Invisible carers: young people in Zimbabwe's home-based healthcare

Area (2000) 32.1, 59-69

Invisible carers: young people in Zimbabwe’s home-based healthcare

Elsbeth Robson School of Earth Sciences and Geography, Keele University, Keele, Staffordshire ST5 5BG.

Email: [email protected]

Revised manuscript received 22 October 1999.

Summary Women and young people are disproportionately burdened by the restructuring of healthcare services. Home-based healthcare provision by children in Zimbabwe is investigated through qualitative interviews with young carers and key informants. The study suggests that young people (especially girls) become carers according to varied personal and household factors in the context of the AIDS pandemic, macro-economic decline and ESAP-weakened formal health services.

Introduction

This paper outlines research investigating a minority group of children and their work as young carers in Zimbabwe. ‘Young carers‘ are children under 18 years old who are involved at home in the primary care of ill, disabled and frail elderly relatives. At present, young carers are largely invisible to researchers and policy-makers, as well as more generally. This largely unseen group of contributors to home-based healthcare is the focus for the empirical investigation in Zimbabwe. The research reported in this paper investigates their experiences within the particular contexts of structural adjustment, healthcare restructuring, the HIV-AIDS pandemic and economic decline.

The core research objective was to ask ‘what sort of young people are carers?’, ‘what is the nature of the caring work they do?’ and ‘how and why do they become carers?’. A second objective was to approach young carers as social actors and gain insight into caring as they experience it. To pursue these objectives, experiential evidence from young carers was needed. Thus a qualitative methodology was imperative, and was achieved by conducting qualitative interviews with key informants and young carers.

The findings suggest that the healthcare burdens of children in developing countries remain largely invisible, and young carers lack institutional recogni-

tion or support. As an initial investigation into their experiences, this research has useful implications for encouraging further research and better-informed policy.

Context

In the current climate of reduced government health subsidies under economic structural adjustment policies (ESAP or SAPS imposed on many developing countries in response to soaring international debts), macro-economic adjustment outcomes in Africa hit marginalized groups (women, children and the poor) most severely (Afshar and Dennis 1992; Dennis 1991; Lugalla 1995; Sparr 1994). Inequities in access to healthcare are widening, health services are decaying and health is declining (Alubo 1990; Kanji et a1 1991, 990; Korte et a1 1992; Loewenson 1993).

Inaccessible, or unavailable, state provision means low-income households increasingly depend on informal and home-based healthcare (McPake and Machray 1997; Ogden and Kyomuhendo 1996). After ESAP was introduced in Zimbabwe in 1990, the use of home treatments increased, fewer ill people could afford government health services, and attendance at healthcare facilities declined (Bassett et a1 1997; CSO 1995, 32; 1996a, 20). Yet the increasing work by informal home carers throughout the developing world remains under-researched.’ It

ISSN 0004-0894 0 Royal Geographical Society (with The Institute of British Geographers) 2000

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seems that SAPS may be increasing women’s healthcare burdens (as in Zimbabwe: see ZWRCN 1993, 9). As children in developing countries widely share any unpaid domestic work, it can be conjectured that children also contribute increasingly to home-based healthcare.

In addition to economic restructuring, as the AIDS pandemic places further strains on formal-sector healthcare resources (Barnett and Blaikie 1992), ’community’ and home-based healthcare are promoted for growing numbers of people with HIV- AIDS (PWAs) (Baylies and Bujra 1997; NACP 1993; Population Council 1994; WHO 1993). In reality, community and home-based care often means care by an unpaid, unsupported, untrained family member-usually a woman (Auer 1996; Gilks et a/ 1998, 139; Norr et a/ 1992, 250) or, as this paper suggests, a child. In the literature on HIV-AIDS in Africa and elsewhere, carers get limited mention, recognition, validation or support. This neglect is true of women carers (eg in Scotland [Wilson 19931 and the US [Campbell 1990, 4121), but even more so of children as carers. Published recognition of children as carers of PWAs is scarce, and comes from diverse contexts including Uganda (Black 1991, 10, 20) and ethnic-minority households in the US (Geballe et a/ 1995). It is not widely documented that policies of structural adjustment and home healthcare for PWAs increase children‘s burdens of paid and unpaid work.

