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 caregiving in advanced chronic organ failure

ObjectivesTo assess caregiver burden as well as positive aspects of family caregiving in advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF).DesignCross-sectional observational study.SettingPatients recruited at the outpatient clinics of academic and general hospitals in the Netherlands.ParticipantsPatients with advanced COPD (n = 73), CHF (n = 45), and CRF (n = 41) and their family caregivers.MeasurementsCaregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care and were compared among family caregivers of patients with COPD, CHF, or CRF using linear regression analysis while controlling for characteristics of patients and family caregivers.ResultsMost family caregivers were female partners of participating patients. Caregiver distress and caregiver strain scores were relatively low, whereas scores for positive caregiving appraisals and family well-being were relatively positive. Caregiver strain, positive caregiving appraisals, and family well-being were comparable for family caregivers of patients with COPD, CHF, or CRF. Caregiver distress was higher for family caregivers of patients with COPD than CHF. The experience of caregiving was influenced by being the patient's spouse, patient's psychological symptoms, and the presence of comorbidities.ConclusionsFamily caregiving for patients with COPD, CHF, or CRF should not only be seen as a burden, but also as a positive experience. To support family caregivers, attention should be paid to caregiver burden and the positive aspects of family caregiving.     

The environmental and social influences of HIV/AIDS in sub-Saharan Africa: a focus on rural communities

The Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS) pandemic has caused far-reaching effects in sub-Saharan Africa. The pandemic has effectively diminished the workforce, increased poverty rates, reduced agricultural productivity, and transformed the structure of many rural households. HIV/AIDS further strains the already fragile relationship between livelihood and the natural and social environments of these regions. Therefore, the objective of this review is to characterize the impact of HIV/AIDS on the environment and the social infrastructure of rural sub-Saharan Africa. There are many aspects of rural life that contribute to disease transmission of HIV/AIDS and that pose unique challenges to the population dynamics in sub-Saharan Africa. Widespread AIDS-related mortality has caused a decrease in population growth for many African countries. In turn, these alterations in population dynamics have resulted in a decrease in the percentage of prime-age working adults, as well as a gender disparity, whereby, females carry a growing burden of household responsibilities. There is a rising proportion of older adults, often females, who assume the role of provider and caretaker for other dependent family members. These changing dynamics have caused many to exploit their natural surroundings, adopting less sustainable land use practices and utilizing protected resources as a primary means of generating revenue.     

Sustaining the relationship: women's caregiving in the context of HIV disease

In North America and throughout the world the number of persons living with human immunodeficiency virus (HIV [PLWH]) continues to increase. Before the recent discoveries of effective antiviral treatments that have given hope to families of PLWH, acquired immune deficiency syndrome (AIDS) was looked upon as a disease that was a virtual death sentence to those who were infected. The symptoms and opportunistic infections associated with AIDS are varied and debilitating, and PLWH require intensive and prolonged care during their many illnesses and rigorous treatments. As medical breakthroughs have prolonged the lives of the infected persons, the complicated regimens of the treatments and the physical effects of both treatment and disease continue to require the support and caregiving of family members. As is so often the case with caregiving, the tasks of caring for the men, women, and children with AIDS have been taken on in many cases by the women in their lives: their mothers, sisters, aunts, and other family members. In this study I used the grounded theory method to generate a substantive theory of women's caregiving in the context of AIDS. The primary process for collection of data in this study was interviewing participants. In-depth interviews were conducted with 9 women who ranged in age from 28 to 65. Three of the women had AIDS and were also caregivers, 3 other caregiving women were sisters, and 3 were mothers of PLWH. Five of the informants were White and 4 were African American. The basic social psychological process (BSPP) that emerged from the analysis of the data was sustaining the relationship. In this study, role transition, managing behavior, reciprocal caring, balancing independence, and managing distance were categories of the BSPP, "sustaining the relationship" as women engaged in the intricate processes of caregiving. These were overlapping and interacting processes that women used to nurture and preserve not only the object of their care, the person with HIV, but also that person's relationships with her or his significant others, including the relationship with the caregiver. In this article, relationships between categories are illustrated with quotations from the data. Implications for future research and for clinical practice are discussed.     

