among siblings; and if so, how? This qualitative study conducted in rural Andean Colombia is based on a sample of thirty-eight interviews differentiated by gender and employment in the (formal and informal) labor market, with individuals who have at least one parent in need of care and at least one living sibling of the opposite gender. The study explores the cultural definition of caregiving, the ideal norms of who should care for parents, and the actual gendered patterns of caregiving. This interdisciplinary study expands existing research in the health and social sciences by exploring the pathways to becoming a caregiver.

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Social support in the case of illness: intergenerational solidarity

Background: Social support received through different forms of help from members of one's social network is an important element of coping with illness. In the case of illness, family members are the main providers of support, both within the same generation, but also, and increasingly so, between generations. This informal social support is related to socio-economic conditions of individuals: it is more common in lower economic and educational groups. Members of the middle generation, who help both the young and the old, are the main support providers. Also, female gender is the most significant predictor of the care burden. Withdrawing role of the welfare state in the postmodern society means shifting more responsibilities for care from the formal to informal sector. The aim of our study was to look into the characteristics of intergenerational support in illness in Slovenia. Methods: A cross-sectional study on personal support networks of the residents of Slovenia, sample size 5013, data collection by computerassisted telephone interviews, respondents above 18 years of age. Multiple Classification Analysis (MCA) was used for data analysis to find out how much the dependent variable deviated from the mean as a result of a given respondent characteristic while controlling for the effects of all others. Results: The analysis showed the proportion of respondents’ social network that would provide support in the case of illness and could be defined as intergenerational network. Intergenerational ties represent about 35 % of the whole support netork in illness. The most frequent receivers are the youngest group of respondents (18–29), followed by the 60+ age group. Women receive more help than men, especially those who are widows, living alone or living in multigenerational households. Intergenerational support is more frequent among the less educated respondents. Discussion: Our results comply with the findings in the literature, and are indicating that the actual trends in the changing structure and composition of the family, combined with less support from institutional health- and social care, is increasing the care burden of the informal carers within families. Conclussions: Health and social care policy and practice need awarness of the contextual factors of health care outcomes, taking into consideration social support networks’ functions.

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Gender differentials on the health consequences of care-giving to people with AIDS-related illness among older informal carers in two slums in Nairobi, Kenya

Informal caregivers, most often older people, provide valuable care and support for people ill due to AIDS, especially in poor-resource settings with inadequate health care systems and limited access to antiretroviral therapy. The negative health consequences associated with care-giving may vary depending on various factors that act to mediate the extent of the effects on the caregiver. This paper investigates the association between care-giving and poor health among older carers to people living with AIDS, and examines potential within-gender differences in reporting poor health. Data from 1429 men and women aged 50 years or older living in two slum areas of Nairobi are used to compare AIDS-caregivers with other caregivers and non-caregivers based on self-reported health using the World Health Organization disability assessment (WHODAS) score and the presence of a severe health problem. Women AIDS-caregivers reported higher disability scores for mobility and the lowest scores in self-care and life activities domains while men AIDS-caregivers reported higher scores in all domains (except interpersonal interaction) compared with other caregivers and non-caregivers. Multiple regression analysis is used to examine the association of providing care with health outcomes while controlling for other confounders. Consistently across all the health measures, no significant differences were observed between female AIDS-caregivers and female non-caregivers. Male AIDS-caregivers were however significantly more likely to report disability and having a severe health problem compared with male non-caregivers. This finding highlights a gendered variation in outcome and is possibly an indication of the differences in care-giving gender-role expectations and coping strategies. This study highlights the relatively neglected role of older men as caregivers and recommends comprehensive interventions to mitigate the impact of HIV and AIDS on caregivers that embrace men as well as women.

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Caring for Elder Parents: A Comparative Evaluation of Family Leave Laws

As the baby boomer generation ages, the need for laws to enhance quality of life for the elderly and meet the increasing demand for family caregivers will continue to grow. This paper reviews the national family leave laws of nine major OECD countries (Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Spain, and the United Kingdom) and provides a state-by-state analysis within the U.S. We find that the U.S. has the least generous family leave laws among the nine OECD countries. With the exception of two states (California and New Jersey), the U.S. federal Family Medical Leave Act of 1993 provides no right to paid family leave for eldercare. We survey the current evidence from the literature on how paid leave can impact family caregivers' employment and health outcomes, gender equality, and economic arguments for and against such laws. We argue that a generous and flexible family leave law, financed through social insurance, would not only be equitable, but also financially sustainable.

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Cash for care in the French welfare state: a skilful compromise?

The French system of social care policy for dependent older people is an allowance known as the Prestation Specifique Dependance (PSD) from January 1997 to December 2001 and subsequently the Allocation Personalisee a l'Automie (APA) from January 2002 for services or to pay a member of the family. The chapter covers demographic factors underlying this policy development with statistical tables, and the two principal stages of French social care policy, examining the impact of these on carers who may be either formal (paid) or informal (unpaid). The development in France of a policy relating to frail older people has been very slow with the political debate comprising four main issues - compulsory or optional insurance, funding and management, the relationship of the different welfare sectors and the relationship between the family, the market and the state. The development of the PSD and its characteristics and take-up rates are explored. The policy was much delayed provoking intense dissatisfaction from [...]

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Shadow Times: The Temporal and Spatial Frameworks and Experiences of Caring and Working

In this article we explore temporal and spatial frameworks for analysing the experience of combining caring for children with participation in paid work. We highlight the pressure to undertake paid employment routinely, which places particular strains upon people who are most likely to have to combine caring and working. The authors assert that mothers continue to have the main responsibility for the organization, if not the conduct, of caring work (Sevenhuijsen, 1998). Traditional assumptions about the seeming relationship between femininity and caring remain relatively intact, despite major shifts in family formation, women’s participation in the labour market and debates about the changing role of men (Cancian and Oliker, 1999; Lister, 1997). Drawing upon the work of Adam (2000) on timescapes we develop the notion of caringscapes as a means by which the processes of combining caring and working may be theorized and also incorporated into UK government policy related to caring (whether directly or indirectly). We draw attention to the inadequacy of public policy that does not incorporate an awareness of the demands of the everyday across the lifecourse, of which a spatial-temporal component should be fundamental. The authors propose a caringscape perspective as a basis for both future research and policy developments and conclude that an enhanced recognition of the fluidity and praxis of caring and gender is necessary to support the evolving roles of parents, especially mothers who combine caring and working.

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Focus on home: what time-use data can tell about caregiving to adults

This study analyses data from Statistics Canada's 1998 social survey of 10,749 people to learn more about the nature and situation of Canadian adults providing care at home to other adults. Data included time-use and respondents' sociodemographic, cultural, work, and leisure characteristics, as well as outcome factors. The analyses found 212 respondents (about 2 percent) providing personal, medical, or other care to other household adults on the day studied. Carers were compared to those not found to provide these services. The article explores time-use trade-offs, feelings of stress, and the ramifications of gender, age, and paid work in this newly reemerging use of household space.

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End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals

Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors. There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.

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Trends in informal care in Great Britain during the 1990s

The population of adult carers in Great Britain declined during the 1990s while the proportion of those heavily involved in providing informal care increased. The intensification of care-giving was associated with an increasing number of caring relationships that typically make heavy demands on the carer: spouse care and caring for a child or parent. The provision of informal care by friends and neighbours diminished resulting in an overall decline in care-giving between households. However, parents were increasingly looked after in their own homes by non-resident daughters. More women than men withdrew from the less intensive care-giving between households while more men than women took on the role of a spouse carer. By the end of the decade, as many men as women provided informal care for a spouse or partner. If the trends identified here continue beyond the study period, increasing resources will be required to identify heavily involved carers, assess their needs, and support them in their caring activities. The findings are based on secondary analysis of the British Household Panel Survey covering the years 1991–1998. As well as charting trends in the prevalence of informal care, changes in the locus of care, the number of care recipients, their relationship to their carer and the amount of time devoted to caring activities are described and interpreted.

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Nursing support and caregiver strain

Objective. To examine the possible association between satisfaction with nursing support and the risk of caregiver strain in informal carers in four Basic Health Areas in Barcelona from 2001 to 2002. Method. An observational, descriptive, cross-sectional study was performed. Subjects were 65 informal carers of both sexes of individuals aged 65 years or older with chronic or terminal diseases, or dementia. Carer-related variables were: age, gender, family relationship with the patient, degree of burden, risk of abandonment, and satisfaction with nursing support. Patient-related variables were: age, gender, type the disease, and degree of dependency. To evaluate the degree of burden in the informal carer, the Zarit scale was used. Results. The mean age of informal carers was 60 years, and most were women (56; 86%). Informal carers had a mean score of 61.20 points on the Zarit scale (SD = 16.50; 95% confidence interval, 57.11-65.29). There were 42 (65%) informal carers at risk of caregiver strain (65%). No statistically significant differences were found between satisfaction of the informal carer and the risk of caregiver strain. Conclusions. The profile of the informal carer corresponds to women with a high level of satisfaction with nursing support and a high risk of caregiver strain.

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Caring together: the carers strategy for Scotland 2010-2015

The Scottish Government and COSLA are determined to ensure that carers are supported to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside of caring. We are pleased to have worked together with a range of interests, including Health Boards, the national carer organisations and carers in developing this strategy. It will build on the support already in place and take forward the recommendations of the landmark report, Care 21: The Future of Unpaid Care in Scotland. We recognise carers as equal partners in the delivery of care in Scotland and fully acknowledge carers’ expertise, knowledge and the quality of care they give. With appropriate support, especially support delivered early to prevent crisis, caring need not have an adverse impact on carers. Caring Together sets out 10 key actions to improve support to carers over the next five years. The focus is on improved identification of carers, assessment, information and advice, health and wellbeing, carer support, participation and partnership. In support of this agenda, the Scottish Government is pleased to announce an investment of a further £1 million in 2010-11 to voluntary sector organisations to provide more innovative short breaks provision in Scotland. The strategy sits within a wider context and reform agenda, with carers at the heart of this agenda. In order to achieve lasting change both for carers and the people they care for, we need to drive forward a range of policy developments, such as action to tackle health inequalities and household income. We need to do more to shift resources from institutional care to care at home, including support for carers. The Reshaping Care for Older People Strategic Delivery Plan, which is in preparation, will articulate the extent of the shift in resources within the system.

