Family caregivers in rural Uganda: the hidden reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.     

Family Caregivers in Rural Uganda: The Hidden Reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls.

This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.     

Supporting the elderly: workplace programs for employed caregivers.

An aging population and extended longevity are increasing the number of older people needing informal and family support. At the same time, women, the traditional caregivers, have entered the work force in record numbers. Consequently, concerns about how to care for dependent family members have become workplace issues. In response to the needs of employees who care for family members, employers have produced an array of policies, benefits, and programs, including flexible work schedules and information and referral services. Although these programs are a valuable complement to community services and government initiatives, relatively few employers have recognized the potential effects of caregiving on absenteeism, productivity, and turnover; even fewer have responded with workplace programs directed to the needs of their caregiving employees. To fill the gap, the government is considering mandating employee benefits, such as leave time for family illness. Community services are increasingly being directed to the needs of older people and their caregivers.     

Health,well‐being,and social support in older Australian lesbian and gay care‐givers

Informal care‐givers play an important role in society, and many of the people who provide this care are lesbian women and gay men. Being a care‐giver is known to be associated with poorer health and well‐being, and lesbian and gay care‐givers report experiences of stigma and discrimination in the care‐giving context. This study involved a survey of 230 lesbian women and 503 gay men aged 60 years and over living in Australia, of which 218 were care‐givers. We compared care‐givers to non‐caregivers on a range of health and well‐being measures, including psychological distress, positive mental health, physical health and social support. While we found no significant differences between these two groups, we further compared care‐givers who were caring for an LGBTI person to those who were caring for a non‐LGBTI person. Among the lesbian women, care‐givers of an LGBTI person reported feeling less supported in their carer role and reported lower levels of social support more generally. They were also lower on positive mental health and physical health indicators. Among the gay men, care‐givers of an LGBTI person also reported feeling less supported in their carer role, but there were no differences in reported levels of social support more generally or health and well‐being compared to those caring for a non‐LGBTI person. Overall, results from this study suggest that older lesbian and gay care‐givers may be facing some challenges related to their well‐being and feeling supported, especially if they are caring for another LGBTI person.     

The centrality of the family as a resource for homecare: gender and generational perspectives

Given the critical situation of informal caregiving in Spain, we explore how in the current socio-economic and political context main caregivers value and understand their family members as a resource to support caregiving. This qualitative study had a postfeminist orientation and was developed in Mallorca (Spain) through individual interviews and focus groups with men and women home caregivers from three generations. The participants identified their families, understood as women, as their main source of help due to the emotional quality of care they provide. However, internal conflicts and gender inequities, among others, made us question the dominant discourse of family's privileged position to take care of dependent people. The implications of these results to public policy are discussed.     

The Effects of Severe Acute Respiratory Syndrome Coronavirus 2 on the Reported Mental Health Symptoms of Nonprofessional Carers: An Analysis Across Europe

ObjectivesThis study tries to analyze how the crisis generated by severe acute respiratory syndrome coronavirus 2 has affected the reported mental health symptoms of informal caregivers in different European countries.MethodsThe Survey of Health, Ageing and Retirement in Europe-COVID-19 was used, collecting information from the beginning of June 2020 to August 2020 about individuals’ state of health and the care they received. Several probit regression models were used to analyze the differences in the probability of (1) being sad or depressed, (2) being anxious or nervous, (3) having difficulty sleeping, and (4) feeling lonely, between individuals who provided informal care and individuals who did not. Several subanalyses by geographic area, mortality rates due to coronavirus disease 2019 (COVID-19), and long-term care expenditure were also performed.ResultsSince the outbreak of COVID-19, informal caregivers have had a higher probability of being sad or depressed of 8 percentage points (p.p.), a 7.1 p.p. higher probability of being anxious or nervous, and a 5.9 p.p. higher probability of having difficulty sleeping than non-caregivers. Informal caregivers in Southern Europe have had an 8 p.p. higher probability of being sad or depressed than non-caregivers. In Eastern Europe, this difference in probability reaches 9.7 p.p. Finally, in countries with higher mortality rates due to COVID-19, there have been greater differences in terms of being sad or depressed between caregivers and non-caregivers, regardless of expenditure on long-term care.ConclusionsSince the outbreak of COVID-19, informal caregivers in Europe have had a higher probability of reporting mental health symptoms than non-caregivers.     

