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Children caring for parents with HIV and AIDSGlobal issues and policy responses$

Ruth Evans

Print publication date: 2009

Print ISBN-13: 9781847420220

Published to Policy Press Scholarship Online: March 2012

DOI: 10.1332/policypress/9781847420220.001.0001

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Resilience and impacts of young people’s care work within the school and wider community

Resilience and impacts of young people’s care work within the school and wider community

Chapter:
(p.175) Seven Resilience and impacts of young people’s care work within the school and wider community
Source:
Children caring for parents with HIV and AIDS
Author(s):

Ruth Evans

Saul Becker

Publisher:
Policy Press
DOI:10.1332/policypress/9781847420220.003.0007

Abstract and Keywords

This chapter discusses resilience and impacts of children's care work in families affected by HIV/AIDS within the domains of the school and wider community. It explores the ways that children and parents/relatives with HIV draw on social ties, networks, and informal safety nets in the school environment and community in order to deal with household crisis and mitigate their vulnerability.

Keywords:   resilience, children's care work, HIV/AIDS, wider community, social ties, informal safety nets, household crisis

Previous research with young carers in the global North has suggested that young caregiving may have negative impacts on children’s educational performance and school attendance as well as restricting children’s opportunities for developing peer friendships and taking part in leisure and social activities in the wider community (Bilsborrow, 1992; Aldridge and Becker, 1993; Dearden and Becker, 1995; Marsden, 1995; Dearden and Becker, 1998; Crabtree and Warner, 1999; Thomas et al, 2003; Dearden and Becker, 2004). Following on from the previous chapter, this chapter discusses resilience and impacts of children’s care work in families affected by HIV/AIDS within the domains of the school and wider community. We explore the ways that children and parents/relatives with HIV draw on social ties, networks and informal safety nets in the school environment and community in order to deal with household crisis and mitigate their vulnerability.

Resilience and impacts within the school environment

The literature on orphans and vulnerable children in the South has documented many negative impacts of the HIV/AIDS epidemic on children’s educational performance and attendance (Kelly, 2005; Robson and Kanyanta, 2007b). Data from 20 Sub-Saharan African countries show that children aged 10–14 who have lost one or both parents are less likely to be in school than their non-orphaned peers (Rispel with Letlape and Metcalf, 2006). However, other studies have provided a less conclusive picture of the school attendance of orphans compared with non-orphans (Guest, 2001; Ainsworth and Filmer, 2002; Gould and Huber, 2003). Ainsworth and Filmer (2002) compared enrolment levels of orphans with other children in 28 countries and found that enrolment was related to income level and questioned whether orphan status should be used to target educational assistance (Kelly, 2005). Similarly, Gould and Huber’s large study in Tanzania found (p.176) that although HIV/AIDS affected children’s school attendance, some children demonstrated considerable educational resilience:

Just as many children from poor homes survive and do well in school, many children from HIV/AIDS affected households also survive and do well. Coming from an HIV/AIDS affected household is neither a necessary or a sufficient condition for irregular attendance, dropout or never being enrolled.

(Gould and Huber, 2003: 35)

Research suggests that children, particularly girls, may be withdrawn from school to care for sick family members (Kelly, 2005). However, Gould and Huber’s large-scale study of children’s primary school attendance in Tanzania suggests that the majority of children combine their caring responsibilities with their schooling (Robson et al, 2006) and thus caregiving may have more significant effects on the regularity of children’s school attendance rather than on school drop-out rates. Girls’ attendance was more likely to be disrupted than boys’ (Robson et al, 2006).

