Journal of Global Social Work Practice, Volume 4, Number 2, November/December 2011
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Kenya HIV/AIDS Patients: Voices of Their Caregivers HIV/AIDS caregivers in Nairobi, Kenya do not choose their destiny. They all reside in various areas of Nairobi, Kenya and share many of the same trials and tribulations associated with providing care to someone suffering from a terminal illness. Some have been forced into the role due to the death of a loved one, while others have voluntarily taken on the responsibility because they know the patient has no one else. The caregiver's role of persons with HIV/AIDS share unique challenges in Kenya. Findings from focus groups conducted in four Nairobi villages document four themes that characterize the challenges they face in providing informal care to persons infected with and affected by HIV/AIDS. The four challenge areas are: (1) family instability caused by the disease; (2) stigmatization of families; (3) treatment inadequacies; and (4) implementation of caregiver training. Using Bronfenbrenner's Ecological Systems Theory, the authors provide a context for the themes that emerged. The experiences shared in this qualitative research captured day-to-day challenges and obstacles encountered by the HIV/AIDS caregivers, particularly women. These individuals face numerous political, social, economic, and cultural challenges. This article reviews these challenges and provides recommendations to address key issues. Keywords:Kenya, HIV/AIDS, Caregivers, Challenges Acronym Key: Contents U.S. President's Emergency Plan for AIDS Relief HIV/AIDS Caregivers: Identified Challenges Different circumstances have led HIV/AIDS caregivers in Nairobi, Kenya to their shared experiences as well as to the trials and tribulations of providing care to someone suffering from a terminal illness. Some have been forced into the role due to the death of their love one, while others have voluntarily taken on the responsibility because they know the patient has no one else. The experiences shared in this article capture day-to-day challenges and obstacles encountered by the HIV/AIDS caregivers in Nairobi, Kenya. These individuals face numerous political, social, economic, and cultural challenges. Despite these challenges, caregivers demonstrate resilience and benefit from their roles as caregivers. Breaking the silence of the HIV/AIDS pandemic requires an integrated approach to the whole question of HIV/AIDS. While it is imperative to provide care to the HIV patient, it is essential that there is also a focus on the caregiver's needs. They are an integral part in the fight against HIV/AIDS (Muchiri & Humphreys, 2002). Examining the caregivers' voices is particularly important due to their impact on the family as a whole. They are often among the invisible members of society; their experiences are frequently taken for granted or simply lost in the greater war to tide the growth of new cases. Thus, the casualties of HIV are falsely confined to the person who is infected, overlooking the family that is affected. Rationale This qualitative research was commissioned in response to the Kenya National AIDS Control Council's (NACC) request for "the development of innovative responses to reduce the impact of the epidemic on communities, social services and economic productivity" targeting vulnerable groups, including caregivers (NACC, 2005, pp. 7). Higher Ground Outreach, Inc. (HGO) responded to the appeal by reaching out to partner with faith- and community-based organizations in Kenya to provide services to HIV/AIDS patients and their caregivers. Building upon this commitment, HGO coordinated a series of HIV/AIDS caregiver focus groups to gain a better understanding of the challenges associated with caregiving. They also developed a plan of action to implement appropriate programs and services. The qualitative study addresses the challenges, caregiver feelings and recommendations on social work support, and interventions to enhance the quality of life for both the caregivers and care receivers. The caregiver is emphasized as part of the comprehensive response to caregiving. Caregivers are critical to the treatment team; their voices play a crucial role in reducing the negative impact of the HIV/AIDS pandemic. Research that places value on the unpaid caregiver workforce in Kenya will contribute to achieving the short-, intermediate- and long-terms goals of reducing HIV. The caregiver is often the only voice that remains when the HIV-infected person has transitioned. It is the caregiver who can help us to understand the multiple layers of complexity that accompany living or dying with the disease. Ecological Systems Theory The Ecological Systems Theory explains that individuals are constantly communicating with others and other systems in the environment; these systems reciprocally influence each other (Hepworth, Rooney, & Larsen, 1997). Assessment from an ecological perspective requires knowledge of the systems involved in interaction between individuals and their environment (Turner, 1996). The systems include: subsystems of the individual; interpersonal systems; organizations, institutions and communities; and the physical environment (Hepworth, Rooney, & Larsen, 1997). HIV/AIDS caregivers often use interpersonal systems as resources. However, in Nairobi, Kenya there is a need for more