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"Our Nurse Practicioner told me early on that the most flexible families are the successful families..."
- Annie Gould, parent
When a child of someone you know has cancer, it is common to feel worried or sad and want to do something to help.
However, many parents don’t know what to say when people offer to help. Sometimes the parents themselves are uncertain what they need. In fact, some parents say, “I’m usually the one helping others,” or “I feel embarrassed getting help.”
Parents of a child who has just been diagnosed with cancer are often overwhelmed by the new demands of the situation. Sometimes they feel uncomfortable asking friends and family for assistance. Following is information designed to give you ideas about how you can best support a family facing cancer.
There are many things you can do to provide informational, practical, and emotional support that can make a significant difference for the quality of life for the child with cancer, the caregivers, and other family members.2 The support of the community can make the family feel cared for, valued, and respected during a time of stress.3
A community is made up of friends, extended family, neighbors, parents and teachers from school, members and leaders of religious institutions, work place, and other social groupings. There is strong evidence that family caregivers who receive social support:
Family caregivers who receive support from their extended family and friends are more likely to be optimistic despite the hardships.14
Serious stress can heighten the “fight or flight” response in most people. When a person stays in this state for a long period, such as occurs with the extended treatment typical of most children’s cancers, it can have longer term health implications for caregivers.15-16 But, the good news is that:
When thinking about supporting a family, think about the whole family. Everyone is affected by the cancer, from the mother and father, to siblings and the child who is sick. Each family member probably needs something a little different and they each have their own style of coping. Some typical issues for different family members include the following:
Mother’s have the most challenging time during the period following the child’s diagnosis and at the start of treatment.20-22 However, once treatment starts, mothers usually focus on treatment-related needs and psychological distress diminishes.23 Having help and support from friends and family has been shown to substantially improve how mothers adjust to the challenges of having a child with cancer,12,24-27 and her closest friends and family play a particularly important role.28 Mothers tend to seek out and find more friends and family to help them cope with their child’s cancer29 compared to fathers, who tend to focus on employment or financial issues.4
A family experiencing the time and financial concerns associated with having a child with cancer will sometimes look more traditional in terms of gender roles. The father frequently tries to maintain work and the mother will sometimes have to cut back or leave her job.29 Fathers may appear less worried than the mothers at diagnosis, but the fathers’ anxiety is less likely to decrease over the treatment period while mothers report slightly fewer worries.25 Mothers often look for support from family and friends, while fathers tend to appreciate support from healthcare professionals, extended family members, and church communities.30
Many people focus on the child with cancer, sometimes leaving siblings in the shadows. The often long and complex treatment protocols for patients mean that siblings’ needs can become a lower priority for family and oncology care teams. Treatments often involve many visits to the hospital, prolonged hospitalizations, preoccupation of parents, disruptions in home life, and loss of companionship for the sister or brother with cancer. Things can be very difficult for siblings and it shows. They report more anxiety, depression, academic problems, loneliness, isolation, physical health problems,31-32 and family, school and social problems.33 In this stressful and confusing time, it is difficult for parents to provide enough time, support or answers to siblings. Friends and extended family can successfully help siblings understand that they are not alone and that their feelings are important and valid.19
Sometimes specialized treatments are only available at a great distance from the family’s home, which can further disrupt the family’s routine. Often one parent will have to take an extended leave or quit her/his job and the other parent maintains his/her work schedule and takes care of the siblings and household. This is extremely stressful for the entire family. In this case, logistical support can be very helpful for the parent and children remaining at home. Friends can offer emotional support to the in-hospital parent with phone calls and letters. The in-hospital parent will be very grateful for the help at home. He or she may also want to hear updates on the family members, so she/he feels involved.
There are many things you can do even if you live far away.
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