Previous research on young carers in the UK has highlighted a number of negative impacts of children’s caring roles on their educational attendance and performance, including regularly missing school to care for a parent, poor concentration because of tiredness or worrying about their parent, as well as having limited time for homework (Marsden, 1995; Becker et al, 1998; Dearden and Becker, 1998; Crabtree and Warner, 1999; Dearden and Becker, 2004). Research with children affected by parental HIV in the UK has also suggested that children’s educational performance and attendance were negatively affected by their caring roles (Lewis, 2001; Cree et al, 2006). Cree et al’s (2006) study of children affected by parental HIV in Scotland suggested that children missed significant parts of their schooling, either through staying at home with a parent or through tiredness in class. However, claims about the impacts of children’s caregiving on their educational performance have been refuted by some commentators, who suggest that poverty and socioeconomic class may represent the most significant variables associated with unexplained school absences rather than children’s caregiving (Olsen, 1996; Newman, 2002a). Becker (2007) has also suggested that it is difficult to isolate caregiving from other variables that can impact on educational attainment. We examine the educational experiences of young people from Tanzania and the UK within this context.

(p.177) Irregular school attendance

Most young people in Tanzania and the UK reported that they sometimes missed school because of their caring responsibilities, for periods of a few days to up to several months when their parent was seriously ill (see Box 7.1). A higher proportion of girls in Tanzania mentioned this in comparison with boys. As Robson et al (2006: 101) note, caring for a sick relative is ‘likely to be an irregular demand on children’s time’, called on during ‘times of severe need or temporary crisis’ related to the parent/relative’s ill health. Some young people mentioned that their caring duties made them late for school, which sometimes resulted in corporal punishment and having to miss further classes, as the example of Maureen in Box 7.1 shows.

Poor academic performance

Almost two thirds of the young people in Tanzania described a number of ways they thought that their parent’s ill health and caring responsibilities had negatively affected their academic performance. A higher proportion of girls felt that their academic performance had been affected by their caring responsibilities than boys. Many young people cited difficulties concentrating on their school work both at home and at school because of tiredness or worry and anxiety about their parent’s illness and their caring responsibilities. Some children and parents had noticed that children’s class ranking had decreased since their parent’s health deteriorated and, in a few instances, young people felt that stress, anxiety and tiredness led to their failure in national school leaving examinations. Some young people also felt that they had been prevented from continuing with secondary education because of their parent’s high support needs and demand for their labour at home (see Box 7.2).

In the UK, over a third of the young people felt that their academic performance had been affected by their caring responsibilities, commenting on their difficulties concentrating at school and college because of worry and tiredness, as well as in a few instances missing exams because of their caring responsibilities. Kerry (aged 18) became very stressed and anxious about her mother’s illness while she studied at a college located far from where they lived and eventually left to attend another college that was much closer to their home:

At my first college I got quite worried and I had to go and see the doctor because I felt like I just didn’t know what to do, so that’s (p.178) probably one of the reasons which made me leave because I was just really stressed.

(p.179)

Temporal and spatial conflicts between school work and caring responsibilities

Half of the young people in Tanzania and the UK described how their caring responsibilities within the household conflicted with their time for private study and school work. In Tanzania, a higher proportion of boys mentioned this in comparison with girls. Many children in Tanzania found that they had to stay up late to do their homework after their caring tasks had been completed, resulting in tiredness and fatigue. Some young people found it difficult to negotiate time and space for themselves to study within a context of poverty and overcrowded living conditions. Maureen, for example, met resistance to her use of a kerosene lamp late at night when her sick step-father wanted to sleep (see Box 7.3).

In the UK, young people also experienced conflicts between their caring responsibilities and school work, which some parents were aware of and regretted (see Box 7.4). However, in both Tanzania and the UK, children can also be seen as negotiating spatialised boundaries and time for their studies within the context of the household and school, fitting their school work around their caring responsibilities (p.180) (p.181) wherever possible. For example, both Malcolm and Magic in Boxes 7.3 and 7.4 did their homework early in the morning before school, when they found they had time to themselves. In a few instances, however, children and parents were worried that the conflict between school work and caring responsibilities would have detrimental effects on children’s long-term educational outcomes.