formal resources (i.e. organizations and institutions) to provide support. Many Africans view family as a vital part of survival, as evidenced throughout the early historical experience of African people. This powerful ancestral lineage is the backbone and support of a number of African family systems. Working together as a holistic unit is a main value in many African cultures and traditions. The United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act (2003) reports that during the last 20 years, HIV/AIDS has assumed pandemic proportions, spreading from the most severely affected regions, sub-Saharan Africa, to all corners of the world. According to the Joint United Nations Program on HIV/AIDS (UNAIDS), more than 65 million individuals worldwide have been infected with HIV since the epidemic began, over 25 million of these individuals have lost their lives to the disease, and greater than 14 million children have been orphaned by the disease. The UNAIDS reports that HIV/AIDS is the fourth highest cause of death in the world (United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act, 2003). HIV/AIDS in Africa As the leading cause of death in sub-Saharan Africa, AIDS has killed more than 19,400,000 individuals (more than 3 times the number of AIDS deaths in the rest of the world) and will claim the lives of one-quarter of the population, mostly adults, in the next decade (United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act, 2003). The aforementioned authors assert that HIV/AIDS: "undermines the economic security of a country and individual businesses in that country by weakening the productivity and longevity of the labor force across a broad array of economic sectors and by reducing the potential for economic growth over the long term" (United States Leadership Against HIV/AIDS, Tuberculosis and Malaria, 2003). HIV/AIDS threatens personal safety by affecting the health, lifespan, and productivity of an individual. It also affects the social cohesion as well as economic well-being of the family. Women Women in particular are devastated by this pandemic. Women are four times more vulnerable to infection than men and are becoming infected at increasingly high rates. This is partly because many societies do not provide poor women and young girls with the social, legal, and cultural protections against high risk activities that expose them to HIV/AIDS. Women and children who are refugees or are internally displaced persons are especially vulnerable to sexual exploitation and violence, thereby increasing the possibility of HIV infection (United States Leadership Against HIV/AIDS, Tuberculosis and Malaria, 2003). U.S. President's Emergency Plan for AIDS Relief In 2003, the U.S. President's Emergency Plan for AIDS Relief (PEPFAR) was launched to combat global HIV/AIDS (PEPFAR, 2010). PEPFAR is the largest commitment by any nation to combat a single disease in history (PEPFAR, 2010). Palliative care under PEPFAR is "a comprehensive approach to providing services which support quality of life for HIV-positive adults and children" (PEPFAR, 2010). Traditional palliative care usually focuses on pain and symptom relief at the end of life. However, PEPFAR programs have a holistic view that incorporates clinical, psychological, spiritual, social, and preventive care services (PEPFAR, 2010). As of September 30, 2008, PEPFAR has supported care for more than 10.1 million people affected by HIV/AIDS worldwide (PEPFAR, 2010). This number includes more than 4 million orphans and vulnerable children . PEPFAR (2010) has also supported the training or retraining of 462,500 individuals to care for people living with HIV/AIDS. Participant selection Country Side Widows and Orphans Enterprises (COSWE), an organization registered under Kenya's Non-Governmental Organizations Bureau (NGO), served as the host for this research. COSWE collaborated with the Kenya Commissioner of Social Service and identified organizations to participate in the focus groups based on their work related to caregivers of persons living with HIV/AIDS. Table 1 provides a description of the agencies and caregiver recruitment strategies utilized by each NGO. Table 1 NGO Caregiver Recruitment
Research Design The researchers selected grounded theory to organize their research. According to Glaser and Strauss (1967) and Strauss and Corbin (1994), Grounded Theory uses a case rather than a variable perspective. A case perspective is more robust in drawing out the complexities of the caregiver's role. It allows the words of the caregiver to become the data. The researcher uses this data to identify the theory that helps to translate the implicit to the explicit. Materials and Procedure Measures The moderators utilized a moderator's guide, which included 6 discussion questions (with prompts) developed by researcher, Dr. Sandra Edmonds Crewe, Associate Dean of Howard University's School of Social Work. These questions were utilized in a 2003 AARP Grandparent Caregiver study. The guide originally included 7 questions. However, only 6 were utilized in this study. Input on the 6 discussion questions was provided by the Kenya Commissioner of Social Services and by two Master level Kenyan social workers who had extensive experience working HIV/AIDS patients and teaching at various universities in Kenya. Based on their feedback, the guide was slightly modified to reflect