I want to be like the others - Waverley Care

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1717I want to be like the othersno agreed definition of a young carer, and organisations vary in the definition theyadopt. In a study of the mental health needs of 61 young carers in Scotland, Cree(2003) found that the young carers who attended a community-based support projectidentified significant ‘worries and problems’ in relation to their well-being. Additionally,these were portrayed as over and above what might be thought to be ‘normal’adolescent difficulties. More specifically, the number and extent of problems andworries identified by young carers were influenced greatly by the length of time theyhad been caring for a family member, and by the nature of their parent’s illness orcondition. So, for example, almost all categories of problems were found to increaseaccording to length of time caring; meanwhile, caring for a parent with a stigmatisedcondition such as a drug or alcohol problem led to many more worries for youngpeople than a more socially acceptable condition such as physical disability.Cross-national research on young carers in the UK, Australia, the United States andSub-Saharan Africa suggests that children’s informal caring roles in both developingand developed countries can be located along a ‘caregiving continuum’ (Becker,2007: 32). Becker concludes that there is a need in all countries for young carers tobe recognised, identified, analysed and supported as a distinct group of ‘vulnerablechildren’ (2007: 43). More recently, Evans and Becker (2007 and 2009) have focusedon children caring for a parent with HIV/AIDS, again cross-nationally, this time in thecontext of the UK and Tanzania. In this study, interviews were conducted withchildren, parents/relatives and professionals; in total, 22 children and young peopletook part in Tanzania and 11 in England (in Greater London, the South-East, Eastand West Midlands). The researchers argue that in spite of very different socioeconomic,cultural and policy contexts, children caring for parents with HIV inTanzania and the UK share experiences in terms of their everyday caringresponsibilities, needs and aspirations. They find that caregiving has negative effectson children’s emotional well-being, health, school attendance and academicperformance, engagement in leisure and social activities with their peers,relationships with family members and others in the wider community. But all is nottotally negative. Many children said they felt they had gained from their caringresponsibilities in terms of closer relationships with their parent/relative with HIV,siblings and other family members. Moreover, they felt that they had become moreindependent, mature and had developed greater emotional resilience and knowledgeand understanding about HIV/AIDS (2007: 3).
I want to be like the others2.4.2 DiscussionThis section began with an acknowledgement that there has been little systematic orlarge-scale investigation of affected children in the UK. Beyond attempts to estimatenumbers of affected children in the mid 1990s, most studies have been qualitative,small-scale studies. Nevertheless, these studies provide extensive information aboutthe difficulties at home, at school and in the community which HIV presents tochildren affected by HIV at home, at school and in the community. Whilst somestudies have highlighted young carers within this, others draw attention to the veryspecial nature of stigma around HIV, and the ways in which this impacts on the livedexperiences of affected children. Furthermore, the recent consensus documenthighlights the worrying fact that the difference between affected and infected childrenmay be a matter of testing, not reality.2.5 Summary and postscriptThe main finding from the scoping study of research and ‘grey’ literature on infectedand affected children is that HIV continues to carry considerable risks and challengesfor both infected and affected children. Although infected children inevitablyexperience additional issues arising out of their own health and well-being, HIVbrings stress and disruption to the relationships and childhoods of infected andaffected children alike, not least because of the all-pervasive nature of HIV stigma.Looking ahead, it seems likely that as parents and children live longer with HIV, soHIV may increasingly become perceived by government agencies and serviceproviders as a manageable, long-term illness like any other and financial support toorganisations which work with families with HIV may be reduced. This would be anextremely unfortunate outcome, given the identified and increasing needs of childrenand young people living with HIV.At the time of writing this research report, two government-backed policy documentshave emerged on HIV in Scotland. The first is a needs assessment of treatment andcare services required for people with HIV, conducted by the Scottish Public HealthNetwork (ScotPHN), at the request of the Chief Medical Officer. The aims of theproject are stated as follows: to look at epidemiological data (number of people livingwith HIV etc), comparative data (what happens in other areas/countries) andcorporate views (mainly views of those involved with the delivery of services) toascertain what services are currently available and to look at what services will berequired in the future. The needs assessment has now been made available as a1818
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