1st Edition

Fading away The Experience of Transition in Families with Terminal Illness

By Betty Davies PhD. Copyright 1995
    152 Pages
    by Routledge

    152 Pages
    by Routledge

    This book comes out of an in-depth, qualitative study of the experiences of twenty-three families in which one parent was dying of cancer. The study attempted to better understand the impact of terminal illness on the entire family system and sought to develop a theoretical framework that would guide the assessment of and services to such families. As a result of interviews with patients, spouses and their adult children over three phases of the study, the process of ""fading away"" was identified and conceptualized in terms of various phases which contributed to this process. The book is not a research report but rather presents more generally the ideas that developed from the study, with two purposes: to increase the reader's understanding of particular experiences that families encounter when dealing with terminal illness, specifically cancer. The intended readership also includes families themselves: to propose guidelines for care to be considered by practitioners working with such families.

    Preface

     Acknowledgment

     Introduction

    CHAPTER 1 Fading Away

    CHAPTER 2 Redefining

    CHAPTER 3 Burdening

    CHAPTER 4 Struggling with Paradox

    CHAPTER 5 Contending with Change

    CHAPTER 6 Searching for Meaning

    CHAPTER 7 Living Day-to-Day

    CHAPTER 8 Preparing for Death

    CHAPTER 9 When the Children are Teenagers

    CHAPTER 10 Family Functioning

    CHAPTER 11 Location of Care

    CHAPTER 12 Challenges of Conducting Research in Palliative Care

    Appendix I  Research Design

    Appendix II Interview Guidelines

    Appendix III Case Studies 

     

    Biography

    BETTY DAVIES has worked as a nurse, specializing in the area of death, dying, and bereavement for over twenty years. Her doctoral dissertation from the School of Nursing, University of Washington in 1983 and a postdoctoral fellow at the University of California—San Francisco in 1986 formed the basis for her seminal work pertaining to bereavement in siblings following the death of a child. She is a Founding member of the Board of HUGS Children’s Hospice Society, whose major work is the establishment of Canuck Place, the first free-standing hospice for children in North America. In addition, she has conducted several studies in palliative care focusing on the families of both adult and child patients. The goal of her research is to translate research findings into practical terms as a means of achieving her goal of optimizing the care provided to those who are terminally ill and bereaved. JOANNE CHEKRYN REIMER completed a Master’s in Nursing degree from the University of Washington. Her studies focused on working with families where a member had advanced cancer and wished to remain at home during their final days. She worked in palliative care in several different capacities: as an Assistant Professor at the University of British Columbia, as the Hospice Nursing Consultant and Hospice Program Coordinator for the Vancouver Health Department Hospice Program, and currently as the Bereavement Care Coordinator for Canuck Place, a hospice for children in Vancouver, British Columbia. She has numerous publications that focus on family issues and cancer. PAMELA BROWN graduated with a Bachelor of Science in Nursing from the University of Manitoba in 1980. Subsequent work experiences focused on care of the chronically and terminally ill with organizations such as the Victorian Order of Nurses Home Palliative Care Program. She completed a Master of Science in Nursing with a clinical specialization in palliative care at the University of British Columbia in 1986. She commenced work as a Clinical Nurse Specialist in Palliative Care at the Vancouver Health Sciences Center, and it was at this time that she began her involvement with the “Families in Supportive Care Project”. In 1988, she moved to Calgary to assume her current position of Assistant Director of Calgary Health Services—Home Care Division. NOLA MARTENS completed her Masters of Science in Nursing in 1988 from the University of Alberta. She has worked with families and patients with cancer for many years as a staff nurse and as an enterostomal therapist. She has also been involved with oncology nursing education and new staff training in a regional cancer institute. More recently, she was the Research Associate for the “Families in Supportive Care Project.” At the present time, she is a research assistant for a study related to adolescent risk taking behavior.