cultural sensitivity. This change was consistent with Crewe and Stowell-Ritter's (2003) observation that "Rituals such as greeting participants and acknowledging their [focus group participants] values are critically important in getting them to be open and honest with the process" (p. 6). Cultural sensitivity and trust are essential. Thus, the research design included a moderator who was a Kenyan social worker. This enabled the participants to be more receptive and comfortable while discussing a very personal, potentially sensitive, part of their lives. Procedure Through phone calls and organization letters, COSWE confirmed the planned attendance from each recruited organization. Group meetings took place between 10am- 10:30 am. The moderators, Kenyan master social worker and educator, Betty Beautah and social work researcher, Dr. Charnetta Gadling-Cole, explained the purpose of the focus group and reviewed the research consent form both in Swahili and English. By signing the consent form, group members agreed to participate and abide by the rules of confidentiality. They were informed that they would receive 100 shillings ($1.20) to purchase lunch (1 Kenyan shilling = 0.01188 U.S. dollars). Data Analysis The focus groups were tape recorded, translated, and transcribed. Using content analysis, themes that best described the challenges of the participants were identified. The data was also analyzed to better understand resilience and other factors that contributed to the caregiver's well-being. Member checking was used to reach agreement on the themes that emerged from the data. The themes identified in this article are the ones that were derived from the statements of multiple caregivers. The themes that follow have emerged from the data as consistent with grounded theory. The caregivers reached agreement through their voices on the challenges that they experienced. There were 43 caregivers who participated in the focus groups, 34 women and 9 men. At the time of the interview, the caregivers' ages of the caregivers ranged from 16 to 80 years. Their relationships with the patients ranged from being relatives to friends and neighbors. The patients' ages ranged from 1 to 55 years. Thirteen caregivers were married, 18 were single, 1 was divorced, 4 identified as being separated and 7 were widows. Fourteen caregivers were employed, 22 were unemployed and 7 volunteered. Table 2 provides additional caregivers demographics included in the study. Table 2 Participant Information
HIV/AIDS Caregivers: Identified Challenges Caregivers for persons with HIV/AIDS identified four major themes that help to understand their challenges. The four themes are family stability, stigma, treatment, and caregiver training. These areas are discussed in the following sections. Family stability: Pleading for help Because the caregivers are immersed into the family of the person with HIV, they are able to observe firsthand the negative impact of the disease on the family system. For example, caregivers often focus on youth who are displaced because the head-of-the-family's inability to maintain the home while taking care of his/her illness. Family instability can be caused by the disruption of income that occurs when the caregiver or the care receiver is the head of household. This can lead orphaned and displaced children to becoming dependent on the street for survival. A caregivers states: There is the problem of street children who end up in the streets after their parents have died (from AIDS) - all they need is a good shelter, food, and to be able to go to school...so I am pleading on behalf of the street children. Caregiving also impacts family stability through the loss of income that women experience. This loss is tied to both the stigma of the illness and the time consumed by caregiving. Widows are forced to use their skills to create entrepreneurial opportunities when the husband, who is the primary source of income, dies. Using their skills as homemakers, they try to piece together income for the family. The following caregiver voices provide a context for this: Caregiver Voice #1 In most cases, people are jobless, selling vegetables by the roadside and saving something for their children...by the time they are down and bedridden, the children have got nobody to care for them or feed them; hence, they end up on the street and that has contributed to the amount of street children in Kenya today. Caregiver Voice #2: The mother who does a small business of making donuts by the side of the road...people are shunning [customers] from buying from her because her skin is rough - the father, who cannot work, sends the children to school to be given food...so the little I have I [have] got to share with them. Caregiver Voice #3: If your husband has died, there is nobody who will take responsibility of your upkeep unless you yourself derive a way of [sic] your survival together with your children to make your family unit strong. Widows really face it rough - I am pleading for the sake of the widows, especially those who were housewives and the husbands were the ones who used to work; now the husband has died and they don't have a rough idea on how to cope with life because they were used to the husband to bring home milk, food and everything...now who will help them? Not neighbors, nor the relatives; therefore widows have a big, big problem. Having a home is a