stigma, fatigue and social breakdown: exploring the impacts of hiv/aids on patient and carer...

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Social Science & Medicine 63 (2006) 3174–3187

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Stigma, fatigue and social breakdown: Exploring the impacts ofHIV/AIDS on patient and carer well-being in the Caprivi

Region, Namibia

Felicity Thomas�

Department of Geography, University of Sheffield, Winter Street, Sheffield S10 2TN, UK

Available online 20 September 2006

Abstract

It is generally assumed that caring is a substantial burden upon households afflicted by HIV/AIDS. However, as a

‘private’ household responsibility, little is known about the experiences of either those who provide the care, or those

receiving care, despite the fact that the process may extend over several years and may have a greater impact upon the

livelihood security and well-being of the household than the actual death of the ill person. Drawing upon data collected

through solicited diaries, this paper explores how illness and the daily and long-term duties of caring amongst a sample of

households in the Caprivi Region of Namibia impacts upon the physical and psychological well-being of ill people and

their carers. While optimism and enhanced well-being were recorded during periods of illness remission, AIDS-related

illnesses invariably result in periods of sickness and dependency. This results in disempowerment and lowered self-esteem,

and decreased well-being amongst ill people. This paper argues that the increasing dependency of the ill person, widespread

pressure to maintain household integrity through ‘seeing for yourself’, i.e. being self-sufficient, or at least contributing to

reciprocal support networks, and the stigma attached to HIV/AIDS can result in considerable intra-household tension and

breakdown of key social support networks.

r 2006 Elsevier Ltd. All rights reserved.

Keywords: Namibia; HIV/AIDS; Stigma; Solicited diaries; Caring; Well-being

Introduction

In the third decade of the epidemic, approxi-mately 38 million people are thought to be livingwith HIV/AIDS, of whom 11.4 million reside insouthern Africa (UNAIDS/WHO, 2004). Despiterecent efforts to both increase HIV prevention andAIDS mitigation initiatives and to extend anti-retroviral treatment to people in low and middle-income countries, this is not yet being done on a

e front matter r 2006 Elsevier Ltd. All rights reserved

cscimed.2006.08.016

621778825.

ess: [email protected].

scale that will halt or reverse the epidemic and it isclear that the impacts of HIV/AIDS will be felt formany decades to come. A growing literaturedemonstrates that people in areas of sub-SaharanAfrica hard-hit by HIV/AIDS have experiencederosion of capital assets through loss of labour ofboth the ill person and their carer, and throughtreatment and funeral expenses (Barnett & Blaikie,1992; Bond, 1999; Rugalema, 1999). However, as a‘private’ household responsibility (Baylies, 2002,Seeley et al., 1993), little is known about theexperiences and perceptions of either those whoprovide the care, or those receiving care, despite the

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dx.doi.org/10.1016/j.socscimed.2006.08.016

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1The first person to publicly admit their HIV positive status in

the Caprivi Region did so as recently as December 2003.

F. Thomas / Social Science & Medicine 63 (2006) 3174–3187 3175

process often extending over several years andhaving a greater impact upon the livelihood securityand well-being of the household than the actualdeath of the ill person. Drawing upon researchundertaken in the Caprivi Region of Namibia, thispaper provides an insight into the experiences andwell-being of an illustrative sample of individualsand households confronted with long-term andstigmatised illness.

A subjective approach to understanding experi-ences and well-being recognises that social relationsare lived and experienced through emotions(Anderson & Smith, 2001; Bennett, 2004; Laurier& Parr, 2000; Widdowfield, 2000), and reiterateSen’s (1999, p. 74) argument that well-being islargely determined by a person’s capability to‘choose a life one has reason to value’. Rather thanconsider only income and material needs and thesocial relationships that are required to cope withthe burdens of illness, it is therefore also importantto consider the psychological state and subjectiveperceptions of people themselves (White & Pettit,2004). Such an approach recasts ‘subjects of researchas persons rather than as patients’ (Kearns, 1995, p.252) enabling recognition of the often overlookedfact that a person with HIV/AIDS is still a personwith livelihood and family responsibilities andassociated emotions (Seeley & Pringle, 2001). Whilethe term ‘patient’ is used in this paper, it is used inthe context of these definitions. Ill-health and ill-being may therefore encompass not only the physicalimpacts of the ‘disease’, but a range of additionalfactors including exclusion, insecurity, powerless-ness, self-respect and personal beliefs (Dean, 2003).

Interlinked with such feelings and of particularrelevance in this paper is the impact of HIV/AIDS-related stigma. Drawing on deep-rooted fears andanxieties (Aggleton & Parker, 2002), stigma isdefined by Goffman (1964, p. 3) as a ‘process ofdevaluation’, in which certain attributes are definedby others as discreditable or unworthy, resulting inthe person stigmatised becoming ‘discounted’ or‘tainted’. Stigma may involve actions such as gossip,verbal abuse and distancing from the person withHIV/AIDS, can range from subtle actions toextreme degradation, rejection and abandonment(Bond, Chase, & Aggleton, 2002) and can changeover time (Alonzo & Reynolds, 1995). While oftendynamic and multi-dimensional, three broad typesof HIV/AIDS-related stigma have been identified:(i) self stigma, manifested in self blame and self-deprecation; (ii) perceived stigma, regarding the fear

people have around being stigmatised if theydisclose their HIV positive status; (iii) enactedstigma, when people are actually discriminatedagainst due to their (actual or perceived) HIV status(Bond et al., 2002). While all three types of stigmawere evident in the study sites1 and openly discussedduring interviews and focus groups used in thewider study on HIV/AIDS impact, solicited diariesdiscussed in this paper focus mainly upon the stigmathat ill people perceived was being directed againstthem and incidents of enacted stigma from withinand beyond the household. This stigma was causedboth by the tendency (within social and institutionalcontexts) to openly equate HIV/AIDS with immoralbehaviour and by the terminal nature of theinfection. However, in the study sites, stigma wasalso caused and exacerbated by prevailing attitudestowards dependence and reciprocity, with feelingsof being tainted or discounted by others tending toincrease at times when patients were too sick to beable to contribute to livelihood and familialactivities. As Bond et al. (2002) make clear, it isimportant to contextualise this stigma and recognisethat the fatigue and burden of care challenges thehousehold’s ability to provide treatment and sup-port. That this burden often frustrates the bestintentions of care and compassion should be bornein mind when interpreting the diary entries reportedhere.

