Family Care Workers Research Articles

Financial Contributions and Experiences of Non-Spousal, Employed Family Caregivers.

The economic impacts of caring for an older adult may be amplified for employed family and unpaid caregivers. We examine out-of-pocket spending among employed, retired, and unemployed caregivers. Among employed caregivers, we identify correlates of spending and assess whether spending and work productivity loss contribute to financial burden. Analyses use the 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving. We find that employed caregivers incur more out-of-pocket spending on caregiving than retired and unemployed counterparts. Employed caregivers spending more than $500 out-of-pocket provide more hours of care and assist older adults with greater impairment. Among employed family caregivers, caregiver and care recipient Medicaid enrollment, spending, and work productivity loss are associated with financial burden. Findings suggest that caregiving exacerbates economic well-being among employed caregivers, particularly for those with socioeconomic vulnerability.

Good citizens, perfect patients, and family reputation: Stigma and prolonged isolation in people with drug-resistant tuberculosis in Vietnam.

Stigma and isolation are common in people with tuberculosis (TB). Social isolation contributes to reduced health outcomes and TB treatment adherence. Stigma and the drivers of isolation in people with Drug-Resistant (DR)-TB may include modifiable advice and practices of family and Health Care Workers (HCW). This study aimed to understand the drivers of isolation and stigma from the perspective of people with DR-TB in Vietnam. A greater understanding of stigma and isolation is important to identify and balance patients' needs and disease transmission risk. In-depth interviews were conducted with 12 people with DR-TB and seven HCWs who care for people with DR-TB in two provinces in Vietnam. Interviews were audio-recorded, transcribed verbatim and translated to English. Data collection and analysis were conducted simultaneously. The data were then analysed using a thematic framework approach. Stigma and extended isolation were common experiences among people with DR-TB. To mitigate stigma, people with DR-TB used the local term 'lao lực' to describe their condition to others which is believed to be a less infectious and less stigmatising type of TB. This study identified that although HCW informed people with DR-TB of when they were no longer infectious and isolation was no longer required, their infection control advice was not always consistent. Despite knowing they were no longer infectious, most people with DR-TB continued to self-isolate to minimise the perceived repercussions of societal stigma, to protect their 'thể diện' (honour, prestige, reputation), and eliminate all risk of transmitting DR-TB to their family. This study identified three interconnected drivers of self-isolation in Vietnam, including fear of infecting others, fear of stigmatization, and to protect family reputation. TB control programmes need to better understand the social aspects of DR-TB to enable them to better support patients. Educating HCW to provide evidence-based infection control advice is vital.

Psychosocial support for HIV serodiscordant couples

ABSTRACT Introduction South Africa has the largest HIV epidemic, with 8.2 million people living with the virus. It has a high HIV prevalence of 13.7% and 230,000 new infections in 2020. It is estimated that HIV serodiscordant couples contribute up to 60% of new HIV infections in sub-Saharan Africa. However, there have been no specific programmes/activities to deliberately cater for couples in HIV serodiscordant relationships. The purpose of this study was to examine the psychosocial support provided for HIV serodiscordant couples both in health care settings and in the community. Methods An interpretative phenomenological analysis (IPA) design was utilised for this study. In-depth interviews were conducted with thirteen HIV serodiscordant couples. Data collection was guided by an interview guide. All audio-recorded interview data were transcribed verbatim into written text. Data analysis was conducted using an interpretative phenomenological analysis framework. A third person-an expert in qualitative research, acted as an independent co-coder and conducted the open coding of each transcript. Findings The findings indicated that HIV serodiscordant couples received psychosocial support from their partners, family, and health care workers. This support was emotional, or in the form of counselling, reminders on taking medication, financial and household chores. The support provided by health care providers proved to be deficient and did not address the diverse needs of this group. Conclusion Psychosocial support plays a critical role in enhancing the quality of life of HIV serodiscordant couples. Therefore, client centred, and tailor-made interventions should be made available to this special with diverse needs group.

