Recommendation for Early Family Assessment by Health Providers
#1. Consider family background factors of “family configuration”, “prior family problems” and “family communication style” to identify families “at risk” for later problems.
Health and mental health providers who work with women who have breast cancer, and women who are diagnosed with breast cancer, can use the family background factors found to be important in this study to identify those most likely to have problems. Because older daughters are most likely to take on major caretaking responsibilities, it is possible to identify which daughter in a family is likely to need extra support early in the process and to make arrangements for family caregiving in advance. Also, family communication style can be assessed early on, and resources can be identified to help families improve their communication skills. By assessing prior family problems, such as previous illness and deaths in the family, history of abuse or neglect, dysfunctional patterns, and alcohol or drug problems, these issues can be identified, addressed, and dealt with early in the process. By dealing with these prior problems early, women and their families will be in a better position to communicate openly, and support each other during difficult periods in the course of the illness.
Recommendations for the time of Mother’s Diagnosis and Treatment
#1. Improve communication in the family.
One of the issues that is mentioned again and again by the women in our sample was communication. Families with younger daughters were especially likely to need help with communication about the disease, since communication tended to be more open in families with older daughters. Women who have breast cancer need to learn how to share information with their families, especially children and young adolescents, without frightening them. Since mothers feel responsible for protecting their children, health professionals may need to help women with these tasks. Providers should educate breast cancer patients about the dangers of keeping information secret. They can help women to share information by modeling how to do so, by developing and sharing written materials for family members, by holding information seminars for family members, and by holding family meetings where the whole family receives information together, in a format where questions are encouraged.
Women need to help daughters anticipate the side effects of the breast cancer treatments, understand why these are occurring, and deal with their reactions. Young adolescents, especially, were very frightened seeing the physical manifestations of mother’s illness.
It is also important to emphasize that the information that is shared should include emotional as well as physical aspects. The emotions a woman with breast cancer is likely to feel (shock, fear, anger and sadness) are well known, and it is appropriate for these to be discussed with family members. This can help daughters to understand how mother is feeling, and what they might be able to do to help. It is especially important that children and young adolescents be encouraged to express their own feelings, and to learn that these feelings are normal.
There are some excellent materials (booklets, videotapes) available to help parents discuss a cancer diagnosis with children. The internet can also be a good place for children to learn and to share their feelings about mother’s treatments. Appendix III contains examples of materials which can help women to improve communication with their children about breast cancer.
#2. Prepare daughters for increased responsibilities.
It is common for health and mental health providers to focus on the patients and overlook the impact of the illness on the family members. In cases where daughters, especially late adolescents and young adults, have had to interrupt their lives and become caregivers, their needs should not be ignored. These daughters need support, both emotional and concrete. Unfortunately, most existing support services are directed to caregivers of the elderly. Hospices are particularly good at extending services beyond the patient and providing support to caregivers. Some women, who do not want hospice services, may accept them if they see them as supportive for their daughters rather than for themselves. Support groups for young caregivers might also be of value.
#3. Provide support for changes in relationships between mothers and daughters.
One theme of the study was that breast cancer led to changes in the mother-daughter relationship. These may be welcomed, but they may also be disturbing to mother, daughter, or both. Open discussion of these shifts may help, as would family counseling.
Recommendations for cases when mother is dying
#1. Encourage mothers to talk with daughters about what will happen after her death.
Daughters especially appreciated having mothers tell them what they might feel after her death, and that these feelings would be normal. If this is consistent with their beliefs, mothers may be able to tell daughters that they will still be there in spirit, supporting them and listening to them. Mothers should be encouraged to express their unconditional love. Daughters often feel guilty for having behaved badly, having said mean things to mother, or even having wished for her death. If possible, women can use the dying period to forgive their daughters for these real or imagined sins, and to help their daughters to accept the death and move on with their lives.
#2. Encourage mothers to provide a legacy for daughters.
Women whose mothers died were eager for information, especially if they were young at the time of mother’s death. Daughters were interested in learning about mother’s medical history, including the breast cancer and its treatment. Those who might some day be interested in genetic testing would appreciate a frozen tissue sample.
Daughters also missed knowing family stories. They wanted especially to hear about mother’s childhood, and about their own childhoods. Women may be able to make tapes (audio or video) where they tell these stories. Making a list of names and addresses of relatives and old friends would also be helpful. Some daughters wished they had mother’s favorite recipes. Daughters held very dear any possessions of their mothers, such as pictures, jewelry, even clothing. If women can provide this type of legacy for their daughters, it will be very appreciated.
#3. Refrain from admonitions to daughters.
Some practitioners encourage mothers to tell their children to accept a new stepmother after their death. In this study, quick remarriage only exacerbated the problems daughters experienced following mothers’ death. Daughters almost universally maintained a loyalty to mothers that precluded accepting a step mother. I think that advising a mother to encourage her children to accept a future stepmother is unwise, and only makes the post-death adjustment more difficult.
Some of the mothers of older daughters in my study left daughters with a list of expectations before they died (e.g., “Keep the family together”; “Take care of your father/siblings/grandparents”). While extracting such promises may make the dying woman feel better, it can be detrimental for the daughter later. She may be unable or unwilling to fulfill these expectations, but may feel guilty about it. She may alter her life, postponing getting married and having children, in order to fulfill the promise she made. Open discussion between mothers and daughters may clarify expectation (or wishes), and prevent later guilt.
#4. Prepare daughters if a home death is planned.
Many younger daughters were traumatized by mother’s death, especially if she died at home. Sights, sounds and smells of the terminal period and following the death (e.g. seeing mother’s body being carried out in a body bag) were especially difficult for children and young adolescents. If a home death is desired, it is important to prepare children for what will happen, to support them during the process, and to provide opportunities for them to talk about it after the fact. Organizations such as hospices have expertise with these issues, and can help families avoid traumatizing a child or adolescent.