Infection control in home-based care for people living with HIV/AIDS/TB in South Africa: An exploratory study

The majority of HIV and AIDS patients in sub-Saharan African countries receive health care services at home. Yet research on infection control in home-based care settings is virtually non-existent. This study explored infection control practices in home-based care in a South African province with a high HIV/TB prevalence. We conducted interviews with 10 managers of home-based care organizations and 10 focus group discussions with 80 volunteer caregivers working in high HIV/TB prevalent communities in South Africa. Findings show that volunteers had insufficient training on infection control. Materials necessary for the maintenance of hygiene and protective equipment were in short supply and the protective equipment supplied was of poor quality. Home-based care patients lived in crowded and poor conditions, and family members were negatively disposed to the use of protective devices. Together, these factors put volunteers and family caregivers at risk of infection with HIV and TB. Health policy should address the training of volunteer caregivers and the regular supply of good quality materials to ensure effective infection control. It is also important to educate families on infection control. Finally, there is a need to integrate HIV and TB control at the community level.     

Latest figures on AIDS

In its June 1998 report on the global AIDS epidemic, UNAIDS noted that HIV has more than doubled the adult mortality rate in some countries and is the leading cause of death in many countries in East Africa. Over 80% of AIDS deaths have occurred in sub-Saharan Africa. In South Africa, there are an estimated 2.9 million HIV-positive persons, 700,000 of whom were infected in 1997 alone. In Botswana, 25% of adults are HIV-positive. Encouraging, however, are indications that HIV infection rates among younger people are falling in Uganda and Tanzania in response to active AIDS prevention programs. Even in countries where expensive antiretroviral therapies are not feasible, increased access to HIV testing and counseling can promote risk-reduction behaviors.     

SUSTAINING THE RELATIONSHIP: WOMEN'S CAREGIVING IN THE CONTEXT OF HIV DISEASE

In North America and throughout the world the number of persons living with human immunodeficiency virus (HIV [PLWH]) continues to increase. Before the recent discoveries of effective antiviral treatments that have given hope to families of PLWH, acquired immune deficiency syndrome (AIDS) was looked upon as a disease that was a virtual death sentence to those who were infected. The symptoms and opportunistic infections associated with AIDS are varied and debilitating, and PLWH require intensive and prolonged care during their many illnesses and rigorous treatments. As medical breakthroughs have prolonged the lives of the infected persons, the complicated regimens of the treatments and the physical effects of both treatment and disease continue to require the support and caregiving of family members. As is so often the case with caregiving, the tasks of caring for the men, women, and children with AIDS have been taken on in many cases by the women in their lives: their mothers, sisters, aunts, and other family members. In this study I used the grounded theory method to generate a substantive theory of women's caregiving in the context of AIDS. The primary process for collection of data in this study was interviewing participants. In-depth interviews were conducted with 9 women who ranged in age from 28 to 65. Three of the women had AIDS and were also caregivers, 3 other caregiving women were sisters, and 3 were mothers of PLWH. Five of the informants were White and 4 were African American. The basic social psychological process (BSPP) that emerged from the analysis of the data was sustaining the relationship. In this study, role transition, managing behavior, reciprocal caring, balancing independence, and managing distance were categories of the BSPP, "sustaining the relationship" as women engaged in the intricate processes of caregiving. These were overlapping and interacting processes that women used to nurture and preserve not only the object of their care, the person with HIV, but also that person's relationships with her or his significant others, including the relationship with the caregiver. In this article, relationships between categories are illustrated with quotations from the data. Implications for future research and for clinical practice are discussed.     