Family Care Work Coverage in Pensions: Mapping and Contextualizing International Variations and Developments

Abstract Old-age pensions are the major redistributive system of present-day societies. Central to current discourses on pensions and their reforms is the relevance of work as gainful employment for building up pension rights. Family care work is largely disregarded. Applying the innovative SCQual method, this article systematically quantifies and maps family care work entitlements in ten European countries at different times. The findings suggest that empirical realities and conceptual principles of European pension systems contradict the currently dominant discourses on pensions that result from empirical and theoretical limitations. Family care work entitlements are to be found in all countries, and care work currently provides rather robust entitlements to pensions in most. Since pensions in all welfare states are increasingly built up on the basis of labor-market participation, the different approaches to covering family care work in contribution-based pension systems are separately analyzed.

The Association between Family Care and Paid Work among Women in Germany: Does the Household Economic Context Matter?

Owing to the rapid ageing of societies, studying the labour market consequences of caring for ill, disabled or frail old-age partners, parents and/or other family members (hereafter: ‘family care’) is of urgent concern. Previous research has mainly concentrated on examining the impact of differing family care situations on women’s employment. Building on household decision-making approaches, this study focuses on the moderating role of the household economic situation in the family care–employment relationship among women. Cox shared frailty regression analyses of German Socio-Economic Panel data (SOEP, 2004–2017) indicate that the family care–employment relationship depends not simply on time committed to care but is also stratified by household economic situations: full-time employed, low-intensity caregivers down-scale to part-time hours only in more affluent households; full-time to non-employment transitions are more likely for married, high-intensity caregivers; part-time to non-employment transitions are more likely for high-intensity caregivers contributing marginally to the household income.

Childcare and housework during the first lockdown in Austria: Traditional division or new roles?

Objective: This study analyses how much time mothers and fathers spent on childcare and housework during and after the first COVID-19 lockdown in Austria (starting in mid-March 2020) and how they distributed that time between themselves.
 Background: Parents needed to reallocate care work between themselves as, on the one hand, kindergartens and schools closed for two months and, on the other hand, employment-related changes arose, e.g., working from home. The results are discussed in light of major theories that address the division of care work: the time availability approach and gender role theory.
 Method: This study employs data from the Austrian Corona Panel Project 2020/21, a web-based survey using quota sampling, which started in the second week of the first lockdown (n=372 for respondents in couples with children below age 15). Altogether, seven waves contain information about time spent on childcare and housework; three were conducted during or right after the first lockdown (April and May 2020) and four between June 2020 and February 2021. Linear and logistic regression models were used.
 Results: Within the whole study period, parents’ total workload (care work and employment) was highest during the first lockdown. The workload was greatest—an average of 15 hours on weekdays—among mothers with children below age six. While mothers shouldered more care work in most families, partners shared tasks equally in around one third of them. Care time depended on employment hours, especially for fathers. Yet, it was higher for mothers with the same level of employment as fathers.
 Conclusion: The COVID-19-related employment changes led to a rise in arrangements that rarely existed before in Austria, e.g., fathers working part-time. Consequently, some fathers took on new roles, especially when they worked from home (mostly among the higher educated), were non-employed (mostly among the lower educated) or worked part-time. The paper concludes by discussing whether those experiences may permanently result in more egalitarian gender roles.

Living Experiences with Maintenance Hemodialysis: A Qualitative Content Analysis.

Assessing and providing interventions to improve the comfort status of the patients' needs to be a priority of nursing practice and further research. We did this study to explore the living experiences with maintenance HD among these patients. This qualitative study was conducted using a conventional content analysis approach on 12 HD patients from February 10, 2019 to July 30, 2019. The data were collected through in-depth and semi-structured interviews and were analyzed using Grenham and Landman approach. The main theme was "dialysis therapies with dual face." Three main categories were included: "Dual mood by dialysis," "Dual feelings with dialysis, " and "Relying on the family and health care workers." The results showed that patients' dependence on HD was accompanied by both good and bad moods and created dual emotions both positive and negative. Influenced by these feelings, these patients had shown a variety of reactions such as trying to adjust to life on HD, relying on supports and beliefs. In this study, a dual face was seen in HD in the eyes of these patients. Therefore, "dual face HD therapy" was identified as the essence of the experiences of HD patients. Health-care providers should try to eliminate the bad and unpleasant face of HD.

The Paid and Unpaid Working Life Expectancy at 50 in Europe.