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To work or to care? Working women's decision-making

Recent changes in older people's public care services in Nordic countries in particular in Finland and Sweden are based on implicit expectations that family members will increase their involvement in care. In Nordic countries, the care of small children has been acknowledged to be a social matter that concerns gender equality and the work life participation of both men and women, while the situation of working carers of older people is much less acknowledged. This study addressed the question of how Finnish working women who give care to their older parents argue for and against their decisions of working and caring and the meaning of work and care in these decisions. Majority of the interviewees emphasised the importance of work and refuted the idea of leaving work for care. The decision not to leave work for care was justified with worker identity, commitment to work, having no innate skills to be a carer, availability of support services and other carers and financial necessity. On the other hand, a few interviewees brought forward their willingness to leave work which was justified by constructing care as meaningful and valuable activity as opposed to meaningless paid employment, and with the intensification of work, and with ageing. Lengthy argumentation and several discursive tools indicate that women anticipated moral blame for the decision of giving work primacy over care, but also for leaving work. Thus, working carers balance between contrasting expectations to care and to work.

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The Business of Caring: Women's Self-Employment and the Marketization of Care

Our goal in this article is to contribute to a differentiated analysis of paid caring work by considering whether and how women's experiences of such work is shaped by their employment status (for example, self-employed versus employee) and the nature of care provided (direct or indirect). Self-employed care workers have not been widely studied compared with other types of care workers, such as employees providing domestic or childcare in private firms or private homes. Yet their experiences may be quite distinct. Existing research suggests that self-employed workers earn less than employees and are often excluded from employment protection. Nonetheless, they often report greater autonomy and job satisfaction in their day-to-day work. Understanding more about the experiences of self-employed caregivers is thus important for enriching existing theory, research and policy on the marketization of care. Addressing this gap, our article explores the working conditions, pay and levels of satisfaction of care workers who are self-employed. We draw on interviews from a small-scale study of Canadian women engaged in providing direct care (for example, childcare) and indirect care (for example, cleaning).

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Give me a break! Informal caregiver attitudes towards respite care

Background/objective: Because informal health care is now recognized to be indispensable to health care systems, different forms of respite care have been developed and publicly funded that supposedly alleviate caregivers’ perceived burdens and help prolong the care giving task. Nonetheless, the use of respite care services is low even among substantially strained caregivers. To throw light on this low usage, this paper explores the associations between attitudes towards respite care, characteristics of the care giving situation, and the need and use of respite care.

Method: The survey, administered to a sample of 273 informal caregivers, addressed caregiver, care recipient, and care giving situation characteristics, as well as the familiarity and use of respite care services. It also included a sub-set of 12 statements eliciting attitudes towards respite care from an earlier study [Van Exel NJA, De Graaf G, Brouwer WBF. Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy 2007;83(2/3):332–42]. Associations between variables were measured using univariate statistics and multinomial logistic regression.

Results: We found three caregiver attitudes, distributed fairly equally in the sample, that are apparently associated with caregiver educational level, employment status, health and happiness, as well as care recipient gender, duration and intensity of care giving, relationship, co-residence, need for surveillance, and subjective burden and process utility of care giving. However, the relation between attitude and familiarity with and use of respite care services is ambiguous.

Conclusions: Although further exploration is needed of the mix of Q-methodology and survey analysis, the overall results indicate that a considerable portion of the caregiver population needs but does not readily ask for support or respite care. This finding has important policy implications in the context of an ageing population.

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Gender differences as regards the place of death

Background: The place of death is not the same for men and women. Men have more opportunities for dying at home because of the availability of women as informal carers. In this study we analyse changes in the place of death in the past twenty years. Method: The research population consisted of all patients in four general practices of the Continuous Morbidity Registration who died between 2000 and 2005 inclusive. The following data were collected: place of death, cause of death, acute death or death after a terminal phase, presence of professional care and presence of informal care. We asked the patients' GPs about the informal carers. Results: During the research period 433 persons died. Men died more often at home: 55% versus 35% of women. Gender differences have grown when compared to the figures for 1987. Male cancer patients died three times more often at home than did women. Women died more often in a nursing home or in a home for the elderly. Informal care still is predominantly the job of women. Conclusions: Men die more often at home than women and this gender difference has increased in the last 20 years. Informal care is still predominantly performed by women. The presence of a woman is still a prerequisite for dying at home.

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Socio-economic status differences in older people's use of informal and formal help: a comparison of four European countries

This study investigates the variations by older people's socio-economic status (SES) (i.e. educational level and social class) in the use of informal and formal help from outside the household in Great Britain, Italy, Belgium and The Netherlands. In all these countries, it was older people in low SES groups who mostly used such help. Multinomial logistic regression analyses showed that, in each country and for both types of help, there were SES gradients in the utilisation of both formal and informal care, and that differences in age, health and marital status largely accounted for the former but not the latter. Cross-national differences in the use of both informal and formal help remained when variations in sex, age, SES, health, marital status, home ownership and the use of privately-paid help were taken into account. Significant interaction effects were found, which indicated that older people in low SES groups in Great Britain and The Netherlands had higher odds of using informal help from outside the household than their counterparts in Italy, and similarly that those in The Netherlands were more likely to use formal help than their Italian peers. The results are discussed in relation to the cultural differences and variations in the availability of formal services among the countries.

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Thinking about the production and consumption of long-term care in Britain : does gender still matter?

This article suggests that the literature on care, which originally was heavily influenced by a gendered perspective, has now taken on other important variables. However, it is argued that if we look at the particular impact of the marketisation and privatisation of long-term care, we can see that gender is still a useful perspective on the production of care, especially paid care. The reordering of the delivery of domiciliary care within the ‘mixed economy of welfare’ is having important effects on the labour market for care and is likely to lead to further inequalities between women, both now and in old age. The article proceeds to look at the impact of these inequalities on the consumption of care in old age, particularly by elderly women and considers factors that may provide women with the resources to purchase care and/or pay charges for care. The article argues that gender does still matter, but that its impact has to be understood within a context of growing inequalities between women, and an analysis that takes account of wider social and economic relations within kin networks and between generations.

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Gender, caring and employment in Britain

Employment and social policies continue to be based upon a gender template that assumes women, especially mothers, are or should be natural carers. Invariably, policies that seek to promote women's entry to paid work do so by facilitating their management and conduct of caring work, thus reinforcing the gender template. In addition, contemporary debates around concepts of citizenship emphasise the obligation to paid employment but fail to tackle the gendered division of caring activities and organisation of care. Enhanced access to childcare merely recreates the gender template by promoting low paid jobs for women as paid carers who are predominantly providing care services for other women. The provision of unpaid paternity leave is unlikely to challenge the strong association between femininity, mothering and care work.

In this article we explore notions of caring, home and employment. It is argued that ambivalence exists amongst policy makers, employers, and society more generally, towards the gendered nature of caring and the implications of this for women, and men who wish to care, who are in paid employment. These are old issues and the authors consider why change in social and public policies is so slow. The authors argue that a consideration of gender and equality principles, currently largely absent from welfare and employment policies, and debates on notions of citizenship, should form the basis for the development of future strategies to support parents and children.

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Burden on caregivers of people with schizophrenia: comparison between Germany and Britain

Background Burden on the relatives of patients with schizophrenia may be influenced not only by patient and caregiver characteristics, but also by differences in mental health service provision.

Aims To analyse whether family burden is affected by national differences in the provision of mental health services.

Method Patients with schizophrenia and their key relatives were examined in Germany (n=333) and Britain (n=170). Differences in family burden in both countries were analysed with regression models controlling for patient and caregiver characteristics.

Results Family burden was associated with patients’symptoms, male gender, unemployment and marital status, as well as caregivers’coping abilities, patient contact and being a patient’s parent. However, even when these attributes were controlled for, British caregivers reported more burden than German caregivers.

Conclusions National differences in family burden may be related to different healthcare systems in Germany and Britain. Support for patients with schizophrenia may be shifted from the professional to the informal healthcare sector more in Britain than in Germany.

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Caring for our future: reforming care and support: equality analysis

This document sets out how the Department of Health has met the Public Sector Equality Duty during policy development, in line with the five chapters of the White Paper. The chapters are: I am supported to maintain my independence for as long as possible; I understand how care and support works, and what my entitlements and responsibilities are; I am happy with the quality of my care and support; I know that the person giving me care and support will treat me with dignity and respect; and I am in control of my care and support. The analysis draws on available evidence, including the findings from the 'Caring for our future'  engagement and consultation with the care and support community. The final chapters summarises the main likely impacts of the reform of the care and support system on key equality groups (age, carers, disability, gender, race, religion, rural communities, sexual orientation and transgender, socio-economic status) and outlines the next steps for reform.

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Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review

Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.

Aim: This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.

Design: This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.

Data sources: Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.

Results: Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identified

  • Perceived carer control;

  • Mental and emotional well-being;

  • Types and impact of caregiving tasks;

  • Impact of patients’ physical condition;

  • Impact of age/gender/demographic factors;

  • Positive aspects of caregiving.

Conclusions: This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.

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Involving carers from minority ethnic backgrounds in carer-led research

This qualitative pilot study investigated the interest of minority ethnic informal carers, with no previous experience of research, in engaging in carer-led research. Individual face-to-face interviews and focus groups were conducted to explore the understanding and attitudes carers hold to research alongside the motivators and de-motivators to their involvement in carer-led projects. The findings reveal that carers are interested in initiatives with a practical beneficial outcome for carers or those they look after. Black and minority ethnic carers identified interpreter and translation resources, gender sensitivity and flexibility around their involvement as major considerations. Carers perceptions of their transferable skills from personal or professional experiences to research were also closely linked to their willingness to engage in carer-led studies.

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The Gendered Construction and Experience of Difficulties and Rewards in Cancer Care

Women cancer carers have consistently been found to report higher levels of distress than men carers. However, there is little understanding of the mechanisms underlying these gender differences in distress, and a neglect of rewarding aspects of care. We conducted in-depth semistructured interviews with 53 informal cancer carers, 34 women and 19 men, to examine difficult and rewarding aspects of cancer care. Thematic analysis was used to analyze the transcripts. Women were more likely to report negative changes in the relationship with the person with cancer; neglect of self, social isolation, and physical health consequences; anxiety; personal strength and growth; and to position caring as a privilege. Men were more likely to report increased relational closeness with the person with cancer, and the burden of additional responsibilities within the home as a difficult aspect of caring. We interpret these findings in relation to a social constructionist analysis of gender roles.

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The effects of an integrated care intervention for the frail elderly on informal caregivers : a quasi-experimental study

Background: This study explored the effects of an integrated care model aimed at the frail elderly on the perceived health, objective burden, subjective burden and quality of life of informal caregivers.

