SOCIO-ECONOMIC CHALLENGES AND COPING MECHANISMS OF HOME BASED CAREGIVERS FOR PEOPLE LIVING WITH HIV/AIDS IN NJORO SUB- COUNTY, KENYA

ABSTRACT
AIDS scourge has put to test the capacity of Kenya’s health delivery system to meet the ever- increasing number and needs of AIDS related illnesses and complications for equitable and humane treatment. This has led the government to rely on home-based care to fill the gap. Home-based care giving is well-recognized as the majority of care work due to illness takes place in the homes for a number of reasons, including the lack of a coordinated public policy addressing care needs, limited health infrastructure and human resources, and the preference of patients. The purpose of the study was to determine the socio-economic challenges and coping mechanisms of home based caregivers for people living with HIV/AIDS in Njoro Sub-county. The specific objectives were; to examine the types of support provided by home based caregivers for people living with HIV/AIDS; to determine the social challenges faced by home based caregivers for people living with HIV/AIDS; and, to explore the coping mechanisms used by home based caregivers for people living with HIV/ AIDS. The study used Coping theory and Behavioral theory as they deemed relevant to this study. The study employed descriptive survey research design which sought to obtain information that describes existing phenomena by asking individuals about their perceptions, attitudes, behavior or values. Purposive sampling was used to identify 420 home based caregivers who were registered with the local administration to receive relief of which Simple random sampling was used to obtain a study sample of 103 from a population of 420 who are registered. A questionnaire was used to collect data and the Statistical Package for Social Science (SPSS) version 22.0 aided in the analysis. The data generated from the study was analyzed by descriptive statistics. From the study findings 76 (73.8%) were females and 27 (26.2%) were males. This indicates that caregiving seems to attract more women than men. From the study it was established that the most common social challenge faced by caregivers was stigma and discrimination as it was indicated by 87% of the home based caregivers. This had an influence on their interaction and it influenced emotional and psychological support being offered to the people living with HIV. Also majority (91.3%) of the caregivers indicated that lack of finances was a major economic challenge faced when taking care of HIV/AIDS victims. From the study findings this study recommends that policies on home based caregivers should be developed to accommodate the challenges faced by this group which provide alternative health care at home that ease pressure on health care facilities.

CHAPTER ONE
INTRODUCTION
1.1 Background of the Study
HIV/AIDS is a global pandemic that affects individuals, families, and entire communities around the world and has profound social and economic implications. In 2012, the pandemic killed an estimated 3 million people, and an additional 40 million were living with the infection (UNAIDS, 2012). The epidemic primarily affects the world’s poorest people in countries with the greatest gender inequities, disparities in income, and access to productive resources (World Health Organization, 2012). HIV/AIDS is primarily a heterosexual epidemic in developing countries, yet sex between men remains a critical aspect of the epidemic in middle and high- income countries (Akintola, 2004). Internationally, an estimated 33.3 million people are living with HIV (NASCOP, 2012). The burden of the epidemic continues to lie disproportionately heavily within lower- and middle-income contexts. Approximately 15 million people living with HIV who need treatment are in these contexts, and of these, only a third (5.2 million) have access to the necessary facilities and resources (WHO,2012). Sub-Saharan Africa remains the region most severely affected by the epidemic: Approximately 68% of all people currently living with HIV, 69% of new infections and 72% of AIDS-related deaths occur in sub-Saharan Africa (WHO,2012). Furthermore, HIV has been recognised as a major humanitarian crisis in this context, as well as a significant threat to socio-economic development.(UNAIDS, 2012).

With regard to the prevalence of this disease, recent studies indicate that South Africa has one of the highest rates within Sub-Saharan Africa. It is estimated that one out of every five adults in South Africa is HIV positive and that out of a population of 40 million, 4.2 million are currently living with the virus (Uys and Cameron,2013). In Kenya the current HIV prevalence rates are estimated at 25 % in urban areas, 27 % in semi-urban and 12 % in rural areas. Current estimates suggest that there are over 1.2 million people infected with HIV/AIDS. In Kenya, and more than 1.5 million have so far died of the disease, leaving behind over 1 million orphans in the rural areas where the socio-economic conditions are worsening due to poverty and unemployment (UNAIDS, 2013). In addition, a large number of children are living with parents who are ill; hence the children become the primary care givers for their parents, young siblings and other dependants. It is estimated that many more persons living with HIV/AIDS stay at home, are unable to access health care and are overstretching the households’ ability to cope. The demographics behind HIV/AIDS are as diverse as the world in which we live and work, calling for a range of responses from the social work profession (Shebi,2006). The eradication of HIV/AIDS represents one of humanity’s greatest challenges, one that requires cooperation and comprehensive collaboration between scientific disciplines, governments, social institutions, the media, the social work and health care professions, and the general public (Sterinberg,2011). The mounting morbidity and mortality of the epidemic has placed increasing pressure on most African countries’ public health sectors (Tshililo and Maselesele, 2009). The care of HIV/AIDS patients has created demand for healthcare beyond the capacity of hospitals and clinics, forcing states to look for alternatives. In response, several southern African countries have initiated Community Home Based Care programs (CHBC), a strategy viewed as more affordable and attainable than hospital care.