part of the stability of families. When housing is disrupted, families not only find themselves vulnerable to the hardships of the streets, but also open to the beneficence of others. In order to maintain one's sense of well-being, it is absolutely essential to have the security of a place and the means to heal that will not be taken away during a grieving period. The caregivers conveyed the importance of housing and the impact of its loss. A caregiver laments: ...These people live in rented houses and the owner may not allow them to live for two or three months without paying...he locks them out. As a caregiver, when you go and find your patient and children locked out of the house you don't know who to go and face. The only alternative is to go to the local Chief, who gives you a letter to come plead with the owner of the house to be allowed in...but who is going to pay the outstanding rent? The loss of housing is one of the major factors that contribute to family instability. Among the most affected victims of this disruption, children sometimes find themselves without parents or a place to call home. This disruption has long-term effects generation after generation. Thus, policy should focus on programming that ensures the highest possible quality of life for the children who face a lifetime of loss as a result of their parent's or caregiver's infection. The African family has persistently maintained its place as the central human social unit, despite changes in size, structure, and function. The clanship system, a network of individuals based on kin or blood relationships exists beyond the traditional African family. Patterns of family-centered treatment and care are deeply embedded in this wider kinship system. The AIDS epidemic has caused adverse psychosocial and economic consequences, leading to changes in the family structure. Thus, the capacity of the nuclear and extended family to respond to the needs of members afflicted by HIV and AIDS has been disturbed. Hence, the clanship system could become the locus of AIDS activity, designed to ensure the well-being and continuity of the family where its leadership undertakes to sustain, reorganize, or create wholly new families or structures among populations being devastated by AIDS. Stigmatization: Despised and shunned Another major theme that emerged from the research is stigmatization. The HIV epidemic has not only taken over the body, but has also created a cloud around the person and his/her family that is counterproductive to treatment and prevention. This is indeed one of the most difficult challenges that social workers face in arresting the disease. Receiving community support often relies on a trust and comfort level. Stigmatization is a deterrent to persons obtaining knowledge, getting help, and helping others. Thus, the stigma of HIV has become a major player in the continued number of families infected and affected by HIV. Help-seeking is in itself difficult for many. Theories of help-seeking clearly document the link between culture and seeking help. (Rickwood, Deane, Wilson & Ciarrochi, 2005). However, the authors findings suggest there is also a link between the HIV culture and the offering of help. Thus, caregivers often find themselves abandoned by traditional family supports because of stigmatization and the fear of the disease transmission. Also, the moral judgments placed on persons infected with HIV isolates them. There is a fear of "catching" the disease and of being associated with what is considered a negative and often immoral lifestyle. This lifestyle is presumed responsible for the illness, making HIV a particularly difficult opponent. There are two battles that must be waged simultaneously. Caregivers understand this and make a decision to help despite these issues. Their choice to care is sometimes made out of necessity-some caregivers are HIV-infected while others feel a sense of family obligation. Yet, others do so because they are a part of the community family. In other words, the authors assert they do not have a blood kinship bond but have a spiritual bond that compels them to help and not judge. Thus, spirituality is critically important to both caregiver choices and their resilience in helping despite the stigma. This sentiment is represented by the following caregiver: When somebody is abandoned and you volunteer yourself to go care for him/her, you do not expect anything or anyone is coming to pay you unless somebody comes to your rescue...there are so many things you put in consideration - you go there, you take care of the person who is HIV-positive and nobody cares even that the home is being isolated because they think if that person is HIV[-positive] and [sic] even by greeting you...you can be infected. One can see from the caregiver's statement that stigma results in isolation and that many persons are left to the goodwill of persons who are committed to help. It also affects the persons needing help. Because he/she is aware of the stigma, the patient sometimes rejects assistance because he/she fears that the community will find out that his/her home is infected, incurring the wrath of the disease on his/her family as well. Another caretaker describes the situation: The problem that we are actually facing on the ground with HIV and AIDS[is] we hear that caregivers are working to take care of these peoples living with HIV and