In the Shadow of Illness [Hardcover]

Myra Bluebond-Langner (Author)

Book Description

Publication Date: October 14, 1996 | ISBN-10: 0691027838 | ISBN-13: 978-0691027838 | Edition: 1

"This book powerfully illuminates the everyday experience of families living with a chronicallyill child."--Patricia A. Marshall, Associate Director of Medical Humanities Program at Loyola University Chicago, Strich School of MedicineWhat is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease's intrusion.The Private Worlds of Dying Children, Bluebond-Langner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness--from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives.Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and howthey relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.

Editorial Reviews

Review

"I strongly recommend this book to anyone involved with families of children with CF and potentially with other chronic life-threatening illnesses. There is no question that it provides new and valid insight concerning parent and sibling adaptation." -- Omega

"In the Shadow of Illness is a beautifully written, well-organized book that is an outstanding contribution to our understanding of the impact of chronic illness on the family.... An important source of information and understanding for families who find themselves in the shadow of illness." -- Bulletin of the Menninger Clinic

"Myra Bluebond-Langner gives us a framework of understanding how families--siblings as well as parents--move through their understanding of the condition, and their coping strategies, by redefining 'normal' family life to include routine CF care and reassessing their family priorities. She has done this with great skill and sensitivity." -- Clinical Child Psychology and Psychiatry

An important contribution to the ethnography of illness experience. . . .This book will be of great value to researchers and clinicians with interests in how families cope with chronic illness, life-threatening conditions, and genetic disorders. -- Review

This book powerfully illuminates the everyday experience of families living with a chronicallyill child. -- Patricia A. Marshall, Associate Director of Medical Humanities Program at Loyola University Chicago, Strich School of Medicine

From the Publisher

What is it like to live with a child who has a chronic, lifethreatening disease? What impact does the illness have on well siblings in the family? Myra BluebondLangner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease's intrusion.

The Private Worlds of Dying Children, BluebondLangner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illnessfrom diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives.

BluebondLangner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and lifethreatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.

See all Editorial Reviews

Product Details

• Hardcover: 328 pages
• Publisher: Princeton University Press; 1 edition (October 14, 1996)
• Language: English
• ISBN-10: 0691027838
• ISBN-13: 978-0691027838
• Product Dimensions: 9.8 x 6.5 x 1.1 inches
• Shipping Weight: 1.5 pounds
• Average Customer Review: 4.7 out of 5 stars  See all reviews (3 customer reviews)
• Amazon Best Sellers Rank: #2,586,190 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

6 of 6 people found the following review helpful:

5.0 out of 5 stars As a pediatrician, I find this book a great asset., April 14, 1999

By 

Morris A. Wessel, M.D. - See all my reviews

This review is from: In the Shadow of Illness (Hardcover)

This book delineates how often we physicians in our efforts to serve a family with a child with a serious illness or a chronic problem forget that there are other children in a family who need our services. One woman at 27 told me that during her childhood when she came to see me in my office my first words were "How's your sister?" I never felt as tho I had a mother a father or a doctor in those days". How right she was. If I had read this book I never would have made this error. It is a must for all pediatricians. Morris Wessel, M.D.

4 of 4 people found the following review helpful:

5.0 out of 5 stars A useful resource for parents of CF kids, February 13, 2000

By 

Maxine Phillips (Sydney, Australia.) - See all my reviews

This review is from: In the Shadow of Illness (Hardcover)

I really enjoyed this book. As a parent of a child with Cystic Fibrosis I found this book to be useful. It allowed me to see into the lives of other families living with CF, to see the different stages that parents and those affected with CF go through during the course of the disease.

1 of 1 people found the following review helpful:

4.0 out of 5 stars For parents and siblings of children with chronic FATAL diseases, January 12, 2007

By 

Minipups2 "minipups2" - See all my reviews

Amazon Verified Purchase

This review is from: In the Shadow of Illness (Paperback)

This book is well written and contains much interesting and useful information, but it was not exactly what I was looking for. There are two types of chronic illnesses: fatal chronic illnesses, such as cystic fibrosis, where the individual has the disease for much of their life, but toward the end the disease worsens and the person dies; and non-fatal chronic illness, such as asthma or diabetes, where the person must deal with the disease for their entire life, but it is not necesarily the disease that causes death. This book is about fatal chronic illness, specifically cyctic fibrosis. I was looking instead for a book about non-fatal chronic illness.

This book contains a wealth of information about how the child with cyctic fibrosis (CF), the siblings of a child with CF, and the parents of both ill and healty children manage, psychologically, through the lifetime of the child with CF. The author traces the progression of the disease and the reactions of the entire family as the child is diagnosed, the child has an evaluation at the one year point from diagnosis, the child enjoys relative health, the child begins to worsen, the child continues to worsen, the family is told the child is terminal, and the child dies. The information is presented from all viewpoints of those within the family. As a parent, I found it very helpful to see how well siblings handled such things as the increased attention given to the ill child and the ill child's eventual death. I can see that this information would be very valuable for parents with a child or children with CF and also healthy children, and I would think parents of children with other chronic, progressive, fatal diseases (such as cancer) would also find much helpful information. However, I have a younger son with a chronic non-fatal disease and a healthy older daughter, and the information was moderately helpful to me. My son will not die from his disease, but it heavily affects his day to day living. I bought this book expecting to read more of the chronic aspects of disease. Although the parts about deterioration and dying were very informative, they were not as helpful to me.

I would definitely recommend this book to parents of children with CF as well as parents of children with other chronic fatal disease. Parents with children with chronic non-fatal disease will find some helpful information, but I am not sure this would be the best choice for them.