Community Home Based Care programs have the potential to bring about important health and social benefits for the patients, families, and communities involved, a strategy that transfers some of the responsibilities of care from the health facilities to families and the communities in which patients live. CHBC programs have the potential to bring about an attempt to provide a quick and easy solution to relieving overburdened hospitals and clinics, without a real commitment to strengthening the services provided to those deeply affected by HIV/AIDS. Home-care programmes were started in North America and Europe when it was found that families had difficulty coping on their own with the demands of caring for people living with HIV/AIDS (PLWHA) (Molefe, 2009). During the late 1980s and early 1990s this type of service was introduced in a number of African countries (Sardiwalla, 2004).

In South Africa, hospices and community-based care organizations have been designed to take care of those that are homecare workers, and the expansion of home care technology has increased the care giving responsibilities of families (Steinberg, 2011). Family caregivers are being asked to shoulder greater burdens for longer periods of time. In addition to more complex care, conflicting demands of jobs and family, increasing economic pressure, and the physical and emotional demands of long-term care giving can result in major health impacts on caregivers (Shebi, 2006). Home based caregivers who experience the greatest emotional stress tend to be female. They are at risk for high levels of stress, frustration, anxiety, exhaustion and anger, depression, increased use of alcohol or other substances, reduced immune response, poor physical health and more chronic conditions, neglecting their own care and have higher mortality rates compared to non-caregivers (Tarimo.etal, 2009). Home-based care has emerged as an effective method of providing cost-effective and compassionate care to people infected with HIV and AIDS. Many governments have acknowledged the need and value of caring for people living with HIV and AIDS in their homes. In South Africa, this was recognized by the government in 2004 as being an effective care measure when the government called for the establishment of 600 home-based care programmes by 2005 (Ehlers, 2006). In 2002, the World Health Organization published a framework for establishing community and home-based care programmes in poorer nations in response to the growing realization of their valuable role in dealing with the epidemic (WHO, 2002).

National guidelines have been established by various countries including Kenya, Tanzania and Malawi (WHO, 2002). However these guidelines could not be made operational due to lack of funds. Despite this lack of coordination in Community Based Home Care (CHBC) there have been sporadic government based home care initiatives in Kenya. For example in 1999 to 2000, 50 people were trained in the districts of Nyando, Kisumu, Rachuoyo and Kuria. In addition 24 people received a diploma in home based care in Nairobi and central provinces. These training programmes were conducted by personnel from mild international in collaboration with the University of Nairobi, and Kenya Voluntary Women’s Rehabilitation Center (KVOWRC). Although this training programmes were helpful in sensitizing health care personnel to the care and support needs of people at home, due to lack of government funds, this training has not been maintained (Onyango, 2009). However, despite the recognition of the vital care work that goes on in the home, many caregivers and home-based care organizations are not sufficiently supported.

Globally, up to 90% of such care is provided in the home by women and girls (WHO, 2002). But as HIV and AIDS take its toll, it is becoming apparent that women alone cannot shoulder the responsibility of HBC work. The inability of health systems to care for all people living with HIV and are in need of services has led many governments to rely on home-based care to fill the gap. In order to provide appropriate care and support for people with HIV and AIDS, especially in less developed countries with minimal resources and health budgets, a comprehensive integrated approach that addresses the medical, psychosocial, spiritual and emotional needs, is necessary.In Kenya a formal system of community based care (CHBC) has not yet be implemented by ministry of health (UNAIDS, 2007). However, there are a number of NGOs, religious organizations and donor agencies engaged in the provision of home based care throughout Kenya. The HIV pandemic is overwhelming public hospital capacities. In Njoro Sub- county due to the cosmopolitan in nature and establishment of various agri-business industries for example flower farms, processing industries and institution of higher learning, the prevalence of HIV and AIDS in the Sub-county has increased among the community living.

In Njoro Sub-County District Hospital due to high prevalence of HIV/AIDS the pandemic places enormous burden on healthcare services, as a result patients are forced to be discharged prematurely due to low bed capacity in the hospital. This has led to HIV/AIDS patients to seek care at their homes which includes physical, psychosocial, palliative and spiritual interventions. In Njoro Sub-county home based care is done at homes for a number of reasons, including, limited health infrastructure and human resources, and the preference of patients. A serious consequence of this being that other patients care is compromised due to premature discharges from hospitals. The increased demands placed on medical budgets, combined with the prolonging of patients’ lives through antiretroviral therapy treatment, has led to vast majority of care costs and burdens are borne, therefore, by households and individuals.

