Women and Girls
By all estimates, most care and support is provided in the home and women provide two-thirds or more of that care and support (Ogden et al., 2006; Homan et al., 2005b; Akintola, 2006; UN, 2008b; Nyangara et al., 2009b; Surkan et al., 2010). However, this means that one-third of care and support is provided by men, and some have argued that making this more visible can shift gender norms and increase mens involvement (Peacock et al., 2009). The role of fathers, both biological and "social" fathers, in studies and surveys investigating family responses to the care and support of children affected by HIV has been largely ignored (Hosegood and Madhavan, 2010).
Care and Support Programs Often Rely on Women's Unpaid Labor
"Who cares for the carers, and why is it taken for granted that women provide, and will continue to provide, care and support to family members and loved ones, with no sense of the cost and value of this work to society and the economy in general?" (Berman, 2002 cited in Ogden et al., 2006).While ordinary care for families tends to be considered women's domain in most countries, care and support programs have been built on the assumption that the supply of women's labor is unconstrained and flexible and that women's labor will be adjusted in response to crises or illness (Elson, 1999 cited in Ogden et al., 2006). Due to this pervasive view of gender roles, "home-based care is often perceived as a 'cost-effective response' to the epidemic, yet in reality it is exploitation of women's unpaid labour..." (Esplen, 2007: 20). Thus, care often relies on "women, young girls, and elderly grandmothers who are 'default volunteers'..." (Sepulveda et al., 2007: 193). Between 2000 and 2001, 254 interviews of caregivers in Botswana found that 66% of female caregivers were single mothers who provided the bulk of caregiving for their sick children with little or no contribution from fathers, with 21% of HIV caregivers losing pay in order to provide care (Rajaraman et al., 2006).
A distinction can be made between linked and unlinked care, although the two are often used interchangeably in relation to HCBC to refer to both clinical and non-clinical care provided by lay, volunteer or professional providers who are linked to programs and non-clinical care provided by family members who are not linked to programs (Ogden et al., 2006). While a range of organizations are involved in care and support programs, including health facility outreach, NGO-based, faith-based, community-rooted, PLWHA networks and self-help groups, unlinked care is still likely the most prevalent type of care available to people living with HIV and AIDS.
Financial compensation for the labor of women and girls, through reimbursements, stipends, salaries or social protection mechanisms such as pensions, children support grants or cash transfers would go a long way to meeting some of the needs of women and girls (Esplen, 2007). Older women who care for their grandchildren, for example, "may not be physically able to work even if offered the opportunity, nor do most have the capacity to generate income to repay a small loan" (Richter, 2012: 29). In the case of girls, they are often removed from school to care for sick relatives. "This is also a huge economic and social loss, both for them and for their future families" (Paxton et al., 2004a: 2). A study in Tanzania found that mothers and daughters provide most care, with AIDS care reducing time available for food cultivation (Tarimo et al., 2009). A review of cash transfer programs that were not targeted to HIV/AIDS-affected households found that cash transfers demonstrated significant impacts on children to increase school attendance, access to health services and nutrition and could reach the poorest families (Adato and Bassett, 2009). [See also Advancing Education] Provision of home-based antiretroviral therapy may increase adherence and family support. A study based on interviews with 654 people (72% women) receiving HAART through home-based care in rural Uganda found that most reported positive social outcomes, such as increased family support. Home-based care may have advantages in decreasing barriers due to transport, along with the ability to provide for multiple family members (Apondi et al., 2007).
