The Family & Cancer: Helping Families Thrive, Not Merely Survive

by Fran Lewis, PhD, FAAN, Family and Child Nursing, University of Washington School of Medicine

Cancer is an illness of the family, not a disease of the patient.  Like a biological system, a family is constantly modifying how it works and how it adjusts to the cancer.  This process ideally enables the family to balance its family life and routines, even as it responds to the cancer's demands.  However, balance and self-control is not always successful with cancer in a family member.  The cancer tends to destabilize the family.  The work of the family is to prevent or minimize the destabilization.  This work involves balancing two lives: the family's life as a family and their life with the cancer.

In this article we will describe four particular challenges every family faces when a member has cancer. These challenges are normal issues with which a family must deal to thrive, not merely survive, cancer.  

1.  Families are distressed, suffer, and destabilize because of the cancer. 

Distress in family members is a psychological disease and can lead to loss of family balance. Both distress and de-stabilization in families are part of the natural history of families' cyclical experience with cancer. Distress and destabilization occur in well-adjusted marriages, in long-term relationships, in families with many resources, and in well-educated as well as less well-educated families. In short, destabilization and distress are normal processes that occur in every family experiencing cancer.  

Spouses and partners suffer.  An estimated 20-33 percent of spouses reach clinical levels of depression. Significantly elevated levels of emotional distress have been documented up to three years after diagnosis and in some studies distress in the spouse is greater than in the diagnosed patient.  

Children suffer when a parent has cancer.  Children worry about the diagnosed ill member and are threatened by the real or symbolic threat to the child's sense of security.   In a recent study, 81 percent of children of mothers with early stage breast cancer feared their mother was going to die from the disease.  

2.  Family members struggle with how to best support family members about the cancer.

In multiple studies, family members do not know, do not understand, do not focus on, and report not having the skills or confidence to support other family members about the cancer. This has been extensively documented in child-rearing families impacted by breast cancer.  Even when parents diagnosed with cancer witness their children's distress from the illness, they report that they do not know what to say or do to help the child. They say that parents are supposed to care for, not scare, their child and they fear that talking about the cancer will frighten, not help, the child. 

In long-term and well-adjusted marriages, children and adolescents report that no one, not even family members, helped them cope with the impact of parental cancer.  In a major study, about 25 percent of younger children and 15 percent of older children stated that "the family did nothing to help them." Mothers of school age or adolescent children who are diagnosed with breast cancer report they are unable, especially during the treatment phase of the illness, to be the parent for their child that they want to be and should be. 

Couples experiencing cancer treatment function in survival mode, during which competing demands distract them from attending to and supporting each other's thoughts, feelings, and needs for support about the cancer.  Studies show that couples emotionally disconnect in the ways in which they interact about the cancer. For example, wives with breast cancer report wanting the spouse to be a good listener for them but the spouse thinks it best to do the dishes or clean the house. 

3. Family members must balance their family life with their life with the cancer. 

The work of the family involves balancing their life as a family with their life with the cancer.  This work is difficult, not easy nor automatic.  Everyday life includes maintaining an emotionally and physically safe environment and nurturing family members.  It also includes providing and interpreting information.  But this work is often given short-shrift with cancer. 

4. Family members put the cancer "under the table;" not on top of it.  

There is an "elephant in the room" that no one is talking about. The elephant is cancer. Many families do not actively discuss or interact with each other about the cancer nor do they keep each other updated or talk about ways to deal with the cancer. Yes, family members help with chores. Yes, family members help the patient. But commonly family members do not, as a family, talk about or deal with the cancer's impact on their feelings, relationships, or family life. Instead, there is a silent sorrow and often an aloneness that each family member experiences with the cancer. Such feelings deserve time and attention shared between family members. 

Families deserve to heal and thrive when a member has cancer. To heal is to make whole or sound. Healing in a family involves helping the family stabilize and maintain its core functions. Healing families sustain and enhance relationships among members.  They nurture the development of all members at the same time that they are responsive to the needs of the patient, children and spouse.  All of this nurturing of relationships adds to family members' competencies to manage the illness.  Healing includes adjusting, stabilizing, protecting, and enhancing the relationships among family members, even as the cancer causes pressures that increase tension or distance between them. Healing includes creating ways for members to safely express thoughts and feelings about the cancer during the entire course of the illness. Finally, healing involves reorganizing family routines around treatment while protecting and savoring time as a family away from the cancer.