8.2.1 Theoretical considerations
Household, homestead and living arrangements
In the 1990’s many authors deliberated on the meaning of households and household headship. The universal definition of the household as group of people, related and/or non- related, living together and sharing certain resources is still relevant for most countries and in urban and rural areas, and as a unit of analysis. This research also used the concept ‘homestead’, in this context, referring to the setting, or place where the group of people live together. Preference was given to the term homestead rather than ‘house’ or ‘home’ as homesteads in non-urban areas usually consist of several living units rather than just one house. Regardless of whether the homestead consist of one or several living units and several family units, there will be one overall head.
This research also used the concept ‘living arrangements’ to emphasise the dynamic nature of the household with its fluid or flexible boundaries where people of different ages frequently move in and out for various AIDS-related and non-AIDS related reasons. The concept is used here to illustrate the dynamic nature of the household over time in contrast to the more static perception of household composition at a point in time. Although the concept has been used by several researchers in similar studies, it was frequently not clearly defined. In the context of HIV and AIDS many of these studies focus on the living arrangements of the elderly (Hosegood and Timaeus, 2006; Merli and Palloni, 2006; Madhavan and Schatz, 2007; Schatz, 2007; Zimmer, 2009) and of orphaned children (Madhavan, 2004; Ford and Hosegood, 2005; Heymann et al., 2007; Kuo and Operario, 2010). More general studies on living arrangements include Hosegood et al. (2004). It is hoped that this research can contribute to a theoretical discussion and better understanding of this concept and its use in research of the living arrangements of households in the context of AIDS and not only limited to the elderly and orphaned children.
Although the majority of children in the case study households manage to stay in school, as also found by Kakuru (2006), they are absent from school more often due to
Conclusions and general discussion
HIV/AIDS-related morbidity and mortality. As a result they fall behind. All children aged 10 and older in the case study households were in grades below those appropriate for their respective ages. These children are at risk of eventually dropping out of school. Some children choose to stay at the homestead of their late parents, with or without adult supervision, rather than moving in with grandparents or other relatives. They do so in an attempt to retain the homestead and the land they inherited from their parents. But, this may make children vulnerable to exploitation. Child migration as a strategy to cope with HIV/AIDS-related morbidity, as described by Ansell and Van Blerk (2004) and Ansell and Young (2004), was employed by some of the households. Although migration in search of employment has long been common in Southern Africa, migration of ill persons and children seeking care is a much more recent phenomenon (Young and Ansell, 2003).
Afflicted and/or affected by HIV and AIDS
This study categorised households based on whether and how they are afflicted and or affected by HIV and AIDS for study of the impacts of HIV and AIDS on the households (cf. Barnett and Blaikie, 1992). Although it was probably never the intention of Barnett and Blaikie for their description of households in this manner to be used as a basis for categorisation in research, it proved to be a useful categorisation for studying the different impacts of HIV and AIDS on households. Wiegers (2008) also disaggregated households by sex and age of head and by whether households are caring for ill persons or orphans. Nombo (2007) and Karuhanga (2008) only classified households as affected and non- affected. From this study it is clear that impacts are more pronounced in households that experienced all the direct and indirect impacts of HIV and AIDS, including illness, death and orphans. However, one should not forget that other chronic illnesses and deaths that cannot be attributes to AIDS may have similar impacts on households, especially where illness and death occur amongst the economically active household members.
Phases of care
The four phases of care identified by Tronto (1993) have used previously by Luijkx (2001) and Keasberry (2002) in the assessment of elder care, respectively in the Netherlands and Indonesia. Since then Niehof (2004) applied the model phases to the results of a study on home-based care for people living with AIDS in Zimbabwe and formulated the micro- ecological approach to health, which incorporates Tronto’s four phases. In this study, Tronto’s framework was successfully used to illustrate the roles that different actors in the formal and informal care sector play during the different phases of care, linking the phases of care to the type(s) of social capital required during each phase, as well as – though to a lesser extent – to the stage of the illness. More recent references to Tronto’s phases of care in the context of HIV and AIDS include Razavi (2007) and Makoae and Jubber (2008) referring extensively to gender and care, and Evans and Thomas (2009) and Mindry (2010) referring to family care giving.