Amid growing concerns about the economic implications of population aging and the sustainability of older adults' working life, unpaid family care work receives less attention despite its direct relevance to population aging. This article systematically compares the paid and unpaid working life expectancy at age 50 to understand the overlap and trade-off between paid and unpaid work among older European adults. Using data from the Survey of Health and Retirement in Europe with the Sullivan method, the article presents gender differences across 17 countries in life expectancy at age 50 at various paid (employment) and unpaid (caregiving) role configurations. When work is defined to include unpaid family caregiving, women and men have similar working life expectancies at age 50, in contrast to prior research. However, its paid and unpaid components are gendered. The results also show that at age 50, women are expected to spend a similar number of years providing grandchild care and activities of daily living/instrumental activities of daily living care and that most of these years take place after retirement. The results highlight that the gendered tension between paid and unpaid work persists into older adulthood and needs to be accounted for in working life expectancy measures. The results also underscore the gendered implications of population aging and unpaid work in older adulthood for retirement age policies and strategies for promoting gender equality in later life.

Qualitative study of how care is planned and delivered to people living with dementia and a long‐term condition

AbstractBackgroundDementia rarely travels alone. In the UK, almost 8 in every 10 people with dementia have another chronic condition. Long‐term conditions require continuous management in primary care, including support for self‐management. Tailoring physical health care plans to account for dementia is vital and requires skill and confidence from health care professionals. The objective of this study was to understand how care is planned in primary care, and how professional advice is followed at home, when a person has dementia and a long‐term condition.MethodWe conducted a remote ethnographic study, beginning in September 2020, using qualitative interviews, participant observations supplemented by care plan document analysis and event‐based diaries. We invited people with dementia and their family carers, and relevant health and social care professionals and/or home care workers involved in care of long‐term conditions to participate. We used inductive thematic analysis to analyse observations and interviews and integrated the findings with document analysis to ensure data triangulation.ResultPreliminary findings indicate a degree of disconnect between participant account of health care and documented medical notes, specifically between the ‘goal setting’ and ‘action planning’ aspects of care planning. Participants discussed the impact of the pandemic and reduced physical contact with primary care; in addition to aspects of holistic health management such as the closure of swimming pools. We consider how relationships between participants and general practitioners, homecare workers, and pharmacists are constructed within the care networks of people living with dementia and how these have shifted during the pandemic. We will present our reflections on conducting remote observations with people with dementia, including challenges of developing trust over the phone and overcoming technology barriers.ConclusionContinued involvement of people with dementia in healthcare and in research is imperative despite the challenges of remote contact. Special consideration is required for people with dementia who lack capacity to ensure proxy management by family or home care workers does not become primary management.

Caregiving as suicide-prevention: an ecological 20-country study of the association between men's family carework, unemployment, and suicide.

Suicide rates are generally higher in men than in women. Men's higher suicide mortality is often attributed to public-life adversities, such as unemployment. Building on the theory that men's suicide vulnerability is also related to their private-life behaviors, particularly men's low engagement in family carework, this ecological study explored the association between men's family carework, unemployment, and suicide. Family-carework data for twenty Organization for Economic Co-operation and Development (OECD) countries were obtained from the OECD Family Database. Sex-specific age-standardized suicide rates came from the Global Burden of Disease dataset. The association between men's engagement in family carework and suicide rates by sex was estimated, with OECD's unemployment-benefits index and United-Nations' Human Development-Index (HDI) evaluated as controls. The moderation of men's carework on the unemployment-suicide relationship was also assessed. Overall and sex-specific suicide rates were lower in countries where men reported more family carework. In these countries, higher unemployment rates were not associated with higher male suicide rates. In countries where men reported less family carework, higher unemployment was associated with higher male suicide rates, independent of country's HDI. Unemployment benefits were not associated with suicide rates. Men's family carework moderated the association between unemployment and suicide rates. This study's findings that higher levels of men's family carework were associated with lower suicide mortality, especially among men and under high-unemployment conditions, point to the suicide-protective potential of men's family carework. They are consistent with evidence that where gender equality is greater, men's and women's well-being, health, and longevity are greater.

Care Life Expectancy: Gender and Unpaid Work in the Context of Population Aging.