Educational resilience and supportive school environments

Despite the negative impacts of HIV/AIDS and young people’s caring responsibilities on their education described so far, over a third of the young people in both Tanzania and the UK did not think that their parent’s illness and their caring responsibilities had any significant effects on their school attendance or academic performance. Furthermore, almost half of the parents in Tanzania and the majority of parents (p.182) in the UK felt that their child’s academic progress was good despite their caring responsibilities. As one parent in Tanzania said about her daughters’ educational progress: ‘They are doing very well, so well that I am very pleased and very relieved. It makes my life worth living.’

For the majority of young people in Tanzania and the UK, doing well at school and continuing their education was their main priority for the future, as education was seen by children and parents as key to improving their employment prospects and life chances. Indeed, several parents/relatives emphasised their commitment to ensuring that their children did not miss school because of their illness and caring responsibilities. As one woman with HIV being cared for by her grandson in Tanzania said: ‘I don’t like children skipping classes because I only have Standard Four [four years of primary school] education. So I don’t want them to be illiterate, I make sure they go to school even when I am seriously ill.’ Similarly, a mother with HIV in the UK commented on her commitment to ensuring her sons attended school despite her illness: ‘I won’t let them miss school or, you know. Very, very rarely have they missed school because of me, you know, so I do ensure that they go to school.’

Positive school experiences and supportive school environments have been identified as potential protective factors for children experiencing stress and adversity at home (Newman, 2002b; Schoon, 2006). However, the research in the UK and Tanzania found that most children and parents did not want teachers to know about parent’s illness or children’s caring responsibilities because of fear of stigmatisation, confirming previous UK research (Lewis, 2001; Cree et al, 2006). Although almost half of the young people in Tanzania thought that teachers were aware of their caring responsibilities, very few thought that teachers knew about their parent/relative’s illness. In the UK, very few young people said that teachers were aware of their parent’s illness and none thought that their teachers knew about their caring responsibilities. The lack of awareness among school professionals of children’s family situations prevents young people benefiting from potential support available within the school environment.

In a few instances in Tanzania when teachers were aware of a parent’s illness or young people’s caring responsibilities, young people and parents had found the teachers to be understanding, making allowances for individual children when they were needed to care for their parent at home (see examples in Box 7.5). Some mothers with HIV had explained to teachers that they were ill and were widows or lone mothers with very limited means so that children would not be sent home or punished for a lack of money for school contributions. (p.183) Indeed, in one instance, the school paid the necessary contribution on behalf of one widow and gave the family a food donation. However, some children reported that when they tried to explain to teachers about their parent’s illness, they found teachers unsympathetic and children continued to be punished for lateness and concentration problems (see Box 7.5).

In only a few instances were teachers and school professionals in the UK aware of parents’ HIV status and children’s caring responsibilities. When parents had decided to tell teachers about their illness, they were motivated by a desire for teachers to be more understanding of any problems or stress their children might experience when they (p.184) were ill, although young people did not necessarily think that this helped (see example of Gemma in Box 7.6). Although almost all of the young people said that tutors and pastoral care staff were available at school to talk to about any problems they experienced, they thought that the support they offered was focused mainly on difficulties with school work and they did not feel able to talk to them about family problems. Indeed, in one instance, a young person wanted her teachers to know about her caring responsibilities but felt uncertain of how teachers would react and did not feel able to approach her teachers about it (see example of Kerry in Box 7.6). Some parents found teachers unsupportive when children were bullied or had disruptive behaviour at school and did not feel that teachers took the time to listen to children and find out about their problems (see example of Magic in Box 7.6).

Thus, according to the experiences of young people and parents, young people’s resilience, good school attendance and academic performance was related more to informal support from parents, peers and individual teachers, high aspirations, and the young person’s individual interests and motivation to study, rather than supportive institutional environments or sensitivity and awareness of young caregiving among school professionals.