Using solicited diaries in sensitive and stigmatised

research

This research was conducted in the CapriviRegion, located in the far north-east of Namibia.Subsistence cultivation and livestock husbandryplay a central role in livelihoods, although mosthouseholds in the Caprivi are involved in a diversearray of activities to meet food and cash require-ments. While strategically important for trade andtransport, and a focal point of population move-ment across the southern African region, theCaprivi is one of the least developed regions inNamibia (Mendelsohn, Jarvis, Roberts, & Robert-son, 2002). This is due largely to decreasing lifeexpectancy as a result of the region’s poor healthprofile, caused and exacerbated by HIV prevalencerates of 43% (MOHSS, 2004).

ARTICLE IN PRESSF. Thomas / Social Science & Medicine 63 (2006) 3174–31873176

Research focusing upon the impacts of HIV/AIDS on physical and psychological well-being isusually (and understandably) confined to those whoare aware of, and able to discuss their HIV status.Much of this research has been conducted in‘developed’ countries, or amongst users of HIV/AIDS support groups (cf. Friedland, Renwick, &McColl, 1996; Wilton, 1999) and focus has beenplaced upon the process of diagnosis, and thesubsequent experience of ‘living with HIV/AIDS’.Despite such high HIV prevalence, the acute stigmaassociated with HIV/AIDS and the fact that fewpeople actually know their HIV status, meant thatopen discussion of HIV/AIDS in the CapriviRegion was only possible in a generalised, non-personal context such as focus groups. While thewider research study on HIV/AIDS impact adopteda multi-methods approach involving a livelihoodssurvey, repeat interviews, focus groups and partici-patory methods, it quickly became apparent thathouseholds in which a person was currently ill wereunder-represented in the study. One particularlysuccessful method in ensuring that the study gavevoice to such households was the use of soliciteddiaries, and these findings form the main focus ofthis paper.

The use of solicited diaries as a research tool hasreceived scant attention within the social sciences.However, in line with Milligan, Bingley, and Gatrell(2005) and Meth (2003), it is demonstrated here thatsuch techniques offer valuable insight into the oftenhidden aspects of people’s daily lives, and canfacilitate collection of contextual in-depth data onsensitive and stigmatised issues. In this research, itwas necessary to work with home based care(HBC) groups2 to identify households in which aperson was currently ill, and to approach potentialdiary keepers. In each case, the HBC worker wasalready well known to the household, and wasalready visiting them to provide assistance. Whilethe age and symptoms of ill people keeping diarieswere consistent with recognised understandings of

2Overburdened health services in Namibia have been exacer-

bated by HIV/AIDS, with 50–70% of hospital admissions now

thought to be AIDS-related (National Planning Commission,

2004). Combined with a lack of resources enabling many

households to access care elsewhere, this has resulted in the duty

of caring falling at household level. In response, HBC groups

have been established by NGOs and local health providers. Such

groups visit households affected by illness to provide respite care,

social and often spiritual support and occasionally medicines and

food.

HIV/AIDS, stigma, low HIV testing levels andrecourse to alternative illness narratives such aswitchcraft, meant that in no case was this specifi-cally stated as the cause of illness. Under suchcircumstances, it was not possible to explore how‘living with HIV/AIDS’ specifically affected theexperiences of the ill person or their carer. It washowever, clear from the diaries that ill people feltthat others perceived that AIDS was the cause oftheir ill health, thus HIV/AIDS became the domi-nant discourse shaping the experience of illness,influencing social relationships and the treatment,care and well-being of the sick person. At the timeof the research, 12 people with AIDS-relatedsymptoms were receiving support from HBC work-ers in the study sites. All were approached to keepdiaries, and although it was made clear that theirparticipation was voluntary, all agreed to partici-pate. However, three died before the diaries wereinitiated, one returned to her husband’s village in adifferent area and one was prohibited from parti-cipating by his employer with whom he lived. It isrecognised that different social groups may experi-ence illness in different ways (Bharat & Aggleton,1999; Rugalema, 1999). However, with one excep-tion, all of the ‘patients’ keeping diaries in thisresearch were women living in female-headedhouseholds. This is likely to have been influencedby the fact that households were identified throughHBC workers. The gendered nature of caring in theCaprivi means that it is common for women toreturn to their own relatives for care, often theirmothers who, if widowed, were likely to bedisadvantaged in labour and resource assets andtherefore, more reliant upon assistance provided byHBC workers. While the sample presented hereprecludes analysis of difference in the experiences ofdiverse social and economic groups, the fact theywere dependent upon HBC workers suggests thatthey were less able to provide for the ill person thanasset sufficient households, and it is quite likely thatthis situation will have influenced the experiencesrecorded in the diaries.

Diaries were kept by seven ill people and by theirmain carer for periods of 1–6 months. HBC workersmade regular visits (usually several times a week) tohouseholds to provide assistance and to monitor thediary process. The act of diary keeping inherentlyraises issues of literacy. While literacy is widespreadamongst younger generations in the Caprivi Region(86% amongst 15–40 year olds), it reaches only 21%amongst women over the age of 50 (National

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Planning Commission, 2003), who, in this researchwere the main providers of care. To ensure thatilliterate people were not excluded, it was necessaryin some cases for HBC workers to record diaryentries on their behalf. This was the case for fourcarers and one patient and was discussed and agreedby each person before the diaries were started. Insuch cases, the diary entries were based on retro-spective recall over a period of between 1 and 4days.3 This clearly raises issues regarding the privateand personal nature of diary keeping and themanner in which the information was reinterpretedand represented by the HBC worker. In order toavoid misrepresentation, my translator and I visitedeach household whenever possible4 to discuss,clarify and contextualise diary entries and ensurethat diary entries recorded by HBC workers wereauthenticated by respondents. Coding and analysisof the diaries was undertaken whilst in the fieldenabling rigorous cross checking of information andidentification of themes common across the diarykeepers. Diary extracts presented here were selectedbecause they articulately represent these commonlyheld views. Diaries were recorded in the preferredlanguage of each recorder, and those not written inEnglish were translated by my interpreter who wasliterate in all six of the main languages used in theCaprivi.