Older Women Need Additional Support
Grandmothers are often the care providers, however, women often have few or no rights to inheritance and property, which particularly affects older women who are widowed (HelpAge International, 2007). Older women are usually considered beyond productive working age, which impedes their income earning abilities. Lack of education further exacerbates their situation in relation to their male counterparts (HelpAge International, 2007). A qualitative study done in 2003 with elderly respondents (50 years and older) in rural and urban communities in two districts of Uganda highlighted the need for comprehensive interventions to support elderly caregivers of people living with HIV and children affected by HIV/AIDS. There was a general concurrence that caring for orphans was more stressful for them especially if the child was also HIV-positive. Most respondents did not feel optimistic about the future and felt that they probably would die sooner than they would have otherwise. While reflecting on appropriate interventions that enable them to address some of the challenges brought upon them by HIV/AIDS, the majority cited assistance with income-generation projects, provision of training programs to enable the respondents to gain better knowledge of best practices of care, and access to protective equipment (Ssengonzi, 2007). A cross-sectional study (year not given) with a hundred elderly caretakers of orphan and dependent children, village and church leaders, local administration, government officials, and members of community-based organizations in Kenya showed the rise in the responsibility of the elderly to provide care for the increasing number of dependent children in their households and their challenge to ensure food security. Fifty percent of the elderly caretakers in the study were between ages 65-87 and 56% had 4-10 dependents in their households. Women constituted 86% of the elderly caretakers. Ninety percent of the caretakers reported old age illnesses, stress and morbidity that significantly inhibited their productive capacity. Thirty-one percent of caretakers highlighted that inadequate income was the major cause of food insecurity followed by lack of energy and strength, lack of time, absence of family resource base, and insufficient household labor (Muga et al., 2009).
Family Counseling and Basic HIV Information Could Provide Needed Support
The needs of carers, mostly women, is often overlooked, but as UNAIDS recognizes, "the strains on those caring for people living with HIV are enormous, and without adequate and reliable support the risk of 'burnout' is high" (UNAIDS, 2009c: NP). Both the physical and psychological toll of being care providers is often overlooked by women and care and support programs alike. Many are isolated and receive little social support because of HIV/AIDS-related stigma and discrimination. Some experience gender-based violence (Apondi et al., 2007). Among women, fathers or caregivers who are living with HIV themselves, deciding how and when to disclose to children is challenging (Manchester, 2004; Vaz et al., 2010; Daniel et al., 2007). "Mothers who have disclosed their status to their children described how extremely difficult it was for them to do so. They often delayed for some years..." (Daniel et al., 2007: 116). Support to disclose is critical. [See Treatment] In a study in Uganda carried out between 2001 and 2005, HIV-positive parents reported inconsistent advice from counselors on whether to, or when to, disclose to children, with no national or NGO guidelines or training for counselors. Yet HIV-positive children should know their serostatus prior to becoming sexually active. Children's perspectives on this topic are needed. Family counseling may be advantageous (Rwemisisi et al., 2008). In a study of the Democratic Republic of Congo, only 3% of 259 children, ages 8 to 17, had been told that their positive serostatus. "Upon learning their HIV status, children felt sadness and worry, but also relief," as they finally learned the cause of their illness and why they needed medication (Vaz et al., 2010: 251).
Many caregivers, whether women or men, lack information about HIV-related illness, basic nursing care, and measures to protect themselves from HIV transmission (Hong et al., 2004). A 2003 to 2004 study of 1,017 people living with HIV in Uganda found that 47% reported depressive symptoms, with women, those over age 50 and those without income more likely to be depressed. Screening for depression should be incorporated in HIV care (Kaharuza et al., 2006). A 2000 to 2001 study in Chennai, India with 141 HIV-positive women and 215 HIV-positive men at a large tertiary care community based center, YRG Care, which has provided care for over 10,000 people living with HIV, found that women were more likely to be separated, widowed or abandoned, more likely to be unemployed and more likely to have a substantially lower income than men. Women scored lower than men on all items measuring quality of life (such as worry about being able to take care of oneself, having negative feelings) except being comfortable talking to family and friends about their HIV status. HIV-positive women still bear the majority of household caretaking responsibilities and suffer stigma and shame due to their serostatus. With access to ARV therapy, HIV-positive men and women are living longer, making quality of life an important concern (Solomon et al., 2008).
Few Home-Based Care Programs Address the Specific Needs of Women
The evidence base on home-based care is weak. As a recent Cochrane review stated: "Studies [on home-based care for people with HIV] were generally small and very few studies were done in developing countries. There was a lack of studies looking at the effect of home-based care itself or looking at significant end points (death and progression to AIDS)" (Young and Busgeeth, 2010: 2).