Other factors impacting on children’s education

As discussed in Chapter 2, households affected by HIV/AIDS in the global South often experience chronic poverty. Despite the abolition of primary school fees in Tanzania in 2002 as part of government commitments to ‘Education for All’ and the Millennium Development Goal of achieving Universal Primary Education by 2015, parents still struggle to meet the costs of school uniforms and educational supplies, secondary school fees and other contributions. Thus, poverty, particularly in low-income countries is likely to have just as significant an impact on children’s school attendance and performance as children’s caring responsibilities.

Half of the young people and parents in Tanzania commented on not being able to afford exercise books, school uniforms, school meals, secondary school fees, examination fees and other contributions. This resulted in children regularly being sent home from school, suffering corporal punishment from teachers and sometimes missing several weeks of school until they received financial support from neighbours, relatives or community-based organisations, or in a few instances, were exempted from payments by teachers. Many of the young people (p.185) (p.186) experienced difficulties attending secondary school because of not being able to afford the fees, even when they qualified to attend government secondary schools, which have substantially lower school fees than private schools. Magdalena, a 15-year-old girl who used to care for her mother and had lost both parents to AIDS, was selected to go to a government secondary school, but was unable to attend because of a lack of money for school fees. Her guardian commented on how upset Magdalena was when she could not continue at secondary school:

Her mum was illiterate, so [Magdalena] was very distressed when she couldn’t continue with her Form One education. She used to cry a lot. She is bright, she used to do well in her class, she was normally first or second in the class.

Other difficulties experienced by children at school in Tanzania included corporal punishment, missing classes when they were asked to run errands for their teachers and being bullied by their peers.

In the UK, some children and parents also highlighted issues related to poverty as impacting on children’s education. Many of the families lived on low income in overcrowded social housing, which restricted the space available to young people for private study and homework. Several families did not have a computer or internet access at home (considered to be a necessity for families with secondary school age children in the UK: Bradshaw et al, 2008), which made it difficult for young people to do their coursework. This sometimes resulted in conflicts with parents when young people went to their friends’ houses or to the library to study and returned home late.

Young people and parents also highlighted a number of difficulties children experienced at school related to immigration and racism, including language difficulties for newly arrived young people whose first language was not English, parents/siblings not being able to help them with their homework because of language and literacy difficulties, difficulties with bullying and peer group interactions and experiences of institutional racism in school and college. The problems that young people experienced at school reveal the difficulty of isolating the effects of caring from the broader socioeconomic impacts of HIV/AIDS, poverty, migration and racism. These structural and relational aspects of social exclusion are likely to have just as significant impacts on children’s educational outcomes and future life chances as their caring responsibilities.

(p.187) Resilience and impacts within the wider community

Much of the previous research with young carers in the global North has identified negative impacts of children’s caring responsibilities on their friendships, social lives and relationships in the wider community. This includes restricted opportunities for social networking and for developing peer friendships (Bilsborrow, 1992; Aldridge and Becker, 1993; Dearden and Becker, 1995; 1998; Thomas et al, 2003; Dearden and Becker, 2004) and limited opportunities for taking part in leisure and other activities (Aldridge and Becker, 1993). However, the resilience literature suggests that aspects of children’s wider social environment, such as a supportive extended family, positive peer relationships, extracurricular activities, valued social roles and engagement in the community, membership of religious or faith communities, and the availability of external support or resources, represent important protective factors that can build children’s resilience (Newman, 2002b; Schoon and Bynner, 2003). Gilligan (2004) suggests that a ‘secure base’ and supportive social networks in different domains, such as the home, extended family, school and social activities in the community can represent ‘arenas of comfort’ for children who experience adversity. Similarly, familiar routines, celebrations and rituals can be important in creating a sense of order, structure, collective identity and belonging for children exposed to risk and adversity (Gilligan, 2004). The different effects of young caregiving on young people’s peer relationships and social lives within the context of the global North and South are discussed below.