AIDS. The first thing in their [those with HIV/AIDS] minds is that their names will be told to others in the community; but the whole society knows, so they fear the caregivers who are going to their houses and taking care of them. This stigma-induced fear for HIV-infected persons to accept help is difficult for the caregiver to seek outside assistance. Doing so would betray the patient's confidence and possibly diminish help to none. Therefore, tackling stigma is complex and it requires a strategy that is community-centered, not simply person-centered. Another caretaker reports: Concerning this AIDS disease...I am, as an employer of one of the patients, I try visiting so many patient[s], but the idea is tough because so many do not accept their situation, because of the fear of being despised by their relatives and shunned out...life can be hard if somebody is employed - if he mentions he is infected he can be retired or where he lives nobody dares to visit him. This caregiver brings to light the necessity of community involvement including employers. If an employer feels that his/her business will be negatively affected, the need to protect his/her livelihood often will supersede his/her feelings of wanting to help. Thus, a community-based educational approach is clearly indicated. Stigma has had a tremendous effect on the HIV/AIDS epidemic's course. The World Health Organization (2008) suggests that fear of stigma and discrimination are the main reasons people are reluctant to be tested, to disclose HIV status, or to take antiretroviral drugs. A study found that participants who reported high levels of stigma were more than 4 times more likely to report poor access to care (Sayles, Wong, Kinsler, Martins, & Cunningham, 2009). These factors all contribute to the expansion of the epidemic and a higher number of AIDS-related deaths. Treatment: A willing heart The third major challenge identified by the caregivers dealt with the treatment of the HIV/AIDS person. Most caregivers want the persons that they care for to do well. While appreciating that HIV is a death sentence for many, they continue to search for ways to make the individual feel and fare better. When this is outside of their reach, frustration becomes high. The voices of the caregivers did not indicate burnout--- rather, they spoke with a sense of urgency, advocating for better treatment. Here is an example of this commitment from one of the caregivers: At times the house is in a mess and some of them cannot even make [it] to the toilet...hence, finishing their business on the bedding...you will have to clean and at times you don't have gloves - we end up using polythene papers. You enter their house; they have not cleaned them and there is no soap or any detergent - you end up using cheap soap which is not effective...hence, you are also risking your own life because who knows you can also get infection in the process...but because you have a willing heart, you end up doing it. Caregivers also agreed that treatment required sensitivity to gender issues. Privacy is often not afforded to a person when their caregiver is not of the same sex. While struggling for dignity, the need to allow assistance from non-related persons of a different sex added to the embarrassment and shame of the disease. A caregiver stated: [At] the time they are very weak, they cannot even manage to support themselves out there, so there is need to match the sex - I mean maybe the caregiver is a woman and the sick person is a man....now there is a problem. On the other hand you find that the one who is sick does not want to see even a woman coming to attend to him because he is afraid of his private areas, and the same applies to the female - this has brought a lot of problems to caregivers. Another challenge, access to treatment, was also a concern. The lack of a reliable system of transportation is a problem for all. It is even more exacerbated when the system is needed to transport fragile persons. Also, the underground economy makes the cumbersome trip even more complex. A caregiver expresses the frustration caused by a poor transportation system: Another problem we are facing - we work in the slums and there are patients who cannot walk to the main road and when you approach a person for assistance, they want money and the issue of transport in the interior you have to use a bicycle from the interior to the main road to get a minibus and at times the owners of minibuses do not want to carry patients, hence we are stranded and at times we go to the local Chief Camp or Elders to contribute some money, we hire a vehicle to take the patients to Mbagathi District Hospital or Kenyatta National Hospital for treatment. Therefore, transport is a major problem to us. As can be seen by this statement, access to treatment and inadequate income become intertwined. Having the necessary income to purchase basic food products diminished the quality of life of those suffering with HIV. Additionally, the inability to provide such a basic necessity as food makes the caregiver feel even more isolated in their quest to care for persons unable to care for themselves. This frustration is apparent in the following statement from a caregiver: The patients when they are on antiviral they really want to eat properly and with[out] eating properly, they perish early...and the medicines are strong and cannot be taken without