Family care in HIV/AIDS: Exploring lived experience.

Abstract

Family Care in HIV/AIDS: Exploring Lived Experience. Premilla D'Cruz. New Delhi, India: Sage. 2004. 218 pp. ISBN 0-7619-3233-X. $44.95 (paper). The purpose of this important book is to describe family care in HIV/AIDS through lived experiences of caregivers and care receivers in India. The author has a well-established research record on families and the health care system in India. This study, conducted in Mumbai, India, is based on interviews with 10 caregivers and seven care receivers who come from diverse socioeconomic groups and family settings. The book consists of seven chapters. The first three introduce and contextualize the study in HIV/AIDS family care. Chapter 1 begins with a thorough review of the literature on caregiving with particular attention to types of caregiving relationships. Responding to caregiving research's focus on negative outcomes, the author expresses a need for a more comprehensive view of caregiving, including both its positive and negative aspects. This chapter ends with a discussion of methodological limitations of research on caregivers. Chapter 2 examines the unique challenges of HIV/AIDS family care. It begins with a discussion of stigma surrounding HIV/AIDS. This chapter presents epidemiologic data on the heterosexual epidemic in India, with specific attention to the growth in cases among monogamous, married women. Most of HIV/AIDS services in India center around primary prevention provided mainly by public and, to some extent, voluntary health sectors. These services have proven to be inadequate in controlling the epidemic in India. Because HIV/AIDS treatment and support services are limited, families must provide care and endure the costs for ill family members. The intricacies of HIV/AIDS family care are brought out effectively in this chapter. The third chapter discusses the strength of qualitative methods in capturing the dynamics, complexities, and contexts of families. Experiential interview material is obtained from conversational interviews with HIV/AIDS family caregivers and care receivers. The author follows van Mahen's hermeneutic-phenomenological approach in order to analyze narratives, grasp meanings, and derive themes. The qualitative approach used in this study serves well to capture the challenges and constraints in HIV/ AIDS family care. The book's essential core is the next section, which consists of three chapters that present and analyze material from the narratives. Chapter 4 includes narrative excerpts from receivers of HIV/AIDS care. Two themes in the experience of HIV/AIDS care receivers are identified: losing autonomy and redefining family relationships. The fifth chapter provides accounts from HIV-negative caregivers who describe prolonging the life of their loved ones as the very core of their experience. …