Children and health in Zimbabwe The AIDS pandemic is severe in Zimbabwe: 2&26 per cent of the adult population (15-49 years) is estimated to be living with HIV-AIDS (UNAIDS 1998). Infection rates are the third highest in the world (UNDP 1998, 159). Barely a family remains untouched by the disease.* The pandemic has various impacts on children (Preble 1990), but attention i s focused here on how increasing HIV-AIDS illness and death may lead to more young people dropping out of school to become carers.

Under ESAP, Zimbabwe’s government spending is shrinking-expenditure on health fell by 40 per cent from 1990/91 to 1993/94 (Government of Zimbabwe and UNICEF 1993, 33). Budget cuts mean a reduction in the amount and quality of government healthcare provision (Bassett et a/ 1997; CSO 199613, 4; MacGarry 1999, 9; UNICEF 1994, 64).

While there are government measures to ease the impacts of ESAP (such as the Social Dimensions of

Adjustment Programme), the vulnerable-including children-suffer (Government of Zimbabwe and UNICEF 1993; Mupedziswa 1997). Increasing HIV- AIDS death and illness among adults, in conjunction with reduced government healthcare, means it is increasingly likely that young people will contribute to home healthcare. Official government policy, which aims to ’support home-based care of HIV people’ and ‘improve protection for children in difficult circumstances and prevent situations that give rise to children in difficult circumstances’ (Government of Zimbabwe 1992, 26, 66) fails to identify young carers directly; rather, it focuses on children who are disabled, refugees, street dwellers, in institutions, paid workers, abandoned infants and AIDS orphans (61). Although some young carers may fall within these categories, they are not identified directly.

ESAP is acknowledged to be increasing child labour in Zimbabwe (ILO 1992, 4). As a signatory to the UN Convention on the Rights of the Child, Zimbabwe’s official government policy is committed to International Labour Organisation (ILO) goals of eradicating child labour; in this respect, it recognizes several priority groups, but not young carers specifically (ILO 1992, 5). The government Central Statisti- cal Office (CSO) estimates that more than 40000 children in Zimbabwe may be defined as working children, ‘Children under 15 years who work for money outside their own homes’ (Gwaunza et a/ 1994, 7, 18). This clearly excludes young carers whose work is unpaid and performed within their own households.

While Zimbabwe’s government is committed to children’s rights, easing the social impacts of ESAP and mitigating the impacts of AIDS, it has as yet barely recognized the existence of young carers (NACP and Ministry of Health and Child Welfare 1997). The study reported in this paper specifically investigates children’s unpaid work within the home, focusing on a particular aspect of that work provision of healthcare for sick or frail elderly household members. While little claim can be made for broadening understandings outside Zimbabwe, the case-study material is valid and useful in directing questions for further research in a wider context.

Researching young carers in Zimbabwe The research objectives and methods adopted mean this study was not intended to be statistically rep- resentative. Young carers are generally ’elusive’ research subjects; arranging access to them and their

Young people in Zimbabwe‘s home-based healthcare 61

families is difficult (as found in the UK by Aldridge and Becker 1996, 58-9; Becker et a/ 1998, 15). The greater Harare region formed the location of the first efforts in 1997 (reported here) to identify and Contact young carers in Zimbabwe using a small non-random purposive ample.^

In the first strand of data collection (August 1997), semi-structured interviews were conducted in Harare with key informants in the government, para- statal, NGO and voluntary sectors. The nine interviewees comprised a social worker, bereavement counsellor, community nurse, Ministry of Health and Child Welfare official, healthcare professionals and employees of child-focused and AIDS-focused NGOs. These informants were all interviewed in English by the outside research partner4 at their workplaces (with one exception). The researcher’s outsider status was advantageous in encouraging interviewees to speak openly (and even be critical of the government).