Many women cannot afford to visit a clinic or hospital for treatment. Most prefer to be cared for and die in their own surroundings. Women are also concerned about leaving their children alone if they are hospitalized. Likewise, children are put in the position of having to watch their parents and elders grow increasingly sick and die, to intimately handle their bodies, to wonder and worry whether they are "doing it right" or "doing enough," while at the same time dealing with their sorrow, grief, and facing an uncertain future (Ogden et al., 2004). In addition, women who mother and care for children living with HIV in resource-limited settings face many challenges, ranging from the routine of pill-taking to disturbing discussions on health. One eight-year-old girl said: "Mummy tells me to take my pills, otherwise I will die and to not tell anybody... because it's AIDS" (Hejoaka, 2009: 873).
Increasing the Role of Men in Care and Support is Necessary
Gender norms keep men from participating more fully in care and support, although some programming to increase the role of men is underway (Gomo, ND). Providing monetary support for men and boys who provide care and support could also expand their participation. However, shifting some of the burden of care to men will be insufficient to "address the profound issues of poverty, strain and hardship of caregiving on families and households. Nor is it likely to meet the ever growing gaps in services and safety nets on the part of governments associated with health sector reforms, decentralization, privatization and cuts to social spending" (UN, 2008b: 9). A 2008 study of 31 focus groups with 264 people in villages, health clinics and hospitals in three districts in Lesotho to assess HIV/AIDS care from those participating in and potentially affected by health care initiatives found that men stand to lose respect from other men and discretionary time by entering into community home-based care, but stand to gain economically by now working as a remunerated community health worker. While men's participation in community-based home care can alleviate the disproportionate burden of HIV/AIDS care, women stand to lose the benefit of social recognition and may face competition from men for community health worker jobs. Training for male and female community health workers should involve critical reflections on gender roles and responsibilities. More than 70% of men in Lesotho were willing to care for a family member with AIDS in their home with training and support (Newman et al., 2009).
The Financial Toll of HIV and AIDS on Families is Great
HIV and AIDS can take a tremendous financial toll on households. Asset liquidation among AIDS caregivers to cope with the economic impact occurs, first liquidating savings, then business income, then household assets, then productive assets, and finally, land (Strickland, 2004). Profits from sales of assets may offset losses resulting from caregivers (usually women and girls) being diverted from other income-generating activities. Of note, land is the last asset to be sold given its centrality to sustaining women and families (Drimie, 2002 cited in Strickland, 2004). Up to 41% of female-headed households live below local poverty levels and lack resources to buy land or property or develop land allocated to them (UN Habitat, 2002 cited in Strickland, 2004). A study in Botswana found that caregivers spent on average US$187.17 per month that was not remunerated, exceeding the monthly income of caregivers and any government financial support (Ama and Seloilwe, 2010). Assessment of HBCB programs in South Africa found that poverty is a constant underlying issue for many HIV-affected households (Horizons, 2005).
For those who are linked to programs, a number of studies find that more women than men attend care facilities, reflecting both that women have more access to health services during pregnancy, to obtain contraception or to obtain health care for their children, as well as gender norms that promote health seeking behavior among women (when they are not ignoring their own health to care for others), but not among men. A study in Burkina Faso, for example, confirmed the low presence of seropositive men not only in the consultation rooms of physicians but also for services that provide food, medicine or school supplies. Few men participated in health care facility orientations or support groups for people living with HIV, despite the fact that the 2003 DHS survey of Burkina Faso found that among ages 15 to 49, 1.9% of women are HIV-positive and 1.8% of men are HIV-positive. "Even when seropositive men consent to follow-up, it is widespread practice for women to stand in for their husband, who has stood apart... if his presence is essential... especially in cases of drug, food or other aid distribution" (Bila and Egrot, 2009:857). Women say they do this both to conceal the man's shame and to avoid widowhood.
