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In the Shadow: The parents and siblings of chronically ill children
By Myra Bluebond- Langner, PhD, Princeton: Princeton University Press, 1996, 302 pages, $19.95.
In the Shadow: The parents and siblings of chronically ill children is a book where the author takes on the task of looking at a chronically ill child through the eyes of the immediate family. Although the book’s title gives one the impression that more than one chronic illness would be discussed, the book’s primary focus is on families with children who have cystic fibrosis. After a brief introduction, nine families examine reflectively in a series of chapters where they are- as far as coping with the illness- and how they got to that point.
From one angle, Bluebond-Langner examines the point of view of the caretaker. Not only does Bluebond-Langner explore their feelings about having a child with a chronic disease, but she also has them share their frustration over the restraints that the illness enforces on the entire family. Bluebond- Langner goes further and asks parents to offer their opinions about how informed or uninformed all of their children are about cystic fibrosis. Parents also examine the coping mechanisms of all family members including themselves. The interviews conducted were not done as a counseling session but as informal discussions, often in a waiting room area of a hospital. Through talking to Bluebond-Langner, some parents do experience a realization of some situations that have risen in the home that are a direct result of cystic-fibrosis, however, most are simply reporting information regarding their family’s functioning as they know it at that time. The parents generally recall struggles with disbelief, acceptance and adaptation within their daily routine.
Another unique aspect of this book is how well the author incorporates conversations that she has with the children into each of her nine case studies. Often Bluebond-Langner provided extensive dialogue from the children that included not just what they knew about the ill sibling’s condition, but also their opinions and understanding of the family dynamics. Subtly, Bluebond-Langner juxtaposes the views of the parents with those of their children. From both the point of view of the well children and the parents, a sense of fairness as far as attention and equal discipline is an area that is repeatedly discussed. Where possible, the views of the ill child are also provided. These conversations include views on their relationship with others in the family, the status of their health and the relationships amongst other family members.
What is most clever about this book is that each of the nine families represents a different stage of the illness, cystic fibrosis. Therefore in the first of a series of nine chapters after a brief introduction, the author introduces the Daleys for whom diagnosis has been recent and adjustment difficult. The Daleys recount the shock of diagnosis, the fears that accompanied it and the general sense of impending doom that looms in the face of unknown terrain for this family. By the time the author introduces the reader to the ninth and final family, the Baileys, in this book, a world of relentless illness and repetitive treatments has been traveled through and all that is left for the final family is to introduce the reader to the terminal stage and eventual death. Bluebond-Langner interviews as many family members as possible at each stage to provide a balanced view of what each member thinks of their individual coping mechanism as well as the family’s dynamics as a whole.
In the final section of the book, succeeding the nine families’ interviews, Bluebond- Langner provides a summary of common trends in families. She focuses on commonalities discovered at each stage of the disease regarding acceptance of the disease, socializing for both the child and the parents amongst themselves and with non family members. She also discusses expenses of the disease, the length of time required to adjust the daily routine, and provides anecdotes to support her findings. The author walks through the different stages of the disease as she identifies them in the book and makes an effort to identify the various coping and defense mechanisms of both the parents and the children. Bluebond-Langner indicates that these commonalities are an effort on the part of all family members to gain some control and normalcy in their lives and to maintain that normalcy for as long as possible.
This book has a home in psychotherapy. Not just for working with families where children have cystic fibrosis but other families where a childhood chronic illness is present. In fact, although the focus of the nine case studies is cystic fibrosis; this may actually provide the degree of separation needed by some parents to identify the difficulties experienced as a family when a chronic illness is present. In other words, those parents that offer resistance to the idea of focusing on text that identify their child’s illness specifically may be more receptive to a book that discusses family dynamics in relation to another illness. This is true also for the well sibling who expresses fatigue regarding the subject of their ill sibling’s disease.
The case studies in this book have two potential advantages for parents. The first is that they can help a parent identify themselves and accept their coping techniques as well as the techniques of their children. The second is that for parents, who have excessive defense mechanisms and other unhealthy adaptations, it can help facilitate the acquisition of attitudes, thoughts and behavior that are better suited for dealing with a chronic illness. It also helps to introduce the thoughts and feelings of well siblings to the parents and helps a parent to assess their relationship with these healthy children as well as acknowledging and appreciating their children’s role in maintaining family functionality.
For well siblings, the book provides an opportunity to identify with other well siblings of ill children. It can provide insight for adolescent and teenage children (and possibly) adult children on how and why their families function the way they do and the differences- as well as the similarities- in thought amongst the parents and the well siblings. Well siblings can potentially adapt techniques used by some of these children in coping with some of the interruptions a chronic illness can bring to a household.
When read by an entire family, the case studies in this book can offer much useful information that can mediate a family’s discussion of their own dynamics and functionality. Views on sensitive areas such as deterioration, terminality and death can be discussed as a family both before and after they occur. Strengths as well as problems within a family such as money, attention from one another and interacting with the external social world can be identified vicariously and the issues can be discussed in a therapeutic setting. The use of the book as such a tool validates the author’s efforts to bring the plight of these families to light.
In general, because of the emphasis on thoughts and behavior this book is suitable for a cognitive behavioral approach to dealing with chronic illness. It provides an opportunity for family members to recognize their own irrational (and rational) thoughts as well as those of others and to begin to practice behavior that helps to counteract those irrational thoughts (and reinforce rational thinking).
The greatest weakness in this book is that Bluebond-Langner fails to discuss the dynamics when a family does fall apart and separation of spouses occurs. All of the families are two parent families (although one case offers information that implied a second marriage had occurred). Issues regarding expenses are also glossed over as well as the external social life of the well siblings and the intimate relationship of parents. Granted, the author used an informal interview setting to gather this information, it would have been helpful to provide more family cases and less of the summative information at the end of the book. Another weakness is that Bluebond-Langner seems to focus on one geographic area, featuring children who are all treated by the same doctors in one hospital. It makes it difficult for a clinician to apply the trends the author discusses to a whole family as she fails to provide adequate standardization techniques in order to normalize the sample. A clinician should therefore be well versed with the case studies in order to determine the suitability of the cases to a particular family.
Outside of the family cases provided in the book, the language becomes distant and impersonal. A reader can interpret some of the ideas discussed in the summative chapters as critical and stereotypical as Bluebond-Langner begins to identify trends noted. It is therefore important that a psychotherapist practices frugality when assigning chapters to be read in this book. It is also prudent for a therapist to note that a person may resent the idea of being labeled if the entire book is read and resistance to the book may arise. Ideally, it seems that the end of the book, which discusses the coping and defense mechanisms used, may be better suited for a psychotherapist alone. Furthermore, the cases, each within itself, have the potential to help facilitate discussion within a therapeutic setting and therefore reading the whole book may not be necessary. In addition, for families for whom cystic fibrosis is not the chronic illness they are familiar with, the author at times waits a little too long before providing some much needed descriptions and definitions of different treatments, medication and equipment. This lack of comprehending on the reader’s part due to whatever reason can create problems relating to the book’s content. In order for persons not affected by cystic fibrosis to benefit from reading this book, it is important that technical terms are explained earlier.
When it is all read and put away, however, the most important point to take from this book is that every family handles an illness differently. Even though similar trends are detected, they are by no means the expected pathway for handling this situation and therefore no family method of functioning is proffered as the perfect solution. This book is simply a tool that facilitates reexamining practices and deciding as a family whether or not energy and resources are being utilized adequately. By allowing a family to examine their own dynamics, this book has the potential to serve a great purpose in psychotherapy.