Invisible Caregivers: Older Adults Raising Children in the Wake of HIV/AIDS

Author: Daphne Joslin
Published: February 2002
Publisher: Columbia University Press
ISBN: 0231119364
Hardcover Book
Number of Pages: 288

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An understudied aspect of the HIV/AIDS epidemic is the creation of hundreds of thousands of grandparent-headed households that have become home to children bereft of one or both of their parents. Such "skip-generation parenting" presents a host of challenges to the families involved and the social programs designed to assist them. Despite this unprecedented caregiving responsibility, older surrogate parents remain relatively invisible, hidden in the shadows of HIV care and the demands of raising a child. The primary goal of Invisible Caregivers is to generate, support, and guide program and policy initiatives designed to meet the needs of elder surrogates and their families.
Most social service programs are not able to identify the needs of older surrogates, often because these surrogate parents in HIV-infected families are reluctant to make their needs known for fear of social stigma or possible reductions of benefits. Multiple systemic barriers to case management and other services also frustrate attempts to bring available resources to elder caregivers. These barriers include professional ignorance or denial that HIV affects surrogates, eligibility restrictions through CARE, limited funding and age restriction on OAA, and a fragmented health and human service system. Because the issues facing elder caregivers are many and varied, this collection covers a host of issues: community health, aging, HIV services, child welfare, education, public policy, and mental health. Older surrogate parents in HIV-infected families are reluctant to make their needs known because this can lead to a reduction of benefits, and most helping professionals are not able to identify their needs. This collection covers a variety of issues facing elder caregivers: community health, aging, HIV services, child welfare, education, public po
With AIDS having left some 150,000 US children orphaned in 2000, grandparents, great-grandparents, and great-aunts often serve as surrogate parents. In exploring the collateral health and social aspects of the AIDS epidemic, these 15 papers examine the neglected needs of these older "secondary survivor" caregivers. In her contribution, based on interviews with grandparents raising HIV- affected/-orphaned children, Joslin (community health, William Paterson U., NJ) proposes broad-based empowering coalitions and a reframing of the standard gerontological paradigm to breach service barriers to this neglected population.

Table of Contents
Preface
Acknowledgments
List of Contributors
1 Introduction 1
2 Caregiving Profiles 27
3 Stigma, Isolation, and Support for HIV-Affected Elder Parental Surrogates 42
4 Death and Bereavement Issues 64
5 Physical Health and Emotional Well-Being 90
6 Stress and Social Support in Older Caregivers of Children with HIV/AIDS: An Intervention Model 113
7 Caring for the HIV-Infected Child 130
8 Their Second Chance: Grandparents Caring for Their Grandchildren 151
9 Custody and Permanency Planning 170
10 Case Management Challenges and Strategies 187
11 Caregivers and the Educational System 205
12 Immigrant and Migrant Families 228
13 Policy Implications for HIV-Affected Older Relative Caregivers 248
14 Global Implications 278
15 Conclusion 297
Index 307

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