The relevance of timing of illness and death events in the household life cycle for coping outcomes in rural Uganda in the era of HIV

Rural communities in the developing world experience a spiral of stressors and shocks that cause numerous socio-economic changes during their life. These include unpredictable weather patterns that affect agricultural production and long-term political and economic instability. In many countries in Africa, the HIV/AIDS epidemic has also contributed to prime-age illness and death and labour, asset and income loss, affecting productivity and livelihoods, particularly for those in agricultural communities [1, 2]. It is estimated that it can take up to three decades before full knowledge of the effects of the epidemic on households can be obtained [3]. Over time, these different changes have compounded into ever-growing challenges to which households continuously respond in various ways, with different outcomes. Isolating the effects of a single source of stressors, such as the effect of the HIV/AIDS epidemic, can be challenging for policy-makers [4–6]. Studies that have conducted long-term monitoring still find it difficult to demonstrate the impact of HIV/AIDS and household ability to cope [4, 5, 7–10].

This study makes use of the availability of detailed longitudinal data from a study cohort in rural Uganda to analyse how the severity of the effects of adult illness and death on households can be linked to household life cycle stages. Exploring these links can give valuable insights about household vulnerability to stresses and shocks, including AIDS related challenges. The life cycle perspective recognises that as individuals in households move through their lives over time, their roles, resources, capabilities and vulnerabilities change [11]. The common family paths included in some studies are; young-singlehood, marriage, childbirth, children leaving the household, old-singlehood, death or disability of household head, and takeover by the next generation [5, 12]. In the context of the present study the life cycle concept is used to mean the stages of development that a household (as opposed to an individual) goes through over time. There can be variations and overlaps in life cycles and non-traditional household structures exist as well, such as single adults or adults who do not leave the parental home. We demarcated the stages by merging several common family cycle stages to come up with three broad stages that reflected the issues arising from the empirical material; ‘Young’, ‘Middle-aged’ and ‘Old’. The demarcations are mainly based on the presence and age of dependents, and we characterise these stages further in the analysis.

Most of the population in Uganda subsists on agricultural production through small-scale farming that is reliant on rainfall. Farms are run by households, which are defined as kinship groups that share foodstuffs and that live together or in close proximity [13]. An adult illness or a death within a household can lead to outcomes that may range from mild to severe. While some households may be able to cope well with the change and even improve their livelihoods, there are those that will struggle and experience difficulties, such as food shortages or even dissolution of the household. Household ability to cope is defined here as responding to changes resulting from illness or death so as to sustain livelihoods. In the analysis we used ‘coping well’, meaning that the household managed to meet basic needs also some time after the event, and ‘struggling’, meaning that the household either struggled to meet basic needs from the onset of the events, or that the household initially managed to cope, for example through selling assets or relying on support from outside, but in the long term was unable to meet basic needs.

Studies show that when environmental, economic, political and health-related events occur, the response strategies vary depending on the household characteristics and level of asset ownership [8, 10], factors which may also be associated with the household’s life cycle stage. There are few studies in Uganda analysing how the ‘age’ of the household influences the ability to cope and those studies that have been performed use national-level data and focus on a single age group, such as the elderly [14]. In the present study, a household life cycle perspective was used to examine differences in how individuals in households experience and respond to illness and death events. The households included were part of a study cohort in rural Uganda and hence the contextual information and established rapport and relationships necessary for this kind of analysis were already in place.

Of the 22 households interviewed, 16 households reported up to 26 separate illness (16) and death (10) events of adults, Fig. 1. Of the 16 sickness events recorded, three took place in Young households, six in Middle-aged households and seven in Old households. Of the 10 death events, eight were in Middle-aged households and two in Old households. The outcomes indicated that most households had managed to cope with illness and death, as there were 16 cases of ‘coping well’ compared with 10 of ‘struggling’. Furthermore, the analysis seemed to suggest that Middle-aged households coped more easily following a death, as seven out of eight Middle-aged households that experienced a death coped well, while five out of seven Old households struggled following an illness event. There were usually also other explanations for coping experiences, as listed in the discussion section.

In order to improve understanding of how rural-based households in a sub-Saharan African context experience the HIV/AIDS epidemic, in this analysis we investigated whether household life cycle could partly explain differing experiences of coping with the changes related to illness or death of adult household members.

The results suggest that focusing broadly on households experiencing illness and death (such as current policies targeting e.g. orphans only do) is likely to be a blunt tool for reaching the most vulnerable. The majority of the households in our sample managed to cope with illness and death events, which suggest the need for deeper understanding of the processes that enable households to cope or not. The factors that characterise households, such as life cycle stage, play an important role in determining their responses to illness and death.