Recommendations for the time following mothers’ death.
There were two overarching themes for the period following mothers’ death: “family changes” and “survival”. Family changes were especially difficult for the youngest daughters.
#1. Provide family-focused services for widowed fathers and reconstituted families.
Services for widowed fathers and stepmothers are needed to teach them to support the newly motherless-daughter. Services such as support groups, individual counseling and family therapy would all be appropriate. Bereavement programs need to be targeted at the family unit, similar to the family camps now being offered to AIDS families in bereavement. Bereavement services are also needed for daughters of all ages, such as school-based support groups, Internet support groups, after-school programs, college counseling department services and outreach services. After a mother’s death, special support may be needed to help fathers deal appropriately with their early adolescent daughters. Intensive counseling services, such as those that are offered to trauma survivors, may be appropriate for the women who were early adolescents when mother died.
Many of the women in our study lost contact with their maternal relatives and with mother’s friends after mother’s death. They felt that their loss was multiplied by their inability to share stories and memories, as well as the loss of love and support. It can be very difficult for family and friends to maintain contact with children after mother’s death. However, it is possible that before her death a mother could make arrangements with her extended family and members (grandmother, aunts) to reach out to her children. Perhaps the children could be included in a holiday celebration that occurs every year. If a close friend will agree to be a kind of “big sister” for a daughter, it could make a real difference to the young daughters who experience loss of mother to breast cancer.
Recommendations for Long-term Needs of Daughters Whose Mothers Died.
#1. Provide mental health services for motherless daughters.
Because many daughters identified mental health problems, it is important for mental health providers to be especially sensitive to the issues that motherless daughters experience. They need to know that despite their cognitive ability, daughters who were children and adolescents did not necessarily experience grieving, but may have buried their feelings after the death. Therefore, as adults, they may need to mourn for mothers and express long-buried anger, guilt, and sadness before they can successfully move forward in their adult lives. (Insurance providers should recognize the importance of these issues. Mother loss for a daughter should not be lumped with other bereavement services. More intense mental health services may be needed by these daughters.) Specialized services may also be needed for women who were children or adolescents at the time of mother’s death.
#2. Provide services that improve relationships.
Many daughters identified problems with relationships, long after their mothers died. Mental health providers such as family therapists, marital therapists, family counselors, should develop special services that target these problems. Relationship problems in these women may be related to their failure to develop the empathy and mutuality that women learn through their relationship with mother (Jordan, Kaplan, Miller, Stiver, Surrey, 1991). Services that recognize the source of the problem are needed.
Recommendations for Women Whose Mothers Survive.
Recommendations on family communication and role shifts are appropriate for daughters of survivors. Because a recurrence is always possible, services that provide support for open communication are appropriate at any time. In addition:
#1. Help mothers to communicate emotions with daughters.
In some families, women take a strong, protective role. They minimize the seriousness of the illness, and provide reassurance to daughters. As daughters get older, they may come to realize that mother is vulnerable to recurrence, but fear discussing it. This leads to excessive worrying about mother. Health and mental health providers could help these families by facilitating open communication about the likelihood of recurrence, and the family expectations of the daughter were this to occur.
#2. Help daughters who are “stuck”.
In some families of survivors, daughters’ concerns about mother’s health lead to an unusually strong closeness between mother and daughter. Some daughters were reluctant to leave mother and form committed relationships, and some were afraid to take on the responsibilities of children, in case mother might need their care. These families would benefit from open discussion. When open communication is not possible, daughters may need help in separating from mother enough to move forward with their lives.
Recommendations on breast cancer risk in daughters.
#1. Provide accurate information for daughters of all ages about the causes of breast cancer, its prevention and the benefit of early detection.
Our study shows that many daughters are misinformed about the causes of breast cancer.
At the same time, their fear makes it difficult to gather this information. Educational materials are needed which are targeted to daughters and which are sensitive to their fears.
#2. Help daughters gain an accurate idea of their level of risk.
Many daughters vastly overestimate their risk of getting breast cancer and of dying if they are diagnosed. Educational materials that target daughters are needed to help them understand their actual risk. These materials need to be sensitive to daughters’ high level of fear.
#3. Develop strategies for communicating with daughters that reduce anxiety without demeaning daughters for their fears.
Anxiety is so high in the daughters that it can interfere with good medical care. Health providers need to learn to communicate in a way that respects daughters while reducing their anxiety.
#4. Support mammograms and clinical breast exams for daughters, instead of breast self-examination.
Mammograms and clinical breast exams should be provided for daughters beginning five years before the age of their mother’s diagnosis. Breast cancer advocates should pressure insurance companies to provide these services. Breast Self Exam should not be pushed excessively, because it may not be helpful in detecting breast cancers in younger women, and it is extremely anxiety provoking. When they are unable to perform it, daughter just feel guilty.
#5. Provide sensitive genetic services.
As genetic testing becomes more common, providers of genetic services should be educated about daughters’ experiences. While they may look alike on a genogram, the very different experience and outlook of women whose mothers survived and those whose mothers died requires very different counseling techniques. Also, the differences in daughters’ experience depending on their age needs to be understood by genetic counselors. The mother-daughter dynamics of “mutual protection”, worry and closeness in families of survivors also need to be understood by genetic counselors. This will allow them to provide services that incorporate the themes identified by this study, and serve as a referral resource for family and mental health counseling.
#6. Support the effective coping of daughters.
Daughters do a remarkable job of handling a very high level of fear using a variety of coping mechanisms. Health providers need to explore these techniques with daughters, and support them, recognizing how difficult it can be for them to “do the right thing”.
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