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Kanouse, S. Morton, S. Bozzette, A.

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Miu, G. Scott, and M. HIV-infected parents and their children in the United States. American Journal of Public Health 90 7 : — Their hard work and cooperation enabled this book to be realized. I am very grateful to John Michel at Columbia University Press for his encouragement and good humor, and to Gregory McNamee for copyediting with precision and calmness. I would especially like to thank Bernadette Capelle for her belief in the value of this collection.

Without their support of my research and advocacy, this book would never have been conceived or realized. My debt to these caregivers is great.

By sharing their stories they gave me the gift of being a witness to their lives. I hope that this book will extend my pledge of advocacy on their behalf. I am especially grateful to friends and colleagues for their consistent and generous support. Thanks also to Neill Rosenfeld for his calm and helpful responses. I express special gratitude to Livia McGinnis for her wisdom, strength, and counsel.

I gratefully acknowledge the support received through a grant from the William Paterson University Center for Research. The devotion of families is at the heart of this book.


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To my daughters, Emily and Sophia Joslin-Roher, your pride in and appreciation of my work gave me sustenance and joy. Thanks also to Sophie for her organizational assistance and computer savvy. I am grateful for her friendship and honor her own commitment to social justice.

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Finally, this book honors the legacies of my parents, Vera Signorelli Joslin, R. In these roles he was involved in the direct delivery and supervision of permanency planning services to families affected by AIDS.

Wendy C. Budin received her Ph. She is an expert in maternal child nursing and computer applications in nursing and has published widely in these areas, as well as in nursing research and patient care. Gloria Caliandro received her Ed. She is an expert in community health and is the primary author and editor of Primary Nursing Care Scott Foresman, Before her retirement, she was associate dean and associate professor in the College of Nursing at Seton Hall University. Mathilda Braceros Catarina is associate professor and director of the graduate program in counseling services at William Paterson University of New Jersey.

She received her Ph. Rachel Davis Carol E. Terence I. Doran, Ph. His published research includes topics related to HIV as it affects families, children, and migrant seasonal farm workers in South Texas. DSW, is the founding executive director of the Family Center, which serves families throughout New York City by supporting parents, their children, and future caregivers in the transitions resulting from serious illness. Phyllis Shanley Hansell received her Ed. Previously she held the position of director of nursing research at Memorial Sloan-Kettering Cancer Center. She is widely published in the area of care of seriously ill children and their families.

Ruth Harrison received her Ph. Her areas of research include health promotion among HIV-infected persons and spirituality and health. An expert in tests and measurement, he has published widely in the area of research instrument evaluation. Bruce Hartman Bert Hayslip Jr. He is regents professor of psychology at the University of North Texas.

She has been involved in the design, implementation, and evaluation of services for families affected by AIDS for more than ten years. She is a pediatric nurse practitioner and professor of nursing at California State University, Los Angeles. Cynthia B. Hughes Daphne Joslin received her Ph. She is currently associate professor of community health and director of the Institute for Creative Aging at William Paterson University of New Jersey.

Nathan L.

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His research about older adults, caregiving, case management and HIV includes numerous articles and three books, including Wages for Caring: Compensating Home Care for the Elderly with S. Keigher, S. England, and L. Simon-Rusinowitz; Greenwood Press, He is now assistant professor of sociology at William Paterson University. Sally Mason received her Ph. She is the assistant director of community medicine at a large urban New Jersey medical center. In this capacity she oversees all outpatient HIV programs for children, adolescents, adults, and their families. Carol Mevi-Triano received her Ph.

Namposya Nampanya-Serpell Elizabeth C. Paskas, R. She worked as a treatment care manager in Passaic County, New Jersey, where she developed programs to assist people with HIV to adhere to their treatment regimens. She now works at the Hackensack University Medical Center. She continues her efforts to educate the community on the issues surrounding people with HIV and their families. MSW, Ph. Phyllis Russo received her Ed. Despite glaucoma, arthritis, osteoporosis, and chest and back pain, she has not been to a physician in more than four years, except for a fractured ankle.

A widow living on Social Security, she cannot afford private health insurance, is too young for Medicare, and has an income that exceeds Medicaid eligibility limits.

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Uncertain of how to move forward with her life, she stays away from home as much as she can, running errands, window shopping, and looking for craft projects so that she can keep busy. Her house has too many memories, and the depression she thought would lift after the Christmas holidays has continued into the early spring. Also widowed, she is the sole caregiver for her eight-year-old granddaughter, Julia.

After Mrs. Julia watched the ambulance take her dying mother away.

Care and Support for AIDS Orphans

The child then threatened to jump off her loft bed. But my sister is a cold person and not sympathetic. Crimeri does not know whether Julia is infected. What would be said to her about the test? Does the school tell the child? Would I have to inform the school [if she tested positive]?

Children - HIV/AIDS - Research Guides @ Fordham at Fordham University Libraries

I am healthy now, but. Employed as a caseworker at a group home for adolescent girls, Ms. I never have time for myself. Davis enjoys talking about her granddaughter, although she feels overwhelmed by the responsibility of caring for her. And I enjoy her company. But I feel like a prisoner. I try hard not to be resentful.