Amid growing concern regarding the potential added burden of care due to population aging, we have very little understanding of what is the burden of care in aging populations. To answer this question, we introduce a novel metric that encompasses demographic complexity and social context to summarize unpaid family care work provided to children, elderly, and other family members across the life cycle at a population level. The measure (Care Life Expectancy), an application of the Sullivan method, estimates the number of years and proportion of adult life that people spend in an unpaid caregiving role. We demonstrate the value of the metric by using it to describe gender differences in unpaid care work in 23 European aging countries. We find that at age 15, women and men are expected to be in an unpaid caregiving role for over half of their remaining life. For women in most of the countries, over half of those years will involve high-level caregiving for a family member. We also find that men lag in caregiving across most countries, even when using the lowest threshold of caregiving. As we show here, demographic techniques can be used to enhance our understanding of the gendered implications of population aging, particularly as they relate to policy research and public debate.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11113-021-09640-z.

Is Pain Assessment of Community-Dwelling Persons With Advanced Dementia by Family and Paid Care Workers Feasible?

ContextThe experience of pain is aggravated among older persons with advanced dementia (OPAD). It is often undetected and therefore untreated because of their limited capacity to identify and report their symptoms. Therefore, it is crucial to improve the pain identification skills of those who know and live with them. ObjectivesTo compare the identification of pain among OPAD between family members and paid care workers and to compare the detection of pain through the use of two common assessment tools. MethodsThis study is a cross-sectional comparison conducted between 82 dyads of informants: the family member of OPAD and the paid care worker, a total of 164 individuals. MeasurementsThe study used two previously validated pain assessment tools for persons suffering from dementia: the Pain Assessment in Noncommunicative Elderly persons tool (PAINE) and Pain Assessment in Advanced Dementia tool (PAINAD), and a general impression question. ResultsBoth family members and paid care workers were able to successfully use both tools. The correlation between family members' ratings and paid care workers' ratings was statistically significant for all the assessments. The correlations between raters were higher when family members lived with the OPAD. The correlations between PAINE and PAINAD scores were moderate and significant, both among family members and paid care workers. ConclusionThis study shows that it is feasible to improve the assessment and identification of pain among OPAD, through the use of validated tools by family members and paid care workers, suggesting the potential to improve quality of care and quality of life of OPAD.

Self-Directed Female Migration in Ghana: Health and Wellness of Elderly Family Caregivers Left Behind. An Ethnographic Study.

Driven by the global economic crisis, families are developing strategies for survival, including self-directed female migration. Female migration has negative and positive impacts on families in rural areas. The purpose of the project was to explore the health and wellness experiences of elderly family caregivers who have female family members who have migrated to improve the status of their families. In this focused ethnographic study, we interviewed elderly family members who had a female family member who migrated outside their community for employment. Participants were enrolled from northern Ghanaian communities known to be economically disadvantaged in comparison to their southern counterparts. All interviews were audio-recorded, transcribed verbatim, and translated into English. Data were analyzed based on thematic content. Majors themes that emerged were reasons for children leaving their families; physical, emotional, and spiritual health; and social and economic struggles. Challenges of family care work undertaken by the elderly in families with emigrated female kin strongly also emerged as a theme. New contextual knowledge was developed about the impact of self-directed female migration on the health and wellness of elderly family caregivers. The information is valuable for the development of culturally appropriate social support and health practices for female migrants and their families.

Effectiveness of Communication Board on Level of Satisfaction Over Communication among Mechanically Venitlated Patients

Mechanical ventilation is widely used to treat patients with critical conditions. This treatment is usually applied for difficulty in breathing. The use of mechanical ventilation devices has unique benefits to the patient. However, it can also cause various problems. Reduction in communication rank as one of the most negative experiences in mechanically ventilated patients. Effective communication with ventilator-based patients is essential. Nursing management of a mechanically ventilated patient is challenging on many levels, requiring a wealth of high technical skills. The Patient Communications Board improves communication, maintains information and creates a comfortable, attractive setting for patient, family and health care workers. The research methodology used for the study is a Quasi experimental approach, post-test only design with a comparison group to assess the effect of the communication board on the level of satisfaction over communication among clients on mechanical ventilator. The sample was selected by purposive sampling technique and included 30 (experimental group-15, control group-15), mechanically ventilated patients in PESIMR hospital, Kuppam. The control group patients were provided with routine communication methods, while the experimental group were communicated with communication board. The level of satisfaction on communication was assessed by a 15items rating scale. Data was analysed using both the descriptive and inferential statistics. There was a significant difference in the level of satisfaction on communication among the patients who were communicated using communication board compared to the routine method of communication. The communication board had significantly improved the communication pattern and increased the satisfaction among the patients who are mechanically ventilated.