Methods: A quasi-experimental design with before/after measurement (with questionnaires) and a control group was used. The analysis encompassed within and between groups analyses and regression analyses with baseline measurements, control variables (gender, age, co-residence with care receiver, income, education, having a life partner, employment and the duration of caregiving) and the intervention as independent variables.

Results: The intervention significantly contributed to the reduction of subjective burden and significantly contributed to the increased likelihood that informal caregivers assumed household tasks. No effects were observed on perceived, health, time investment and quality of life.

Conclusions: This study implies that integrated care models aimed at the frail elderly can benefit informal caregivers and that such interventions can be implemented without demanding additional time investments from informal caregivers. Recommendations for future interventions and research are provided.

Trial registration: ISRCTN05748494. Current Controlled Trials  Registration date: 14/03/2013.

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Determinants of burden in those who care for someone with dementia

Objectives: Caregiver burden is a key measure in caregiver research and is frequently used as a baseline measure in intervention studies. Previous research has found numerous factors associated with caregiver burden such as the relationship quality between carer and patient, the patient's cognitive ability, behavioural and psychological symptoms displayed by the patient, caregiver gender, adverse life events to name a few. Many studies have investigated these factors singularly however current thought suggests a multi-factorial role and inter-dependence of these factors. Based on this it was decided to investigate factors associated with caregiver burden using a multiple regression analysis in order to ascertain the predictive quality of these factors of caregiver burden.

Method: Cross-sectional study using validated measures of a patient's cognitive ability, ability to carry out day-to-day tasks and behavioural and psychological symptoms. Caregiver outcomes used are caregiver burden, relationship quality, caregiver confidence, experience of adverse life events, neuroticism, age and gender. Interviews and questionnaires were carried out on 74 patients diagnosed with dementia and their main caregivers from the Midlands of England.

Results: Multiple regression analysis showed that caregiver overload, carer-patient relationship quality, the experience of adverse life events, caregiver gender, caregivers' level of neuroticism, caregiver role captivity and the level of caregiver confidence accounted for over 80% of the variance in caregiver burden.

Conclusion: These results confirm previous correlational research on caregiver burden. Furthermore, due to the use of multiple regression analysis the findings also show factors that are clear predictors of caregiver burden and we offer possible suggestions from these findings on future clinical practice interventions on caregiver burden. Copyright © 2008 John Wiley & Sons, Ltd.

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A gendered approach to workforce participation patterns over the life course for an Australian baby boom cohort

Population ageing and its future implications for governments and individuals have been central to much policy debate and research targeted to retain older people in the workforce. This study identified workforce participation patterns across the adult life course for women and men entering later life, and explored the influences of various early and adult life socio-demographic circumstances. Data were collected from 1261 men and women aged 60 to 64 years in the Life History and Health (LHH) Survey (a sub-study of the Sax Institute's 45 and Up Study, Australia) in 2010–11. LHH provides detailed information on personal histories of paid work, socio-economic resources from childhood (number of books and father's occupation) and adult life factors such as educational attainment, marital histories, childcare and informal caring. Latent class analysis (LCA) was undertaken to identify patterns of workforce participation for participants across their adult life. Significant gender differences were confirmed. Further analysis (LCA with covariates) showed that women who reported having books during childhood, and those who had post-school qualification, were more likely to have mostly been in paid work and less likely to have not been in paid work; while ever partnered women had significantly higher odds of increasing part time work over time. Men who had reported ever having had informal caring activities were likely to have had decreasing participation in paid work over time, and were highly likely to be not in paid work after 55 years. Ever partnered status was protective for being in paid work for men. These findings indicate the need for gender-specific policies and strategies to enable continued workforce participation throughout adult life and into later working years, particularly for people who had fewer social or economic opportunities earlier in life.

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Gender, poverty and social exclusion

Throughout the 20th century women were more vulnerable to poverty than men which continues into the 21st century. These gender differences are explored in a chapter on gender, poverty and social exclusion in a volume giving the results of the millennium Poverty and Social Exclusion (PSE) Survey. Social exclusion exists where one or more of the social sub-systems is not functioning adequately - the economic, social and family and community systems. Women's poverty is linked to caring and domestic work and is related to the control of financial resources in marriage and the family, they are increasingly dependent on their own earnings, generally lower than men's. The disproportionate care of elderly people has more impact on women. The PSE Survey did not explore the views of all members of a household, a significant limitation in this context. The remaining two sections examine gender and poverty, and gender and social exclusion through the lifecourse. The first investigates the lack of socially perceived [...]

Informal caregivers' participation when older adults in Norway are discharged from the hospital

This paper describes the participation of informal caregivers in the discharge process when patients aged 80 and over who were admitted from home to different hospitals in Norway were discharged to long-term community care. Data for this cross-sectional survey were collected through telephone interviews with a consecutive sample of 262 caregivers recruited between October 2007 and May 2009. The Discharge of Elderly Questionnaire was developed by the research team and was designed to elicit data concerning informal caregivers' self-reported perceptions on participation in the discharge process. A descriptive and comparative analysis of Thompson's levels of participation reported by the older generation (spouses and siblings) and the younger generation (adult children and children-in-law, nieces and grandchildren) was undertaken using bivariate cross-tabulations and chi-square tests for association and trend. Analyses showed that the younger generation of caregivers received and provided information to hospital staff to a greater degree than the older generation. Overall, 52% of the informal caregivers reported co-operating with the staff to a high or to some degree. A multivariate logistic regression analysis was used to analyse factors predicting the likelihood of informal caregivers reporting co-operation with hospital staff. The odds of younger generation caregivers reporting co-operation were more than twice as high (OR = 2.121, P = 0.045) as the odds of the older generation. Caregivers of patients with a hearing impairment had higher odds of reporting co-operation (OR = 1.722, P = 0.049) than caregivers of patients with no such impairment. The length of hospital stay, the caregiver's and patient's gender and education level were not significantly associated with caregiver's co-operation. The informal caregivers' experiences with information practices and user participation in hospitals highlight important challenges that must be taken seriously to ensure co-operation between families and hospitals when elderly patients are discharged back to the community.

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Informal carers' health-related quality of life and patient experience in primary care: evidence from 195,364 carers in England responding to a national survey

Background: We aim to describe the health-related quality of life of informal carers and their experiences of primary care.

Methods: Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).

Results: Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.

Conclusions: Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.

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Uncovering an invisible network of direct caregivers at the end of life: A population study

Background: Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends.

Aim: This population study aims to define the people who actually provide care at the end of life.

Setting/participants: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and ‘expected’ death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence.

Results: People of all ages indicated they provided ‘hands on’ care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer.

Conclusion: This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on ‘next-of-kin’ status in research will not identify them.

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Caregiving for the elderly family members as a challenge for men - The hidden and forgotten carers in ageing Europe

The purpose of our research was to investigate male caregiving via a status of being hidden and forgotten in East-Central Europe, where caregiving itself had only lately been emancipated, and only as provided by women. In Poland and in other European countries the gender bias is clear: men provide less care than women, the care is less intensive and of a different character. By desk research, own research interpretation and literature review, the paper addressed informal, family caregiving towards frail older adults performed by men. We examined the assumption that the family was the prime careholder of the aged as imprinted in European psyche and stereotypical expectations that females became the main caregivers. Yet, the demographic forecast showed that informal caregiving for frail adults was inevitably falling on men, as a result of increasing divorce rates and women’s employment. However, this picture is incomplete, making men forgotten or hidden carers. Major findings of our research were to provide a broader discourse on male caregiving and have positive impact with practical after-effects as well as filling gaps in knowledge in several relevant fields

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The Perseverance Time of Informal Carers of Dementia Patients: Validation of a New Measure to Initiate Transition of Care at Home to Nursing Home Care

Background: Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)—the period that the informal carer indicates to be able to maintain current care if the situation remains stable—is an important concept. Objective: The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home. Methods: Data were collected from 223 informal carers of dementia patients. Convergent validity was assessed by looking at associations of Pt with validated instruments for measuring subjective burden (CSI, CarerQol-7D, and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between Pt and characteristics of dementia patients, informal carers, and care situations. The Medical Ethics Committee of Utrecht MC advised positively about the study protocol. Results: Correlation coefficients between Pt and the measures of burden CSI, SRB, and CarerQol-VAS were −0.46, −0.63, and 0.23 (p < 0.01), respectively. Health of dementia patient, informal carer living apart from the patient, and male gender of caregiver were positively associated with Pt; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care were negatively associated. Conclusions: Pt is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary.

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Screening for elder abuse in dementia in the LASER-AD study: prevalence, correlates and validation of instruments

Background: Several studies have investigated abusive behaviour by carers towards people with dementia, most using unvalidated scales; only two reported correlates of abuse after controlling for mediators and confounders, and these controlled for different factors.

Objective: To investigate the acceptability and validity of the Modified Conflict Tactics Scale (MCTS) and abuse correlates.

Methods: Eighty-six people with Alzheimer's disease and their family carers, originally recruited for a representative community study were interviewed. We asked carers about acceptability of the MCTS and investigated its validity by comparing scores to the Minimum Data Set (MDS) abuse screen (an objective measure) and testing hypotheses that MCTS score would correlate with the COPE dysfunctional coping scale but not carer education.

Results: Twenty-four (27.9%) were identified as abuse cases by interview. No care recipients (CRs) screened positive for abuse using the MDS screen. Seventy-two (83.7%) participants thought that the scale was acceptable, ten (11.6%) that it was neither acceptable nor unacceptable, and three (3.5%) that it was unacceptable. As hypothesised, MCTS scores correlated with dysfunctional coping scale score but not carer education.

Conclusions: This is the most comprehensive study so far in this field. The MCTS was acceptable and had convergent and discriminant validity for measuring carer abuse. The MDS failed to identify cases of abuse. Carer male gender and burden, and greater CR irritability, cognitive impairment but less functional impairment predicted carer abusive behaviour. Our findings appear to refute UK government elder abuse reduction policy which assumes that few incidents of abuse arise from carer stress.

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Trauma and growth in Canadian carers

The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences; 51.7% of these individuals were male, 46% were female and 2.3% were transgender. The range of deaths experienced was from 0 to 110. Forty-four per cent of the carers were themselves HIV-positive. Of all the HIV carers in this study, 86.4% of them exhibited symptoms of post-traumatic stress disorder. Despite this, 81.8% had scores high enough to be indicative of post-traumatic growth. This study provides a portrait of bereaved HIV carers in Canada and both the positive and negative realities associated with that situation.