Reframing the HIV/AIDS debate in developing countries I: setting the scene

In 2001, it was estimated that 4.7 million South Africans were living with HIV/AIDS. Prevalence figures have risen steadily over the past 10 years in most African countries, and in only a few, like Uganda, does the epidemic show signs of waning. In Africa, the status of the obese has risen enormously. If you're fat, you don't have AIDS. The epidemic is fuelled by many factors. These include: a lack of basic education about HIV risk; migrant labour disrupting family stability; polygamous marriages; patriarchal practices; and a lack of basic human rights, including being able to refuse intercourse, for women. Health care systems struggle and fail to cope with overwhelming demands, and the scale of the human loss risks dehumanising carers and health workers. Doctors evolve coping strategies, as do health systems and governments. Aid from the Western world has, until recently, been tokenistic in scale. HIV/AIDS in Africa is substantially a result of the socioeconomic and political realities of the past and present, and is related to the continued exploitation of developing countries by developed nations. This article was the introductory paper in the 'HIV/AIDS in the Developing World workshop' of the 2003 WONCA World Rural Health Congress, Santiago de Compostela, Spain. The concluding 'Santiago de Compostela Statement on HIV/AIDS' was adopted at the congress, and is offered here as a suggested way forward.     

Family support for hospice caregivers

This qualitative study investigated family supports for primary caregivers of hospice patients, as perceived by both the primary caregiver and other family members involved in patient care. Family support was conceptualized in terms of (1) who offers support; (2) types of support; (3) frequency of support; (4) family communication; and (5) change in family relationship during the caregiving process. Twenty-four interviews were conducted with 10 primary caregivers and six family members identified by the caregiver as the person they could most call on for help. Interviews were conducted shortly after admission to hospice and approximately two months after the death of the hospice patient. Primary caregivers and other family members involved in care agreed that the primary caregiver provided most care. They also agreed that family members provided instrumental and emotional support, the frequency of assistance was appropriate, and families had grown closer since learning of the terminal illness. There was less agreement regarding family communication during the caregiving process. Implications for interventions with families of hospice patients are discussed.     

Predictors of caregiver burden across the home‐based palliative care trajectory in Ontario,Canada

Family caregivers of patients enrolled in home‐based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non‐modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home‐based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi‐weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home‐care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non‐linear fashion from study admission to patient death. Increased monthly unpaid care‐giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non‐modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care‐giving demands, thereby potentially allowing for longer patient care in the home setting.     

Nutrition education may reduce burden in family caregivers of older adults

The chronic, demanding nature of family caregiving for frail older adults creates a high degree of stress for caregivers, called caregiver burden. Caregiver burden compromises caregivers' emotional and physical health and health-promoting behaviors. Deterioration in caregivers' health and nutritional status may put caregivers at risk for chronic disease, diminish the ability of caregivers to provide care, and impair the quality of life experienced by caregivers and care recipients. Nutrition education may help reduce caregiver stress and maintain caregivers' health and well-being. Mediating caregiver stress may allow family caregivers to meet their societal role, which has intensified because of health care cost containment.     

Resources for the Family Caregiver: A Review of the Family Caregiver Alliance and the AARP Caregiving Resource Center

The rate of family caregiving is steadily increasing as baby boomers retire and their loved ones step into the role as family caregiver. Whether caregiving is a sudden or anticipated role, caregivers are often unsure of where to turn for information or aide, and face many challenges including stress, depression, anxiety, and financial burdens. Credible, easy, and useful online resources are abundant, and the Family Caregiver Alliance and the AARP Caregiving Resources Center are no exception. Each provide excellent starting points for caregivers new to the role, or seasoned caregivers seeking additional information. Other sources compliment these pivotal sites, but each can stand alone as a primary source for family caregiving information.     

Understanding the gender disparity in HIV infection across countries in sub-Saharan Africa: evidence from the Demographic and Health Surveys

Women in sub-Saharan Africa bear a disproportionate burden of human immunodeficiency virus (HIV) infections, which is exacerbated by their role in society and biological vulnerability. The specific objectives of this article are to (i) determine the extent of gender disparity in HIV infection; (ii) examine the role of HIV/acquired immune deficiency syndrome (AIDS) awareness and sexual behaviour factors on the gender disparity and (iii) establish how the gender disparity varies between individuals of different characteristics and across countries. The analysis involves multilevel logistic regression analysis applied to pooled Demographic and Health Surveys data from 20 countries in sub-Saharan Africa conducted during 2003-2008. The findings suggest that women in sub-Saharan Africa have on average a 60% higher risk of HIV infection than their male counterparts. The risk for women is 70% higher than their male counterparts of similar sexual behaviour, suggesting that the observed gender disparity cannot be attributed to sexual behaviour. The results suggest that the risk of HIV infection among women (compared to men) across countries in sub-Saharan Africa is further aggravated among those who are younger, in female-headed households, not in stable unions or marital partnerships or had an earlier sexual debut.     