Care workers’ ambivalence towards family care partners: informal decision-making processes when older people consider relocation to a residential home

The aim of this article is to reveal how care workers in the home-help service interpret the influence of family care partners when older people’s relocation to a residential home is considered. Based on interviews with 33 care workers, this article investigates how they use their discretion. The analysis shows that the care workers express ambivalence towards family care workers and that they informally influence decision-making processes despite prevailing care management systems. The conclusion drawn are that welfare ideas in transformation and diffuse areas of responsibility may not benefit either care workers, family care partners or a care receiver’s self-determination.

Behaviour model for diabetic ulcer prevention.

Diabetic ulcers are one of the complications that often occur in patients with DM. The aim is to develop a behaviour model for diabetic ulcer prevention by integrating Lawrance Green Theory and the Theory of Planned Behaviour. An explanative observational design was used with a cross-sectional approach. The population consisted of DM patients who had underwent treatment at the internal medicine clinic of Sidoarjo District Hospital. The sample size of 133 respondents was obtained through purposive sampling. The data analysis used Partial Least Square. Predisposing factors (knowledge), supporting factors (availability of health facilities and accessibility of health resources) and driving factors (the role of health workers and family support) significantly influence the main factors (attitudes toward behaviour, subjective norms and perceptions of self-control) with a statistical T value>1.96. The main factor influences intention (T = 48.650) and intention influences behaviour (T = 4.891). Intention is influenced by the attitudes toward behaviour, subjective norms and self-control perceptions. Good intentions can increase the preventive behaviour related to diabetic ulcers. Increasing the diabetic ulcer prevention behaviour can be done by providing regular education to both the patients and their families about diabetic ulcers and their prevention through the appropriate management of DM, lifestyle modification and regular foot care that requires active involvement from the family and health care workers.

“Were You a Monster Today?” Making Assessments with Families: Thoughts and Practices

Assessing family care work is an extremely complex task, full of risks (because it concerns people’s life). It requires sensitivity, great self-awareness and awareness of one's own prejudices and of one’s own idea of family. In order to make an assessment professionals must have a curious attitude, capable of constantly seeking connections between interacting subjects, and these subjects include the observer him/herself, his/her thoughts and epistemology. This paper presents the reflections emerging from a high level inservice training course aimed at care and education professionals, based on narrative and reflective methodologies.

How do daughters interpret care as a public issue? Exploring identity, emotion and discourse in the narratives of activist-inclined carers of older parents

ABSTRACT This paper starts from the premise that family care work is more than an individual struggle – it is a public issue requiring collective engagement towards structural change. But how do carers themselves become engaged in forms of activism designed to achieve such change? In this paper, we present findings from an exploration into how five activist-inclined carers of older adults (all daughters) interpret the meaning of care work. We examine whether and how their narratives manifest an understanding of care as a public issue and responsibility. Cases were theoretically sampled from a larger qualitative dataset; each woman participated in 2–3 interviews over a 2-year period. Findings illuminate the complexities of identity, emotion and broader discourses as these intersect in the daughters’ narratives. Echoing the invisibility of carer needs and of the gendered nature of family care work, participants’ activist inclinations tended to foreground the needs of older adults; to the extent that they supported structural changes to help families, this was to assist carers in their primary responsibility for parent care. Moreover, none of the women framed their efforts as part of a feminist struggle. Discussion addresses implications for the empowerment and engagement of carers within broader advocacy movements.