Prior Family Planning Experiences of Obese Women Seeking Abortion Care

BackgroundThe prevalence of obesity among women of reproductive age calls for research focused on strategies that ensure obese women receive high-quality reproductive health care. This study adds to this literature on service delivery by exploring obese women's experiences receiving or avoiding family planning care.MethodsWe included 651 women seeking abortion care who completed iPad surveys about their previous family planning experiences.FindingsOne quarter were classified as obese, with almost 5% morbidly obese. Only 1% of obese women reported avoiding family planning care. More than 12% of morbidly obese women reported not having their family planning needs met (pap smears, sexually transmitted infection testing, or ultrasonography). This is compared with only 2% among overweight and obese women and 0% among normal and underweight women. Almost 10% of obese and morbidly obese women reported that at least one of the previous family planning clinics they had visited was not prepared to provide care for heavier women and around 25% of obese women reported at least one item in the clinic (such as blood pressure cuffs and examination gowns) was not adequate for their size.ResultsContrary to expectations, we did not find that obese women avoided family planning care. However, morbidly obese women reported not having all of their family planning needs met when they attended care. Family planning providers should ensure that their facilities have the capacity to meet the family planning needs of obese women and that they have adequate equipment to care for this population of women.     

Caregiving, alcohol use, and mental health symptoms among HMO members

Using data from a survey of 5841 HMO members, we examined alcohol consumption, depression and anxiety symptoms, and health services use among 689 informal caregivers. Characteristics of caregivers included whom they cared for, types of care provided, number of people cared for, and whether care was provided in the caregiver's home. Outcome measures in hierarchical linear and logistic stepwise regression models included indicators of alcohol drinking pattern, symptoms of anxiety and depression, role limits due to emotional problems and self-reported doctor's visits. Adjusting for age and gender differences, caregivers reported more bodily pain, worse role functioning related to emotional problems, were more likely to screen as depressed, and were more likely to report symptoms of anxiety. Older caregivers, and those with greater vitality, had better mental health outcomes; caregivers with higher levels of education reported better psychological well-being and less interference with role functioning due to emotional problems. Caregivers did not make more doctor's visits than non-caregivers. No caregiving characteristics were consistently associated with both mental health and alcohol consumption outcomes. The relationship of the care recipient to the caregiver predicted mental health outcomes better than either the type of care, number cared for, or location of care. Both the type of care and relationship to the care provider were associated with alcohol consumption, and several gender interactions were identified. Our results confirm previous findings of greater mental health problems among caregivers, yet suggest that caregivers may not be seeking services commensurate to their needs.     

WOMEN AND HEART TRANSPLANTATION: AN ISSUE OF GENDER EQUITY?

Heart transplantation (HT) is increasingly commonplace in countries with advanced health care systems. A review of the family and HT literature points to a gender inequity in the field: Men are more likely to be heart transplant recipients; women are more likely to contribute as their caregivers. In this critique, we argue that there are not only physiological but also social and economic issues that contribute to inequitable access to HT for women. Further, we point out that another invisible inequity in the heart transplant field is the lack of acknowledgment of, and support for, women whose contributions as family caregivers to the heart transplant process often ensure the success of heart transplant procedures. The authors call for recognition of these inequities and the development of policies that have the potential to ensure that women have equitable access to cardiovascular care in general and HT in particular, and that woman are recognized for, and supported in, their role as caregivers.     

Women and heart transplantation: an issue of gender equity?

Heart transplantation (HT) is increasingly commonplace in countries with advanced health care systems. A review of the family and HT literature points to a gender inequity in the field: Men are more likely to be heart transplant recipients; women are more likely to contribute as their caregivers. In this critique, we argue that there are not only physiological but also social and economic issues that contribute to inequitable access to HT for women. Further, we point out that another invisible inequity in the heart transplant field is the lack of acknowledgment of, and support for, women whose contributions as family caregivers to the heart transplant process often ensure the success of heart transplant procedures. The authors call for recognition of these inequities and the development of policies that have the potential to ensure that women have equitable access to cardiovascular care in general and HT in particular, and that woman are recognized for, and supported in, their role as caregivers.     

The home caregiver in Betim/MG

This is a qualitative study about the care provided by "caregivers" enrolled in the Home Care Program in Betim, Minas Gerais. Interviews were held during home visits in order to identify characteristics of home care providers, analyze their perception about health care, verify factors which interfere in home care and relationships which are established between caregiver/person cared for/other family members. Discourse analysis (Fiorin, 1993) was used to build the empirical categories which revealed that most of the caregivers are family members, women, average age of 42 years, limited schooling, mostly housewives. The subjects sampled reported that the act of caring involves technique, duty and dedication. They referred to financial difficulties, physical and emotional stress. The relationships established during care involved feelings of pleasure, satisfaction and helplessness in the face of the needs and sufferings of the person cared for. The authors concluded that home care fosters more humane care, but requires technical guidance and emotional training for the caregivers and support from the health institution.     

