This ground-breaking book focuses on the experiences and perspectives of children and young people who care for a parent with HIV in the global North and South. Drawing on in-depth qualitative research from the UK and Tanzania, the book presents a unique insight into the similarities and differences in children’s and parents’ experiences across diverse socio-economic, cultural and welfare contexts.
The book makes a significant contribution to the growing research evidence on children and young people with caring responsibilities (’young carers’) and the impacts of HIV and AIDS on families globally. It examines caring relationships within families affected by HIV and AIDS; the outcomes of caregiving; children’s and families’ resilience; the factors influencing whether children become involved in care work; and local and global policy responses. It also provides insight into the perspectives of parents living with HIV and service providers working with families.
This book will be of interest to policy makers and practitioners in the field of HIV and AIDS, and to researchers, academics and students concerned with international development, social policy, human geography, childhood and youth studies, social work, health and social care, education, children’s services and nursing and palliative care.
Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them.
Children caring for parents with mental illness makes an invaluable contribution to the growing evidence base on parental mental illness and outcomes for children. It:
• is the first research-based text to examine the experiences and needs of children caring for parents with severe mental illness;
• provides the perspectives of children, parents and key professionals in contact with these families;
• reviews existing medical, social, child protection and young carers literatures on parental mental illness and consequences for children;
• provides a chronology and guide to relevant law and policy affecting young carers and parents with severe mental illness;
• makes concrete recommendations and suggestions for improving policy and professional practice;
• contributes to the growing evidence base on parental mental illness and outcomes for children and families.
This chapter reviews the literature on childhood responsibilities, informal care, and young caregiving and introduces key theoretical perspectives, such as the social construction of childhood and youth, the ethic of care, and risk and resilience discourses, which are drawn on in the analyses of children’s and young people’s caring responsibilities in families affected by HIV/AIDS. It notes that the significance of the family as both an institution of welfare and for caregiving, exists almost irrespective of the country’s familial, social, and sociopolitical structures, although what is expected of family members and what they must do as carers is related to the formal and informal resources available to families. The chapter explains that while there is a high degree of acceptance when adults take on unpaid caring roles, children’s and young people’s involvement in caring for parents and relatives in the global North and in the global South challenges norms of childhood and youth.
This chapter examines the social dimensions of the HIV/AIDS epidemic and the multiple ways that these affect the lives of children and families, within the global context. It summarizes the dynamics of the epidemic in two case-study countries, Tanzania and the UK, and discusses key themes emerging from the literature on the impacts of HIV and AIDS on children and families globally. The chapter focuses on the diverse ways that children and families are affected by HIV and AIDS at the household level. It explores the embodied experiences of people living with HIV and AIDS and the particular dynamics of parenting in this context.
This chapter provides a reflexive account of the research process and discusses the research methodology. It reflects on the stance of the authors and their approach to the research topic. The chapter also describes the process of gaining access to families and negotiating informed consent to participate in the study, as well as researcher/researched relations. It then highlights some of the ethical issues raised by cross-cultural research and interviewing respondents about sensitive topics, including the importance of confidentiality and anonymity, and the need to manage respondents’ expectations. The chapter describes the main characteristics of interviewees and the locations for the research, as well as the approach to data analysis and dissemination.
This chapter draws on a range of theoretical concepts to interpret the everyday lived experiences of women living with HIV. It focuses on the effects of HIV on family life based on in-depth interviews with mothers and female relatives living with HIV in Tanzania and the UK. The chapter explores women’s changing health identities over time, from discovery of their status, their embodied everyday experience of HIV and AIDS, to secrets and disclosure within the family. It discusses changes in family relationships and the wider socioeconomic factors that intersect with HIV/AIDS at the household and community levels, including poverty and welfare support, migration, stigma, and discrimination.
This chapter discusses young people’s everyday caring responsibilities within households affected by HIV/AIDS in both the global North and South. It highlights similarities and differences between children’s experiences within two divergent socioeconomic and welfare contexts. The chapter discusses the range of support that children provide for their parents/relatives, and explores gendered and temporal aspects of children’s care work, drawing on young people’s narratives, diaries, drawings, and photographs of their daily routines and caring responsibilities.
This chapter draws on the concept of resilience in examining the effects of children’s care work for individual children and young people, focusing on their emotional well being, health and welfare, personal development, aspirations and priorities for the future, as well as the effects on family relationships. It notes that there has been growing recognition that not all young carers experience negative outcomes, and some researchers suggest that a resilience perspective may help to explain individual differences in coping with adversity.
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.
This chapter focuses on the role of formal safety nets and external support from the non-governmental community – and faith-based organizations and governmental/statutory providers in building the resilience of families affected by HIV/AIDS within the context of the North and South. It examines the different services and support that children and parents/relatives with HIV accessed in Tanzania and the UK. The chapter identifies practices and approaches that aim to build on children’s and families’s strengths, enhance resilience, and promote protective factors with different domains, including the community, school, family, and for individual children, by drawing on service providers’ and families’s experiences.