Abstract
Children are one of the marginalized groups which are seriously affected by HIV/AIDS in the world. However, children are always regarded as passive objects of social structures, and few studies address children’s active roles in caring for their parents and relatives with HIV in the North and South.
From a comparative and cross-cultural perspective, Children Caring for Parents with HIV and AIDS: Global Issues and Policy Responses, written by Ruth Evans and Saul Becker, explores the similarities and differences between children caring for parents and relatives with HIV/AIDS in the context of Tanzania and the United Kingdom. Moreover, the authors analyze the experiences and resilience of the children under discussion, and highlight some key issues to promote policy and interventions in a more effective way. In the view of the authors, children should be seen as social actors who ‘actively negotiate their caring roles and responsibilities within the constraints and possibilities of individual, relational and structural factors’ (p. 68).
This thought-provoking book is divided into 10 chapters. In Chapter 1, the authors comprehensively review the literature on childhood responsibilities and summarize the relevant research. As they highlight, though the literature on children caring for parents and relatives with HIV/AIDS is growing, there is limited research on their specific experiences of this complex issue.
Before discussing the themes in the two case study countries, in Chapter 2, the authors analyze the multiple ways that the children and families are affected by HIV and AIDS within a global context. As the authors conclude, “HIV intersects in complex ways with social inequalities and differences of gender, age, race, sexuality, disability and religion” (p. 65). For instance, many children and families affected by HIV/AIDS have experiences of stigma and discrimination, and gain limited access to community networks.
Most interviewees in this book were children (aged 9–17 years) and mothers with HIV. In Chapter 3, the authors briefly illustrate the research methodologies and ethical norms raised by interviews and qualitative research, including measures taken to minimize the distress caused by sensitive topics during the interviewing process.
As the authors confess, the families interviewed both in Tanzania and the United Kingdom were “recruited through local non-governmental voluntary and community sector organizations” (p. 203). From the parents’ and children’s narratives, the authors focus on the impact of HIV/AIDS at the individual, household, and community levels. On the individual level, both children and their parents in Tanzania and the United Kingdom suffer stigma and discrimination; at the household level, they have limited access to humanitarian assistance and other social services; and at community level, they are both excluded by community to some extent.
The differences are not only reflected in terms of the differences between children in Tanzania and the United Kingdom, but also between the White children in the United Kingdom and children in African immigrant families living with HIV. First, children in Tanzania suffer more mental stress than those in the United Kingdom because, in Tanzania, only a few children “had the opportunity to meet other young people with caring responsibilities through youth groups” (p. 197). In contrast, in the United Kingdom, half of the children “had got to know other young people with caring responsibilities through their engagement with youth groups” (p. 198). Second, there are differences in the accessibility of education and financial support for children living with HIV. Since children in Tanzania have more limited access to financial support and other social services, they have little access to specific services from nongovernmental organizations (NGOs) and governmental organizations, and are inclined to withdraw from school. In contrast, children caring for parents with HIV in the United Kingdom heavily rely on NGOs and governmental organizations. Moreover, in the UK context, the negative impact on household economy and well-being of children caused by HIV/AIDS is “exacerbated by immigration policies” (p. 114), especially the children in African migrants families living with HIV were further marginalized by racial discrimination and harassment.
Chapter 4 explains how parents with HIV changed their identities within the family and community. The authors pay more attention to the stigma experienced by the mothers with HIV in Tanzania and the United Kingdom, which is conceptualized into three forms: “enacted stigma” (direct experience of discrimination from community and family members), “perceived stigma” (fear of stigma) and “self-stigma” (also called internalized stigma, someone infected with HIV imposing stigmatizing labels on himself or herself (p. 116). In Chapter 5, the authors suggest that the responsibilities of children caring for parents and relatives with HIV are similar, though children are in different socioeconomic contexts. At the same time, since there are gaps in living standards, children’s caring work in Tanzania “took longer and was more physically demanding than in the UK” (p. 149).
From Chapter 6 to Chapter 7, the authors explore the resilience and negative impact of children’s caring work and HIV/AIDS at the individual, household, and community levels. For many children, caring for parents and relatives with HIV in both Tanzania and the United Kingdom, extended family relationships are hard to access, especially in low-income communities with very limited welfare and finance support in Tanzania. They not only experienced social exclusion and marginalization, but also suffer from limited access to healthcare. In addition, their school attendance is also disrupted by their caring work.
As the former chapters discuss, informal safety nets are insufficient in the communities affected by HIV/AIDS, especially affected communities in the South and refugee families affected by HIV/AIDS in the North. In Chapter 8, the authors discuss the role of formal safety nets, which are NGOs, faith-based organizations, and governmental providers. Moreover, the authors advance some valuable approaches promoting resilience for children and families under discussion, such as holistic family supports, development of life skills and knowledge about HIV/AIDS, and communication with other children in similar situations.
Next, the authors analyze why children choose to care for their parents and relatives with HIV/AIDS in global and local contexts. Children’s caregiving to parents and relatives with HIV/AIDS varies in accordance with different contexts, which are reflected in the extent of caregiving, the time involved, and the negative impacts on children. Since there is a “universal healthcare system and provision of hospices and palliative care” (p. 149) in the United Kingdom, children there are less likely to provide intensive nursing care for parents with HIV. With regard to the time involved, children in Tanzania take more time in nursing care, and they are “more physically demanding than in the UK” (p. 149). Moreover, because of their African ethnicity, children in the United Kingdom, especially the children in African migrant families living with HIV, find it more difficult to share feelings or information with others outside their families.
In the final chapter, on the basis of interviews with children, parents, and service providers, the authors discuss the development of services and support for children caring for parents and relatives with HIV/AIDS, and analyze the corresponding difficulties. Then, the authors discuss some essential issues to improve the policies and interventions for children and families affected by HIV/AIDS, and argue that services and supports in the future should be ‘sensitive to the culturally diverse support needs’ (p. 305) of children and families living with HIV/AIDS.
This book presents three valuable contributions in the research with children caring for parents and relatives with HIV/AIDS. First, this book adopts a methodology both acknowledging children as social actors, and focusing on the constraints in individual, household, and community levels, and second, in a qualitative and comparative way, this book analyzes the similarities and differences of children caring for parents and relatives with HIV/AIDS in context of the North and South. There are some similarities, such as suffering stigma and discrimination, having limited accesses to financial support and social services, and being isolated by community to some extent. At the same time, there are differences in mental pressures and accessibility of necessary supports, which is not only between White children and African migrant children in the United Kingdom, but also between children in the United Kingdom and Tanzania; third, this book extends the scope of research by exploring several salient issues, including ethic of care and children and their families’ resilience.
However, the authors are “unlikely to have identified some of the most marginalized or isolated families” (p. 83), so what are the differences and similarities between children living in the most marginalized or isolated situation? Therefore, it should be necessary for the authors to consider the possibilities that children caring parents and relative with HIV/AIDS would interact with other fixed categories of vulnerable children (such as child soldiers and trafficked children). Today, many other countries affected by HIV/AIDS are hardest-hit areas of child trafficking and child soldiering, and children are unable to care for parents or relatives with HIV/AIDS, because they cannot gain access to any support provided by local non-governmental organizations, communities, or other organizations.
In brief, Children Caring for Parents with HIV and AIDS: Global Issues and Policy Responses will be of interest to scholars, researchers, social activists, policy makers, and students interested in childhood studies and international relations.