Food and Nutrition is a Critical Component of Care and Support
Food prices have increased and energy consumption has declined between 2006 and 2010 in nearly all developing countries, resulting in an additional 457 million people at risk of being hungry and "many more unable to afford the dietary quality required to perform, develop and grow well" (Brinkman et al., 2010: 153S), most affecting people with HIV and TB, as well as pregnant women and young children. The evidence base on "actions aimed at combating the HIV/AIDS--food insecurity nexus... is still thin" (Gillespie, 2006 cited in World Bank, 2007: iv, section A). Nutritious food is critical to people living with HIV, who are two to six times more likely to die soon after initiating therapy if they are malnourished (UNAIDS, 2011a). Baseline nutritional status predicts survival on ART (Srasubkul, 2009, Toure, 2008, etc., cited in Tang, 2012). However, "what we don't know is will interventions to improve weight and BMI [body mass index] prior to or at ART initiation improve subsequent outcomes?" (Tang, 2012). Food insecurity can affect ART uptake and adherence as well as jeopardize caregiving (Tang, 2012; Maes et al., 2011). HAART improves key nutritional indexes, such as BMI and anemia (Masaisa et al., 2011), and whether to provide food supplementation to those on treatment "depends on the patients' diet and food security" (De Pee and Semba, 2010: S313).
For Those Who Test HIV-Positive, What Care Besides Treatment is Needed?
"A different set of questions arises about the management of those who have already been initiated on treatment. How frequently should they be seen? Should their CD4 count be monitored? What tests for toxicity of drugs are required? And should measurement of viral load be made to identify successful viral suppression and failure?" (IOM, 2011: 185). Disclosure may be helping in gaining support -- but it can also lead to violence and abandonment (Eustace and Ilagan, 2010). For those who are HIV-positive yet do not yet meet their country's national guidelines to start ART, mechanisms are needed to best deliver needed packages of care, such as co-trimoxazole preventive prophylaxis, isoniazid preventive therapy, insecticide-treated bednets and nutritional support (Zachariah et al., 2011a). In addition, simple monitoring to follow retention and attrition, both for those not yet eligible and those who have been stabilized on treatment, is needed (Zachariah et al., 2011a). A simple test for monitoring viral load and CD4 counts that could be used by patients at home in low-resource settings is needed (Zachariah et al., 2011a). [See also Treatment and Preventing, Detecting and Treating Critical Co-Infections]
Furthermore, people on ART have palliative care needs (International Palliative Care Initiative, 2010). A study in Tanzania found that palliative care intervention was indicated for 378 (51.7%) patients. The majority was female (70.9%). Morphine was being prescribed to 21 patients (2.8%) and ART was being prescribed to 434 (59.4%). In the field of African HIV care where mortality is high, palliative care has been shown to be largely lacking though it continues to be an important part of HIV programs even in the presence of ARV treatment (Collins and Harding, 2007).
While remarkable improvements have been made for both patients and caregivers with access to HAART, caregiving is still needed. A 2008 UNAIDS review of caregiving in the context of HIV/AIDS concluded that "caregiving must be addressed through a mix of strategies and development lenses, adapted to different social and economic contexts, in order to address the economic, social and psychological burden of caregiving on individuals, families, communities and economies" (UN, 2008b: 9). Inputs from governments, as well as NGOs and communities, are needed. The UNAIDS review calls for investment in operational research to "better understand caregiving in the context of HIV and AIDS and to generate strategic information to inform programming" (UN, 2008b: 13). A review by the Horizons project called for situational analyses of HCBC programs to assess the "scope, content and quality of services offered in different communities" (Horizons, 2005). Further research on cost-effectiveness of HCBC programs is needed to analyze the cost and benefit of participation to households, and referral systems to care and support programs must be strengthened (Horizons, 2005). However, even in 2012, "...there is little science to guide implementation and expansion of programs" (Richter, 2012: 34).
Care and Support is Now Chronic Care
Care and support has evolved since 2005 from addressing the needs of those dying to caring for those with a long-term, chronic, stigmatized disease. Once a patient has been initiated on treatment, there is currently no unified field addressing HIV survivorship, bringing together the fields of clinical, behavioral, public health and health services to improve the quality of life for people living with HIV (Buscher and Giordano, 2010). Continuing support has been shown to be important for the transition to living with and managing HIV as a chronic condition (Seeley and Russell, 2010). However, in cases of treatment failure, palliative care is needed and can be added onto home-based care, decreasing pain, symptoms, patient worry and family worry and increasing quality of life, feelings of peace and planning for the future (Defilippi and Cameron, 2010).