Integrating HIV management for children into the Integrated Management of Childhood Illness guidelines

The WHO/UNICEF strategy of Integrated Management of Childhood Illness (IMCI) has been adopted as a strategy for improving paediatric care in resource-poor settings. The original IMCI guidelines recommend referral of children with severe or recurrent illnesses such as those common in HIV/AIDS, however the specific identification and management was not included. In many countries, especially in sub-Saharan Africa, HIV/AIDS contributes significantly to child morbidity and mortality. There was a need to include the specific assessment and management of symptomatic HIV infection in IMCI guidelines. A draft HIV component of the IMCI guidelines was developed, which included management of symptomatic HIV cases with referral for counselling and testing, and was evaluated in South Africa. A revised version was then validated in Ethiopia and Uganda where HIV, malnutrition and malaria prevalence is different from South Africa. IMCI materials have been adapted to include an HIV component. Currently, very few children under 15 years of age receive antiretroviral therapy (ART). Chronic HIV care of children, including ART for children, has been developed within the Integrated Management of Adolescent and Adult Illness (IMAI) initiative of the WHO. Through this initiative, the WHO is assisting countries to facilitate care and treatment of children undergoing ART.     

Stress variances among informal hospice caregivers

Care interventions are not routinely provided for hospice caregivers, despite widespread documentation of the burden and toll of the caregiving experience. Assessing caregivers for team interventions (ACT) proposes that holistic patient and family care includes ongoing caregiver needs assessment of primary, secondary, and intrapsychic stressors. In this study, our goal was to describe the variance in stressors for caregivers to establish evidence for the ACT theoretical framework. We used secondary interview data from a randomized controlled trial to analyze hospice caregiver discussions about concerns. We found variances in stress types, suggesting that caregiver interventions should range from knowledge and skill building to cognitive-behavioral interventions that aid in coping. Family members who assume the role of primary caregiver for a dying loved one need to be routinely assessed by hospice providers for customized interventions.     

Predictors of the Extent of Agreement for Quality of Life Assessments Between Terminally Ill Cancer Patients and their Primary Family Caregivers in Taiwan

The use of family caregivers to report patients’ dying experiences has been suggested as a way of resolving the problem of non-response bias and missing data in end-of-life research. There is a dearth of information in the literature about the predictors of the extent of agreement for quality of life (QOL) assessments between patients and family informants outside of Western countries. In addition, to date there has been little progress made in deciphering meaningful influencing factors on the levels of agreement between patient and family QOL assessments. The purpose of this study was to identify the impact of the demographics and disease characteristics of patients and families, relationships of the patient to family caregiver, and caregiving burden on the extent of agreement for QOL assessments between Taiwanese terminally ill cancer patients and their family caregivers. Results from assessments by 114 dyads of Taiwanese terminally ill cancer patients and their family caregivers indicated that the extent of agreement between patient and family assessments of patient QOL was negatively influenced by the caregiving burden (amount of care needed and the impact of caregiving on caregiver’s health), positively influenced by the patient’s poorer health status, and there were a mixed effect of the demographics and the relationship between the patient and the family. Providing clinical care tailored at empowering families and aimed at reducing their unmet caregiving needs may improve family caregivers’ abilities to assess patient QOL sensitively.     

The political environment of HIV: lessons from a comparison of Uganda and South Africa

Considerable interest has arisen in the role of governance or political commitment in determining the success or failure of HIV/AIDS policies in sub-Saharan Africa. During the 1990s, Uganda and South Africa both faced dramatic HIV/AIDS epidemics and also saw transformations to new political systems. However, their responses to the disease differed in many ways. This paper compares and contrasts the ways in which policy environments, particularly government structures, can impede or expedite implementation of effective HIV prevention. Four elements of these environments are discussed--the role of political leadership, the existing bureaucratic system, the health care infrastructure, and the roles assigned to non-state actors. Two common international strategies for HIV prevention, syndromic management of sexually transmitted infections and sexual behaviour change interventions, are examined in relation to these elements in Uganda and South Africa during the mid-to-late 1990s. During this period, Uganda's political system succeeded in promoting behaviour change interventions, while South Africa was more successful in syndromic management efforts. Interactions between the four elements of the policy environment were found to be conducive to such results. These elements are relatively static features of the socio-political environments, so lessons can be drawn for current HIV/AIDS policy, both in these two countries and for a wider audience addressing the epidemic.     