The second strand of data collection (September- October 1997) involved in-depth interviews with young carers. Using methods effective in other studies (Aldridge and Becker 1993), interviewees were contacted by snowballing leads from health, voluntary and social-service-sector professionals. To ensure some representativeness of Zimbabwe’s urban areas, the high-density, low-income residential areas of Harare and Chitungwiza were targeted (Figure 1). Nine young carers were interviewed in the Harare suburbs of Highfield, Glen Norah, Glen View 3 and Mufakose, which, prior to independence in 1980, were formally segregated as black residential areas. Similarly, Chitungwiza is a mostly black, working-class, urban satellite conurbation about 30 kilometres south of the capital, and is Zimbabwe’s third largest urban centre (with a population of 274 91 4 CSO 1994a, 13).

The Zimbabwean research partner carried out interviews with young carers in their homes using the interviewee’s preferred language (usually Shona, sometimes mixed with English or Ndebele). The interview schedule was adapted from a structure promoted by the ILO for researching child labour (Fyfe 1993). Permission to talk with the young carers was sought from adult family members (parent, sibling or aunt), who usually remained present during interview^.^

The qualitative methodology was designed as an exploratory attempt to investigate young carers’ experiences through a small number of case-study individuals. Qualitative interviews provided insights

into this largely uncharted area, revealing information about what young carers do, who become young carers, how and why.

Young carers‘ experiences To understand home-based healthcare by young people in Zimbabwe requires listening to young carers’ experiences, needs, opinions and feelings. The analysis focuses on two aspects of the situations that emerged during interviews: nature of care work provided; and factors leading to individuals becoming carers.

Young people providing care The work of young carers was confirmed and elabo- rated in most of the accounts given by professionals. However, certain government employees in the City of Harare Health Department consistently denied that children within Harare ever acted as young carers.

The nine young people interviewed spoke vividly of providing care (or elements of care) for adult kin. Six care for their own mothers, two look after their grandmothers and one boy cares for his father (Table 1). The finding of mothers being the largest category of care recipients was echoed by key informants and mirrors the situation among young carers elsewhere (Dearden and Becker 1998, 1 1).

All but one person interviewed are full-time, lone carers:

Chenai*c She is very ill and I assist her in all her requirements: bathing, feeding, toileting needs. (*pseudonyms are used throughout) Doris: I help bath, feed and take all due care of her. Thomas: I do almost everything for him since he’s very ill.

Young carers explained that their work includes personal care, treatment-related care, domestic and other work (Table 2). A distinguishing feature of young carers is their involvement with intimate caring; otherwise their tasks are largely similar to those of ordinary young people (especially girls) in Zimbabwe (Mehratu and Mutambirwa 1992, 22), but involving greater time and responsibility.

For most young people in the study, their period of responsibility as full-time carers is indefinite. It could be a matter of weeks, months or even years until the care recipient recovers, dies, or circumstances change to relieve them of caring. The young

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ZIMBABWE

BOTSWANA

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Figure 1 Map of study area (adapted from Zinyama, 1993: 10)

Young people in Zimbabwe’s home-based healthcare 63

Table 1 Characteristics of young carers and their care recipients”

Young carers Gender

Age Sibling order

Education

8 female 1 male Range 15-1 7 years (average 15.9 years) 4 youngest 2 second born 2 only child 1 oldest Range 0-1 1 years (average 8.1 years)

Care recipients Relation of care recipient to young carer 6 mothers

2 grandmothers 1 father 8 femalefemale 1 malemale

Gender matching of carer and recipient

Note:*At time of caring, rather than at time of interview

Table 2 Work of young carers

Intimate care Feed Bathe Toilet Turn, lift and carry Dress and change clothes Clean up vomit, diarrhoea, etc. Give medication

Domestic reproductive work Cook Wash soiled linen/clothes Clean house Fetch water Make fire, light stove Heat water Bring food/drink to care recipient Shop Care for younger siblings

Treatment-related care Take care recipient to hospital, clinic or healer Ensure care recipient takes medication Collect medication from health centre Add traditional medication to food

Other work Run errands Be ‘on call’ Comfort, talk to, listen to and entertain care recipient Ask neighbours for help Agricultural tasks such as ploughing Tend vegetable garden Collect firewood

people interviewed have been carers for periods ranging from eight months to over three years, in three cases caring for their mothers until their death.