Young people’s friendships, supportive social networks and participation in the community

The majority of young people in Tanzania and the UK mentioned best friends and peers with whom they enjoyed spending time. When children were asked to take photographs of people and places that were important to them, many young people in the UK took photographs of themselves with their friends on the way to school, during class, dancing at an after-school dance club, with friends at a youth club and at a party for children affected by HIV. This reveals the importance young people attach to their peer friendships and their participation in social activities. Some young people in the UK had ambivalent emotional ties to ‘home’ and found it difficult to invite friends to their house. In contrast, many young people in both Tanzania and the UK valued school, college, church, youth clubs, leisure and extracurricular (p.188) activities as places of respite or ‘arenas of comfort’ from the difficulties they were experiencing at home and as opportunities to socialise with their peers, as illustrated in Box 7.7.

While the opportunities for leisure and extracurricular activities were much more limited for young people in Tanzania, some young people described spending time with their peers as a ‘relief’ and a way of ‘taking your mind off things’. Some young people took photographs of places they went to relax, such as chatting to friends outside particular places or watching TV at their house, or seeking out a secluded place where they had time to themselves to think or rest when they were tired. Many young people regularly attended church, sometimes on their own or with their siblings if their parent/relative was too ill to attend. Parents/relatives were keen to ensure that children participated in confirmation classes, religious celebrations and initiation ceremonies, despite their difficulty in affording new clothes for their children on these occasions.

Young people’s peer relationships and engagement in their communities thus seem to play an important role in providing a break from difficult home situations and in reducing their social isolation. However, young people rarely perceived their peer relationships as sources of practical or emotional support with their caring responsibilities. In Tanzania and the UK, young people very rarely mentioned asking friends for help when their parent/relative was ill or for practical support in caring for their parent/relative. As discussed earlier, few children told their friends about their parent’s HIV status because of a fear of stigma. Some young people did feel, however, that they could talk to a friend if they had a problem or were worried or upset, and a few young people felt able to talk to a trusted friend about their parent/relative’s illness and their caring responsibilities. A few young people in Tanzania also valued their friendships in terms of providing emotional support and advice, as Good Luck (aged 18) commented: ‘They give me advice and encourage me saying that I shouldn’t lose hope, do my best and that it is all God’s plan.’

While young people’s friendships and peer relationships offered limited emotional support, children and parents from households affected by HIV often relied on informal social networks with neighbours, family friends and members of their faith communities for material support and practical assistance with caregiving. The photographs taken by young people in Tanzania reveal the places they go to in their local neighbourhood and community to access both informal and formal support for their parent/relative and family as part of their everyday caring responsibilities. These included: markets (p.189) and shops where they bought food for the family, places they went to fetch water and firewood, clinics and NGOs where they went to collect medicine for their parent/relative or to seek support to transport their parent to hospital (see Figure 7.1). (p.190)

Resilience and impacts of young people’s care work within the school and wider community

Figure 7.1: Photograph taken by Malcolm (aged 15, Tanzania), who cared for his mother and younger siblings: ‘This is where I go to get things I need at the market.’

In Tanzania, most young people said that they asked their neighbours for material support when their parent was ill, and a few children said that neighbours helped them to care for their parent on a more regular basis. As discussed in Chapter 5, some children begged for food and money or borrowed money from neighbours to meet the household’s basic needs or the costs of medication or transport to take their parent to hospital during times of crisis. Janet’s account in Box 7.8 illustrates the importance of material support from neighbours. Some children experiencing extreme poverty and hunger also begged for food from the church or mosque. In some other cases members of faith communities helped families obtain food and clothing donations from the church when parents were seriously ill.

A few young people in Tanzania also said that neighbours sometimes offered practical assistance with their caring responsibilities when their parent/relative was ill, often according to conventional gender norms. For example, female neighbours sometimes helped with domestic and personal care tasks, while in one instance, a male neighbour helped William with the outdoor tasks of cutting grass for the goat and fetching water when his grandmother was ill. In the UK, neighbours were rarely asked for material support when parents were ill, but in a few instances neighbours and family friends provided practical assistance with childcare and children’s caring responsibilities, as the example of Sarah in Box 7.8 shows.

