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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Why a Special Booklet for Caregivers?

by Myra Jacobs and Michelle Bishop


There are multiple reasons for publishing Caregivers' Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives. Since its founding in 1992, the National Bone Marrow Transplant Link (nbmtLINK) has had the opportunity to work with a host of remarkable people who filled "caregiver shoes." Early on, we were inspired by stories of BMT caregivers that demonstrated incredible spirit, dedication and perseverance. We asked ourselves, "How could the nbmtLINK address the unmet needs of BMT caregivers?" and "What could the nbmtLINK do to recognize and support the efforts of these caregivers?"

It is well known that in this environment of increasing outpatient care, the caregiver's responsibilities become closely woven into the BMT process itself. In addition, the health care team actually relies upon the caregiver to provide services for the patient. Studies have shown that the caregiver role is critical to the health, adjustment, and quality of life of the BMT survivor. Yet, the physical, emotional, and social impact of the disease and BMT treatment on the family often are not acknowledged. In fact, caregivers experience the same, if not more, distress than the survivors themselves and are usually less likely than survivors to get the help they need.

After much observation and discussion, we concluded that the creation of a special booklet was needed. By focusing on various perspectives, the booklet would offer insights into the BMT caregiver role while acknowledging and affirming its importance. In reality, caring for someone having a BMT is a unique commitment requiring extraordinary physical and emotional effort. The primary medical focus, of course, is directly on the patient, with the hope for a positive treatment. However, the challenge of a BMT for the caregiver becomes life-changing as well. BMT caregiving, depending on the type of transplant, may consume one's daily living for an extended time. Families may be subjected to intense emotions and challenges in the wake of BMT. Treatment may require lengthy stays at a specialized care center hundreds of miles from home. Families often face financial hardship as careers are put on hold and health care costs accumulate. Many caregivers struggle to balance caring for the survivor with raising children and tending to the household. The caregiving role is not a casual responsibility. It is a serious and ongoing promise. BMT caregivers may "wear the hat" of coach, nurse, nutritionist, companion, aid, driver, administrative assistant, spiritual counselor, advocate, and more. They may be signing on for weeks, months or even years of duty. It can be a sobering challenge and responsibility but clearly one worth the effort.

With regard to the long term picture, BMT family caregivers may continue to feel the impact of the cancer/BMT for months or years after the active caregiving stage is over. Although most are remarkably resilient, a substantial minority continue to be negatively impacted by the personal, family, and life changes that occur. Studies have shown that approximately 20% of BMT spouses report symptoms of depression many years after BMT. Many feel lonely with limited social support for themselves and describe fewer of the positive changes, such as new life meaning or personal growth, which many BMT survivors describe. It is important that BMT caregivers be aware that, like BMT survivors, they may experience long term "side effects" of the experience and should seek the help and support that they need and deserve.

In creating this booklet, we hope to address the educational and emotional needs of BMT caregivers to help them successfully cope with their caregiving journey and to know that they are not alone. Through this publication, we hope to:

  • Elevate and legitimize the role of the caregiver.
  • Encourage interventions that permit the BMT caregiver to participate as a member of the health care team.
  • Encourage family members, friends, and the community to support the caregiver's efforts and provide some release from daily responsibilities.
  • Empower caregivers to seek psychological counseling for themselves when needed. It is a sign of strength, not weakness to ask for help.
  • Encourage caregivers to utilize community resources for educational and emotional support.
  • Educate caregivers as to why it is vital to take good care of themselves.
  • Recognize the potential rewards of the caregiver role in terms of personal growth, family cohesion, and a new appreciation for life.
  • Reinforce the fact that caregivers are not alone in their circumstances. While BMT patients may follow an arduous road to recovery, BMT caregivers walk a parallel path with their own set of unique challenges. With this booklet of practical perspectives, we hope we have made the caregiver journey an easier one.

    Myra Jacobs, MA, is the Founder and Executive Director of the National Bone Marrow Transplant Link (nbmtLINK). She has been involved in non-profit management, program development and fundraising for over 30 years. Her interest in bone marrow transplantation began while on staff at the Children's Leukemia Foundation of Michigan for over 10 years. Inspired by the plight and courage of bone marrow transplant patients and families and recognizing their need for information and support, she founded the National Bone Marrow Transplant Link in 1992.

    In 2004, Myra received the National Public Service Award from the American Society for Blood and Marrow Transplantation. She is currently a member of the Consumer Advocacy Committee of the Center for International Blood and Marrow Transplant Research (CIBMTR). She is a graduate of the University of Michigan and holds a Master's Degree in Guidance and Counseling from Oakland University.

    Michelle M. Bishop, PhD, is Research Assistant Professor in the Departments of Medicine and Clinical and Health Psychology, at the University of Florida, Gainesville, FL. A licensed clinical health psychologist, Dr. Bishop has 12 years of clinical experience helping patients and families with the psychosocial aspects of acute and chronic illness and its treatment, particularly cancer and blood and marrow transplantation (BMT). She served for four years as the project coordinator of the largest study to date of the long-term quality of life (QOL) of BMT survivors and their spouses, a multi-site project funded by the National Cancer Institute (NCI) involving 40 BMT centers in North America. She recently received her own grant from NCI to conduct an in-depth follow up study of the couples enrolled in the aforementioned study to better understand the losses and gains they experienced. She also has conducted qualitative expressive writing studies with BMT spouse-caregivers in the transition phase home after BMT. She currently serves on the Late Effects/QOL subcommittee for the Blood and Marrow Transplant Clinical Trials Network State of the Science Committee and is a member of the Late Effects/QOL committee of the Center for International Blood and Marrow Transplantation Research. Dr. Bishop has received several awards for her research and has presented her work at a variety of state and national meetings. Her research interests include the long-term QOL, health behaviors, and positive changes experienced by cancer/BMT survivors, as well as, the short-term and long-term impact of cancer/BMT on the QOL of spouse-caregivers and the development of support services for BMT families.

    Back to Caregivers' Guide Main page


  • Table of Contents

    Acknowledgements

    Foreword

    Why a Special Booklet for Caregivers?

    My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

    Tackling the Challenge: A Husband's Perspective

    Cancer Etiquette: A Survivor's Perspective on Effective Communication

    Top Tips for Parent Caregivers: A Mother's Perspective

    Another Way to Say I Love You: A Wife's Perspective

    Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

    Relying on a Family of Strangers: A Patient's Perspective

    Symptom Management for Caregivers: An Oncology Nurse's Perspective

    How to Be a Successful Family Caregiver: An Advocate's Perspective

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