Cancer in parents: telling childrenBMJ 1998; 316 doi: https://doi.org/10.1136/bmj.316.7135.880 (Published 21 March 1998) Cite this as: BMJ 1998;316:880
Sensitive communication can reduce psychological problems
- Leanda Kroll, Senior registrar in child psychiatry,
- Jacqueline Barnes, Senior lecturer in psychology,
- Alison L Jones, Consultant medical oncologist,
- Alan Stein, Professor
- Tavistock Centre, London NW3 5BA
- Royal Free Hampstead NHS Trust, London NW3 2QG
- Leopold Muller University Department of Child and Family Mental Health, Royal Free Hospital School of Medicine, London NW3 2PF
Children of cancer patients “represent a hidden, high risk group whose problems are minimised by overwhelmed parents and unknown to the medical staff who seldom see them.”1 A recent editorial in the BMJ highlighted the difficulties doctors have in communicating the news of a cancer diagnosis to their patients.2 How much harder must it be for parents with newly diagnosed cancer to tell their children while coming to terms with the implications themselves? Cancer in a parent is an issue that confronts many families. For example, breast cancer affects one in 12 women in Britain,3 30% of whom are likely to be diagnosed while they have children still living at home.4
Good doctor-patient communication about the diagnosis and shared decision making over treatment are crucial and have a protective effect on patients' psychological adjustment,5 and useful guidelines on how to impart the diagnosis are available.6 Little attention has been paid to what, or how, children should be told about the diagnosis, however; the responsibility seems to be left largely to the unaided parents. Information and guidelines for doctors are urgently needed so that they can help families with this difficult task.
The few studies on this issue have tended to be small and retrospective, but some themes are emerging. The balance of evidence suggests that children of parents with cancer are at increased risk of developing psychological disturbance.7-9 It is becoming clear that children's levels of anxiety are related to whether they are told about the illness and to the quality of the communication with their parents.8-10 In one study of parents with advanced cancer, the anxiety levels of children who were told the diagnosis by their parents were lower than those of children who were not told.8 In some families the parents had discussed the illness with older children but not with younger ones, providing an opportunity to examine whether anxiety was associated with a child's knowledge or with particular family characteristics. Analyses revealed that anxiety was specifically related to a child's knowledge, or lack of it, and not to the particular family. These findings were supported in a second study, which found that high anxiety scores among adolescent children of parents with cancer were linked to an inability to discuss the illness with the parents.9 In a third small study of adolescent girls whose mothers had undergone a mastectomy, most felt that they were not given enough explanation about the disease and complained of being ignored.10 Importantly, all three studies assessed children directly and did not rely on parental reports.
The importance of communication between parents and children was confirmed by a large, well conducted study from America, which found that parents underestimate the impact of the illness on their children.7 This study found a marked discrepancy between children's and parents' reports of children's emotional and behavioural adjustment in the months after cancer was diagnosed. Parents reported little or no evidence of emotional distress or disruptive behaviour in their children, while the children themselves reported greatly increased psychological symptoms. A further study of children whose mothers had breast cancer found that the quality of their peer relationships was related to the amount of communication with the well parent.11 These studies all underline the importance of communication and suggest that doctors need to discuss with parents at an early stage how and what their children should be told. Parents may need considerable support when dealing with their children's feelings and reactions.
Most difficult is how to tell a child that a parent might die. Little specific work exists to guide clinicians, but Kane has elucidated the developmental stages that children go through in their understanding of the meaning and permanence of death.12 Knowledge of these stages is helpful in tailoring information and language to children's developmental age and experience of death.12
Research is needed to identify what information should be given to children at what stage and in what manner while taking account of parents' views and feelings. Some useful booklets are available to guide clinicians and parents when talking to children about a parent's diagnosis of cancer,13 but properly developed and evaluated guidelines and training packages are urgently required.