(p.191)

(p.192) Many young people and parents in Tanzania thought that neighbours did not know about their parent’s HIV status and they did not want to disclose their status for fear of stigmatisation. However, some parents had told some of their close neighbours and friends about their illness and a few sought support from nurses or doctors living in their neighbourhood, who provided material support and informal medical advice about taking ARVs. Similarly, some parents, who were active members of support groups of people living with HIV and were open about their status, had developed supportive social networks among friends and neighbours in their local area (see Box 7.8).

Many parents with HIV in the UK had shared their HIV status with close friends and had developed supportive relationships with other people living with HIV through support groups in the community, to whom they felt able to turn for emotional, and sometimes practical, support with care tasks, particularly during the day when children were at school (see Box 7.8). Thus the social support networks that parents developed among their friends and neighbours provided highly valued emotional support for parents themselves, and also provided practical assistance that helped to alleviate children’s caring responsibilities when parents were seriously ill.

Temporal and spatial conflicts between children’s caring responsibilities and their social lives

Almost two thirds of the young people interviewed in the UK felt that their caring responsibilities in some way restricted their social lives and engagement in leisure and other activities, whereas just over a third of the young people in Tanzania reported this. A higher proportion of boys in Tanzania mentioned this in comparison with girls. Several young people in the UK felt that the negative aspects of their caregiving related to not having enough time and space to themselves, because their caring responsibilities conflicted with their own interests and activities. This appeared to be linked to age; as young people became teenagers they increasingly wanted to socialise with friends and engage in extracurricular activities independently from their family, but found their time to do so was limited because of their caring responsibilities. Furthermore, a few young people felt that their parent was sometimes overprotective and restricted the time they could spend with their friends or the leisure and extracurricular activities they could engage in, as the example of Gemma in Box 7.9 shows.

(p.193) Young people’s narratives and the photographs that they took reveal that young people’s caring tasks were focused predominantly in and around the household. As discussed earlier, some young people in the UK perceived ‘home’ as a place where they had considerable responsibilities and which they associated with worry and anxiety about their parent’s illness, rather than a place where they could relax and enjoy spending time with their family or friends. Living on low income in overcrowded accommodation also impacted on young people’s experiences of home, and a few young people in the UK described their difficulty or reluctance in inviting their friends to their home. A few parents in the UK were concerned that their children’s spatial mobility and engagement with their peers in leisure and social activities was restricted to the household because of children’s fear of leaving their parent alone (see Box 7.10). Indeed, a few children in the UK and Tanzania expressed a preference for staying at home, close to their parent, where they were able to respond to their parent’s support needs when they were needed, rather than going out to play with their friends. Some parents in the UK also expressed their frustration and regret that they did not have more energy to take their children out and spend time doing leisure and social activities with their children because of their illness and physical impairments.

(p.194) As we saw in Chapter 6, many service providers in the UK felt that a negative outcome of children’s care work was often that they missed out on doing social activities with their peers, linking this, as parents did, to a sense of ‘loss of childhood’ (see Box 6.5). Some service providers also thought that children’s spatial mobility was affected by their caring responsibilities, resulting in the risk of social exclusion.

Very few young people or parents/relatives in Tanzania mentioned conflicts between young people’s caring responsibilities and recreation, which is likely to be linked to much more limited play and leisure opportunities in comparison with the UK. It also appears to be linked to differing cultural expectations about children’s free time and recreation. For example, when young people in Tanzania were asked what they liked doing in their free time, the majority said reading and private study, doing household chores or caring for their parent; play and leisure activities were rarely mentioned. This contrasts with the responses of young people in the UK, who cited a wide range of play and leisure activities they enjoyed doing, often in adult-supervised youth groups and clubs. Some service providers in Tanzania were concerned, however, that children may miss out on playing with their peers because of their caring responsibilities, as one project worker commented: ‘They waste (p.195) a lot of their childhood looking after their parents instead of playing and being happy with their friends’.