A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care

Canadians travelling abroad for privately arranged surgeries paid for out‐of‐pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver‐companions. Caregiver‐companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or ‘experiential resources’ they draw upon to cope with providing care and avoiding caregiver burden. The care‐giving literature has demonstrated that such burden can negatively impact caregivers’ well‐being. The unique, transnational context of care‐giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver‐companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi‐structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel; (ii) previous experiences of informal care‐giving; and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants’ perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism, we can more effectively identify supportive interventions.     

Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong

This article examines the experiences of family caregivers working with patients affected by overactive bladder (OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non‐western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care‐giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care‐giving. More holistic social and healthcare support services should be provided for care‐giving family members of patients with OAB patients, empowering such caregivers to attend to family members and care for their own emotional well‐being.     

REPORT FROM ITALY

Background: Increasing numbers of family caregivers are confronted with caring for a demented, community-dwelling relative. Living with, caring for, and supervising a demented older relative places a heavy burden on the involved family members. In particular, primary caregivers report increased strain, feelings of depression, and decreased general wellbeing as a direct consequence of care giving. Since the most common cause of failure of a home-care situation appears to be caregiver burnout, detecting critical, negative changes in the wellbeing of the caregiver is important. Methods: In a nationwide, cross-sectional study by the Belgium Social Security Board, a population of demented older patients and their care-giving relatives was investigated. The care situation and characteristics of demented, older patients and their caregivers were inventoried, and their effects on the wellbeing of caregivers were evaluated. Results: Approximately 30% (n = 28) of caregivers of demented, older relatives were depressed. Depression occurred independently of objective care characteristics and the mental and physical state of the demented patient. Rather, it was related to coping mechanisms and to the perceived burden reported by the caregiver.

Conclusion: Offering support and counsel to caregivers is an important issue in efficiently maintaining home-care situations.     

Following depression in primary care: do family practice physicians ask about depression at different rates than internal medicine physicians?

OBJECTIVE: To determine whether the chronically or recurrently depressed patients of family practice and internal medicine physicians differed in the proportion reporting that their primary care physician asked them about depression symptoms. DESIGN: A cross-sectional observational study of chronically or recurrently depressed survey respondents who identified a family practice or internal medicine physician as their primary care provider. SETTING: A large not-for-profit group-model health maintenance organization in the northwestern United States, with a population representative of its service area. PATIENTS: Health maintenance organization members (n= 1161) with ongoing or recurring depression or dysthymia who responded to a 1993 survey and who identified either a family practice or internal medicine physician as their primary care provider. Main Outcome Measure: Patients' self-report of their primary care physician asking them: (1) whether they had been feeling sad, blue, or depressed; (2) to fill out a questionnaire about their mood or feelings; and (3) whether they had been thinking about death or suicide. RESULTS: Chronically or recurrently depressed patients of family practice physicians were more likely to report that their physician asked them about depressive symptoms than were patients of internal medicine physicians (34.0% vs 27.3%) (P=.02). This finding persisted in a multivariate analysis. CONCLUSION: Family practice physicians may be more attentive to depressive disorders than internal medicine physicians.     

Life in Government Care: The Connection of Youth to Family

The purpose of this paper is to examine the family attachments of youth who have lived in foster care. Though young people are the primary recipients of services in the child welfare system, their voices are seldom heard both in research and their own plans of care. Data was gathered through a questionnaire distributed to youth aged 17–24 years. Youth named siblings more frequently than any other family member with whom they now have contact, and identified their birth family as their primary object of attachment, despite the birth family being identified the least often as those to whom the youth turn when they are sick or who they talk to about their feelings. Youth who lived in many foster homes stated they do not feel part of any family. Many youth stated that they did not feel listened to by their social workers. Support for co-operative relationships between foster parents and birth parents and alternate dispute resolution are discussed as ways of preventing young people from severing their vital family connections. This article documents a research project about how the experiences of youth’ in government care, including both foster care and group home care, affect their sense of belonging and connection to “family”. It reports findings that show that as the number of foster placements increase the “feeling of being part of a family” diminishes among youth. The research participants, twenty youth aged 17–23 years, most often identify siblings as family members with whom they still have contact, and the birth family is considered to be their most salient attachment. Many youth state that they did not feel listened to or understood by their social workers. Recommendations for social policy and child and youth care practice are discussed.