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Caregivers' and non-caregivers' knowledge regarding HIV/AIDS and attitude towards HIV/AIDS and orphans in Nigeria

Nigeria has an estimated 930 000 AIDS orphans, which has a marked impact on family and community. This study was performed to characterise caregivers’ knowledge regarding HIV/AIDS and their attitude towards HIV/AIDS, orphans in general and AIDS orphans in particular. Caregivers and non-caregivers aged 25–70 years in Nigeria were interviewed from January and March 2003, and logistic regression analysis was used to determine associations between caregivers’ knowledge regarding HIV/AIDS and attitudes towards HIV/AIDS, orphans and AIDS orphans, and demographic characteristics and background status regarding HIV/AIDS and orphans. A total of 824 interviewees participated in the survey (82.4% response rate), of whom 290 (35.2%) were current caregivers of orphans. The mean number of orphans per current caregiver was 1.8 (standard deviation 1.4). Factors related to higher knowledge level regarding HIV/AIDS were female gender [odds ratio (OR) = 3.49; 95% confidence interval (CI): 2.33, 5.22] and belief that AIDS is a common disease (OR = 3.39; 95% CI: 2.19, 5.26). Factors associated with positive attitudes towards HIV/AIDS, orphans in general and AIDS orphans in particular were age 35–44 years (OR = 1.73; 95% CI: 1.11, 2.69), Koranic schooling (OR = 8.69; 95% CI: 2.42, 31.19), polygamy (OR = 1.76; 95% CI: 1.17, 2.62), belief that there are increasing numbers of orphans in the community (OR = 2.59; 95% CI: 1.32, 5.08) and having relatives or friends with HIV/AIDS (OR = 2.88; 95% CI: 1.61, 1.58). There was a slight correlation (r = 0.17, P < 0.001) between caregivers’ knowledge regarding HIV/AIDS and positive attitudes towards HIV/AIDS, orphans and AIDS orphans. Demographic characteristics and personal experience should be taken into consideration to improve attitudes and behaviour related to HIV/AIDS and caring for orphans and AIDS orphans.

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The employment costs of caregiving in Norway

Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states.

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A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement.

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Shaping the future of care together: equality impact assessment

This assessment looks at the likely equality impact of possible reforms to the care and support system on people according to age, ethnicity, gender, race, religion and belief, and sexuality. It takes the issues of funding, increased personalisation, innovation, joined-up services and better provision of information on how the system works and what service users and carers are entitled to as proposed in the green paper 'Shaping the future of care together' and forecasts potential outcomes for the groups mentioned above.

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Effects of family caregivers on the use of formal long-term care in South Korea

Aim: We investigated whether the presence and characteristics of a family caregiver affect the use of formal long-term care under the new Korean long-term care system.

Background: In July 2008, Korea introduced public long-term care insurance, a form of social insurance, in order to cope with the reality of the growing elderly population and the increasing demand for long-term care.

Methods: The family caregivers of 271 applicants for long-term care insurance who had a caregiver and 36 applicants without a caregiver living in one city participated in this cross-sectional study. Data were collected from November 2010 to June 2011 using self-report questionnaires. Variables included the applicant's gender; age; physical and cognitive function; type of long-term care used; presence and type of family caregivers; caregiver's gender, age, education level, marital status, and employment status; and service use covered by long-term care insurance. Logistic multiple regression was used.

Results: The effect of the presence and characteristics of a family caregiver on the use of a long-term care facility was significant. A nursing home was used for care more frequently when the applicant had no family caregiver. An elderly subject who had a spouse as a caregiver used home healthcare services more often than nursing home services.

Conclusion: The decision to use formal services may depend not only on the care level required by the applicant, but also on the presence and type of caregivers. To successfully implement the new long-term care insurance system, consideration of the caregiver situation should be included in policy development.

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The ties that bind us: how existing relationships, health and gender shape family care in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty’s existential philosophy of the body provided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a difference in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and perception of care burden. The stories highlight the self-perceived need for women carers to be conscious micro-managers of illness. Male family members would care alongside, lending support and caring in a reactive way as specific needs or crises arose. Caring in COPD required a binding vigilance; a constant need of the carer to monitor the physical and emotional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and differences in family caring between COPD and other chronic illnesses, and to further understand the specific needs of male carers.

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Carers in the region: a profile of the East Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East Midlands region. In 2001 there were 433,912 carers in the East Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carer’s health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East Midlands region.

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The association between caregiving satisfaction, difficulties and coping among older family caregivers

Aims and objectives.  The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers.

Background.  Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons.

Design and methods.  Cross-sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age-stratified sample in a postal survey among older people in the southern part of Sweden.

Results.  Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem-solving strategies.

Conclusions.  The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem-focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving.

Relevance to clinical practice.  Reinforcing the health-promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.

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The impact of caring on carers: Associative and predictive factors relating to the general well-being of carers supporting a person diagnosed with Progressive Supranuclear Palsy (PSP)

The purpose of this study was to determine the predictive and associative factors of the carer's general well-being, specifically concerning carers offering support to those diagnosed with Progressive Supranuclear Palsy (PSP). Results showed that the sole predictive factor of the carers general well-being were the difficulties perceived with behavioural change and cognitive status within the PSP person. Several factors were also identified as significantly associated with the carers general well-being (gender of carer, PSP persons degeneration of motor functions, perceived difficulties relating to basic and instrumental activities conducted for the PSP person and perceived difficulties relating to basic and instrumental activities conducted for the PSP person and perceived difficulties with social network). However, all factors were not significant predictor's of the PSP person's general well-being when received difficulties with behaviour change and cognitive status were included in the model. [Book abstract]

The experience and management of menstruation for women with learning disabilities

This paper describes a three‐phase study to investigate the experience and management of menstruation for women with learning disabilities. It focuses on the findings of the second phase of the study, which looked at the experiences of carers and health professionals. It describes the difficult issues that can arise when providing assistance around menstruation. The findings are discussed in relation to ideologies and sensitivities that exist around gender, sexuality and menstruation.

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The health status of family caregivers in Taiwan: an analysis of gender differences

Background: Many studies have assessed the impact of caregivers' work activities on the caregiver. There is growing concern about the ever-increasing problems, both physical and physiological, faced by health care workers who provide care for the ill and incapacitated.

Aim: The aim of the study was to examine what, if any, differences exist between male and female caregivers. This study primarily focused on caregivers who were taking care of a family member.

Method: Three hundred and eighty-eight caregivers (280 females and 108 males) were recruited from 16 randomly selected home-care agencies in Southern Taiwan. The participants completed the Chinese Health Questionnaire-12 and the Self-Rated Health Scale. They also completed questionnaires drawn up specifically for the purpose of this study.

Results: Compared to the male caregivers, the female caregivers more often reported they suffered from symptoms of lack of well being, a decrease in psychosocial health and overall self-rated health.

Conclusion: The results reiterate the importance of considering gender differentiation in the caregiving role. Major differences were found in the extent to which negative health consequences were experienced by the male and female caregivers. The results suggest that caregivers, especially female caregivers, urgently require adequate professional health care assistance in order to reduce the negative physical and physiological effects of caregiving on the health caregiver. Copyright © 2005 John Wiley & Sons, Ltd.

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Family policy, employment and gender-role attitudes: a comparative analysis of Russia and Sweden

In this article, we explore the interaction between female and male employment, parenting responsibilities and family policy in Russia and Sweden. The study is based first on indicators of public social services, assistance for families and labour force data; and second, on the ISSP modules on Family and Changing Gender Roles (years 1994, 2002). The results show that both Sweden and Russia facilitate the 'dual-earner' family model, but that Sweden places a greater emphasis on dual-caring and flexible work arrangements for women. The support for traditional gender roles was much higher and more uniform in Russia than in Sweden. The proportion of 'dual-earner' and female-led families was nevertheless higher in Russia than in Sweden, especially in 1994 when major restructuring in the social and economic sphere was occurring. The findings suggest that family policy is instrumental in facilitating female employment, but does not necessarily bring changes in gender-role attitudes.

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Carers in the region: a profile of the South West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South West region. In 2001 there were 492,451 carers in the South West region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South West region.

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His helping hands - adult daughter's perceptions' of fathers with caregiving responsibility

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers “masculine authenticity”, all of them appear to cherish “his helping hands” as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional ‘male activities’ and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

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Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping and well‐being

This study was concerned with identifying the impact of variables such as gender, length of time caring, coping style, depression and perception of caregiving burden on the physical and psychological well‐being of carers of persons with dementia. Forty‐two carers aged between 21 and 88years from Blue Care's Homecare Dementia Service and Cairns Aged Care Health Service participated in the study. A cross‐sectional survey research design was used, with participants providing information on the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, the COPE, Short Form (SF)‐12 and the Zarit Caregiver Burden Scale. Perceived burden accounted for 41.7% of the variance in satisfaction with life as a subjective measure of well‐being. There were no significant differences between male and female carers. Satisfaction with life was not found to decrease with length of time caring for the dementia sufferer. There were no significant findings in regard to coping style or physical health of carers. The well-being of carers can be enhanced through strategies which lead to a reduced perception of burden, with respite services providing tangible relief from burden.

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Carers in the region: a profile of Yorkshire and the Humber

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the Yorkshire and the Humber region. In 2001 there were 516,546 carers in the Yorkshire and the Humber region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the Yorkshire and the Humber region.

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

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

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Family members' of persons living with a serious mental illness: Experiences and efforts to cope with stigma

Background: Studies have indicated that family members of persons with mental illness often experience stigma in relation to their relatives' illness. Less is known about the type of experiences they face and how they cope with these experiences.

Aims: To explore family members' experiences and efforts to cope with mental illness stigma in social encounters.

Method: A qualitative immersion/crystallization analysis of focus group data was used to examine family members' experiences and responses to perceived stigma.

Results: Family members reported experiencing rejection, blame and avoidance by others, engendering hurt, disappointment and shame. They employed flexible coping strategies depending on their personal resources, motivation and their relatives' willingness to disclose.

Conclusion: Findings suggest that families learn from their own experience the “art of selective disclosure”: what, when, how much and who to share information with. Coping strategies are developed based on the situation and family members' needs and personal resources which differ between families and over time.

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Comparing carer wellbeing: implications for eating disorders

Purpose – Around 50 per cent of carers of people with eating disorders (EDs) experience mental health difficulties. The purpose of this paper is to investigate well-being of carers of people with ED and carers of people with severe and enduring eating disorders (SEEDs).