It is important to recognise that diaries solicitedspecifically for research purposes are not privatedocuments. Rather, ‘they are written with aparticular reader and their agenda in mind’ (Elliott,1997, p. 9), a factor which may potentially bias theinformation recorded. While diary keepers weregiven a brief ‘guide’ regarding the type of informa-tion I was particularly interested in, namely theirexperiences, both positive and negative, of caringand illness, it was made clear that they were free towrite what they wished. Diary entries varied, withsome people writing on most days, enabling thedynamic caring and illness ‘process’ to be followedover time as it was experienced, while othersprovided a more retrospective account of some oftheir most memorable experiences. One advantageof the diaries was that they enabled the informant to

3In one household, the carer left the village for several weeks—

no information was recorded in her diary during this time.4When possible, diary keepers were visited every 2–3 weeks.

However, flooding meant that three households located in

particularly remote villages were visited monthly. The HBC

workers were able to continue visiting during this time because

they were living in the same, or a nearby village.

set their own agenda and reveal information as theywished, although it is recognised that informationcould also be concealed. Rather than taking upsignificant chunks of their time as would have beenthe case with interviews, informants were able towrite as little or as much as they liked at times thatsuited them. This was deemed an importantconsideration when these households already facedserious pressures upon their time and resources. Inorder to recompense those involved, people keepingdiaries and the HBC workers ‘supervising’ theprocess were each paid N$100 (approximately £10)once the diaries had been collected. This wasregarded as a small but significant sum of money,equating to the cost of a 25 kg bag of maize meal.Given that diary keepers were asked to write aboutboth the positive and negative experiences of illnessand caring, it is unlikely that the payment wouldhave had any significant influence upon the in-formation recorded, although it is possible that itmay have influenced the decision to participate byfamilies experiencing financial stress.

The remission–recurrence cycle that characterisesmany AIDS-related illnesses meant that the healthof those keeping diaries was variable. While somedid not write during times when they felt ill, othersreported that they found the process therapeutic,and that it relieved boredom and loneliness,particularly when other household members wereabsent. Several also commented that it was easier toexpress their feelings in writing than verbally. Afurther advantage of the diaries was that ‘super-vision’ from HBC workers meant the householdreceived regular visits and assistance, and HBCworkers reported that they were more aware of theneeds of the household. Overall, the diariesappeared to be an appropriate and non-intrusivemethod of collecting sensitive information fromotherwise hard-to-reach households. As Methand Malaza (2003) point out however, diarykeeping usually takes place in a private sphere,out of sight of the researcher, an issue that raisesconsiderable debate in ethical terms. Attempts weremade to ensure that diary keeping did not causedifficulties within the households concerned,although it was not possible to really determinethe impact the process had on individual householdmembers, and nor was it possible to provideemotional support at the time the often distressingaccounts were being recorded. Such issues wouldneed to be considered in greater depth before thismethod was used again.


Care in the Caprivi: Contextualising the pressures of

long-term illness

A household’s ability to cope with the impacts oflong-term illness and inter-linked shocks andstresses is influenced by the availability of socialsupport provided through inter-household relation-ships. However, significant socio-cultural changesince Independence in 1990, increasing economicheterogeneity, and an upsurge in witchcraft accusa-tions were widely reported within this research tohave resulted in a breakdown of familial supportnetworks in the Caprivi Region. It was frequentlystated that the welfare of the household was nowconsidered a household responsibility, and thathousehold members were expected to ‘see forthemselves’ (be self-sufficient), before contemplatingassistance from relatives or friends. While socialpressures to ‘see for yourself’ are paramount,transfers within and between households continueto form a vital support network. Such transfers arehowever, rarely undertaken if they are not part of areciprocal, although often unspoken arrangement,described by Van der Geest (2002, p. 28) as the‘silent book keeping of give-and-take’. Being caredfor is not then an automatic right, but a statusrequiring considerable investment. The long-termnature of HIV/AIDS therefore challenges thecapability of the ill person both to reciprocate,and to actively contribute to the household, thuscompromising their identity and role within thehousehold and the level of care provided to them.

The remission–recurrence cycle that characterisesmany of the opportunistic infections associated withHIV/AIDS means the intensity of caring dutiesvaries over time. During periods of remission, it isnot uncommon for the ill person and their carer toreturn to livelihood activities. However, as theimmune-system is weakened and the person be-comes increasingly ill, periods of remission becomeshorter, and eventually result in the patient becom-ing bed-ridden and dependent upon others for care.Because the ability of a household to access andmobilise assets is largely dependent upon the labouravailable to the household, the impact of illnessupon a household’s livelihood portfolio is signifi-cantly influenced by the role usually played by thecarer and the ill person. Thus, if the ill-person hadbeen a major contributor to the household assetbase, their illness is likely to have a greater impactupon household livelihood security than if they werenot, unless labour can be substituted or the activity

adapted or diversified by other household members.Already labour-constrained households were there-fore more adversely affected than households withsufficient labour, or transferable assets that could beused to pay for labour. The amount of time spentcaring was influenced by the severity of the illness.However, as will be discussed, the necessity tocontinue with livelihood activities, and stigma andcarer fatigue were also key factors.

