HIV/AIDS Patient’s Perception of their care

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CHAPTER 2 LITERATURE REVIEW

INTRODUCTION

This chapter presents a review of literature pertaining to the Malawian Community Home Based Care Program mostly for people living with HIV and AIDS (PLWHA). A search of the existing literature on CHBC yielded several sources. The concept of CHBC has received attention from different authors. The literature review has included related research studies which were done previously in relation to issues of CHBC both internationally and locally. The descriptors for literature review are related to the goals to be accomplished in this study: to explore and describe the experiences that HIV and AIDS patients who are on Community Home Based Care Programme have in Lilongwe district of Malawi and later develop practical guidelines for the implementation of quality home care in Malawi. The concept of home health care started in the 20th century when hospitals were few or unavailable. As Stanhope and Lancaster (2004) attest “people did not always go to the hospital when they became ill”. Home health care is that component of a continuum of comprehensive health care whereby health services are provided to individuals and families in their places of residence for the purpose of promoting, maintaining or restoring health, or maximizing the level of independence while minimizing illness (Stanhope and Lancaster 2004). This definition is similar to the Malawian definition of CHBC which states that “ it is the care provided to chronically and terminally ill patients suffering from diseases such as HIV/AIDS, TB, Cancer, Stroke and other chronic diseases” (Malawi CHBC Policy and Guidelines, 2005). HIV and AIDS is a chronic condition characterized by progressive immunosuppression. It is not currently curable (WHO, 2004). In most countries, the health care system has been slow to respond to this growing threat. Public interest has focused on AIDS as an acute illness while ignoring the chronically ill, homebound majority of persons with AIDS (Alexander, 1995). As the number of AIDS cases and associated deaths continue to rise, the provision of effective Community Home Based Care has become not only a priority, but an absolute necessity (Caring for AIDS patients at home in Malawi, 2008).In most parts of the country, communities have mobilized themselves and are providing care for PLWHA, with the aim of rendering care using the available resources in their homes (Kamphinda, 2004). The most important local resource is the community members who are involved in rendering the care as caregivers. As more individuals are living with AIDS, more people are needed to provide services.
Volunteer services are increasingly more valuable. According to Held and Brann, (2007), providing services for people with HIV/AIDS is a rewarding experience; however, stress, depression and frustration can play a role in their experiences. Therefore there is need for emotional and social support to be given to the volunteers to cope with stressors associated with providing services for people with HIV/AIDS. Higher levels of social support are associated with better adjustment, coping and treatment adherence among HIV patients (Miller, Bishop, Herman and Stein, 2007). In Malawi as in many African countries, CHBC approach was mainly developed because of AIDS and is an established component of the continuum of care and support advocated by the WHO and UNAIDS (Malawi Community Home Based Care Policy and Guidelines, 2005). The CHBC program is one of the best care and support strategies that offer health care services to support the care process in the home of the HIV/AIDS infected person. The program aims to alleviate human suffering and pain and mitigate the impact of HIV/AIDS. An example of such projects in Malawi is Oxfam which is working with local home based care groups to address the needs of those affected by HIV and AIDS. According to the local leaders in the areas where Oxfam is working, “the lives of orphans and the sick have improved so much that some are able to go back to their work and do things for themselves, go back to school, work in their gardens – that’s the impact it is having” (Oxfam International, 2006).

HIV AND AIDS AND QUALITY OF LIFE

The health and quality of life of persons with HIV and AIDS are affected by suppression of the immune system with attendant opportunistic infections and complications and by direct action of the virus resulting in fatigue, wasting neurological disease and other manifestations (WHO, 2004). People with HIV and AIDS are also affected by discrimination, mental health problems and poverty which can be both a cause and effect of infection. It is always assumed that people need other people and that being needed promotes quality of life so too is the case with PLWHA. This is true with the findings from a study done by Bertero,Eriksson and EK (1997) entitled ‘Assessing the quality of life of patients in phase 1 & 2 anti-cancer drug trials: Interviews versus questionnaires. Results of this study revealed that a person enjoys a good quality of life when she/he is active and has a good relation with others, has self esteem, and a fundamental mood of happiness. Quality of life is a multidimensional construct that communicates an individual’s overall sense of well-being and life satisfaction. It is an individual and personal experience, but there might be some common components that give life meaning.
According to Youssef, and Wong, (2002) in their study of Educating Clinicians to Assess Quality of Life in patients with chronic illness, the concept of Quality of Life is changing over time. With the current shift of health service emphasis from hospital based care to home based care, family members` responsibility for providing direct care to their relatives has increased and this move therefore has clearly affected the quality of care, family caregivers, and the health care providers. According to WHO/UNAIDS (2000), all individuals have a right to psychosocial care and an adequate quality of life in addition to well-being. The WHO (2000) has defined quality of life as an “individual’s perceptions of their position in life in the context of the culture and value system in which they live and in relation to their goals, standards and concerns”. Quality of life therefore consists of four dimensions which are: physical, psychological, social and spiritual wellbeing. It has been acknowledged that quality of life is subjective, based on the patient’s self report, always changing, dynamic and a multidimensional concept (Youssef and Wong, 2002).

