Mark R. Zuccolo, Ph.D., LMFT
When parents are involved in the care of a child with cancer, they experience both positive and negative changes in their relationships, communication, stress, and their roles.
Emotions such as anxiety, guilt, anger, and distress ebb and flow during the course of the child’s illness. These emotions are felt and expressed by all family members, often more overtly by mothers and children. The child’s cancer affects the family’s need for care, self-esteem, social interaction, and functioning. Consequently, parents may find it necessary to change or modify their family roles to cope with the demands of their child’s illness.
There are variations in the impact of the child’s illness on fathers’ and mothers’ relationships. While some relationships are weakened by these extremely stressful circumstances, others are strengthened during the cancer experience.
According to an extensive 2010 integrative review of parents of children diagnosed with cancer by DaSilva, Jacob, and Nascimento, time since diagnosis appears to be an important factor in the couple’s relationship. Many of the changes occur shortly after diagnosis. However, when the child has been ill for 1 year many parents report fewer changes in their relationships. After 2 or 3 years, many couples report positive changes. After 4 years or more, most parents note little to no additional changes. In times of the child’s remission, family life is likely to return to normal, and couples note a sense of their strengthened relationship. If the child’s cancer relapses, however, the entire crisis process can be reestablished. Some couples report greater emotional closeness, while others realize that their adverse circumstances simply reveal the marriage’s strengths and weaknesses.
High stress factors can also produce negative changes in couples’ relationships. Some mothers may feel that, despite a strong relationship with their spouse, the adverse and stressful circumstances generated by the child’s illness are weakening the connection with their partner. The parents’ intimate relationship and sexuality has been reported to worsen for almost half of the couples surveyed. Many couples invest, at least for a time, the majority of their physical and emotional energy in their child’s illness, often leaving little or no time and energy for intimacy and leisure activities.
Difficulties in communication appear frequently in parents of a child with cancer. Healthcare professionals may be able to identify parents at risk for developing conflicts, communication problems, and lack of alignment between parents that could interfere with providing optimal care for their child with cancer. If these symptoms are observed, they should be addressed, preferably in counseling.
Each spouse deals with the child in his or her own way and may feel that they cannot meet the other parent’s needs. Some mothers expect fathers to help when they feel overwhelmed with caring for the sick child and managing the daily routine and often jobs, as well. Fathers, however, may feel especially burdened by their jobs and may want down time away from work. These conflicting needs must be reconciled through communication and negotiation between the spouses, as they are both equally valid and heartfelt.
Fathers may find it difficult to acknowledge their weaknesses and vulnerability in moments of grief and loss. They may choose to repress fear and inner conflict, perceiving that they are socially expected to show strength and courage. Accordingly, many fathers may not share their uncertainties and feelings of difficulties with their wives because they may be afraid of appearing weak, preferring to be seen as the rock the family rests on.
Mothers may find that during the illness, their role as wife may be totally replaced by the caregiver role. We may see the fathers, who were not formerly directly involved in household tasks, starting to assume these roles, even when they have a full-time job. Generally speaking, in times of crisis, mothers focus on involvement in the child’s life, represented by being physically present, while fathers advocate for and support their children and their wife.
Both partners need to be comfortable and flexible in dealing with these role changes by emphasizing the importance of working together in a partnership, as a team, independently of how roles are shared. It is important to be emotionally available for each other, whether separated or together. Bonds are strengthened when the couple is together, and they individually suffer in each other’s absence. Despite the inevitable tensions, couples can share strategies for handling situations as they emerge, and they mutually provide encouragement and support for each other.