Challenges faced by women providing home-based care

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Overview of the HIV and AIDS epidemic3 in Malawi

Malawi is characterised epidemiologically by high prevalence rates of communicable diseases which include malaria, tuberculosis, HIV and AIDS which account for most of the bed occupancy in hospital admissions (Manthalu, Nkhoma & Kuyeli, 2010). There is also an increasing burden of non-communicable diseases such as cancer, diabetes, hypertension, cardiovascular diseases, mental illnesses, and high incidence of maternal and child health problems (ibid). This huge burden of disease exerts pressure on an already fragile health system leading to women taking on the caring role of those who are chronically ill.
In order to understand the increasing demands on women as caregivers to the affected and infected in Malawi, it is necessary to provide an overview of the HIV and AIDS epidemic in Malawi and the mitigation measures put in place by the government and the community.
The HIV prevalence rate (i.e. total percentage of population aged between 15 and 49) in Malawi, among both men and women, is reported to be approximately eleven percent (World Bank, 2011; Pindani, Maluwa, Nkondo, Nyasulu & Chilemba, 2013). There are more than 92,000 adults and children living with HIV ((UNAIDS, 2011). Women account for about fifty-three percent of the adult HIV-infected population (UNAIDS, 2012; NAC, 2003).

The national response to the HIV and AIDS epidemic

The national response to the HIV and AIDS epidemic in Malawi emerged through the development in 2005 of the National HIV and AIDS Policy4 and the HIV and AIDS Strategic Framework or the National HIV/AIDS Action Framework (i.e. NAF for short) (NAC, 2005). One of the priority areas of this response was the provision of equitable treatment for people living with HIV, such as making available antiretroviral drugs for those who required them to ensure that they remained socially and economically active (NAC, 2005). The NAF was extended to continue up to 2012 and it covers: prevention and behaviour change; treatment, care and support; impact mitigation; mainstreaming and decentralisation of care; research, monitoring and evaluation; resource mobilisation and utilisation; and policy and partnerships (UNAIDS. 2010). Within these key areas, the government developed a policy to support the provision of community home-based care services (UNAIDS, 2008).
Ideally, home-based care services are meant to be sustained by government. Women who care for those infected and affected by HIV are meant to be provided with support from the government through the Ministry of Health. However, as has been discussed in brief above, women carers in fact experience many difficulties and , moreover, few studies have been conducted to understand these challenges experienced by women as they provide care.

Anti-Retroviral Treatment (ART)

One of the major responses to mitigate the effects of HIV and AIDS in Malawi has been the introduction of anti-retroviral treatment (ART). ART was introduced in 2003 in Malawi and has been gradually scaled-up since to treat more AIDS patients (UNAIDS, 2012). As a result, people infected with HIV are living longer. According to Ministry of Health programme reports, by the end of the first quarter of 2011, there were 264,512 people taking ARVs (UNAIDS, 2010) and by the end of 2011, there were National AIDS Commission 2005.

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Best practices in home-based care

In order to understand the context in which the best practices in home based care are found, it is necessary to understand the organisation and arrangement of health care system of Malawi.
The Ministry of Health is made up of central directorates which include: nursing, clinical, preventive, health technical support services, planning, finance and administration, HIV and AIDS, reproductive health, and health education (MoH, 2012: 14). The administrative responsibilities for public health are devolved to the zonal level, with each zone comprising a cluster of districts (ibid). District and Christian Health Association of Malawi (CHAM) hospitals provide the district level health services, both secondary and primary health care (ibid).
However, primary health care is provided through health centres, which are generally located at the community and village levels. The public health hospital system in Malawi is structured in a three-tiered network of interlocking medical facilities (ibid). There are several providers of health care services in Malawi and these include government central and district hospitals, Christian Health Association of Malawi (CHAM) institutions, and private hospitals (ibid). All these providers of health care are involved in providing HIV and AIDS care services.
Hirschfeld and Lindsey (2002: 34) argue that a properly functioning community home-based care programme should consist of the following elements: provision of care; continuum of care; education; supplies and equipment; staffing; financing and sustainability; and monitoring and evaluation.

CHAPTER ONE INTRODUCTION
1.1 Introduction
1.2 Background to the study
1.3 Burden of care
1.4 Gender disparities in Malawi
1.5 Challenges faced by women providing home-based care
1.6 Overview of the HIV and AIDS epidemic in Malawi
1.7 Best practices in home-based care
1.8 Setting and statement of the research problem
1.9 Rationale for the study
1.10 Main aim and specific objectives of the study
1.11 Methodological approach
1.12 Relevance and contribution of the study
1.13 Delimitation of the research area .
CHAPTER TWO SOCIO-ECONOMIC AND CULTURAL PROFILE OF THE STUDY
2.1 Introduction
2.2 Research study site
2.3 Population structure
2.4 The national poverty incidence
2.5 Fertility levels
2.6 Health indicators
2.7 Agriculture: food security and livelihood sources
2.8 Literacy levels
2.9 Cultural traits
2.10 Summary
CHAPTER THREE REVIEW OF RELATED LITERATURE AND THERORETICAL FRAMEWORK
3.1 Introduction
3.2 Home-based care .
3.3 Home-based care as a response to HIV and AIDS
3.4 Home-based care components and best practices.
3.5 Malawi, HIV and AIDS, and home-based care
3.6 Women and home-based care
3.7 Gender burden, roles, and physiological vulnerabilities to HIV infection
3.8 Challenges faced by women providing home-based care in Malawi
3.9 Coping mechanisms in the face of the burden of care of women who provide home-based care
3.10 Gender and power, and feminist theories
3.11 Summary
CHAPTER FOUR RESEARCH DESIGN AND METHODOLOGY
4.1 Introduction
4.2 Research design
4.3 Research paradigm .
4.4 Research methodology
4.5 Data collection methods
4.6 Data capturing
4.7 Data analysis and interpretation
4.8 Debriefing and counselling
4.9 Ethical considerations
4.10 Summary
CHAPTER FIVE FINDINGS, ANALYSIS AND INTERPRETATION: WOMEN VOLUNTEERS AND ELDERLY WOMEN .
CHAPTER SIX FINDINGS, ANALYSIS AND INTERPRETATION: YOUNG WOMEN’S LIFE STORIES
CHAPTER SEVEN FINDINGS, ANALYSIS AND INTERPRETATION: HOME-BASED CARE COMPONENTS AND BEST PRACTICES