When studying care using Tronto’s framework, it not only brings out clearly the burden of care brought about by AIDS-related illness, but also illustrates that care at the household and community level is still mainly done by women. The gendered nature of care and the heavy reliance on women’s unpaid care work is highlighted by Makina (2009), who studies family care in Zimbabwe. Makina also claims that the additional burden of care has the effect of impoverishing women and reinforcing gender stereotypes. However, there are examples of men’s involvement in the provision of care for maternal orphans (Hosegood and Madhavan, 2010).
Chapter 8
The cases discussed clearly reveal that women are still the main providers of health- and childcare. When the demand on their time to provide care increases, they have less time to devote to income generating and community activities, which means less time to invest in social networks (Ogden et al., 2006). Research in Tanzania has shown that at some point deteriorating material resources and dwindling social capital reinforce one another (Nombo and Niehof, 2008). This will cause already poor households with weak safety nets ‘to fall through’ the vulnerability threshold (Donahue et al., 2001; Donahue, 2006). All case households reveal the significance of social capital, the network of kin in particular, as a source of material and immaterial support. Relatives may take in a child to relieve the household’s burden, may send money, or may provide emotional and practical support. When there are no relatives living nearby, the neighbours provide the latter kind of support. At the same time, the cases also show ‘missing’ partners and parents who have opted out and whose whereabouts are sometimes not even known.
Micro-ecological approach to home care
Niehof (2004) studies care from the perspective of the household, where care also for people with AIDS is produced and consumed in the household. To provide care, social capital and resources that are not always available in the household need to be mobilised. The link between social capital and care is highlighted in this study and was also investigated by Nombo (2007). The household as the first line or provider of care should always be seen as embedded in a meso- and macro-environment as illustrated in the conceptual framework (see Figure 2.3) which guided this study. In this study, the meso- environment study includes the community health care workers who play an extremely important role in the arrangement, provision and integration of care in the research area. The macro-environment, which includes the private and public health care services as well as the policies guiding their services, is equally important as households and community health care workers reach a point where they rely on treatment, care and support provided by this environment. Using the household as the unit of analysis when assessing home- and community-based arrangement and provision of care is essential. But it is also important to look beyond the boundaries of the household at inter-household arrangement and provision of care, as illustrated by two cases in this study.
8.2.2 Methodological considerations
For various reasons HIV/AIDS research is methodologically complex (Wiegers, 2008). A major problem is identifying HIV/AIDS impacts as distinct from other factors that impinge on rural livelihoods. This problem of ‘inadequate impact attribution’ (Murphy et al., 2005: 270) is particularly urgent in cross-sectional surveys that use proxy indicators for HIV- infection and where control households are lacking. HIV/AIDS research is dominated by the use of survey methods and quantitative data collection. Reviewing 36 impact studies Booysen and Arntz (2003) only found 11 that also used qualitative methods of data collection, such as focus groups and in-depth-interviews. Since then several qualitative studies on the socio-economic, socio-cultural and psychosocial impact of AIDS on the living and care arrangements of individuals and households have been conducted (Young and Ansell, 2003; Russell, 2004; Knodel, 2005; Mongomery et al., 2006; Hosegood et al., 2007; Swaans et al., 2008; Ardington et al., 2009; Hosegood, 2009).
Conclusions and general discussion Research approaches
In South Africa there are two major longitudinal research projects studying the demo- graphic and socio-economic impacts over an extended period of time. Both these projects have been running for more than ten years and both illustrate the range of impacts on households over time (cf. Hosegood et al., 2007; Madhavan and Schatz, 2007). Impact needs to be studied over time , given that the full impact of the epidemic is not yet visible at all levels of society. This research illustrates though, that impacts on household living arrangements and livelihoods can be already seen in a relatively short period of time (six months).
In addition to this it is essential to combine quantitative and qualitative approaches to get a better understanding and clearer picture of household living and care arrangements and livelihood generations. This study provides and illustration of a combination of the two approaches and how they complement each other. In addition to this it is important to get the insider’s view when studying the impacts of HIV and AIDS on living and care arrangements and livelihoods (Niehof and Price, 2008).
Ethics
Studying the care of ill persons is very personal, and easily invades the privacy, not only of the care receiver, but also of the caregivers, who are sometimes unsure of themselves. Observation of this nature should thus be done with great sensitivity and empathy. In this study, the observation of nursing care activities was therefore limited to only a few cases. The selection of these cases was also biased, as this kind of observation could only be done in cases where the researcher managed to establish a relationship with both caregivers and care receivers. Many decisions relating to their care are taken out of the hands of persons with AIDS.