This remarkable study is about another group of survivors of breast cancer, not patients who have survived the disease but their daughters. The research especially focuses on the tremendous losses that result from having a mother with breast cancer. Some of the losses occur around the initial diagnosis, some around treatment, but the most devastating are those that accompany the death of a mother from the disease.

Over an eight year period, using material gathered from intensive interviews as well as reviews of the several literatures that affect this subject, and building on previous important work on breast cancer including Breast Cancer in the Life Course: Women’s Experience (with Carolyn Walter), Julianne Oktay, Professor and Director of the Doctoral Program at the School of Social Work at the University of Maryland, wrote this sophisticated, sensitive, and thought provoking book. The study could be an exemplar for the methodology of grounded theory in relation to the recruitment of subjects, the training and use of interviewing teams, the use of an advisory board, coding and analysis and the drawing of conclusions. The study group was comprised of 41 women, 63% of whom had lost their mothers to breast cancer, 27% of whom were African American. There is no way that any other methods would allow someone to reach such nuanced analysis and comprehension.

In the book Oktay presents her theoretical model which is related to the mother’s survival, the daughter’s age, phases of the breast cancer experience for daughters, and, finally, the interactions of outcome, age and phases of daughter’s experience. She explains why she is ultimately most interested in the experiences of daughters whose mothers have died of breast cancer and then divides that group into childhood (1-9 years old), young adolescence (10-15), late adolescence (16-22), and young adult hood (23+). For the youngest group, she finds that themes include lack of communication, concerns about safely and independence in relation to their mother’s illness and treatments. Following the death, there are issues related to loss of the family and survival, and the long term impact has to do with seeking information, delayed grieving, mental health issues and the emergence of strong, independent personalities. In contrast, she finds that the young adolescents are concerned with their mothers’ bodily deterioration and experience conflicts between separation and added responsibilities. Following their mothers’ deaths, the young adolescents experience difficulties with their fathers. They are most influenced by their peers. The long term impact involves fear, PTSD and problems intimate relationships. In contrast, late adolescent daughters relate to their mothers’ illness and treatments as little women who are moving toward an adult relationship with their mother. Following their mothers’ death, there is incomplete grieving, loneliness and isolation and long term impact is in the form of chronic grief and depression and feeling the loss of one’s mother’s support. Finally, Oktay finds that young adult daughters respond to their mothers’ illness and treatments by taking charge, trying to be superwomen and developing deep relationships with their mothers. They experience healthy grieving following their mothers’ deaths, and tried to walk in their mothers’ shoes. Long term impact has to do with changing priorities and being able to gain relief from crying when they missed their mothers. Frankly, I was surprised to find such differences between close age groups. These differences certainly help Oktay to make the case later for her theoretical conclusions.

In the end, this study makes two major contributions. First, the analysis, which accounts for so many different elements over time (what Oktay refers to as phases of experience), demonstrates what it is possible to produce with this level of dedication, honoring of the data and willingness to spend months and years thinking about themes and relationships between concepts. The second contribution is Oktay’s willingness to share not just the facts about but the voices of her informants. In fact, after I had read the first couple of chapters, I found that I had to skip to Appendix III, Additional Case Studies (pp. 345-398) to meet all of the informants before I could finish the book. Following are a few quotes which allow one to hear the voices of the participants.

Marci’s mother was diagnosed when Marci was 1 and dies when Marci was 3. She does not remember anyone talking to her about her mother’s death and says;

You know, children were not considered humans (laughs). I know my father did not tell me anything. But I think I may have bee told by my grandmother or somebody that she went to sleep. I’m only assuming this because . . : I have terrible sleep problems (p. 345).

I was in a troubled marriage, and my sister has been married for twenty-five years and she’s in a troubled marriage. My sister and my best friend and I talk about that all the time. I think my mother’s death left many scars on all of us because I think it led to us picking the wrong men. You know, wanting to be taken care of so early and losing our aspirations. You know, we married these big men that we thought were gonna save us from the world, and they (turned out to be insensitive. They were not family oriented. My mother went through the same thing with my dad (p. 106).

Oktay says that the goal of every grounded theory study is the creation of theory. Thus, in relation to this study, she offers the following:

1. Our theories of life-course development have not done justice to the life-course development of girls, particularly to the nature and importance of the mother-daughter relationship for women.
2. Our theories of the impact of illness on children have not recognized the special status of girls in the family, particularly older daughters, and the impact of illness on them.
3. Our theories of bereavement have not recognized the importance of the family changes and fears about survival that occur following a mother’s death.
4. Our theories of bereavement have not incorporated the special nature of the mother-daughter relationship. New theories may be needed to understand how women mourn the death of a mother.
5. Our theories of understanding perceptions of risk and health prevention behavior may be too heavily based on rational cognitive models, and may underestimate the role of fear. (p. 312).

Herein is another contribution of this book. It’s not an end but a series of suggestions of areas that need further study, deeper investigation of the effects of not only breast cancer but other kinds of chronic diseases on family members, and not just daughters but sons and husbands. It suggests that theories related to the life course need to be broadened to include many more dimensions than were thought to be necessary. The same is true for bereavement. Perhaps the most important direction for future research is in relation to the role of fear in inhibiting individuals from learning about disease, from following prophylactic endeavors such as tests related not only to a specific illness but to risk factors, from seeking medical attention or from following medical advice.

To me, this book is first about the huge power of loss to disrupt a life course. Then, it is about the importance of social support particularly in times of great difficulty, about learning to build and rely on small networks of people who can help to sustain one in tough situations. I’m sure that there is special significance to daughters in the death of a mother when the daughter is young, and that breast cancer, being primarily a woman’s disease and related to what is so much a part of woman’s sexuality in this society is especially profound. However, for social workers in health care who work with a more general population, these considerations of the power of loss and the importance of social support networks remain true for all clients and their relatives. Thus, this book offers important material for all health-related social workers.

This is a seminal work written by a senior professor in social work in health care. I thank Julieanne Oktay for her willingness to take on such a difficult topic, to stay with the project until she could make the kind of sense of it that she has offered, and to provide all of the stories to her readers allowing so many individual voices to emerge while continuing to search for their commonalities. Bravo!