Design/methodology/approach – Carers (n=104) were recruited from UK support groups and stratified using duration of the care recipient’s ED (0-2, 2-6, > 6 years), with the > 6 years category classified as SEED. Data were compared with existing carer well-being studies of other patient groups.

Findings – Carers of people with SEED were not significantly different on reported well-being to carers of people with ED. However, carers of people with ED reported significantly less well-being than community norms, carers of people with brain injury and of people with dementia. Specifically, poorer social functioning was reported.

Research limitations/implications – Further research on carers of people with SEED is warranted as carers of people with SEED were not equally balanced in gender. It would be beneficial if support groups and skill-based workshops were more available for carers.

Originality/value – This is the first known study to compare carer well-being of people with SEED with carers of other clinical populations. Further research is required to identify the needs of carers.

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The effect of unpaid caregiving intensity on labour force participation: Results from a multinomial endogenous treatment model

It is well acknowledged that the intensity of caregiving affects the labour force participation of caregivers. The literature so far has not, however, been able to control effectively for the endogeneity of caregiving intensity. This paper contributes by dealing with the endogeneity of unpaid caregiving intensity when examining its impact on the labour force participation of caregivers. We distinguish between care provided to people who cohabit with the care recipient and care provided to recipients who reside elsewhere, as well as between primary and secondary caring roles. We address the endogeneity of selection in various care intensity roles via an instrumental variables approach, using the health status of potential care recipients as instruments. Data from wave 8 of the Household Income and Labour Dynamics in Australia survey which was undertaken in 2008 are used. We focus on a sample of 7845 working age males and females. Ruling out the endogeneity of any caregiving intensity role, we find that caregiving has a significant deterrent effect on caregivers' employment. This deterrent effect however is concentrated among those who identify as the main caregiver and the result appears to be the same irrespective of gender. Providing care as the main caregiver reduces the probability of employment by approximately 12 percentage points for both males and females, regardless of whether or not the caregivers cohabit with the care recipients. By contrast, we find no statistically significant impact of providing care as a secondary caregiver on the employment probabilities of either males or females. These results are germane to the development of policies that may affect informal caregiving and, thereby, the labour force decisions of carers.

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Effects of gender and employment status on support provided to caregivers

This study was designed to examine the impact of caregiver gender and employment status on laypeople's willingness to support the caregiver. A total of 216 undergraduates were randomly assigned to read 1 of 4 vignettes that described an individual caring for his or her physically ill spouse. Caregiver gender (man or woman) and employment status (full-time employment or retirement) were manipulated. Overall, female participants reported that they would provide higher levels of support than did male participants, particularly with regard to emotional support. Male participants were more likely than female participants to attend to caregiver employment status when rating their level of instrumental support provision. Gender of the caregiver did not exert an effect. Findings are interpreted in light of gender norms that allocate care of sick family members to women. (Original abstract)

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Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife

Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.

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Work, gender, and stress in family cancer caregiving

Goals of work: The objective of this study was to examine whether employment status and gender was associated with family cancer caregivers’ reports of stress and well-being.

Materials and methods: Using a correlational, cross-sectional survey design, this study included 183 primary caregivers (i.e., those individuals who provided the most help to persons with cancer). Caregivers were recruited in a radiation oncology cancer clinic and were administered detailed interviews that collected a wide range of information about the stress process.

Results: Bivariate and multivariable analyses suggested a number of differences between various classifications of employment status and gender. In particular, women who worked appeared more likely to provide instrumental care to the person with cancer when compared to men who did or did not work. In addition, women who worked were more likely to report feelings of exhaustion and fatigue when compared to men who worked.

Conclusions: The results emphasize the need to consider the context of cancer care when analyzing the stress process. When faced with employment, women appear particularly at risk for emotional distress and greater perceived care demands. Utilizing tools that identify cancer caregivers at risk based on work, gender, or other contextual variables may inform the development and targeting of clinical interventions for this population.

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Transitions in men's caring identities: experiences from home-based care to nursing home placement

Objectives.  The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home.

Background.  Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective.

Design.  A qualitative constructivist approach was adopted for this study.

Participants.  Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home.

Methods.  Interviews were analysed with a constructivist approach.

Results.  The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship.

Conclusions.  The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men’s caring activities and to make them sustainable, we believe that men in an informal caring relationship need support.

Relevance to clinical practice.  Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men’s lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers.

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The development of a screening tool to identify carers in a general practice by a large-scale mailed survey: the experience in one Scottish general practice

Aims and objectives.  To determine the feasibility of a screening tool to identify carers in a general practice.

Background.  The need to support informal carers is well established in policy and practice, but many carers continue to lack the support they need. Identifying carers is a fundamental precondition to providing them with support. Studies often recruit carers who are members of carers’ organizations or via the care recipient in receipt of services. However, as nearly 60% of carers receive no support from the statutory services, this group of carers may not be representative of the majority of carers. This paper describes the results of a study undertaken to identify a broader group of carers in a general practice in a large Scottish city.

Design and methods.  A quantitative research design was employed using a mailed screening survey to identify carers within a general practice. Carers were systematically identified, independent of the care recipient, using a screening tool developed by the researcher which was sent to all adult patients registered with the practice.

Results.  The response rate was 69%. Overall, 11% of the surgery population identified themselves as carers with a mean age of 55 years. The carers were involved in a range of caring activities of varying levels and duration.

Conclusion.  The screening exercise was time consuming and costly. However, it would be feasible and useful to identify carers in smaller groups.

Relevance to practice.  This study tackles issues that are pertinent to health policy and practice. Carers were systematically identified from a general practice population and included those at an early stage of the caring role, prior to being involved with service providers, as well as those established in their role. If carers are identified early in their caring career the primary health care team is more able to support them proactively.

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The use of long-term care services by the Dutch elderly

The main focus of this paper is the development of an appropriate framework to characterize the process of long-term care utilization by the Dutch elderly. Three broad categories of care services are considered, namely, informal care, formal care at home, and institutional care. The use of these care alternatives is modelled jointly, and stochastic dependence is allowed between the various care options. Special attention is given to the concept of health status and to the potential endogeneity of this variable in the model. We apply a flexible non-parametric method to summarize the multidimensional concept of health status into a limited set of interpretable indices. The model is applied on the Longitudinal Ageing Study Amsterdam (LASA). We find strong effects of health status, gender, socio-economic variables, and prices on the utilization of long-term care services. Copyright © 2000 John Wiley & Sons, Ltd.

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'If they don't recognize it, you've got to deal with it yourself': gender, young caring and educational support

This article discusses some of the findings of a small-scale, localized, qualitative study involving children and young people identified and processed as young carers, that are providing 'substantial care' for an adult while in primary and/or secondary school. It explores their views on managing to 'care more' whilst at school and the role that teachers and schools do and could play in supporting them. The voices of young carers suggest that educational support should be available 'as soon as' children become primary carers. The interviewees were critical of the factors that they perceived compromised their 'performance' at school. Some implications of these findings for implementing strategies for carers in schools are discussed. 

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Carers and the digital divide: factors affecting Internet use among carers in the UK

This paper presents data from a cross-sectional survey of 3014 adult carers, examining use of the Internet and factors associated with it. Carers recruited from the databases of three local authorities and other carer organisations within their geographical boundaries and that of Carers UK, a national carers organisation, were sent a postal questionnaire (response rate: 40%). A comparison of our data with national data on carers suggests some under-representation of men and younger adult carers and some over-representation of those who had been caring for long periods and those with substantial caring responsibilities. Two measures of Internet use were used and are presented in this analysis: previous use (ever used vs never previously used) and frequency (less than once a week vs once a week or more). Bivariate analyses identified patterns of Internet use and socio-demographic and socio-economic factors and caring circumstances associated with them. Factors significantly associated with each measure of Internet use were entered into direct logistic regression analyses to identify factors significantly associated with each measure. Half (50%) of all carers had previously used the Internet. Of this group, 61% had used it once a week or more frequently. Factors significantly associated with having previously used the Internet were carer's age, employment status, housing tenure and number of hours per week they spent caring. Frequency of Internet use was significantly associated with carer's age, sex, employment status and number of hours spent caring. Our study suggests that a significant number of carers may not currently be Internet users and that age, gender, socio-economic status and caring responsibilities shape Internet use in particular ways. Given the targets set by government for the development of online services, it is important to address the digital divide among carers and to continue to develop other services and information systems to meet the needs of those who do not access the Internet.

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Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers

The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.

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Factors associated with nursing home entry for older people in Taiwan Republic of China

Taiwan is facing a rapid change in the composition of its population. As the population ages, a greater demand for long-term care services and, in particular, nursing homes is expected. Before deciding who really needs nursing home care, it is important for policy makers to understand the current pattern of utilisation and what factors are associated with entry. This research assesses the relative importance of predisposing, enabling and need factors that lie behind this. It is based on a survey of elderly people in registered nursing homes, a comparison with a national sample of elderly people in their own homes and interviews with the lucid elderly patients (i.e. could communicate with no problems) and their carers. It was found that nursing home entry was associated with advanced age, gender, educational level and dependency levels of elderly people. After controlling for age, need factors have the greatest impact on admission. Specific medical problems such as cardiovascular, neurological and skeletal muscular diseases were also major contributors. Although most elderly people in Taiwan are cared for in their own homes by their families, under certain circumstances entry to a nursing home seemed inevitable. Decisions about nursing home entry were mainly taken within a family context with adult children being the main players while professionals played a relatively minimal role.

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The commodification of care: the Italian way

Italy has one of the highest percentages of older people in Europe, a trend likely to increase faster than elsewhere alongside greater disability. Family support is also weaker through demographic developments and greater female participation in the labour market, and public policies for frail older people are underdeveloped with wide regional variations. The national scheme, the indemnita di accompagnamento (companion payment), is paid to approximately 7.3% of severely disabled people over 65 based on assessment of need. Private care is much greater than public provision of personal services, mainly supplied by individual workers rather than organisations. 'Routed wages' comprise the companion payment of which there are further details relating to funding, target, admittance, purpose and amount, and also local payments for care supplied by regional authorities and municipalities, with the same details listed. Local payments are increasingly widespread, mainly in the north and centre of Italy. There are several [...]