As reported elsewhere in sub-Saharan Africa (cf.Radstake, 2000; Taylor, Seeley, & Kajura, 1996),caring in the Caprivi is the duty of women. Caringduties involve preparing food and medicines, bath-ing the patient, cleaning sores, carrying immobilepatients to the ‘toilet’ or to sit in the sun or shade,and washing soiled clothes and sheets. Suchactivities not only demand considerable physicaleffort, they require substantial periods of time awayfrom livelihood and social activities that take placeoutside the courtyard. The unpredictable nature ofthe episodes of illness and remission meant that itwas often difficult for households to plan theirlivelihood activities, leading to periods of uncer-tainty and insecurity. However, the necessity toensure that at least the immediate food require-ments of the household were met emerged asparticularly influential in determining how liveli-hood and caring duties were prioritised.

Compromising caring and food security

In a situation in which it is deemed unacceptableto expect assistance from outside the household, it isnot possible for illness-afflicted households to relyupon others to ensure the household is foodsufficient. Instead, it is necessary to continue withlivelihood activities in order to ensure at least somelevel of household food security is met. Because themajority of the agricultural workload is consideredthe responsibility of women, caring duties become aparticular burden at times of the year whenagricultural activities are intense. Diaries were keptbetween December and May, a period encompass-ing some of the most intense annual agriculturalactivities. In all cases, the carer continued tocultivate their crops whenever possible. However,in all diary keeping households, it was reported thatthe need to undertake caring duties meant that timewas diverted away from agricultural activities,reducing the area cultivated and threatening foodsecurity. As the following diary extract demon-strates, the decrease in crops cultivated could also


result in intra-household tensions and, through lackof money for school fees, could adversely impact onother household members, causing potential harmto future household livelihood security.

The carer spent all day caring and is worried thatshe is too tired and hasn’t been able to rest. Thecarer is angry with her daughter [the patient]because she didn’t take her advice on how to liveand now she is even suffering from hungerbecause she doesn’t have enough time to workin her fields. She has been unable to pay schoolfees for the other children because due to caringthey didn’t manage to sell any crops. (Maureen,diary extract December 27th, 2003—recorded byHBC worker).

Amongst those keeping diaries, this situation wasexacerbated by poor harvests received in the 3 yearsprior to the research, through drought, floodingand/or caring activities. Few had harvested enoughto cover household needs, and most had alreadysold assets or been forced to undertake piece workin order to meet their basic needs. While somehouseholds with sufficient labour and/or assets haveflexibility to adapt their livelihood strategies to‘cope’ with the burden of care with few adverselong-term livelihood impacts, labour and asset-constrained households face considerable pressuresto continue with key livelihood activities to main-tain even a basic level of household food security.Under such circumstances, there were times whenthe carer was forced to prioritise immediate house-hold requirements over those of caring, particularlyif without assets, the household was unable togenerate cash to pay agricultural labourers or topurchase food. The difficulties facing the householdtherefore have significant repercussions for the well-being of the patient since the carer has far less timeand resources to spend ensuring that even the basicneeds of the patient are met.

Physical and psychological impacts of caring

As well as pressures to maintain food security, thephysical and psychological pressures of care play asignificant role in determining how HIV/AIDSimpacts upon individual and household well-being.In their study in southern Malawi, Chimwanza andWatkins (2004) report that most carers did notconsider care-giving a problem because the patientswere close relatives. This view was supported ininitial interviews in the Caprivi, and there was clear

evidence that carers attempted to provide the bestpossible care under the circumstances. However,more in-depth interviews and the informationrecorded in the diaries revealed that over time,caring was seen as a burden which could impactdetrimentally not only upon the household assetbase but on intra-household relations, leading to ill-feeling and tensions, particularly between carer andpatient. A key cause of tensions was the frequentmood changes of the patient and carer, basedprimarily upon the health status of the patient, withdays of improved health reflected in optimism andincreased psychological well-being and days ofworsening health and recognition of the patient’svulnerable and dependent condition reflected intensions, sadness, frustration and anger between thepatient and carer.

During times in which the patient was feelingwell, able to eat, or undertake livelihood activities,carers recorded relief that the patient may recover,and optimism for the future. However, carerssuffered from the physical strain of caring, as wellas the emotional consequences of their inability toprovide adequately for their patient, and the failureof improvement in the patient’s health. One of themost frequently reported impacts of caring was itseffect upon the physical well-being of the carer witha number of them explaining that they were unableto eat, or ate only small amounts at times when thepatient was seriously ill and themself unable to eat.This was partly due to the time expended on caring,and in cases of labour or asset shortage, the lack offood availability. As Doris explains however, it isalso a result of a psychological need to provideemotional and moral support to the patient.

I don’t feel well when my daughter is sick. I don’tenjoy eating because I am feeling sorrow. It isonly when she gets better that I can even eatnormally. Even the children feel the way I’mfeeling now and don’t eat normally and don’t dotheir activities well because of this. (Doris, diaryextract May 17th, 2004).

Whilst carers felt able to eat at times when thepatient was well enough to participate, their foodconsumption reportedly reduced for several monthsin the final stages of the illness. This is an issue ofparticular concern in AIDS cases in which oppor-tunistic infections and stress can prevent the illperson from obtaining adequate nutrition (Haddad& Gillespie, 2001), and has significant implicationsfor carers’ physical well-being when illness is


sustained over long-periods. During a communitymeeting, it was claimed that failure of a woman toreduce consumption during caring may be inter-preted by others as displaying a lack of care andrespect for the ill person, implying that the well-being of the carer and their ability to undertakelivelihood activities is adversely compromised bysocio-cultural expectation.

As prime carers, several women expressed angerthat they were putting themselves at high risk ofHIV infection in cases in which HIV/AIDS wasknown or suspected. This is possible in situations inwhich carers do not have the knowledge orresources to take necessary precautions, or wherethe stress of long-term care has led to carer’slowering their guard against infection. While thiswas not known to have occurred in the study sites, itwas reported during focus groups that such percep-tions could result in the carer and other householdmembers distancing themselves from the ill person,leaving the patient increasingly isolated from theirclosest social support networks.