Entry and re‐entry into informal care‐giving over a 3‐year prospective study among older people in Nairobi slums,Kenya

This paper analyses data from a 3‐year prospective study to understand the factors associated with becoming a caregiver to a person with a chronic illness and examines the dynamics among caregivers over time. A total of 1485 participants were drawn from a study conducted in the slums of Nairobi, Kenya. Two waves of data collected in 2006 for the baseline and a follow‐up in 2009 were used. Information on the demographic, self‐reported health and socioeconomic characteristics such as education, sources of livelihood and employment status was used. Age was a significant factor in becoming a caregiver, but there were no significant differences by gender or marital status. New caregivers and those with more than one care‐giving episode had a higher socioeconomic position than non‐caregivers. Caregivers also had poorer health compared with non‐caregivers, highlighting the association between being a caregiver and negative health outcomes. Additionally, having cared for someone with a HIV‐related illness compared with other chronic conditions increased the likelihood of subsequently caring for another person in need of long‐term care. This may be due to the heterosexual mode of HIV transmission in sub‐Saharan Africa, hence clustering of infection within family or married couples. This finding draws attention to the need to provide timely interventions to caregivers for people with HIV‐related illness who are likely to end up providing care to multiple care recipients. Furthermore, there is a need to enhance the indispensable contribution of informal caregivers through incorporating their role within the continuum of care for effective HIV and AIDS management. Overall, informal caregivers to persons with chronic illnesses perform the tasks of care‐giving without any formal support from health or social services. Therefore, it is crucial to initiate policies and programmes to ease the burden of care that is borne by informal caregivers.     

Evaluation of gender differences of family caregivers with reference to the mode of caregiving at home and caregiver distress in Japan

PURPOSE: Male caregivers are growing in number, as the frequency of spouse caregiving rapidly increases. This study aimed to examine gender differences in family caregivers with reference to the mode of caregiving and caregiver distress in Japan. It was designed to clarify the characteristics of both female and male caregivers. METHODS: The subjects were 2,020 users of public Long-term Care Insurance, randomly stratified and sampled in Higashi-osaka city, Osaka prefecture. Data were collected through mailed, anonymous self-report questionnaires. 1,287 (63.7%) surveys were collected and data from 868 caregivers and care recipients were analyzed, after excluding incomplete cases from 947 participants who were family caregivers. We compared males and females for the level of nursing needs, cognitive disorders of their care recipients, the types and amounts of care provided, the levels of their burdens and the depression associated with providing care, the availability of informal support, the frequency of usage of Long-term care insurance services, and the types of stress coping strategies. RESULTS: Of the total, 27.1% of the caregivers were male. Their age was higher than that of females, but the age of care recipients of female caregivers was significantly higher than that of care recipients of males. There were no significant gender differences in the level of nursing needs of recipients. However, cognitive disorders of care recipients of female caregivers were more severe. Female caregivers spent more time providing care, and performed a greater number of care activities. In particular, female caregivers assisted their care recipients in taking medications, dressing, bathing, eating, meal preparation, shopping, laundry, and money management more often to a significant degree. Furthermore, the average scores for burden and depression were higher in female than in male caregivers. Concerning the usage of Long-term care insurance services, males used a Home-helper service more often. Female caregivers used types of Informal support seeking and Positive acceptance of caregiving role as coping strategies more often than the men. Multiple logistic regression analysis indicated that caregiver's subjective burden and types of informal support seeking, as well as acceptance of the caregiving role were significantly higher in female caregivers. CONCLUSIONS: These results suggest that there are significant gender differences regarding the mode of caregiving and experience of caregiver distress in Japan. It is important that future research be focused on supplying appropriate social support for family caregivers, taking gender differences into account.     

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.