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

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

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The emotional costs of caring incurred by men and women in the British labour market

This study investigates whether men and women in caring occupations experience more negative job-related feelings at the end of the day compared to the rest of the working population. The data are from Wave Nine of the British Household Panel Survey (1999) where respondents were asked whether, at the end of the working day, they tended to keep worrying or have trouble unwinding, and the extent to which work left them feeling exhausted or “used up.” Their responses to these questions were used to develop ordinal dependent variables. Control variables in the models include: number of children, age, hours worked per week, managerial responsibilities and job satisfaction, all of which have been shown in previous research to be significantly related to “job burnout.” The results are that those in caring occupations are more likely to feel worried, tense, drained and exhausted at the end of the working day. Women in particular appear to pay a high emotional cost for working in caring occupations. Men do not emerge unscathed, but report significantly lower levels of worry and exhaustion at the end of the day than do women.

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"Isn't he wonderful?" Exploring the contribution and conceptualisation of older husbands as carers

This paper explores the relationship between the dimensions of a debate cited at the intersection of ageing, gender, and family care. It draws together evidence from the General Household Survey for Britain 2000 and social research to explore the contribution and conceptualization of caring by older husbands. UK research on caring reveals that among older spouses, equal numbers of husbands and wives provide intensive care. It has been argued that within late-life marriage an over-riding desire to retain independence erodes gender-determined task allocation, suggesting not only similarity but equality between wives and husbands as carers. More recent qualitative research challenges this assumption and suggests two key findings: that older husbands are motivated to care by a combination of marital duty and reciprocal love, and that they manage the tasks of caring within an instrumental framework. Further, it is clear that pre-existing gender relations continue to be powerful determinants of the experience of caring, and that marital power is retained by men in late-life marriage. Overall, the caring contribution of older husbands is imbued with positive meaning, is highly valued, and offers a distinctive role and identity; this contrasts sharply with the caring experiences of older wives.

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Evaluating the efficacy of psycho-social interventions for informal carers of cancer patients: a systematic review of the research literature

Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.

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Carers in the region: a profile of the East of England

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East of England region. In 2001 there were 517,877 carers in the East of England region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East of England region.

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Gender restructuring, employment, and caring

In market capitalism, the tension between the demands of employment and the requirement for caring has, historically, largely been met by the domestication of women via the “male breadwinner” model of employment and family. However, the rising level of women's employment has destabilized this arrangement. In this article we evaluate a range of prescriptive responses to this situation: rightist, center-leftist, and feminist. To varying degrees, “family-friendly” state welfare policies have attempted to grapple with the resolution of the employment/caring conundrum. Nevertheless, such policies are called into question by increasing pressures to deregulate the market. At a personal level, individuals in a competitive labor market find it difficult to resist organizational demands. These issues will be explored and developed drawing upon evidence from a comparative study of male and female doctors and bank managers in Britain, France, and Norway.

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It could be you: a report on the chances of becoming a carer

Carers look after family, friends or partners in help because they are ill, frail or have a disability. The care they provide is unpaid. In any year 301,000 adults in the UK become carers. Three out of five carers have had to give up work to care. Almost all of us have been or will be a carer during our lifetime.

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Employment, flexible working and the family

This paper assesses some of the implications of one of the major social changes to have taken place in the West during the second half of the twentieth century — that is, the increased employment of women, together with normative changes in gender relations and in women's expectations. These changes have been linked to an increase in individualism, which itself is associated with the transcendence of ‘first modernity’. Thus it is suggested that new approaches to social analysis are required (Beck). Here it is argued that, rather than develop completely new approaches in order to grasp the changes that are under way, the ‘economic’ and the ‘social’ (that is, employment and the family) should be seen as intertwined, rather than approached as separate phenomena. Past debates in feminism, changes in the family, and flexible employment are critically examined. The growing tensions between employment and family life are discussed. It is argued that these changes are associated with the intensification of capitalist development, rather than reflecting a fundamental transformation of society. Existing approaches to the analysis of social change, including Polanyi's analysis of the development of ‘counter-movements’ against the ‘self-regulating’ market, will, therefore, still be relevant to our enquiries. In the concluding section, a programme of research that would examine these changes is outlined.

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The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.

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The caregiving role following percutaneous coronary intervention

Aim.  The aim of this study is to describe the experience of caregivers of individuals who have had a percutaneous coronary intervention (PCI).

Background.  Decreased lengths of hospital stay and an increased emphasis on chronic disease self-management increase the importance of carers in assisting in recovery and lifestyle modification.

Design.  Cross-sectional dual-moderated focus group design.

Method.  Three focus groups using a dual facilitation approach were held in the cardiac rehabilitation setting of a tertiary referral hospital in metropolitan Sydney. All sessions were audio recorded, transcribed and thematically analysed.

Results.  Four themes emerged from the data: (1) a gendered approach to health, illness and caring; (2) shock, disbelief and the process of adjustment following PCI; (3) challenges and changes of the carer–patient relationship and (4) the needs of the carer for support and information. Issues emerging from this study parallel other findings describing the experience, yet provide new insights into the issues surrounding PCI.

Conclusion.  These findings highlight the need for including carers in care planning and decision-making and providing them with support and resources.

Relevance to clinical practice.   

  • Emphasises the importance of preparing carers of the likely experience following a PCI.
  • Demonstrates the degree to which vigilance, deferment of carer-health needs and role conflict impact on the carer’s personal relationship.
  • Demonstrates the need for formal support interventions for carers of patients who have had PCI.
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A tool to analyse gender mainstreaming and care-giving models in support plans for informal care: Case studies in Andalusia and the United Kingdom

Objective: To present a tool to analyse the design of support plans for informal care from a gender perspective, using the plans in Andalusia and the United Kingdom as case studies.

Methodology: A tool was drawn up to analyse gender mainstreaming and care-giving models involved in the documents. In the gender mainstreaming aspect, a symbolic dimension (gender mainstreaming in the plan’s theoretical framework and analysis of situation) and an operational dimension (gender mainstreaming in the plan’s proposals and actions) were defined. Four care-giving models were analysed using the following categories: the plan’s definition of carer, focal point of interest, objectives and acknowledgement or otherwise of conflict of interests. A qualitative discourse analysis methodology was used.

Results: The analysis tool used shows that the plans do not incorporate gender mainstreaming systematically, but there are interesting aspects from a gender perspective that are present at both a symbolic and an operational level. Both plans use a combination of care-giving models, but the model for superseding informal care is not included in either plan.

Conclusions: The proposed tool proved useful for the examination of the gender perspective in the formulation of the plans selected for analysis. Both plans introduce measures to improve the quality of life of informal carers. However, gender mainstreaming also implies interventions that will change situations of sexual inequality and injustice that occur in informal care in the long term. Likewise, aspects of feminist theory must be considered in order to draw up plans and policies that are sensitive to informal care and the emancipation of women carers.

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Strain and its correlates among carers of people with dementia in low-income and middle-income countries; a 10/66 Dementia Research Group population-based survey

Objectives: In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers.

Methods: In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview.

Results: With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support.

Conclusions: Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd.

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Stroke caregivers' strain prevalence and determinants in the first six months after stroke

PURPOSE: Many disabled stroke survivors live at home supported by informal caregivers. Research has revealed that these caregivers are experiencing strain. This study aims to examine the prevalence and differences over time of caregivers' strain in the first 6 months post-stroke and to predict caregiver strain based on patients' and caregivers' characteristics and service input.

METHOD: Ninety consecutive patients and their caregivers were assessed at 2, 4 and 6 months post-stroke. The Caregiver Strain Index was used to evaluate strain. Patients' motor function, functional ability, health status, emotion and participation and caregivers' gender and relation to the patient and service input after discharge were measured to determine the predictive factors.

RESULTS: Nearly one out of three caregivers experienced strain. No differences were seen between 2, 4 and 6 months post-stroke. Correlation and multiple regression analyses revealed that in predicting strain, the patients' functional and activity level plays an important role in the sub-acute phase while the participation level gets more important over time.

CONCLUSIONS: These findings emphasize the importance of maximal physical recovery and optimal reintegration in the community. This is not only essential for the patients themselves but also a pre-requisite to reduce the strain of their caregivers.

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Caring women, shrewd strategies: the organizational dynamics of home health care

The AIDS epidemic is a driving force in the external policy environment, stimulating large-scale changes in health care organizations. Visiting Nurse Associations (VNAs), gendered organizations with a hundred year tradition of caring work in communities, responded to governmental initiatives with structural and functional changes. A case study of the development of the AIDS Care Program of the Visiting Nurse Service of New York (VNSNY) offers a unique opportunity to explore the exercise of strategy as health policy is translated into organizational practice. Adoption of a gendered analysis is essential to this exploration of internal organizational choice and limits in responding to external societal change.VNSNY, one of the oldest and largest home care agencies in the United States, is located in an epicenter of the AIDS epidemic. Using organizational strategies developed over its history, this agency responded to the city's request for coordinated home care services to people with AIDS. The resulting program implementation and development process demonstrated the coercive state and mimetic professional forces on the organizational structure and function. At the same time VNSNY actively exerted its own influence to regain autonomy lost in previous government contracting. [...]

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Caregivers' anxiety and self-efficacy in palliative care

This study examined the relationship between caregivers' anxiety supporting a patient with advanced cancer and self-efficacy and their socio-demographic characteristics, and then whether these variables could influence their self-efficacy. One hundred and seven caregivers of advanced cancer patients participated in the study and completed the Greek versions of the State–Trait Anxiety Inventory (STAI) and the General Perceived Self-efficacy Scale (GSE). Significant comparisons were found between State anxiety and female gender (P= 0.009), cohabitation (P= 0.002) and relationship with the patient (P= 0.004); statistically significant associations were found between State, Trait anxiety and self-efficacy scores of caregivers (P < 0.0005 respectively). A multiple regression model (enter method) showed women (P= 0.005), spouses (P= 0.01) and self-efficacy (P= 0.02) as the significant predictors of State anxiety. Furthermore, self-efficacy seemed to be the strongest contributor of trait anxiety (P < 0.0005). Female caregivers and spouses of advanced cancer patients experience more state anxiety levels than men and other caregivers respectively. In addition, caregivers with low self-efficacy are more likely to have elevated anxiety scores than self-efficacious caregivers. These findings can help healthcare professionals focus on some problems common to caregivers of cancer patients and plan appropriate interventions.

