Magister Public Health - MPH / The Zambia Demographic Health Survey reports that 81% of the population of Mansa District, Zambia lives in extreme poverty. Eleven percent (11%) of this population is estimated to be HIV positive. Many of this HIV positive population were the primary breadwinners in their households prior to the onset of AIDS. The majority of them are cared for by family members (PCGs) with limited training. Home Based Care programmes provide care and support to patients at their homes. However, this support does not extend to the caregivers. This explorative study investigated the psychological, social and informational needs of primary caregivers of AIDS patients in Mansa District, Zambia. It was envisaged that the findings of the study would assist home-based care organizations to provide comprehensive support and care to the primary caregivers, in addition to patients. Methods A qualitative research approach was chosen to gain an in-depth understanding of healthrelated experiences of caregivers while taking into consideration the context within which this phenomenon takes place. Twenty-six caregivers who provide basic care and support to family members who had advanced HIV-disease were recruited into the study. All AIDS patients in the study were former breadwinners of their households. Purposive, maximum variation sampling was used to select non-homogeneous cases of family caregivers, who provided services to AIDS patients within their homes. It was envisaged that such a heterogeneous sample would provide wide variations in experiences, and this would contribute to the range of issues pertaining to caregiver needs being covered. Three Focus group discussions were conducted, audio-tape recorded and transcribed. Findings The findings of the study highlight that caregivers have the following psychological needs: reciprocated sympathy and appreciation from society and their patients, stress coping mechanisms, and the capacity to display patience despite unreasonable demands made by the patients for whom they are caring. The study highlights that caregivers face numerous challenges in dealing with conflicting relationships and in handling stigma and discrimination, and that they are in need of a strong social support network. It also emphasizes that many of the primary caregivers lack adequate information about social services organizations that can assist them with training. The training will enable those (PCGs) to provide care in a manner that does not compromise the safety of the patients or themselves, as well as give them opportunities for education and skills development for income generation that will make it possible for them to provide for the upkeep of the family. Conclusions Home-based care workers are best placed to support PCGs at home. The training of such home-based workers should be extended to take in consideration the specific needs of these caregivers. In addition, the role of primary caregivers should be acknowledged in national HIV/AIDS strategies.

The aim of this research was to explore the challenges faced by women providing home-based care to those infected and affected by HIV and AIDS. The specific objectives of the study were to explore the gender-related, sociocultural and socioeconomic challenges faced by these women; and to investigate best practices in home- based care. An exploration of the challenges women experience in their communities as they provide care for the HIV and AIDS infected and affected is located within a gender and power framework. Feminist theories are also used to try and explain the reasons behind the differences and inequalities that exist in the community, particularly as regards the women who provide home-based care. A qualitative study, which used both qualitative and participatory methods of data gathering, was undertaken in 2014 in Mzimba, Malawi. Data was collected from 26 women participants by means of Critical Incident Narrative interviews (5), Individual In-Depth Interviews (5), and two Focus Group Discussions (6 and 10 participants respectively). Three Key Informant Interviews were conducted with a Ministry of Local Government official, another with a Nursing sister at the Mzimba District Hospital Tuberculosis Ward, and the Mzimba District Hospital Home-based care Coordinator. Purposive and snowballing sampling techniques were used to recruit the research participants. A topic guide was used in critical incident narrative interviews. An interview schedule consisting open-ended questions and face interviews were used for the Individual In-depth Interviews. A topic guide was used for the Focus Group Discussions. All the data collection instruments were guided by the themes of social, economic, cultural, psychological challenges; food security, and coping mechanisms. An interview schedule consisting of open-ended questions were used for the Key Informant Interviews. A Check List of WHO minimum package for home-based care programmes was used to assess the actual program best practices. The methodology of this study was guided by the WHO framework on home-based care. In this framework, the home-based care programme includes the following elements which make up the minimum package of care: provision of care, continuum of care, education, supplies and equipment, staffing, finance and sustainability, and monitoring and evaluation. Very few studies have been concluded to understand the sociological issues that affect women who provide care to the HIV and AIDS infected and affected in households and communities. It is hoped that this study will in some way address this gap, and that the information and recommendations contained in this thesis will guide policy recommendations in Malawi that will incorporate the lived experiences of those who provide this care. The study revealed that women providing home-based care to the HIV and AIDS infected and affected experience harsh challenges. Women carry the burden of care as traditionally men do not provide care. Women experience extreme deprivation which manifests itself through a number of socio-economic difficulties and these include been shown in their inability to provide for their basic necessities such as food, and other household needs. For most of the women carers, the deprivation is a direct consequence of their low levels of education which rendered them unable to find employment of engage in successful business ownership. The women carers also lack social security in the sense that they do not have access to land for example which could ensure that they have some level of food security. When the main income earner died the women carers and their dependants were left to fend for themselves. Women carers also experienced various psychological problems and these included nightmares, insomnia, depression and these affected their physical health such a few reported lack of appetite for food as a major issue. Women carers and in particular the young women reported that they had to elements which make up the minimum package of care: provision of care, continuum of care, education, supplies and