Tensions arose when the carer was unable toprovide for a patient as they would wish. Withhigher than normal nutritional requirements (Had-dad & Gillespie, 2001), a key cause of tension withinhouseholds was the pressure to provide the ‘special’foods that were craved by the ill person. Because ofthe relative inaccessibility and expense of thesegoods, considerable effort was required by house-holds to provide them. However, AIDS-relatedinfections can cause loss of appetite and difficultieswith eating, thus it was not uncommon for patientsto refuse special foods once they had beenpurchased. This again was a cause of considerablefriction within households, particularly when valu-able time and resources had been spent procuringthese goods. In households which could not affordto provide the foods requested Margaret’s commentstresses how carers can become both frustrated andupset that they could not help the patient.

Sometimes she [daughter] is in a bad conditionand she chooses food that her heart needs. Butmyself I am poor and I cannot give her what shewants, and sometimes she spends the whole daywithout eating because I cannot afford what shewants to eat. (Margaret, diary extract February26th, 2004)

At other times, when the household was underextreme pressure to undertake livelihood activitiesmerely to subsist, and the demands of caring were

overbearing, requests for special foods resulted incarers becoming angry and even neglecting thepatient. The following extract was recorded by aHBC worker on behalf of a carer.

The patient is complaining that his carer talkstoo much [complains] and he says that she is nottaking proper care of him. The carer has gone toNgoma to drink beer. She is angry with Stephenbecause he keeps asking for food which theycannot afford to buy. (Stephen, diary extractJanuary 6th, 2004)

Caring which generates hope and support for anill person can impact positively upon the well-beingof the patient, providing them with a sense ofself-worth, dignity and belonging (Skevington &O’Connell, 2003; Friedland et al., 1996). During theearly stages of illness, it was not uncommon forseveral household members to provide assistance tothe main carer, and for people outside the house-hold to visit and occasionally help, providing goodssuch as food and sodas for the patient. Such actionsnot only assist the carer, but also demonstrate activeinclusion of the ill person into the household andcommunity. The long-term nature of HIV/AIDSand the importance attributed simultaneously toindependence and reciprocity however, not onlychallenge the assumption of support from outsidethe household, but also support from within thehousehold. Diaries demonstrated that while supportwas available in the early stages of illness, if thepatient failed to get better, help tended to becomesteadily less forthcoming, leaving the main carer tocope with daily caring duties with little assistance atthe same time as household resources were depletedthrough treatment expenses and time spent awayfrom livelihood activities. This resulted in the carerbecoming lonely and isolated as they were less ableto invest in social capital networks and in cases suchas that described by Doris were adversely impactedby the stigma directed toward the ill person.

No one has helped me care for my daughter. Ifeel discouraged by everyone in the community.Only sometimes the church members will come—I think they think this disease will contaminatethem. When my daughter is sick it means Icannot even go out to the shebeen [bar]. (Doris,diary extract February 10th, 2004)

It was also revealed that livelihood and caringburdens may result in a range of emotions includingirritability, loss of sensitivity, and withdrawal from


the person requiring care. Because caring takesplace within the private sphere of the home, carersbecame isolated with their concerns without accessto help. That talking about their emotions withothers, even within the household, was deemedunusual and even futile amongst those interviewed,further adds to the strains and isolation of caring.

HIV/AIDS-related stigma

Few people in the Caprivi are aware of their HIVstatus and those who are were reported to choosesecrecy as a coping strategy if disclosure wasconsidered to increase the stigma brought uponthe household or was perceived as a threat toreceiving care. However, while illness is oftenpublicly represented as being caused by witchcraft,others may know or suspect HIV/AIDS. While thedecreasing assistance provided to the main carer isdue in part to the need for people to continue withlivelihood activities, it is also due to the increasingtrajectory of stigma attached to HIV/AIDS as theperson’s illness progresses (Alonzo & Reynolds,1995) and their dependency prevents them fromcontributing to reciprocal support networks. Rela-tives and friends are crucial in providing ill peoplewith an incentive to live positively and, if their HIVstatus is known, deal with their terminal status, thusa major source of support and motivation isremoved when carers become fatigued and desensi-tised towards the ill person (Friedland et al., 1996).The following extracts emphasise that stigmaattached to HIV/AIDS can directly influence thewell-being of the patient and carer.

I stayed in another house when I was first sick in2003. Those people I used to stay with [relatives]never cared about me because I had a longsickness and they would talk a lot and say that Ihad STDs and AIDS because I wasn’t settled[staying in the village]. Then I went to mygrandmother when I got very sick. My life feltso short. (Miriam, diary extract April 16th, 2004)

It was so hard for a man like me to take care of awoman, but I never thought like that, I just knewthat if I did not take care of my mum she coulddie and I would be alone. Some family memberscame to visit, but when we went outside theystarted saying that I was just wasting my time intaking care of her. When I asked them why theysaid she is affected with HIV/AIDS. I could tell

that they were lying but I started crying. (Henry,diary undated 2004)

Miriam states that she did not receive adequatecare from her relatives in town because of her longillness, and implies that her relatives would shameher, saying that through her immoral behaviour shehad brought AIDS and STDs upon herself. Henry’scomment emphasises how the support networksavailable to the carer may become less forthcomingif HIV/AIDS is known or suspected since caring isconsidered a ‘waste of time’ when the patient willnot recover (Ntozi, 1997; Seeley et al., 1993). Suchfeelings can result in accusations and anger directedagainst the patient and a subsequent breakdown inthe provision of care.