Young people becoming carers Numerous interacting and interrelated factors emerged as influencing the likelihood of young people taking on caring responsibilities within their households. The major factors mentioned in inter-

views as significant in determining who cares within the household and why are examined below.

For all the youngsters interviewed, their care recipient’s degree of illness/frailty is sufficiently severe to require full-time care and help with daily living. All the carers report regularly carrying out intimate care. The two grandmothers need care as frail elderly individuals, one mother has terminal cancer and, in the remaining cases, the precise nature of the parent’s illness was not mentioned but

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Table 3 Characteristics of young carers’ households*

Household headship

Parents

Number of members Co-residents

Parental education Parental employment (1 3 co-resident parents)

Number of income earners

Household income earners

Household ‘class‘t

~ ~ ~ ~ ~ ~

5 male-headed households 4 female-headed 5 single-parent households 4 dual-parent Range 3-8 (average 4.6) 13 parents, in all 9 households 8 sisters (5 households); 6 brothers (5 households) (average 1.6 co-resident siblings) 3 aunts (3 households) 2 grandmothers (2 households) Range &13 years schooling (average 5.8 years) 7 sick (ie cared for) 5 in work 1 retrenched 1 income (5 households) 2 incomes (3 households) 3 incomes (1 household) 6 siblings (4 households) 5 parents (4 households) 3 aunts (2 households) 1 pensioned parent 1 professional 4 working class 4 poor (unskilled) working class

Notes:*At time of caring, rather than at time of interview f’Professional’: parents with secondary education and in professional employment; young carers in secondary school aspiring to pursue professional careers after tertiary education. ‘Working class’: parents with primary education and low-skilled employment (if any); young carers with some secondary education, aspiring to obtain future employment ‘Poor working class’: parents with little or no education and no or unskilled manual employment; young carers only primary (or no) education, aspiring to marriage and family

may well be Were the care recipients not so ill or frail, the young people would be less likely to have become carers.

The young carers and their families do not report using external support services, except one ’professional’ household. In all the other households, the only help received is from other household members when not at work. Key informants were in agree- ment that the state, church, NGO and other community services providing support services for ill, disabled or frail individuals needing home (which in Harare are relatively numerous for an African city) remain limited. None target carers, let alone young carers, directly and have very limited coverage reach- ing only a few of the individual poor households needing support.

State health and social welfare services were reported to be deteriorating. For example, district nursing services in Harare recently ceased home visits because of ESAP budget cuts (personal communication with community nurse). What

limited services there are do not target young carers:

AIDS NGO programme officer: It is not standard among AIDS home-care programmes to recognize children as carers. There are best practices-hospital- and church- related outreach programmes do visits, but not always regularly. The focus of visits is on the patient and they don’t pay attention to the care-giver except they are expected to give a report on the patient and how they are.

Most Zimbabwean households have low incomes: 68 per cent of the population (1 990-91 ) live on less than US$2 a day (World Bank 1999, 197). The households of the young carers interviewed were labelled on the basis of employment type, education level and young carers’ career expectations as ’professional’, ‘working-class‘ and ‘poor working-class’ households (Table 3).

The level of household wealth/class influences whether and how young people care. The wealthiest


‘professional’ household in the sample i s exceptional and more typical of the urban elite than the urban majority: both parents have good education and employment (in nursing and export marketing); a nurse is employed and Sarudzai simply assists periodically in caring for her frail grandmother. As she explains, ’I wanted to have something to do during my school holidays’. At the other extreme, one of the young carers in a poor ‘working-class’ household is a full-time carer who has no schooling. Dadirai was living with her sick mother in a rural area until they moved to Glen Norah to live with her aunt, who works:

Dadirai: My mother couldn’t afford (school fees) and I don’t know my father.. . I used to help in the fields. My mother just started feeling sick and I had to take over all the responsibilities. She has been sick for three years now and all the time we were at home in Chiredzi. When we were living at home there it was very difficult because I couldn’t afford any medicines, food, etc.