equipment, staffing, finance and sustainability, and monitoring and evaluation. Very few studies have been concluded to understand the sociological issues that affect women who provide care to the HIV and AIDS infected and affected in households and communities. It is hoped that this study will in some way address this gap, and that the information and recommendations contained in this thesis will guide policy recommendations in Malawi that will incorporate the lived experiences of those who provide this care. The study revealed that women providing home-based care to the HIV and AIDS infected and affected experience harsh challenges. Women carry the burden of care as traditionally men do not provide care. Women experience extreme deprivation which manifests itself through a number of socio-economic difficulties and these include been shown in their inability to provide for their basic necessities such as food, and other household needs. For most of the women carers, the deprivation is a direct consequence of their low levels of education which rendered them unable to find employment of engage in successful business ownership. The women carers also lack social security in the sense that they do not have access to land for example which could ensure that they have some level of food security. When the main income earner died the women carers and their dependants were left to fend for themselves. Women carers also experienced various psychological problems and these included nightmares, insomnia, depression and these affected their physical health such a few reported lack of appetite for food as a major issue. Women carers and in particular the young women reported that they had to drop of school to marry when their parents or guardians died. The other dimension to this issue was that the older women carers reported that during their young years, it was common place to find girls who did not attend school or were pressurised to get married because their parents did not believe in educating girls. The background is currently affecting the women carers as they find that they cannot get involved in profitable business or even look for employment. They lack the basic literacy levels that would allow them to be become more productive and ensure financial security. Women carers experienced a number of gender related challenges as they provided care and these included the burden of care being almost solely borne by the women. Women revealed that they have had to use various coping strategies in the face of the overwhelming challenges that they continue to experience. Elderly women have found ways to cope by selling the property such as land and household goods, conducting small scale informal business, and sending the children away to relatives to be fostered. The young women on the other hand have sometimes reverted to some dangerous strategies for coping such as getting a boyfriend to provide for their financial needs, engaged in transactional sex, and some got married very early. The other coping strategies that the young women employed were to conduct small businesses, depended on family and relatives to provide for their various needs. The women volunteers revealed that they used their group as a therapy group, they shared the work, and that they were involved in small scale businesses. The study has also revealed that there is a home-based care programme that is functioning fairly well. However, there are indications that as much as the various players are trying to assist those who are infected and affected by HIV and AIDS, there are severe gaps in the effectiveness of the programme. There is need for a review of the programme so that it answers to the needs of those who are caring for those who are on home-based care i.e. a more rigorous implementation of HBC programme is required. The overall findings of the study indicate that the poverty trap in which the women are caught impacts on every aspect of their existence, with little hope of them ever improving their conditions. There is need for the Malawi government to come up with strategic interventions that would alleviate of women in general but in particular those who are left to provide care at home. Such interventions could include poverty alleviation strategies for women who are providing care to ensure that their situation does not deteriorate once they begin to provide care. Since Malawi is a signatory to the UN Millennium Development Goals, it is important that the plight of women is revisited and find lasting solutions to the challenges that they experience. Women are still lagging behind in education for example. There is need to improve girls and women access to education. The health of women has been affected by HIV and AIDS. The Government of Malawi also needs to review the policies that are in place which address women’s health. Essentially the status of women is need of a major change in order for the country to achieve some level of development which is at par with other countries in the sub-Saharan African region. / Sociology / D. Phil. (Sociology)

The aim of this research was to explore the challenges faced by women providing home-based care to those infected and affected by HIV and AIDS. The specific objectives of the study were to explore the gender-related, sociocultural and socioeconomic challenges faced by these women; and to investigate best practices in home- based care. An exploration of the challenges women experience in their communities as they provide care for the HIV and AIDS infected and affected is located within a gender and power framework. Feminist theories are also used to try and explain the reasons behind the differences and inequalities that exist in the community, particularly as regards the women who provide home-based care. A qualitative study, which used both qualitative and participatory methods of data gathering, was undertaken in 2014 in Mzimba, Malawi. Data was collected from 26 women participants by means of Critical Incident Narrative interviews (5), Individual In-Depth Interviews (5), and two Focus Group Discussions (6 and 10 participants respectively). Three Key Informant Interviews were conducted with a Ministry of Local Government official, another with a Nursing sister at the Mzimba District Hospital Tuberculosis Ward, and the Mzimba District Hospital Home-based care Coordinator. Purposive and snowballing sampling techniques were used to recruit the research participants. A topic guide was used in critical incident narrative interviews. An interview schedule consisting open-ended questions and face interviews were used for the Individual In-depth Interviews. A topic guide was used for the Focus Group Discussions. All the data collection instruments were guided by the themes of social, economic, cultural, psychological challenges; food security, and coping mechanisms. An interview schedule consisting of open-ended questions were used for the Key Informant Interviews. A Check List of WHO minimum package for home-based care programmes was used to assess the actual program best practices. The methodology of this study was guided by