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The relationship between patient characteristics and carer psychological status in home palliative cancer care

Goals: Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.; Patients and Methods: Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures. Multivariate analyses were performed for each dependent carer psychological measure, with patient characteristics as independent variables (adjusted for carer age and gender).; Main Results: Forty-three carers participated. Greater patient distress was associated with carer anxiety (b value: magnitude of the effect) (b=0.31, p=0.07), and both patient psychological status (b=0.37, p=0.02) and pain (b=0.29, p=0.09) were associated with carer psychological morbidity. Carer burden was associated with patient psychological distress (b=0.35, p=0.03) and pain (b=0.29, p=0.08). Carer avoidance/emotion-focused cognitive coping strategies were associated with patient physical function (b=0.34, p=0.04), and cognitive problem-focused coping was associated with patient symptoms (b=0.28, p=0.06) and physical function (b=0.29, p=0.05). Conclusions: Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.

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Older LGBT people’s care networks and communities of practice: a brief note

This article critically examines literature relating to the care of older lesbian, gay, bisexual and transgender (LGBT) people. It promotes an analysis of the network context of this care and advocates the use of the concept of ‘communities of practice’ to understand the processes of network participation and identity negotiation.

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The Gender Informal Care Gap A fuzzy-set analysis of cross-country variations

This article investigates the relationship between the 'gender informal care gap' - the relative contributions of women to informal care for non-co-resident relatives and other members of social networks, compared to men - and public care policies, level of care needs, labour market position and gendered care attitudes. Since the literature suggests that none of these factors alone can explain the gender informal care gap, we develop a model based on fuzzy-set/qualitative comparative analysis in order to identify patterns in the relationship between the factors. The analysis conducted at the macro-national level in 13 European countries, suggests that at the macro-level, the availability of public care services is crucial to understanding the gender informal care gap, while women's labour market position, the presence or absence of gendered care attitudes and the level of care needs play no or a relatively minor role.

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Informal caregiving - Differential experiences by gender

Background. With an aging population and public policies that limit accessible and affordable formal care services, informal caregivers, largely women, will continue bearing the overwhelming responsibility for home and long-term care services provision. Objectives. This study examined gender differences among informal caregivers in caregiving activities, intensity, challenges, and coping strategies and assessed the differential effects of caregiving on their physical and emotional well-being. Research Design. Cross-sectional study conducted between May and September 1998. Subjects. Telephone interviews were conducted with a randomly selected, nationally representative sample of 1002 informal caregivers. Measures. Caregivers' sociodemographic, and physical and emotional health characteristics; caregiving type and intensity; formal care support; difficulty with care provision; unmet needs; coping strategies; and the care recipients' health and relationship with caregiver were examined between the genders using descriptive and multivariate analyses. Results. Compared with men caregivers, women caregivers were significantly more likely to be 65 years of age or older, black, married, better educated, unemployed, and primary caregivers; provide more intensive and complex care; have difficulty with care provision and balancing caregiving with other family and employment responsibilities; suffer from poorer emotional health secondary to caregiving; and cope with caregiving responsibilities by forgoing respite participation and engaging in increased religious activities. Conclusions. Informal caregivers, particularly women, are under considerable stress to provide a large volume of care with little support from formal caregivers. Program planners, policy makers, and formal care providers must act together to provide accessible, affordable, and innovative support services and programs that reduce family caregiving strain.

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Gendering the "graying" of society: A discourse analysis of the care gap

This article analyzes to what extent the "care-gap"-that is, too few carers looking after increasing numbers of the elderly has become part of the problem definition of the demographic shift in the Netherlands in reports of the major scientific policy advisor to the government. Do these reports still assume a gender order in which women are informal carers and men are breadwinners? What notions about gender are circulating, and is the gender order challenged by policy recommendations? With a framework for gender-discourse analysis, the author shows that, despite increasing awareness of the care gap, the problem definition remains framed as the costs of collective provision of health care and pensions. Recommendations still assume that women will continue to provide informal care while they also enter the labor market to maintain collective provisions.

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Review of the literature on the effects of caring for a patient with cancer

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience. Methods: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient. Results: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified. Conclusion: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life. Copyright © 2009 John Wiley & Sons, Ltd.

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Conceptualizing cash for care: the origins of contemporary debates

Feminism rather than gerontology characterises this book but the substantive issues lie within the field of gerontology and the shift in the boundaries of paid and unpaid work at the end of the twentieth and in the early twenty-first centuries. Cash payments for care are a possible method of ensuring care and citizenship. The chapters raise issues of long-term care funding, the positions of users, caregivers and care workers in the care relationship, how care work could be professionalised and support for informal carers. The first chapter summarises the issues involved in the new systems which emerged in the 1990s and the impact of funding regimes, together with the literature which appeared reviewing these policy developments and the policy context. Increased longevity and changes in family structure diminished the number of potential caregivers, particularly in the EU and North America. Containing costs of social care through the funding of retirement pensions and long-term care forms the second major issue [...]

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Hidden caregivers: providing appropriate services

3rd in a series of 5 articles on informal carers in the UK, focusing on carers who may be more isolated. 

Although most caregivers are, by the nature of care giving, hidden, some caregivers are perhaps more noticeable than others. This suggests that some caregivers are less noticeable, more hidden. This third article in this series on caregivers will focus on the ‘more hidden’ of the caregivers: male caregivers, young caregivers, BAME caregivers, LGBT caregivers, rural caregivers and caregivers who are elderly or have a disability themselves. Some suggestions will be offered that may help healthcare assistants (HCAs) and nurses to support these caregiver groups.

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Welfare state policy and informal long-term care giving in Austria: Old gender divisions and new stratification processes among women

In Austria, the provision of long-term care is strongly based on unpaid female work within family networks and is characterised by a highly unequal division of informal long-term care-giving. In 1993, a major reform has been introduced in the Austrian long-term care system with a payments for care programme and a state–provinces treaty regarding service development at its heart. The objective of this article is to investigate the implications of the 1993 programme on gender divisions and on whether and in what ways the programme and processes set in train by the programme influence the role of women as carers. The question is approached by applying and broadening the concept of defamilisation in a process oriented way. The analysis suggests that from the informal carers' perspective long-term care allowances in the Austrian context mean some financial relief via ‘symbolic payments’. At the same time, the overall long-term care system prolongs existing gender divisions and sets in train new stratification processes among women as main carers with gender, class and space as dimensions reinforcing each other.

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Models of Earning and Caring: Determinants of the Division of Work

This paper examines possible determinants of models of the division of earning and caring activities in Canadian couples. Using the General Social Survey on Time Use, we identify five models of the division of work: complementary-traditional, complementary-gender-reversed, women's double burden, men's double burden, and shared roles. While the complementary-traditional model is declining, it still represents a third of couples. Women's double burden is the second largest category, representing 27 percent of couples in 2005, with men's double burden representing another 11 percent. The shared roles account for about a quarter of couples. Building on these typologies of earning and caring, we analyze the relative importance of life course, as well as structural and cultural factors as determinants of the division of paid and unpaid work within couples. We find that the complementary-traditional and women's double burdens are more likely for older persons, and for persons with young children. Alternative models are more common when women have higher relative resources, for younger persons, and for persons living in Quebec and in urban areas.

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Paid employment and unpaid caring work in Spain

The objective of this paper is to investigate the determinants of unpaid time in caring activities, with a special emphasis on the gender dimension. Data from the Household Panel Survey for Spain is used to estimate an ordered probit model for the hours interval in care of children and adult people in need of care. The results show that gender is one of the key determinants of the distribution of time in caring. Being in paid employment is also an important factor in the time devoted to caring. Demographic variables like age, marital status and education are also relevant, particularly in the case of women. Finally, cultural habits and customs are also important.

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Changing care? Men and managerialism in the nonprofit sector

Summary: The movement of men into care work in the predominantly female voluntary sector appears to be an unintended impact of welfare state contracting-out, managerialism and labour market restructuring. While not uniform, our comparative, international data (New Zealand and Scotland) show that some groups of men in nonprofit care work jobs embraced managerialism and used aspects of it to reshape and advance their work, while others undertook practices exemplifying a ‘caring masculinity’ more similar to practices currently associated with femininised ways of undertaking care activities.

Findings: Drawing on international comparative data collected as part of a larger study of restructuring in the nonprofit social services, this article suggests analytic clusters of masculinities operating in the voluntary sector and explores how the presence of men in care work may be changing it. The article also shows how hegemonic, masculinist-oriented practices in the workplace appear more amenable to managerialism than the expected feminine self-sacrificing, self-exploiting ethos of this highly gendered, female-majority sector.

Applications: These findings provide insights into the gendered and changing work in the nonprofit social services sector, and suggest ways the gender order is changing with the influx of male workers. The findings will be of interest to social work managers, supervisors, practitioners, policy analysts, students and educators.

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Carers in the region: a profile of the South East

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South East region. In 2001 there were 732,483 carers in the South East region, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South East region.

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Unpaid caregiving and paid work over life-courses: Different pathways, diverging outcomes

We investigate the extent to which people's earlier circumstances and experiences shape subsequent life-courses. We do this using UK longitudinal data to provide a dynamic analysis of employment and caregiving histories for 4339 people over 15–20 years between 1991 and 2010. We analyse these histories as sequences using optimal matching and cluster analysis to identify five distinct employment-caregiving pathways. Regression analysis shows that prior to embarking on these pathways, people are already differentiated by life-stage, gender and attitudes towards family and gender roles. Difference-in-differences estimation shows that some initial differences in income, subjective health and wellbeing widen over time, while others narrow. In particular, those following the most caregiving-intensive pathways not only end up poorer but also experience a relative decline in subjective health and wellbeing. These results confirm that earlier circumstances exert a strong influence on later life-courses consistent with pre-determination, persistence and path dependence.

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A fairer future: the Equality Bill and other action to make equality a reality

The Equality Bill will strengthen equality law in England, Wales and Scotland by: introducing a new public sector duty to consider reducing socioeconomic inequalities; putting a new Equality Duty on public bodies; using public procurement to improve equality; banning age discrimination outside the workplace; introducing gender pay and equality reports; extending the scope to use positive action; strengthening the powers of employment tribunals; protecting carers from discrimination; protecting breastfeeding mothers; banning discrimination in private members’ clubs; and strengthening protection from discrimination for disabled people. This document explains how the Bill, supported by other action being taken by the Government and partners, will make Britain a fairer place to live and work now and in the future.

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Social problem-solving abilities and distress among family members assuming a caregiving role

We examined the relation of social problem-solving abilities to distress experienced by family members assuming a caregiving role for a loved one who had recently incurred a severe physical disability. Family members completed measures of problem-solving, depression and health, while their loved one participated in an inpatient rehabilitation programme. Correlational analyses indicated that a negative problem orientation was significantly predictive of caregiver distress, regardless of the degree of physical impairment of the care recipient. Women reported more distress on several measures than men, and disability severity was also associated with depression and impaired social functioning. Family members with a greater negative orientation may be at risk to develop psychological and health problems upon assuming a caregiver role. These results are discussed in light of theoretical models of social problem-solving, and implications are presented for psychological interventions and for health policy concerning family caregivers and their care recipients.