Illness is a great expense for poor households because incapacity means loss of income; moreover, treatments (formal or traditional) and home care are costly. The households in the study all have at least one earner, mostly in low-waged, unskilled, manual occupations (such as a shop assistant) (see Table 3). The dependency ratio is roughly three household members to one earner. Only about half of the parents have employment and the others are sick (Table 3), so their households are supported by other kin (young carers’ siblings and aunts). Nearly half of the household heads are single-parent mothers; such households tend to be poorer than average.

Low-income households simply do not have the means to pay for home-care assistance such as a qualified nurse or unqualified carer, so children are more likely to become carers. Where they do so, it would often appear to be the household’s least-cost strategy in terms of loss of education, training or income.

In Zimbabwe (as elsewhere in the global South), families form the greatest means of support. Key informants indicated the strong sociocultural expec- tation that the extended family should care for its members. Thus, state-sector nursing outreach and health education personnel talk about the impor- tance of the extended family caring for sick family members ‘in our culture’. Always the ultimate reason for a child becoming a carer is that their family structure i s such that no immediate adult family member is present, available, willing and able to step

in. Doris is the youngest sibling-her two older sisters and a brother (who is working) live with them. Doris cares for their sick mother: ‘There was no one else to do it since all my siblings are working and our father deserted us.‘ Thomas’ mother is dead and he only has one brother. Thomas cares for his ill father so that his older brother can work to support them: ‘He was discharged from hospital and there was no one else to take care of him.’ Chenai lived with her mother in the family’s rural home. When her mother became so ill that they could no longer manage alone, they moved to be with her father and three siblings in Harare. Chenai’s brother works as a security guard and her father is employed as a labourer, but he helps to look after his wife when he can, as Chenai cares for her younger sister too: ‘There were just two of us at home when she fell sick . . . in December 1996 when I started looking after my mother, I was doing most of the work anyway.‘

Over half the young carers looking after their parents live in single-parent households (Table 3), suggesting that where there is no spouse to care, a child is liable to become a carer. Of the other potential adult carers in the households, siblings and aunts who do not take on caring roles are in work or education. Young carers appear, in part, to be the outcome of lack of potential older carers in the household, combined with strong sociocultural models of caring as proper behaviour (especially for girls):

UNICEF project officer The girl child is always seen as the primary carer, boys leave home or school to look for jobs to provide support for siblings . . . Girls prefer to send their own brothers to school because they‘re socialized to see themselves in the domestic sphere as own place.

Some young people may also be given responsibilities in caring for non-kin, doing paid work for better-off families able to afford such services: ‘if a wife or mother works, her maid may do the care . . . In cities most women are working so their maid . . . does the caring’ (community nurse). Similarly, urban families may use help from a distant relativean NGO social worker talked of families bringing young female rural relatives to the city.

The rural-urban divided nature of the Zimbabwean extended family is significant here, as non-resident rural young relatives may become carers: ‘Families get nieces, school leavers from rural areas to help, there are growing numbers of these because of the unemployment situation’ (community nurse). It was

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suggested by the NGO social worker that calling on a rural relative may be preferable to resident (urban) children forfeiting education. On the whole, young people co-resident within the care recipient’s immediate household appear more likely to become carers than non-resident children. In all cases, the young carers interviewed are co-resident, except Sarudzai (who helps care for her grandmother during holidays from boarding school).

The full-time young carers did not indicate any choice involved in taking on a caring role-the decision was made by adult kin or fell to them by default: ‘My mother was sick since November ’96 and that’s when I took responsibility. . . there was no one else to do it’ (Petronella). Prevailing sociocultural constructions of childhood in Zimbabwe give young people little power or status.

Similarly, gender is a major factor influencing who becomes a young carer. Among the interviewees, boys form only a minority of young carers (Table 1). This strong gender bias is not surprising and was consistently identified by the key informants:

Hospice counsellor; If adult income providers become ill, girls are more likely to do direct care. UNICEF project officer; . . . society believes, expects, if got a girl child she will always be there without com- plaints. Selfless, she’ll give up a lot to be with her mother or parents. People say ‘At least you’ve got a girl‘, but don’t expect anything from boys . . . expect them to be out the door!