Content Page
Dedication 
Declaration 
Acknowledgements 
Abstract 
Definition of terms used in the study 
List of acronyms 
Organization and structure of the study
CHAPTER 1 OVERVIEW OF THE STUDY
1.1 Background of Malawi 
1.1.1 Socio-economic context
1.1.2 Basic health indicators
1.1.3 Health Care Delivery in Malawi
1.2 HIV/AIDS situation in Malawi 
1.3 Background to the study
1.3.1 Community Home Based Care in Malawi
1.3.2 CHBC Volunteers
1.3.3 Community Home Based Care situation in SADC region
1.4 Problem Statement
1.5 Purpose of the study
1.6 Study Questions 
1.7 Significance of the study
1.8 Conclusion
CHAPTER 2 LITERATURE REVIEW3
2.1 Introduction
2.2 HIV/AIDS and Quality of life
2.3 HIV/AIDS Patient’s Perception of their care
2.4 HIV/AIDS and CHBC Experiences 
2.4.1 Uganda
2.4.2 Tanzania
2.4.3 South Africa
2.4.4 Botswana
2.4.5 Zimbabwe
2.4.6 Ghana
2.4.7 Malawi
2.4.8 Needs of primary caregivers
2.4.9 Why HIV and AIDS in the Home
2.5 Conclusion
CHAPTER 3 CONCEPTUAL FRAMEWORK 
3.1 Introduction
3.2 Concept of quality of life 
3.3 Concept of quality of care
3.4 Attributes of quality of care 
3.5 Application of CHBC to the framework
3.5.1 CHBC Policy
3.5.2 Resources
3.5.3 Professional supervision
3.5.4 Minimum Package
3.5.5 Collaboration with stakeholders
3.6 Conclusion
CHAPTER 4 RESEARCH DESIGN AND METHODOLOGY 
4.1 Introduction
4.2 Research design
4.3 Research setting
4.4 Population and Sample
4.5 Inclusion criteria
4.6 In-depth Interviews 
4.7 Interview Guide
4.8 Trustworthiness 
4.8.1 Credibility
4.8.1.1 Prolonged engagement
4.8.1.2 Triangulation
4.8.1.3 Peer debriefing
4.8.1.4 Member checks
4.8.2 Transferability
4.8.3 Dependability
4.8.4 Confirmability
4.9 Pilot Study 
4.10 Recruitment of study participants 
4.10 Ethics and human rights issues
4.11 Conclusion 
CHAPTER 5 DATA ANALYSIS AND PRESENTATION OF FINDINGS
5.1 Introduction
5.2 Data coding, organization and reduction
5.3 Study Findings
5.3.1 Demographic Characteristics
5.3.1.1 Age Distribution
5.3.1.2 Gender Distribution
5.3.1.3 Occupation
5.3.1.4 Level of Education
5.3.1.5 Marital Status
5.3.1.6 Religion
5.4 Problems of the participants 
5.5 Living with HIV and AIDS
5.6 HIV/AIDS patients face Stigma
5.7 Anxiety, Worries and Fears 
5.8 Care providers for the patients
5.9 Attitude of care providers
5.10 HIV/AIDS Education 
5.11 Patient’s Quality of life 
5.12 Common Needs of patients 
5.13 Provision of Information
5.14 Benefits of Nursing a patient at home
5.15 Challenges of HIV and AIDS patients
5.16 Conclusion
CHAPTER 6 DEVELOPMENT OF PRIMARY CAREGIVERS TEACHING MANUAL
6.1 Introduction
6.2 Purpose of Primary Caregivers Teaching Manual 
6.3 Selected studies primary caregivers knowledge
6.4 Organizational structure of the manual
6.5 Development of the manual
6.6 Piloting of the manual
6.7 Details of group sessions
6.8 Conclusion
CHAPTER 7
SUMMARY, CONCLUSIONS AND RECOMMENDATIONS
7.1 Introduction
7.2 Summary 
7.3 Main Findings 
7.4 Conclusions and Recommendations 
7.5 Conclusion
BIBLIOGRAPHY
APPENDICES

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COMMUNITY HOME BASED CARE FOR HIV AND AIDS PATIENTS: A MALAWIAN EXPERIENCE

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