The carer [the mother] is not caring today as shesays that Patricia is just pretending to be sickbecause others who have got ill since her havealready recovered. She says that the reason shepretends to be sick is because she is lazy and doesnot want to work in her fields. The mother thenwent to her fields to do her work, leaving Patriciaalone. (Patricia, diary extract February 19th,2004—recorded by HBC worker)

The relationship between myself and my son [thecarer] is not good because I refused to give himpermission to visit his friends. Since then he isangry with me and my relatives left me withoutwater. I don’t know why, but when they arehappy they normally stay with me, and some-times they just go to their fields and say whydon’t I just get better. (Caroline, diary extractJanuary 8th, 2004)

Patricia’s case emphasises how the fatigue ofcaring duties over the past 3 years have resulted inher mother accusing her of being ‘lazy’, despite herobvious ill-health preventing her from undertakingwork. This demonstrates how a legitimate ‘sick role’may be denied to people with HIV/AIDS as itsunpredictable nature fails to meet accepted under-standings of illness (Finerman & Bennett, 1995;Weitz, 1989) resulting in discrediting of, andfrustration and hostility towards the ill person. Inthis case, frustration is exacerbated by the fact thatother people who have become ill during this timeappear to have recovered. The ambiguous statusaccorded to the patient is also evident in Caroline’scomment, stressing the fluctuating emotions of thecarer and demonstrating how carer fatigue can


result in even basic care such as water being deniedto patients at times of household tension.

Patient well-being

Concern about their physical health was para-mount amongst ill people keeping diaries. However,with the exception of basic medicines purchasedfrom local shops or provided by HBC workers, it isnecessary to seek treatment from further afield,through the clinic, hospital or traditional healers.Considerable time and resources must therefore beexpended to secure treatment. While research in‘developed’ countries has found that people are ableto negotiate and choose how they use medication(cf. Wilton, 1999), such restrictions limit thepossibilities for ill people to reach treatment withoutassistance from family or friends. Diaries revealedthat household diagnosis and an inability to providenecessary resources meant that it was not unusualfor ill people to suffer extreme pain and debilitatingsymptoms both before and between treatment, andthat it was not uncommon for patients to go tohospital only once critically ill. Patricia’s diaryemphasises the pain endured by patients unable togain access to treatment. At this point, Patricia hadbeen periodically ill for 3 years with HIV/AIDS-related symptoms, been diagnosed with TB andprescribed a six month course of medication.However, because her condition had failed toimprove, and her relatives suspected witchcraft(requiring ‘traditional’ medicine), they were un-willing to spend further resources to take her backto the hospital.

March 3rd 2004

Today I’m a little bit better but I’m not feelingwell in my head and I have fever and swollen feet.If I was the one who could make decisions, Iwould get people to find me medicines so that Ican get treated and get better and start caringand living with my family again.

March 4th 2004

No-one helped me and I’m suffering from mybody, feet and chest and also a headache. I wish Icould get money easily which can take me to thehospital or admit me to the hospital until mytreatment gets finished. Like this I won’t be curedquickly because although sometimes when I have

money I can go to the hospital, when I don’t Ican’t go.

March 5th 2004

My eyes are swollen and dirty and painful likethere is soil in them. My head is paining as if it isthe lightning from the rain, and my face feels likeit will fall down with fever. I’m worried that Ihave been sick without taking my medicinesbecause I don’t have anything and my parents arenot here. My father passed away, so when mymother is not here I get things with difficultiesand no-one helps me.

March 12th 2004

My opinion is that if it had been possible I couldhave stayed at the hospital until I got better, orthat those who are caring for me come back fromtheir fields. The family thinks that if it had beenup to them I wouldn’t have got sick becausebefore I was living well and everything that Iwanted I got easily because I was getting money.But now there is not money even to start abusiness. No-one helped me because they are stillin their fields.

March 13th 2004

Today I’m feeling very painful toothache. Ithurts like it wants to come out. I’m also feelingmy shoulder as if something is moving in myspinal cord. My eye muscles feel as if they havebeen stabbed by a thorn. I’m worried that I don’thave money to pay for the hospital and I don’thave anyone who can take me there. Source:

Patricia’s diary, 2004

As well as enduring continual pain, the diarydemonstrates that although Patricia has beenprescribed with TB treatment, she is unable to gainaccess to, and complete her course of medication,prolonging and exacerbating her illness and riskingresistance to the treatment.

In cases, the health status of the sick person hadbegun to dominate their identity, a situationexacerbated by stigma and increasing isolation.With one exception, all patients recorded themanner in which their appearance had changed,and the upsetting impact this had upon themselvesand others, particularly children. Several peoplesuffered discriminatory comments regarding theirappearance, resulting in a desire to withdraw


socially and isolate themselves. It was also reportedthat in cases, such stigma prevents householdsaccessing HBC assistance, a situation which becameparticularly evident when the patient had becomeseriously ill and the household did not want otherpeople to see their condition. This not only preventsthe carer from receiving assistance, but meansassistance is denied to the patient.

Fulfilling social roles

In a situation in which motherhood is accordedsignificant status and value (Nashandi, 2002), theinability of women to fulfil their role as mothers andensure the immediate and future well-being of theirchildren emerged as a key concern. Five of the sevendiary keepers had dependent children living withinthe household, several of whom were also ill withAIDS-related symptoms. During periods of illness,women expressed concerns regarding the health andcare that their children were receiving, and theirinability to provide adequately for them whilst theywere ill. The comments recorded by Patricia weretypical of diary keepers with young children.

March 1st 2004

Last night I fell down until Janet [12 year oldsister] picked me up because I was feelingdizziness and cold in my bones...I am veryworried about my child. He is sick and no-oneis taking care of him, or can take him to thehospital because there is no-one here to help.

March 2nd 2004

Today I suffered a lot because my whole body isfeeling pain. In this time my child is lying herefeeling pain, and I am lying here without beingable to help him. My thoughts today are notgood because of my children who are very thinand there are no carers and no help because mymother who normally cares for us is away in herfields.

March 19th 2004

I’m worried about my children because since Igot sick they are not receiving good care and theydon’t eat or wear clothes the way I want y.no-one is caring for them now while I am alive, so Iam worried that if I die they will end up asbeggars. Source: Patricia’s diary 2004

It was also common for women to worry over thefuture well-being of their children, particularly as nodiary keepers had husbands to assume care forchildren in event of their death. Miriam describedher frustration on hearing that her sister, uponwhom she was depending for the future support ofher child, drops out of school.

