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 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.
This chapter discusses the findings in this book and locates them in a broader context of how professionals might identify and respond to the needs of parents with mental illness and children who may have to care for them. It offers a model, or mapping device, which will be of practical use to professionals in these fields, to help with the more effective and sensitive intervention in meeting the needs of families where parents have mental illness and where children provide care. While the mapping device offers a practical way forward for professionals, the position of parents with mental illness and children who care for them must also be placed within a broader socio-political context.
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 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 looks at the role of professionals and their relationships and interventions with parents and young carers. It argues that, to understand why and how children care for parents with mental illness, one must understand what goes on within families by reference to the perspectives of those who provide and receive family care, as well as those professionals who are charged with the formal care and support of vulnerable parents and children. It also presents data on the changing needs and experiences of families and the implications of these for policy and practice.
The General Assembly of the United Nations adopted its Convention on the Rights of the Child on 20 November 1989. The wording of the Convention which was agreed on that occasion had taken 10 years to draft, and the working group charged with the task was itself building on earlier work which the League of Nations had begun when a declaration on children’s rights was adopted back in 1924.
The UN Convention on the Rights of the Child does not occupy a very prominent place in the popular consciousness in Britain. Nevertheless the Convention is the nearest thing there is to a commonly agreed statement by the world community on its obligations to its children and young people. It runs to a total of 54 articles. Several of these are directly relevant to the position of young carers. Article 31, for example, recognises the right of children ‘to rest and leisure’ and to engage in play and recreational activities appropriate to their age. Articles 28 and 29 lay down the right of the child to education towards “the development of the child’s personality, talents and mental and physical abilities to their fullest potential”. Article 24 is about the child’s right to the highest attainable standard of health. Article 16 sets out a child’s right to privacy. Article 12 stresses the right of children to have their own views taken into account. Other Articles cover such areas as family life, responsibilities of parents, children’s right to information and much else. This chapter, however, will be concerned with the implications of Article 4.
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 explores the processes and factors that influence whether and why young people take on caring responsibilities in families affected by HIV/AIDS. It explores the perspectives of young people, parents/relatives, and service providers on the factors and changes in family life that led to the commencement of young people’s caring trajectories within families in Tanzania and the UK. The chapter also analyses the wider structural and relational aspects that affect the socioeconomic, cultural, and policy context of young caregiving at the global, national, and local levels.
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.