Faced with effects of illness and death, household response dynamics and decision making are sometimes similar, but do not always result in the same outcomes. Some may adjust and cope well with the changes, while others may struggle to cope, either from the onset of the problems or after some time of dealing with the difficulties. The latter occurs especially when households apply practices that are detrimental to long-term livelihoods (such as selling of crucial assets) [19]. The ability of a particular household to respond to such events may be determined by several factors, including household composition, availability of labour and accumulated assets and social networks, all of which are related to what we call the ‘household life cycle’.

Here we assessed the timing of illness and death in relation to three main life cycle stages (Young, Middle-aged and Old) and found that household (in)ability to cope with change could often be better understood through this analytical approach [5, 12, 20]. Life cycle stage had implications for the nature of resources that the individuals in the household could access in order to adapt to events caused by adult illness and death.

The individual life stories pointed to links between the household life cycle and coping or struggling outcomes, but also to other important factors influencing coping. Having many adult household members meant more opportunities for diversification of livelihood activities and better chances of coping. Middle-aged households had adult children who could help with livelihood activities at home or send remittances. For example, we learned that even though Ntonio’s household was subjected to multiple stressors when he fell ill, its members managed to cope and eventually to enhance household livelihoods. This was to an extent because Ntonio had planned and invested in assets that could be sold in a crisis and in education and vocational training for his children, who were able to help the household with remittances later. However, these successful strategies were dependent on having resources available (such as land), and on having several adult children ready to start working in town when the crisis hit. Timing was crucial for this household: it had had time to prepare and build up financial and human resources, a combination which enabled it to cope with the effects of illness in an almost ideal way.

Comparison of Ntonio’s and Mutebi’s cases shows that similar experiences can produce different outcomes: both these men fell ill during a severe dry spell, when Mutebi was in his 30s and Ntonio in his 60s. While Mutebi struggled to cope with these crises, Ntonio coped well. Young households usually have many dependents that are too young to contribute significantly to livelihoods, so Mutebi’s was vulnerable in the event of illness. His household had to cope with both adults (himself and his spouse) in the family being ill at a time when the children were still too young to be of much help with livelihood activities. As a Young household, the timing of HIV infection in Mutebi’s household worked against him. In addition, unlike in Ntonio’s case, by not having inherited land and livestock, Mutebi had to devote time as a teenager to acquiring these resources. This meant that he made a late start in accumulating assets and had less of a buffer when illness hit at an early stage.

Kaloli’s household highlights two key aspects regarding coping: that owning assets and having adult children may not always result in ability to cope, and that timing of events in relation to household life cycle is certainly not the only predictor of how households will cope with crisis. We found that Kaloli’s ‘Old’ household experienced difficulties with hard labour and supported young grandchildren, just as Baylies [21] has also noted in cases of older households. By this stage of the household life cycle, the adult children of the Old households in our sample had often stopped sending remittances after establishing households of their own. In some cases many of the Old households had already passed on land and other assets to their children. Therefore, decisions regarding assets, relationships with adult children and the strength of a household’s social network were all crucial to coping. Kaloli’s adult children did not send remittances to help the household when the crisis hit. Instead, they drained resources from the household when they sold land, sent children needing care to the household or re-joined the household when needing care upon ill-health. The concept of ‘coping strategies’ may be misleading, as responses by individuals to changes brought about by adult illness and death sometimes result in exacerbating the situation [19]. In some circumstances, households and individuals may successfully apply conscious and strategic planning and adaptation. In other instances, however, they are unable to plan, react sub-optimally or are in various ways constrained from applying good plans in practice.

Thus studying the household life cycle can be a useful analytical approach in assessing the ability of households to respond to stresses and shocks, including AIDS-related illness and death, in rural sub-Saharan Africa but also elsewhere. Other aspects of vulnerability, such as being AIDS-affected or orphaned, disabled, widowed or divorced, male or female, and different levels of wealth and power, however also have profound effects on coping, as do of course various policies targeted at households, such as universal access to free ART [22]. The household life cycle should thus be treated as an additional analytical tool and not as a full explanatory framework. However, we believe that analysis of life cycle stage is a useful addition to the various perspectives attempting to analyse and explain why some households cope well while others struggle when affected by prolonged illness or death.

Future studies could further investigate the link between household life cycle and coping through including a larger sample of cases and looking at potential impacts of policies targeted at households with young children and elderly people. Policy-related conclusions should however be drawn with caution, as household experiences of HIV/AIDS are not homogeneous and there is no direct connection between AIDS-related events and various changes observed in households [4, 5, 7, 23].

The timing of illness and death events in relation to a household’s life cycle is a relevant factor among others in determining the household’s capacity to cope with these changes. At different stages in the life cycle, the experience of and response to illness and death of adults vary and may result in different socio-economic outcomes for the household. This is due to variation in the characteristics of the household and the nature of resources to which individuals have access over time. A household in the Middle-aged stage often has a better capacity to cope due to availability prime-age labour and accumulated social and physical assets such as social networks, land and business investments. The vulnerability of the elderly is mostly due to loss of assets and ability for labour, while young households usually have young dependents and have not yet accumulated assets.