I was very angry when I heard that my youngsister had left school. I felt pain because I didn’twant these things to happen. My grandmother isgetting older and she cannot afford thingsanymore. It would be better if my sister was[still] in school, so that she could help mydaughter in years to come. I wish I had finishedmy secondary education and hadn’t had a babywithout a father. (Miriam, diary extract May 8th,2004)

School policy in Namibia dictates that childrenare not allowed to miss school to care for illrelatives. However, while not as severe in the studysites as reported elsewhere in Africa (cf. Robson,2000; Rugalema, 1999), diaries reported that chil-dren did take time out of school to care. Severalhouseholds reported that their children had per-formed badly or failed exams due to the emotionalturmoil experienced when a household membersuffered long-term illness, thus seriously jeopardis-ing future livelihood prospects.

Fulfilling livelihood roles

People usually live with HIV/AIDS for a numberof years, with significant periods of remission duringwhich both the carer and ill person continue withlivelihood activities. The necessity to maintain alivelihood and ‘see for yourself’ was stressed byCarina, since she cannot expect, or afford to payanyone else to undertake activities for her.

I feel that maybe I can do some work todaybecause no-one else can work for me. I have tosee for myself and do my own work. A personwho eats cannot just sit, she has to work veryhard. (Carina, diary extract March 14th, 2004)

Four of those keeping diaries had been ill for lessthan a year, and were to an extent able to continuewith livelihood activities during periods of remis-sion. At such times, well being was significantlyraised as Clare explains.


Today I lived very well because I prepared foodfor myself. I woke up well and went to collectfirewood, wash dishes and do some things forlife. I’m singing some church songs so that I mayforget some of the things that disturb mey..I amvery happy. I did not know I would reach [liveuntil] this time. (Clare, diary extract March 5th,2004)

The psychological well-being of patients wasclearly influenced by the manner in which they wereviewed by others. While they could feel neglectedand isolated during times of dependency, theirability to contribute to the household brought anincreased sense of well-being and optimism anddecreased the level of stigma they perceived fromothers, enabling them to regain a level of self-control and reassert their role within the household.Miriam explains how she feels her ability toparticipate and contribute to household activitieshas increased her social acceptance amongst others.

I was dancing and I was happy as no-one wasangry with me and my friends were happy like Iwas. After sweeping I told my friends I was readyto cook. They were happy to hear this becausethey never expected that I could cooky.I wasfine, there were no problems, and they wereinterested to be with me for long hours. (Miriam,diary extract May 19th, 2004)

Rather than being angry and frustrated with heras she felt people were while she was ill anddependent, Miriam comments that her friends arenow willing to spend time with her. While this is dueto her ability to contribute, it is also likely that theimprovement in her health allayed the stigmaassociated with HIV/AIDS. The optimism asso-ciated with periods of improved health also enabledpeople to consider their long-term livelihood op-tions. As Davies (1997) argues, the ability to projectlife plans to the future gives people a sense ofontological security, providing them with a beliefthat events can be influenced and controlled, andthat their thoughts and actions have meaning andpurpose, thus considerably enhancing psychologicalwell-being. Most patients also expressed theirfeelings of gratefulness to their carers and theirdesire to repay relatives for the costs expended ontreatment and care, implying that doing so wouldfacilitate their re-integration into the household.

Dependency, isolation and rejection

Despite periods of optimism, the nature of AIDS-related illness invariably results in periods ofsickness and dependency. Research has found thatdependency upon others results in disempowermentand lowered self-esteem, decreasing well-beingamongst ill people (Bharat & Aggleton, 1999; Dyck,1995). Social pressures to ‘see for yourself’ orcontribute to reciprocal support networks meansthis is particularly true in the Caprivi, and diariesrevealed that patients were intensely aware of, andworried about, the time and resource costs theirillness had upon the household. It was common forpatients to compare their current position within thehousehold to that prior to their illness. Patricia, whohad formerly run a fish selling business and beenable to contribute to the household, explains howshe feels her role has changed, and implies that shefeels she is less valued within the household sinceshe has been unable to contribute.

I worry for my young brother. When I am sick hedoes not feel well, or feel like he is in the worldbecause before I got sick I used to get things andI would give them to him. Even my mother is notseeing me the way she used to before I got ill.Now the money she gets is just spent on me forhospital and transport. (Patricia, diary extractMarch 8th, 2004)

During the course of the diaries, five patientscommented that it would have been better if theyhad died rather than continuing to burden theirrelatives with the time and expense involved in care,and two referred to times they had consideredsuicide. Such anxieties and self-blame not onlyimpact heavily upon the psychological well-being ofthe patient, they may also prevent the patientseeking treatment if they perceive that procuringmedication will further disrupt the household. InHenry’s household for example, the patient refusedto let him take her to hospital, claiming that she didnot want the household to be burdened with theadditional costs of a coffin should she die there.

The long-term nature of HIV/AIDS can result inhouseholds becoming isolated through lack of timeand resources to invest in maintaining supportnetworks, and through stigma. While isolation isexperienced by both carers and patients, bed-riddenpatients are dependent upon others to visit them,while carers can choose to continue with livelihood


and social activities. As Van der Geest (2002, p. 16)states,

Becoming dependent is a vicious circle. Thosewho don’t go out gradually lose their socialimportance and become less and less interestingto visit. Being cut off from the informationnetwork that spreads through the community,they experience a gradual process of social deathbefore they die in the physical sense.

The daily isolation and loneliness of patients wasclearly evident in the diaries. One patient was leftalone in the village for 7 weeks with only her youngsiblings to help her and her sick infant children,while her mother worked away. The diary reportedthat the mother returned only once during thisperiod to check-up on her, despite the fact she wasin extreme pain for much of this time. Isolation isalso exacerbated by the layout of many settlementsin the Caprivi, with accusations of witchcraft andsubsequent family conflict resulting in wide dis-persal of households. Rather than forming part of abusy and populous settlement, in which it is easy forpeople to drop in on a casual basis therefore,considerable effort may need to be expended toreach them.

