In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child

by Myra Bluebond-Langner

Book Overview

A revealing account of how families adapt to living with a chronically ill child

What 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...

• Format: Paperback
• Language: English
• ISBN: 0691050791
• ISBN13: 9780691050799
• Release Date: May 2000
• Publisher: Princeton University Press
• Length: 328 Pages
• Weight: 1.05 lbs.
• Dimensions: 0.7" x 6.2" x 9.2"

Customer Reviews

For parents and siblings of children with chronic FATAL diseases

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.

A useful resource for parents of CF kids

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.

As a pediatrician, I find this book a great asset.

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.