Stigma and social isolation

Chapter 4 highlighted the different forms of stigma and discrimination that many mothers with HIV experienced from their relatives, friends, neighbours and members of the wider community in both the UK and Tanzania. Several young people caring for parents/relatives with HIV in Tanzania also had direct experiences of stigma and ostracism from their relatives, friends, neighbours and other community members (see Box 7.11; see also Box 6.12). Service providers in both countries felt that children caring for parents/relatives with HIV were vulnerable to ‘stigma by association’, as a result of their parents’ illness. This confirms the findings of previous research with children affected by HIV/AIDS (Lewis, 2001; Cree et al, 2004; Evans, 2005; Foster et al, 2005; Ely, 2006) as well as research with young carers caring for parents with other stigmatised illnesses and impairments, such as mental health problems or alcoholism (Landells and Pritlove, 1994; Aldridge and Becker, 2003). However, the majority of service providers in Tanzania and the UK felt that children caring for parents/relatives with HIV experienced a much higher level of stigma and discrimination than other young carers, and it was this aspect that most clearly differentiated their experiences. As one service provider in Tanzania commented:

HIV is considered evil or unapproachable because of fear of infection from the sick person. In the case of HIV some people even change the route they walk for fear of passing near the house of a person with HIV/AIDS, such is the stigma attached to it.

The stigma associated with HIV can lead to bullying and social isolation, which can be very distressing and affect young people’s emotional well-being, as the examples in Box 7.11 show. In Tanzania, some service providers felt that the stigma experienced by young people could also affect their transitions to adulthood, such as the success of small business enterprises and marriage prospects.

Although direct experiences of discrimination and ostracism were not mentioned by young people in the UK, the secrecy surrounding HIV significantly affected their ability to talk about their parent’s illness and their caring responsibilities and seek support from family, friends, neighbours, and professionals (see Box 7.12). Indeed, roughly half of the young people in both countries thought that none of their friends (p.196) knew about their parent/relative’s illness and very few said that their teachers knew. Most children did not feel able to talk to their friends, neighbours or teachers about their parent/relative’s illness because of fear of stigmatisation or because they had been told by their parent/relative to keep it a family secret, as is illustrated in Box 7.12.

Furthermore, when young people in the UK were asked more generally whom they could talk to if they had a problem or were worried or upset, over a quarter said that there was no one they could talk to. For some young people, the stigma and secrecy surrounding HIV also led to feelings of being different from their peers. For example, Kerry found it difficult to ‘fit in’ and was not able to talk to anyone about her problems:

(p.197) It was quite difficult to fit in with people because no one has the same problems as I do. I mean they might do, but I don’t know that, so I can’t really speak to anyone. I find it difficult to integrate.

In Tanzania, when young people were asked whom they could talk to about their parent/relative’s illness and their caring responsibilities, the most common response was that there was no one they could talk to. Similarly, when they were asked ‘Who else helps you to care for your parent/relative?’ the most common response was that no one else helped them. Half of the young people in Tanzania thought that their friends knew about their caring responsibilities, and a third knew other children who had caring responsibilities in their neighbourhood. Only a few young people, however, had the opportunity to meet other young people with caring responsibilities through youth groups and psychosocial support interventions targeted towards young people affected by HIV/AIDS.

(p.198) In contrast, in the UK, half of the young people had got to know other young people with caring responsibilities through their engagement with youth groups targeted towards young people affected by HIV. However, attending a youth group for children from similar backgrounds did not necessarily mean that young people talked to their peers about their experiences or developed peer support. For example, Tolu (aged 13) attended three youth groups for young people who were aware of HIV within their family. He knew some other young people who cared for a parent with HIV, but did not know about their home situations and did not think they would want to talk about their parents’ illness: ‘I don’t think they would like to talk about it as well because you know you keep everything to yourself like that, private stuff so.’ Some service providers suggested that young people had a strong sense of loyalty to their family, linked to African cultural values, which meant that they were reluctant to talk openly about their experiences until a high level of trust had been built up:

They’re very good at keeping what is in the family to the family, and I think that’s also another cultural thing. They’re not willing to open up and speak to anybody very easily, and some of the things that you get from them may be fairly superficial until you build up a certain amount of trust.