Religion played an extremely important role forall patients, providing solace at times when peoplefelt isolated from friends and relatives. However,interviews with church leaders in the region revealeda tendency to interpret illness as a punishment forimmoral behaviour. Such beliefs inevitably impactupon the well-being of ill people, who may findthemselves being judged by others for suspectedwrong-doing or questioning their own behaviour inan attempt to understand their illness. Paradoxi-cally, while this acceptance of self-blame canperpetuate the suffering of the ill person, it alsoprovides a form of relief and optimism. Byaccepting they have done wrong, patients are ableto actively attempt to rectify the situation throughprayer, thus giving them hope that they will beforgiven and will recover. The following extractfrom Clare’s diary demonstrates how such beliefscan promote an optimistic attitude that the illness ismanageable.

Today I’m sick I don’t know what I must do. Ifeel lonely because of staying alone. But God asmy witness, I know he is with me in all my deeds.So I will be better I know. I am so tired I can’teven walk for a long distance. I will be praying to

God so that I can get everything in an easy way.(Clare, diary extract March 10th, 2004)

While statements made during focus groups andby religious leaders asserted that people wouldcontinue to visit a person known, or suspected tohave AIDS-related illness, patients explained thatfew people, including close relatives, had visitedthem whilst ill. None however, were willing toconfront them over this issue, claiming that it wasnot their place to tell others what to do. Because ofthe pressures to ‘see for yourself’, it may also be thecase that demonstrating a need for help from othersis considered shameful.

Re-establishment of social networks

Household tensions arise due to the pressures andfatigue of long-term and stigmatised illness, frag-menting the support networks of the ill person andleaving them increasingly isolated as the illnessprogresses and their dependency increases. How-ever, the stigma and tensions projected onto the illperson did not appear to be on-going following theirdeath. Instead, the frustrations and ill-feeling thatcharacterised the more difficult periods of the caringprocess were replaced with fond and affectionatememories of the deceased. With the possibleexception of ill children, this research suggests thatorphans play a key role not only in continuing thefamily line, but in restoring reciprocal supportnetworks. Case study households in which orphanshad been taken in explained that the orphansprovided them with an emotional connection tothe person who had died, thus helping cope withtheir loss. While their care imposed considerableeconomic burdens, the possibility of gaining accessto maintenance or foster grants provided animportant incentive to taking in orphans. The roleof orphans in contributing to reciprocal supportnetworks also emerged as a key factor in their‘adoption’.

There are many benefits you can get from thosechildren because they belong to your ownchildren, your son’s children. So they are likeyour own children and when they grow up theycan get a job and can help to feed you and helpyou with things like ploughing. (Local chief,focus group, Sangwali)

Taking in of orphans is therefore considered ameans to increase the labour and potential asset


base available to the household, even if only in thefuture. While stigma and social fragmentationpervade much of the caring process, taking inorphans plays a key role in ‘closing’ the stigma andtension and facilitating the re-establishment of keysocial support networks.

Concluding remarks

An in-depth insight into intra-household experi-ences of long-term illness and caring has beendemonstrated through the use of solicited diaries.While the sample size prevents generalisation offindings to a wider population, the findings indicatethat HIV/AIDS can have considerable adverseimpacts on households in the Caprivi. Informationrecorded in the diaries demonstrates that whilecompassion and sympathy toward the ill person areevident in the early stages of illness, the long-termnature of HIV/AIDS makes caring a considerableburden upon household livelihood security andintra-household relations as the patient’s conditiondeteriorates over time. The importance placed upon‘seeing for yourself’ and contributing to reciprocalsupport networks mean that dependency uponothers whilst ill was found to be a key factorinfluencing patient treatment, identity and subse-quent well-being, a situation exacerbated by theterminal and stigmatised nature of AIDS.

A key part of HIV/AIDS mitigation lies inmeeting growing care needs and provision ofsupport for people living with HIV/AIDS. Increas-ing provision of anti-retroviral treatment across lowand middle income countries will inevitably play avital part in reducing episodes of illness and long-term care. However, stigma, gendered restrictionsand resource accessibility mean that constraints toaccess and take-up of treatment will continue(Seeley, Grellier, & Barnett, 2004). It is vitaltherefore, that locally appropriate initiatives areidentified and developed in order to decrease theburdens of care and the subsequent stigma andneglect of ill people. As has been reported elsewherein sub-Saharan Africa (cf. Chimwanza & Watkins,2004; de Guzman, 2001; Katapa, 2004), the timeand resource costs involved in taking an ill person tohospital, as well as overburdened health facilitiesand personnel (National Planning Commission,2004) mean that caring in the Caprivi is likely toremain a home-based responsibility for the foresee-able future. Provision of more sustained andeffective Home Based Care support is therefore

vital, particularly for more vulnerable householdswith only limited capital assets. Such supportshould be strengthened through the developmentof counselling services which address the psycholo-gical and emotional impacts of AIDS and encou-rage testing, disclosure and support in order todelay and help manage the onset of AIDS-relatedillness. However, as Bharat and Aggleton (1999)argue, HBC projects are often based upon thepremise that household resources are equitablydistributed when in reality they are not. WhileHBC support undoubtedly plays a role in relievingthe burdens of caring duties, it does little tochallenge culturally embedded expectations thatthe duty of care lies only with women. Localisedand participatory approaches are therefore neces-sary to promote the involvement of other householdand community members in contributing to caringduties, actions which, in turn, have significantpotential to decrease the burdens of care andalleviate subsequent intra-household tensions.

Acknowledgements

I am extremely grateful to the many people inNamibia who contributed to this research, and inparticular, those who agreed to participate in thestudy. I am especially thankful to my translator,Trendy Muluti for her commitment and supportthroughout the fieldwork. I am also grateful toSarah Curtis and two anonymous reviewers for theirhelpful comments on an earlier draft of the paper.This research was undertaken as part of a doctoralthesis with funding from the ESRC, the SlawsonAward, the Developing Areas Research Group, theDudley Stamp Foundation and the University ofSheffield.

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