This gender imbalance reflects prevailing sexual divi- sions of labour whereby domestic and caring work is socially constructed as feminine. Thus, caring responsibilities are more readily placed on girls than boys (five of the female interviewees had co-resident brothers).

A related factor is gender matching of patient and young carer, as was the case for all young carers interviewed (Table 1). Such matching is deemed culturally preferable wherever possible, especially where intimate care is involved:

AIDS programme community officer: Traditionally there are some things kids can’t do. If a girl’s father is ill and she is taking care of him the relatives will try and find a man to bathe him. NCO social worker; Boys bathe fathers.

Key informants also related exceptional cases where gender matching was not possible because there was no one available, for example, a boy without sisters who had to care for his mother.

Six of the eight girls ceased their school education to be full-time carers; of these, four have co-resident brothers. This suggests that, where one sibling must be withdrawn from school, work or training in order to care, girls tend to be withdrawn in preference to boys. Interviews with key informants support this suggestion:

AIDS programme community officer: If there is a boy of 15 and a girl of 12, the girl likely to be withdrawn from school to do the care and the boy continue at school.

All the young carers interviewed are 15-1 7 years old (Table 1 ). We may suppose children across a wider range of ages are involved in caring, although they were not represented in the small sample interviewed. Key informants suggest children may care from as young as 7-9 years.7 Nonetheless, 15-1 7 years may represent a prime age for caring, as mid-teenagers are not yet old enough to be earning in the formal sector and would command less than an adult income in the informal sector, yet are likely to have completed primary school and even some years of secondary education (Table 1).

Overall, the factors emerging as significant for Zimbabwean young people becoming carers include care recipient’s severity of illness/frailty, lack of support services, household poverty, family structure, co-residence, power/status, gender and age. Given the different contexts, it is remarkable that these factors closely echo those suggested by Dearden and Becker (1998, 35) from their research with young carers in the UK.

Among siblings, the choice of who becomes the primary carer i s generally a function of the relative interplay between gender, age, co-residence, educational level, inclination and income-earning ability. Illness-affected households face difficult decision- making over meeting domestic and waged labour demands (both present and future), which may result in children becoming carers. The precise configura- tion of factors in each household and extended family situation are complex and unique.

Conclusions

Among the central insights of this small investigative study is a confirmation of children (girls rather than boys) engaging in a range of work involving intimate care, treatment-related care, domestic and other tasks to provide healthcare for adult kin in poor urban households of Zimbabwe. Secondly, several


factors emerge shaping whether and how young people become young carers. These factors are primarily the degree of illness, availability of support services, poverty, family structure, co-residence, status/power, gender, age, educational level and income-earning ability. The operation of these factors reflect and confirm the dominant construction of caring as feminine, unskilled, non-work (reinforcing similar findings elsewhere: see Gregor 1997).

This exploratory study suggests that the presence of child carers in Zimbabwe could well be exacer- bated by the complex interlinked macrolevel factors of deteriorating economic conditions, intensified by the AIDS pandemic and current declines in formal- sector healthcare provision. However, from this descriptive single-location study, precise trends and causality cannot be apportioned. It can be postu- lated that relations within families in Zimbabwe may be shifting in respect to roles and burdens of home- based healthcare providers. At the household level, hardship may increasingly encourage households to allocate children (especially girls) to care for elderly sick or frail relatives for short to medium-length periods, as part of the coping mechanisms.

Wider relevance of the research It is anticipated that the insights gained in this research mirror experiences of young carers in other African, developing and developed countries, as state provision for healthcare is declining everywhere (relative to need or demand). There appear to be many resonances to pursue between young carers in the South and those elsewhere (eg, in the UK, Aldridge and Becker 1993; 1995; Becker et a1 1998; Dearden and Becker 1998; Jenkins and Wingate 1994).