These findings suggest that, because of the stigma and secrecy surrounding HIV as well as young people’s loyalty to their families, many young people caring for parents/relatives with HIV remain largely hidden and unsupported by friends, neighbours, teachers and other professionals. They often feel unable to seek informal support from their peers or other adults in the community in the context of both the global North and South. Some young people, particularly in communities severely affected by HIV and AIDS, have to deal with direct experiences of stigma and discrimination on an everyday basis, which can affect their emotional well-being and result in social isolation.

Effects of poverty on young people’s friendships and social participation

As noted earlier, many families interviewed in the UK lived in poor, overcrowded housing, which resulted in a lack of privacy. Some parents and young people felt that the lack of space and privacy made it difficult for young people to invite their friends to their house. For example, (p.199) Alice and her mother rented a single room in a shared house with five other tenants. Alice found the lack of space and privacy the worst aspect of home. Her mother highlighted the difficulty in keeping her HIV status a secret within such crowded living conditions and the implications of the lack of privacy when Alice invited her friends to their place:

We just have one room. It’s the same room that we live in, that we sleep in and it’s the sitting room. Everything happens in that room. For example, I have my drugs in the fridge and perhaps her friends come around and they ask her whether the drugs are hers. So it’s different for us.

Some parents and service providers in the UK also commented on the difficulties parents experienced in being able to afford leisure and social activities for their children, such as dancing, swimming, football, horse-riding, climbing or going out as a family.

Conclusion

The research in Tanzania and the UK suggests that the school attendance of many children in households affected by HIV and AIDS is disrupted by their caring responsibilities. Many children in Tanzania and some in the UK also reported negative impacts of their caring responsibilities on their academic performance, finding it difficult to concentrate on their school work because of tiredness and/or anxiety about their parent’s illness. Half of the children in both countries described how their caring responsibilities often conflicted with their time for private study.

Despite these negative impacts, over a third of children and most parents in both countries did not think that their parent’s illness or their caring responsibilities had any significant effects on their school attendance or academic performance. Most children and parents did not want teachers to know about their parent’s illness because of a fear of stigmatisation, as previous studies have found (Lewis, 2001; Cree et al, 2004). Children’s resilience, good school attendance and academic performance was thus related more to informal support from parents, peers and individual teachers, high aspirations, and the young person’s interests and motivation, rather than supportive institutional environments or sensitivity and awareness of young caregiving among school professionals.

(p.200) Most young people mentioned best friends and peers with whom they enjoyed spending time, and many valued school, college, church, youth clubs, leisure and extracurricular activities as places of respite from the difficulties they were experiencing at home. Children and parents relied on social networks with neighbours, family friends and members of their faith communities for material support and practical assistance with caregiving. However, many young people in the UK felt that their caring responsibilities restricted their social lives because of conflicts between their caring responsibilities and their own activities. Some children preferred to stay at home, close to their parent, rather than play with their friends, and parents were concerned that children’s spatial mobility and engagement with their peers was restricted. Some parents also expressed frustration that they did not have more energy to take their children out and do leisure and social activities with them.

Several young people in Tanzania experienced ‘stigma by association’, including bullying and ostracism from their peers and others in the community, which impacted on their emotional well-being and led to social isolation. Although direct experiences of discrimination were not mentioned by young people in the UK, the secrecy surrounding HIV significantly affected their ability to talk about their parents’ illness and seek support from friends, neighbours, school teachers and other professionals. Poverty, overcrowded housing and problems related to immigration and racism also had significant effects on children’s school experiences and opportunities for leisure and socialisation with their peers, revealing that families affected by HIV/AIDS face a complex array of problems that can result in the marginalisation and social exclusion of young people. The role of formal safety nets and external support in building the resilience of children and parents affected by HIV forms the focus of the next chapter.