Home-based care entails the provision of necessary health care by a volunteer caregiver to a patient or family at home, often with the support of a Home Based. In Njoro Sub-County these support services are offered by Home Based Caregivers, Community-Based Organizations and include home visits, where assistance is given with physical, medical, and emotional care. This, however, can only be done for a limited number of hours per week due to the number of patients allocated to a volunteer worker in a specific area and nature of work of the caregiver. Although the services of community-based caregivers are available, it is the informal caregivers who provide most of the care for the PLWHA. Thus they experience a lot of emotional, financial, physical and social difficulty. Despite the fact that there may be no significant financial impact on home based caregiver offering caring for people living with HIV/ AIDs at home, there can be significant impact on the emotional and physical health of the caregiver. Because of the strain and burnout often associated with caregiving, caregivers require counselling support services to cope with burnouts, stigma and discrimination (Jackson, 2002). These people are typically the lovers, spouses, children, friends or family of someone diagnosed with HIV/AIDS. The aim of this research was to explore the operational gaps and challenges in the care giving process that make coping of the caregivers a daunting task.

Statement of the Problem
AIDS scourge has put to test the capacity of Kenya’s health delivery system to meet the ever- increasing number and needs of AIDS related illnesses and complications for equitable and humane treatment. Home-based care has emerged as an effective method of providing cost- effective and compassionate care to those infected with HIV/AIDS. In Kenya, there has been a gradual shift from hospital-based care of people living with HIV/AIDS to home-based care. People living with HIV/AIDS often constitute a large proportion, if not majority of people seeking medical treatment at hospitals. Many hospitals do not have adequate resources to care for HIV patients. In response, hospitals and departments of health have implemented policies to promote home-based care of patients. However, HIV/AIDS pandemic places enormous burden on healthcare services in Njoro Sub-County District Hospital, as a result patients are forced to be discharged prematurely due to low bed capacity in the hospital. This has led to HIV/AIDS patients to seek care at their homes which includes physical, psychosocial, palliative and spiritual interventions. Hence there was need for a study to establish socio-economic challenges that are faced by home based care givers and their coping mechanisms when taking care of People Living with HIV/ AIDS.

Purpose of the Study
The purpose of the study was to investigate the socio-economic challenges and coping mechanisms of home based caregivers in Njoro Sub-county.

Objectives of the Study
The following objectives guided the study:

i) To examine the types of support provided by home based caregivers for people living with HIV/AIDS in Njoro Sub-county.

ii) To determine the social challenges faced by home based caregivers for people living with HIV/AIDS in Njoro Sub-county.

iii) To analyse the economic challenges faced by home based caregivers for people living with HIV/AIDS in Njoro Sub-county.

iv) To explore the coping mechanisms used by home based caregivers for people living with HIV/ AIDS in Njoro Sub-county.

Research Questions
i) Which types of support are provided by home based caregivers for people living with HIV/ AIDS in Njoro Sub-county?

ii) What are the social challenges faced by home based caregivers for people living with HIV/ AIDS in Njoro Sub-county?

iii) Which economic challenges are faced by home based caregivers for people living with HIV/AIDS in Njoro Sub-county?

iv) What are the coping mechanisms used by home based caregivers for people living with HIV/AIDS in Njoro Sub-county?

Significance of the Study
The findings of this study will be used indicate the extent to which coping mechanism impact on the welfare of home based caregivers for PLWHA. The information generated will be essential to counselors who will appreciate the role of counseling in assisting the caregivers for PLWHA to confront the multiple challenges they face. The study results will also be of great value to the society at large to understand and address the issue of stigmatization on caregivers for PLWHIV and the psychological trauma they experience. Researchers and academicians will get an insight on the current knowledge and on areas for further research.

Secondly, the study results will help educate families, communities and home based caregivers to cope with challenges of care giving when providing care to people living with HIV. This will strengthen families to provide for the full range of their needs hence reducing the challenge of stigmatization when providing care.

Thirdly, this study will provide information on home based care support available which may be essential in formulating a comprehensive programming for policy makers. The information obtained will also assist people living with HIV to obtain extra support for dealing with their HIV status, managing and adhering to treatment, disclosure, coping with illness in their family and caring for relatives through the voluntary counseling services available.

Scope of the Study
The study investigated the socio-economic challenges and coping mechanism of home based caregivers in Njoro Sub-county. It focused on individual home based caregivers who were at that time providing care and were registered with the local administration for relief of people living with HIV/AIDS in Njoro Sub-county. Key elements that were dealt with were socio-economic challenges faced and the coping mechanisms of home based caregivers.

Limitations of the Study
The participants in this research were mostly siblings of the PLWHA and parents of PLWHA some of whom (2.9%) were illiterate; this made the researcher to engage interpreters who could interpret the questions to the respondents. The other limitations were that the level of openness expressed by the participants varied in their responses to questions asked as the issue was very sensitive and traumatizing hence it was handled with utmost confidentiality and assurance to the victims. The respondents had assumed that the research was aimed at funding. This was addressed by assuring the respondents to be transparent and accountable.

Assumptions of the Study
The study was based on the assumption that;

i) The selected subjects were a representative of the whole population of the study as the sample was obtained through purposive sampling.

ii) The responses were honestly given in relation to the items in the questionnaire, and both men and women had an equal chance of being in the population sampled since simple random sampling was used. The population sampled genuinely provided home based care to HIV/AIDS patients.

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