food. Others even default after realizing that they don't have food and the aftermath of the drugs is powerful - they tremble and cannot even walk and become weak...so they refuse to take the medicines. Training and preparation: Caught up in the situation The fourth area of challenge that is addressed in this article relates to preparedness or training of the caregiver. Assuming caregiving responsibility is often like childbirth-it happens and we rise to the occasion with little or no preparation other than observation. The difference is that there is a 9 month period to prepare for the new responsibility. The training for caregiving sometimes involves teaching caregivers how to assist HIV/AIDS patients with activities of daily living and instrumental activities of daily living. At other times the caregiving role lands at your feet with little or no preparation. In both cases caregivers are often left to their own skills and resources to provide the needed care. Their acts of caring speak to their commitment yet commitment alone is often inadequate to tackle the complexities of caregiving in a HIV infected and affected home. The nature of HIV does require precautions so that the caregiver does not expose herself. It also requires knowledge of the disease so that the care is appropriate given the particular stage of the illness. When one assumes caregiving without the full appreciation and awareness of the disease, there can be multiple victims including: the person receiving care, their immediate family, the caregiver, and the community as a whole. One of the caregivers described the need for training and support in the following way: We as caregivers...most of us finding ourselves as caregivers was not out of our own liking; we did not start as caregivers, but we found ourselves in a situation that we were taking care of these people because we are caught up in the circumstances with them - although we help and assist them, at times we are stranded on what to do because we are not trained to keep them well and assist them well, but it has become our responsibility to help them. Training and involvement of caregivers and volunteers can significantly reduce the cost of sustaining community-based care programs (National AIDS and STI Control Program, 2004; Muraah & Kiarie, 2001). A community can provide caregivers with positive encouragement that may reduce the HIV-related stigma and encourage changes in traditional practices contributing to the risk of HIV infection. It has been established that the affected family's greatest worry is not just the HIV infection but also the impact the disease has on their income. Meetings with faith based organizations (FBOs) and non-governmental organizations (NGOs) provided additional support for the use of the Ecological Systems Theory to understand caregivers' views and challenges. As illustrated in Table 3, the FBOs and NGOS identified the primacy of socio-economic factors, political strategy, and cultural factors as primary obstacles. Table 3 Identified Factors and Obstacles to Caregiver Success
(FBO and NGO Discussion Forums; NACC, 2006; KEC, 2006) The four themes that emerged from caregivers also can be seen in the discussion with staffs of FBOs and NGOs. Family stability, stigma, and treatment are all clearly connected to identified socio-economic and cultural factors. Stigma, treatment and training also relate to service coordination and implementation. Finally, the political strategy factors provide an understanding for the lack of progress perceived by the caregivers in making HIV/AIDS persons as comfortable and secure as possible. These four areas fit into the elements of ecological systems theory (Turner, 1996) and its presentation of complex layers of environmental influences on the individual. The microsystem encompasses the household within which the caregiver provides support. Belief systems are integral to this layer along with bi-directional influences. The theory holds that interactions at outer levels can still impact the inner structures. The mesosystem connects the family with the neighborhood and the exosystem defines the larger social system that that impact the caregiver's ability to provide needed and desired care. The macrosystem, the outermost system is composed of cultural values, customs and laws. The chronosystem adds the dimension of time that assists in understanding the developmental and psychological changes that occur during different stages of caregiving and the illness. Limitations of the study There are a variety of limitations with conducting research in a developing country. For this research, the major issues were the selection of the focus group participants and where the focus groups took place. The participants were chosen by the identified agencies based on their role as a caregiver with the agency or in the community in which the agency provided services. There is the possibility that sample bias occurred in that the participants were selected based on their relationship with the identified agencies. Other potential caregivers may not have been given the opportunity to participate if they had not had communications or had not developed a relationship with the agency representatives. The focus groups were held in the communities in which the caregivers resided and/or the agencies providing services. The researchers did not prepare for the fact