Children of mothers with breast cancer were distressed by hair loss; those >10 years of age wanted more information about their mother’s condition
Q How do children of mothers with newly diagnosed breast cancer perceive their mother’s illness and its initial treatment?
37 mothers with newly diagnosed stage I-IIIa breast cancer (mean age 46 y) and 31 of their children who were 6–18 years of age. Cancer treatment was surgery, plus chemotherapy and radiotherapy as needed.
Mothers participated in semistructured interviews, which addressed their experiences of talking with their families about their illness and their perspectives of their children’s response to the diagnosis and treatment. Children were interviewed at home by a child psychiatrist. During the 1 hour interviews, children were asked about their awareness of cancer before the diagnosis; experience of the illness, diagnosis, and treatment; and sources of information and support. Interviews were audiotaped and transcribed verbatim. Anticipated and emergent themes were explored using constant comparison.
Children’s awareness of cancer before their mother’s illness. All but 2 of the youngest children had heard of cancer as a disease before the diagnosis. They learnt about cancer from the media (television advertisements for cancer research or health promotion, soap operas, and films), direct experience of someone with cancer, and science lessons at school. Some of their ideas about cancer were that it was a common disease or alternatively a rare disease; a disease that kills and a disease that sometimes is treatable; a disease caused by smoking, that you catch if a you have a gene, and can be made worse by stress; a disease where you lose your hair; a disease in which the more treatment you have, the worse it is or the less likely it is to come back. Some mothers believed that their children knew that cancer could be life threatening, whereas others were shocked when their children expressed concern that they might die.
Learning about their mother’s diagnosis. Children often suspected that something was wrong before they were told of the diagnosis, based on changes in their mother’s behaviour or overheard conversations. Some felt that their mothers were hiding the seriousness of the condition. Most children were told the news by both parents after the diagnosis was confirmed. Children >10 years of age were usually told directly that their mother had cancer and about planned treatment; 6–10 year old children were told that their mother was ill, had a lump, and had to go to the hospital. All children reacted with shock, emotional upset, fear, and anxiety; some expressed anger at God, their mother, or their teachers or peers. Sometimes, children’s accounts of their reactions and mothers’ interpretations differed: whereas children reported feeling shocked or overwhelmed, mothers believed that they were coping well or didn’t really care.
Reactions to treatment. Children who first visited their mothers in hospital during the early postoperative period were shocked by their mother’s drowsiness or by seeing blood on the sheets or in the drainage tubes. Many children said that chemotherapy was the worst part of their mother’s treatment: hair loss was a key issue for all children.
Expressed need for information. Children of different ages expressed different needs, but only younger children felt they had been given sufficient information. Younger children were more confused about cancer, particularly the causes. Girls across the age range wondered if they would be more likely to develop breast cancer. Several older children said they wanted more information about cancer and available treatments and to find out how others coped in similar situations. Most adolescents wished that some websites had been recommended. Some older children wanted to speak directly with a health professional to learn more about their mother’s treatment and prognosis.
Children of mothers recently diagnosed with breast cancer often knew something was wrong before they were told of the diagnosis. Hair loss during chemotherapy was particularly distressing for children. Children >10 years of age wanted more information than they had received.
- Gladys McPherson, RN, PhD
Nurses have long been interested in how to best support families when a member has cancer. When a mother has breast cancer, her child’s experience has important implications, not only for family health, but also for the child’s own health and wellbeing. The findings of the study by Forrest et al can inform the work of nurses through its detailed description of some of the experiences of these children.
An important finding of Forrest et al is that many children, particularly those >10 years of age, wished to receive more information about their mother’s condition. This is vital information for many mothers as they as strive to make wise decisions about their conversations with their children. The study draws attention to the tendency of parents to protect children from unnecessary stress as an important dynamic in many families, one that may not serve children well in the early days of their mother’s cancer experience. It is important to note that what mattered to children varied widely, and hence the information they needed also varied. This finding is consistent with the earlier work of Zahlis1 and Shands et al,2 which described in detail the many worries of children whose mothers were diagnosed with breast cancer.
Perhaps the most important nursing implication of the study by Forrest et al is the confirmation that mothers with breast cancer face many issues in their parental roles and thus, might benefit from a forum in which to have conversations about their children. Creating spaces where these conversations can take place is important nursing work.
For correspondence: Dr G Forrest, University of Oxford, Park Hospital for Children, Oxford, UK.
Source of funding: Ashley Trust.