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Work restrictions experienced by midlife family care-givers of older people: evidence from six European countries

This paper examines differences in work restrictions of midlife family carers of older people in terms of prevalence, gender and explanatory variables, in six European countries: Germany, Greece, Italy, Poland, Sweden and the United Kingdom. A sample of 2,897 carers aged 45–64 was extracted from the EUROFAMCARE (Services for Supporting Family Carers of Older People in Europe: Characteristics, Coverage and Usage) European project database, in order to analyse four possible work restrictions experienced in connection with the activity of care-giving: the reduction of working hours; giving up working; difficulties in career developments and forced occasional work. The results show that work restrictions are experienced differently between countries especially by women: they are reported to a higher degree in the United Kingdom, Germany and Greece, less so in Italy, and seldom in Poland and Sweden. Gender differences within countries are not so marked. Country differences are explained in the light of the different welfare regimes characterising the countries under investigation, in order to elucidate how policy makers may act to improve working carers' conditions through appropriate policies.

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Longitudinal perspectives on caregiving, employment history and marital status in midlife in England and Wales

In this paper, we examine associations between employment history and marital status and unpaid care provision among those aged 40–59 in England and Wales. We used data from a large nationally representative longitudinal study, the Office for National Statistics Longitudinal Study. Initially based on a sample drawn from the 1971 Census, in 2001 this study included data on 110 464 people aged 40–59 of whom 5% provided 20 or more hours per week of unpaid care. We analysed associations between caregiving of this intensity and current employment, employment history, employment characteristics, marital status, and employment after childbearing. Among men, caregiving was associated with a history of lower levels of employment. The small group of men with a history of least employment were 70% more likely to provide care than those with a history of most employment. Among women, caregiving was associated with a history of non-employment, but there were no differences between those with fully engaged and partially engaged labour market histories. Analyses of a subset of data on women who had a child between 1981 and 1991 showed that those who had returned to full-time paid work by 1991 were over 50% less likely to later become caregivers. Some associations between employment characteristics and propensity to provide 20 or more hours per week of care were also identified. Those in public sector jobs and those previously in employment with a caregiving dimension were 20–30% more likely than other working women to provide unpaid care. These results suggest a continuing gender dimension in care provision which interacts with marital status and employment in gender-specific ways. It also suggests that implementation of strategies to enable those in midlife to combine caregiving and work responsibilities, should they wish to do so, should be an urgent priority.

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'Do I stay or do I go?'-job change and labor market exit intentions of employees providing informal care to older adults

This article examines whether providing informal eldercare to an older dependent person predicts employees' intentions to change jobs or exit the labor market and, if so, which particular aspects of both caregiving (e.g. time demands, physical/cognitive care burden) and their current work environment shape these intentions. We used data from a sample of 471 caring and 431 noncaring employees in Austria and split the analyses by gender. We found different aspects of informal caregiving to be associated with the intention to change jobs and with the anticipated labor market withdrawal of male and female workers. A time-based conflict between informal eldercare and paid work was significantly and positively related to the intended job change of female workers but not of their male counterparts. Flexible work arrangements were found to facilitate the attachment of female workers to their jobs and the labor market. Intentions to exit the labor market of male workers appeared to be triggered by a physical care burden rather than time demands. Copyright © 2012 John Wiley & Sons, Ltd.

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Caregiver-coping in bipolar disorder and schizophrenia: a re-examination

Background: The caregiving experience has been extensively investigated in some chronic/severe mental illnesses such as schizophrenia. These studies have suggested that illness variables and situational/personal characteristics of caregivers have a significant influence on how caregivers cope with mental illness. However, other similar conditions, e. g. bipolar affective disorder (BPAD), have been relatively neglected in this regard. This study attempted to compare caregiver-coping in BPAD and schizophrenia and to explore the determinants of such coping.

Method: Illness variables and coping, burden, appraisal, perceived support, and neuroticism among caregivers were examined in 50 patients each of BPAD and schizophrenia and their caregivers.

Results: High levels of patient-dysfunction and caregiver-burden, low awareness of illness and low perceived control over patient’s behaviour were characteristic of both BPAD and schizophrenia, with no significant differences between the two groups on these parameters. Coping patterns were also quite alike, though caregivers of patients with schizophrenia were using some emotion-focused strategies significantly more often. Caregiver’s gender, patient-dysfunction and caregiver-neuroticism had a significant influence on coping patterns, but explained only a small proportion of the variance in use of different coping strategies.

Conclusions: Coping and other elements of the caregiving experience in BPAD are no different from schizophrenia. The relationship between caregiver-coping and its determinants appears to be a complex one. More methodologically sound and culturally relevant investigations are required to understand this intricate area, with the hope that a better understanding will help the cause of both patients and their caregivers.

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Male and female care: a different experience?

Do male and female carers have different approaches to the caring role? Tina Fear presents the results of her two small qualitative studies.

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A general practice-based prevalence study of epilepsy among adults with intellectual disabilities and of its association with psychiatric disorder, behaviour disturbance and carer stress

BACKGROUND: Although the elevated occurrence of epilepsy in people with intellectual disabilities (ID) is well recognized, the nature of seizures and their association with psychopathology and carer strain are less clearly understood. The aims were to determine the prevalence and features of epilepsy in a community-based population of adults with ID, and to explore whether the presence of epilepsy was associated with greater psychopathology or carer strain.

METHODS: Data were collected on the age, gender, place of residence, adaptive and challenging behaviour, social abilities and psychiatric status of 318 adults from 40 general practices, together with the degree of malaise and strain of family carers. For participants with epilepsy, a nurse collected information on seizures, investigations, treatment and carer concerns by interview. Association between epilepsy and psychiatric morbidity, challenging behaviour and caregiver malaise or strain, was explored by comparing those with epilepsy with a comparison group matched on adaptive behaviour.

RESULTS: Fifty-eight participants (18%) had epilepsy: 26% were seizure free, but 34% had extremely poorly controlled seizures. Earlier onset and seizure frequency were associated with adaptive behaviour. Carer concerns were related to seizure frequency and a history of injury. There were no significant differences in psychopathology, carer malaise or caregiver strain between the matched epilepsy and non-epilepsy groups.

CONCLUSIONS: This study supports the high occurrence and chronicity of epilepsy among people with ID. While psychopathology and carer strain is common within this population, underlying disability-related factors appear to be more important than the presence of epilepsy per se.

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Respite: carers' experiences and perceptions of respite at home

Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.

Method: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.

Results and Discussion: Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.

Conclusions: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.

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Unmet needs and depression among carers of people newly diagnosed with cancer

Aims: The aims of this analysis were to examine levels of unmet needs and depression among carers of people newly diagnosed with cancer and to identify groups who may be at higher risk, by examining relationships with demographic characteristics.

Methods: One hundred and fifty dyads of people newly diagnosed with cancer and their carers, aged 18 years and older, were recruited from four Australian hospitals. People with cancer receiving adjuvant cancer treatment with curative intent, were eligible to participate. Carers completed the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C45), and both carers and patients completed the Centre of Epidemiologic-Depression Scale (CES-D).

Results: Overall, 57% of carers reported at least one, 37% at least three, 31% at least five, and 15% at least 10 unmet needs; the most commonly endorsed unmet needs were in the domains of information and health care service needs. Thirty percent of carers and 36% of patients were at risk of clinical depression. A weak to moderate positive relationship was observed between unmet needs and carer depression (r = 0.30, p < 0.001). Carer levels of unmet needs were significantly associated with carer age, hospital type, treatment type, cancer type, living situation, relationship status (in both uni- and multi-factor analysis); person with cancer age and carer level of education (in unifactor analysis only); but not with carer gender or patient gender (in both uni- and multi-factor analyses).

Conclusion: Findings highlight the importance of developing tailored programmes to systematically assist carers who are supporting patients through the early stages of cancer treatment.

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Changing intergenerational solidarities within families in a Mediterranean welfare state - Elderly care in Italy

Intergenerational solidarity within families is the traditional source of support for dependent elderly people in southern European countries, where care needs have been mainly fulfilled by the unpaid work of women. Recently, the decline of informal care and the persistent lack of supply of formal services have been accompanied by the growth of commercial services mostly provided by migrant women hired by families in the grey market. The article is based on a qualitative study and explores the social processes underlying these changes. It suggests that although intergenerational solidarity is still crucial, it is expressed less through the direct provision of care and more through the supervision of paid services. This shift, which results mainly from a strategy adopted by middle-class women, challenges traditional gender relations and divisions of work. Moreover, it produces employment relations characterized by low pay and underprotection and reflecting conflicts over time and space typically present in informal care relations.

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The opportunity costs of informal care: does gender matter?

In this paper, we investigate the costs borne by both male and female carers in terms of their forgone formal employment opportunities. Traditionally, informal care was supplied by women but nowadays women are not only more likely to work, but also likely to be significant contributors to family finances. For women, this implies that the size of any forgone earnings cost of informal care is increasing. At the same time, population ageing is making for increasing numbers requiring care. From a policy perspective it is therefore helpful to consider a less traditional but nevertheless important source of informal care, men. We find that both male and female carers bear indirect costs in that they are less likely to be in paid work than otherwise similar non-carers and when they are in paid work they earn significantly less. However, we find that the motivation for lower employment participation is not the same for men as it is for women.

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Who cares? A comparison of informal and formal care provision in Spain, England and the USA

This paper investigates the prevalence of incapacity in performing daily activities and the associations between household composition and availability of family members and receipt of care among older adults with functioning problems in Spain, England and the United States of America (USA). We examine how living arrangements, marital status, child availability, limitations in functioning ability, age and gender affect the probability of receiving formal care and informal care from household members and from others in three countries with different family structures, living arrangements and policies supporting care of the incapacitated. Data sources include the 2006 Survey of Health, Ageing and Retirement in Europe for Spain, the third wave of the English Longitudinal Study of Ageing (2006), and the eighth wave of the USA Health and Retirement Study (2006). Logistic and multinomial logistic regressions are used to estimate the probability of receiving care and the sources of care among persons age 50 and older. The percentage of people with functional limitations receiving care is higher in Spain. More care comes from outside the household in the USA and England than in Spain. The use of formal care among the incapacitated is lowest in the USA and highest in Spain.

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