that there would not be proper lighting at the agency where the focus group took place. Candles were used at 2 of the focus groups which made it difficult to maintain eye contact and although each caregiver was given a number in which to place in front of them when they spoke, it was difficult to determine who was actually speaking. Although the sessions were audio taped, this limited the researchers' ability to determine who made comments specific to geographic information. The researchers chose not to video the sessions after receiving feedback from COSWE and the Commissioner of Social Service that this would potentially limit participation. Although there were limitations, this did not hinder the caregiver participants from sharing their voices. It did not matter that they were practically in the dark. To them, having their voice heard seemed to bring them a glimmer of light. Recommendations Based on the HIV/AIDS Caregiver Focus Group participant feedback and the FBO/NGO discussion forums themes, the researchers' recommend an approach that penetrates the various levels of the ecological system. Addressing family instability, stigmatization, treatment deficiencies, and caregiver training requires the interaction among various systems and a focus on the culture of the household where the care is provided. Thus, the authors suggest a case management prevention approach when working with People Living With HIV/AIDS (PLWHA), their family members, youths, disenfranchised adults, and mobile workers. Transmission of human immunodeficiency virus (HIV) infection can be prevented through HIV-prevention case management. This approach will provide a one-on-one client service specifically designed to assist HIV-infected persons in receiving services that will prevent or reduce behaviors that result in further spread of the virus. The case management prevention approach also supports prevention goals by providing multiple opportunities to provide risk-reduction information and to reinforce safer behaviors (CDC, 1993). The case management prevention approach can be implemented utilizing a home-based care model that incorporates interdisciplinary team professionals from a range of disciplines including physicians, nurses, social workers/counselors, chaplains, pharmacists (techs), nutritionists and volunteers. The skills of multiple disciplines working together in coordinating patient/caregiver focused care teams are needed because each member of the team elicits different aspects of the patient's and family's illness experience. Also, there must be an emphasis on education, awareness, and reverence for life; AIDS can be prevented. Several more specific recommendations emerged from this research and can be incorporated into a case management approach that is grounded in cultural sensitivity. Case management will be effective if it addresses methods to identify strategies to increase knowledge regarding HIV/AIDS; reduce stigma, increase treatment access; and provide needed training to informal and family caregivers. The findings collectively implore for greater attention to the affect of the HIV pandemic on caregivers, especially women who constitute most of the caregivers. As previously suggested there is a need for the development and implementation of policies focusing on programming that ensures quality of life for the caregivers, patients, and particularly children who face a lifetime of loss due to the infection of a parent or caregiver. It is imperative that social workers do engage in international research. International social workers promote social change where they are necessary, help solve problems in human relationships and enhance the well-being of people's lives. 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Grounded Theory methodology: An overview. In N. K. Denzin, & Y.S. Lincoln (Eds.), Handbook of Qualitative Research (pp. 273-285). London, UK: Sage Publications. Turner, F. (1996). Social work treatment: Interlocking theoretical approaches (4th ed.). New York: Free Press United States Leadership Against HIV/AIDS, Tuberculosis and Malaria Act of 2003, H.R. 1298, 108th Cong. (2003). Retrieved from http://www.state.gov/documents/organization/30368.pdfhttp://www.state.gov/documents/organization/3 World Health Organization (2008). Towards Universal Access: Scaling up priority HIV/AIDS interventions in the health sector (NLM Publication No. WC 503.6). Geneva, CH: World Health Organization Press. Retrieved from http://www.who.int/hiv/pub/2008progressreport/en/ Charnetta Gadling-Cole, MSW, Ph.D.is an Assistant Professor at the University of Alabama at Birmingham (UAB) in the College of Arts and Sciences, Department Social Work. She holds secondary appointments as a Scientist in the UAB Center for Aging and the Center for AIDS Research. She is also a Scholar in the UAB Minority Health and Health Disparities Research Center and the Geriatric Education Center. She primarily conducts research and publishes in the areas of gerontology, caregiving and international social work. Sandra Edmonds Crewe, MSW, Ph.D. is a Professor and Associate Dean for Howard University School of Social Work. She also serves on faculty in the Howard University Graduate School. Dr. Crewe is the Director of the Multidisciplinary Center for Social Gerontology. She primarily conducts research and publishes in the areas of aging, caregiving, and kinship care. |