the WHO framework on home-based care. In this framework, the home-based care programme includes the following elements which make up the minimum package of care: provision of care, continuum of care, education, supplies and equipment, staffing, finance and sustainability, and monitoring and evaluation. Very few studies have been concluded to understand the sociological issues that affect women who provide care to the HIV and AIDS infected and affected in households and communities. It is hoped that this study will in some way address this gap, and that the information and recommendations contained in this thesis will guide policy recommendations in Malawi that will incorporate the lived experiences of those who provide this care. The study revealed that women providing home-based care to the HIV and AIDS infected and affected experience harsh challenges. Women carry the burden of care as traditionally men do not provide care. Women experience extreme deprivation which manifests itself through a number of socio-economic difficulties and these include been shown in their inability to provide for their basic necessities such as food, and other household needs. For most of the women carers, the deprivation is a direct consequence of their low levels of education which rendered them unable to find employment of engage in successful business ownership. The women carers also lack social security in the sense that they do not have access to land for example which could ensure that they have some level of food security. When the main income earner died the women carers and their dependants were left to fend for themselves. Women carers also experienced various psychological problems and these included nightmares, insomnia, depression and these affected their physical health such a few reported lack of appetite for food as a major issue. Women carers and in particular the young women reported that they had to elements which make up the minimum package of care: provision of care, continuum of care, education, supplies and equipment, staffing, finance and sustainability, and monitoring and evaluation. Very few studies have been concluded to understand the sociological issues that affect women who provide care to the HIV and AIDS infected and affected in households and communities. It is hoped that this study will in some way address this gap, and that the information and recommendations contained in this thesis will guide policy recommendations in Malawi that will incorporate the lived experiences of those who provide this care. The study revealed that women providing home-based care to the HIV and AIDS infected and affected experience harsh challenges. Women carry the burden of care as traditionally men do not provide care. Women experience extreme deprivation which manifests itself through a number of socio-economic difficulties and these include been shown in their inability to provide for their basic necessities such as food, and other household needs. For most of the women carers, the deprivation is a direct consequence of their low levels of education which rendered them unable to find employment of engage in successful business ownership. The women carers also lack social security in the sense that they do not have access to land for example which could ensure that they have some level of food security. When the main income earner died the women carers and their dependants were left to fend for themselves. Women carers also experienced various psychological problems and these included nightmares, insomnia, depression and these affected their physical health such a few reported lack of appetite for food as a major issue. Women carers and in particular the young women reported that they had to drop of school to marry when their parents or guardians died. The other dimension to this issue was that the older women carers reported that during their young years, it was common place to find girls who did not attend school or were pressurised to get married because their parents did not believe in educating girls. The background is currently affecting the women carers as they find that they cannot get involved in profitable business or even look for employment. They lack the basic literacy levels that would allow them to be become more productive and ensure financial security. Women carers experienced a number of gender related challenges as they provided care and these included the burden of care being almost solely borne by the women. Women revealed that they have had to use various coping strategies in the face of the overwhelming challenges that they continue to experience. Elderly women have found ways to cope by selling the property such as land and household goods, conducting small scale informal business, and sending the children away to relatives to be fostered. The young women on the other hand have sometimes reverted to some dangerous strategies for coping such as getting a boyfriend to provide for their financial needs, engaged in transactional sex, and some got married very early. The other coping strategies that the young women employed were to conduct small businesses, depended on family and relatives to provide for their various needs. The women volunteers revealed that they used their group as a therapy group, they shared the work, and that they were involved in small scale businesses. The study has also revealed that there is a home-based care programme that is functioning fairly well. However, there are indications that as much as the various players are trying to assist those who are infected and affected by HIV and AIDS, there are severe gaps in the effectiveness of the programme. There is need for a review of the programme so that it answers to the needs of those who are caring for those who are on home-based care i.e. a more rigorous implementation of HBC programme is required. The overall findings of the study indicate that the poverty trap in which the women are caught impacts on every aspect of their existence, with little hope of them ever improving their conditions. There is need for the Malawi government to come up with strategic interventions that would alleviate of women in general but in particular those who are left to provide care at home. Such interventions could include poverty alleviation strategies for women who are providing care to ensure that their situation does not deteriorate once they begin to provide care. Since Malawi is a signatory to the UN Millennium Development Goals, it is important that the plight of women is revisited and find lasting solutions to the challenges that they experience. Women are still lagging behind in education for example. There is need to improve girls and women access to education. The health of women has been affected by HIV and AIDS. The Government of Malawi also needs to review the policies that are in place which address women’s health. Essentially the status of women is need of a major change in order for the country to achieve some level of development which is at par with other countries in the sub-Saharan African region. / Sociology / D. Phil. (Sociology)