Within Zimbabwe, and more widely, much remains unknown about children’s unpaid healthcare work in the household. Young carers across Africa, the rest of the South and much of the North remain largely invisible, unheard and unsupported. Clearly there is need for more research; not least, in Zimbabwe, to look as a priority at young carers in rural areas (home to 69 per cent of Zimbabwe’s population: CSO 1994b, 5), the networks of institutional and informal support for young carers and the long-term impacts of caring on young people as they become adults.

Young carers could benefit from help, through specific support and assistance (whether statutory, voluntary, from the state, CBOs or NGOs) in their

caring position. Such support would need to be socially and culturally appropriate, but there are lessons to be learnt from young carers’ projects in the UK, and home-care support programmes for PWAs and orphans in Africa. These particular volun- teer programmes are already supporting some young carers indirectly (Foster and Nyaruwa 1993, 3). Such support should become part of Zimbabwe‘s primary healthcare approach. A further rationale for supporting young carers is to attempt to ensure households’ self-reliance, which some promote as a solution to Africa’s healthcare crisis (see, for example, Alubo 1990, 646).

Acknowledgements

Fieldwork for this study was funded by an HSBC Holdings small research grant awarded by the RCS-IBC. Interviews with young carers were conducted by Abby Mgugu. The Geography Department, University of Zimbabwe gave support during the fieldwork. Thanks are expressed to geographers at various seminars, conference and work- shops who gave comments on earlier versions of this paper. Thanks also to Abby Mgugu, Ceoff Foster, Alethea Mashamba, Nicola Ansell, Clyn Williams, Sue Coleman, Joe Painter and the anonymous referees who gave valuable feedback on drafts. Andy Lawrence produced excellent cartography. Especially acknowledged are the professionals, young carers and their families who talked about their (often very personal) experiences of caring. Sincere apolo- gies are offered to those recently bereaved young people who found the interviews distressing.

Notes

1 On HIV-AIDS home care in Zimbabwe, for example, there is some limited research (Hansen et a/ 1998; Jackson and Civic 1994; Jackson and Mhambi 1992).

2 In a Manicaland study, 76 per cent of rural women knew someone who had died or was sick with HIV-AIDS (Cregson et a/ 1998, 325).

3 A ’quick and dirty’ approach was appropriate for this initial study, not least because, in the context of the HIV-AIDS pandemic (in which infection doubling time may be just nine months), findings need to be produced rapidly (Barnett et a/ 1995, 175).

4 The research utilized complementary skills and experiences of an ‘insider’ (Abby Mgugu, a Zimbabwean professional trained in social work, who is a gender specialist and a mother) and an ‘outsider’ (Elsbeth Robson, a British geographer with experience of research in Africa who has worked with children in Kenya and Europe).

5 In almost all cases, another person was present during interviews (usually a sibling or aunt). In one case, a father assisted in interpreting for the interviewer where the

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young carer spoke Ndau, a Shona dialect unfamiliar to the Zimbabwean researcher. Adult presence during the interviews, while methodologically undesirable, was an unavoidable condition of gaining access. It is recognized that such a presence may have influenced the young person’s responses; at times, the adult contributed answers on behalf of the young carer.

6 In Zimbabwe, as in many cultural contexts, negative stigmas around AIDS cause reluctance to identify and name HIV-AIDS as a source of illness, particularly of a close relative (Campbell 1990; Gregson et al 1998, 325; Muyinda et a/ 1997; UNICEF 1994, 86). It has also been found elsewhere that young carers often know little about their care recipient’s condition (Becker eta/ 1998, 5) because they may be too frightened to ask, or adults (misguidedly) do not reveal the truth to them (Segal and Simkins 1993). This phenomenon is likely to be exaggerated in cultural settings in which children are not encouraged to ask questions (Gelfand 1979).

7 Children of 7-9 years are reported to have responsibility for sick and elderly household members on commercial farms while adult household members are working in the fields all day (AIDS NGO programme officer). Children may be caring from 8 years of age (community nurse).

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Invisible carers: young people in Zimbabwe's home-based healthcare

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