Conflict and negotiation in intergenerational care: Older women’s experiences of caring with the Old Age Grant in South Africa

Social policy and welfare provision have converged with socio-economic conditions, cultural beliefs about kin support and intra-household dynamics to position older women as important financial providers in their families. This article draws on the findings of a qualitative study about intergenerational relationships of care in a large township near Cape Town. Semi-structured interviews were conducted with fourteen female Old Age Grant recipients and some of their co-resident adult children. The article focuses on the grant recipients’ experiences of giving and receiving financial support (‘financial care’) in their intergenerational relationships. It also unpacks the intra-household dynamics involved in this caregiving. Although the grant better enabled the women in the study to meet the needs of their households, beliefs about the mutual and shared responsibility for financial caregiving in families informed their expectations of financial assistance from younger kin. When their co-resident younger relatives did earn an income, negotiations around the provision of financial care ensued; generating conflict and reflecting unequal power relations between relatives. These dynamics contributed to the women’s experiences of vulnerability and their high burden of care. In this context, the article examines the state’s role in the care process and how it has contributed to the gendered and generational distribution of care work in families.

Contact tracing in Lassa fever Outbreak Response, an effective strategy for control?

ObjectiveTo identify risk factors among contacts of Lassa fever cases which can predispose to disease spread and institute control measures.IntroductionContact tracing is an important strategy employed in surveillance to aid prompt detection of infectious disease and control outbreaks. It involves the identification of those who have come in contact with an infectious person and following them up for the duration of the incubation period of the disease to promptly detect symptoms and signs and institute treatment thus reducing chances of disease spread to other susceptible individuals. It is a primary means of disease prevention. The importance of cooperation from contacts being traced cannot be overemphasized as they are required to promptly report symptoms, avoid gatherings and travelling until they are cleared by the surveillance team. The follow-up should also link contacts who become symptomatic to designated care centers. In 2014, during the Ebola outbreak in Nigeria, the disease spread from Lagos to another State in the country by a contact who travelled out of Lagos to Rivers state.To identify risk factors among contacts of Lassa fever cases which can predispose to disease spread and institute control measures, we interviewed primary contacts of Lassa fever cases during an outbreak response in Kogi State Nigeria, 2016MethodsWe Identified contacts of Lassa fever cases (confirmed/suspected/probable) among family, friends, community members, co-workers and health care workers, followed up for 21 days during a Lassa fever outbreak which started in February 2016 at Kogi State Nigeria. Contacts were interviewed using a structured interviewer administered questionnaire with sections on demography, risk factors for infection and spread of Lassa fever, symptoms developed during the follow-up period and adherence to prorocol. Control measures were instituted to address identified gaps. We defined a contact as anyone irrespective of age, occupation or sex who came in contact with any of the cases of Lassa fever classified as either confirmed/suspected/probable and used standard IDSR case definitions for Suspected, Confirmed and Probable cases of Lassa fever. Data was analysed with Epi Info version 7ResultsOverall 149 contacts were interviewed, 79 (53.0%) were female, the mean age of respondents was 33.2 +-10.1 and many were health care workers 61(40.9%). Of the respondents, 18 (12.0%) live or work in areas infested with rodents, 21 (14.1%) ate bush meat, 2 (2.5%) of the females were pregnant and 20 (13.4%) of respondents travelled out of station with 1 (5%) contact crossing international borders. During the follow-up period, 14 (9.4%) developed symptoms suggestive of Lassa fever. Of these 12 (85.7%) sought treatment and the options were self-medication 3 (25.0%) and presenting at a health facility 9 (77.8%). The health facilities visited were mainly privately owned 7(77.9%) and only 1 (11.1) was a tertiary health care facility. We instituted the following interventions; Health education of contacts and linkage of symptomatic contacts to the designated treatment center where treatment commenced and samples were collected and sent to reference lab for diagnosis. All samples 14(100%) came back negative for Lassa fever.ConclusionsContact tracing is an important strategy in controlling outbreaks of infectious diseases. However, risk factors identified among contacts can hinder the effectiveness of this strategy and facilitate spread of the disease. We recommend training on health education and Lassa fever transmission for contacts of cases and the need to adhere to protocol so that the ultimate aim of interrupting transmission can be achieved.ReferencesNigeria Center for Disease Control.Viral Haemorrhagic Fevers,Preparedness and Response Plan.2017