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Parents want help but don't get it
No one finds it easy to break bad news. Doctors'
frequent failure to do this well has been extensively documented and
analysed. The need for better training has been recognised, and our
practice is, hopefully, improving. But recipients of bad news then have to decide how to tell those close to them. Knowing what to say to
children can seem particularly difficult. A study in this week's BMJ (p 479) suggests that there is an unmet need in giving
help with this task.1 Barnes and colleagues interviewed 32 mothers with stage I or stage II breast cancer four to six months after they had been diagnosed to explore the timing and extent of
communication about the diagnosis to their children. A fifth of
children had been given no information at the time their mothers had
surgery. Women who had higher levels of education gave less information to their children. Many women expressed a wish to meet with "a health
professional with expertise in understanding and talking to children"
to discuss how to communicate the diagnosis: only a few had actually
been given such help.
Who might those health professionals with expertise in
understanding and talking to children be? It is not clear who the
investigators or the women had in mind. But given the frequency with
which this kind of problem is encountered, and given the enormous
disparity between the supply of and demand for specialist child
psychological and psychiatric services, much of this work would have to
be done in primary care.
Hospital cancer clinics sometimes have personnel with the time and
skills to take on the task. We in primary care must acquire what
expertise we can, but we must not allow a perceived lack of expertise
to inhibit us from doing our best to assist parents in helping their
children to understand difficult or painful truths. Having a greater
concern about the need for expertise in these matters may underlie the
paradoxical finding of this study that more highly educated women
communicated less with their children.
Women in the study identified why children must be told something about
matters causing pain and anxiety to their parents: "They can sense
that something is wrong." Aware that parents are facing a serious
problem but not having been told about it and feeling unable to ask,
children fantasise explanations. These fantasies may be more
distressing than the truth.
Children can be deeply hurt by the impression or the discovery that
they have been excluded from something important to them and their
family. This may be more painful than the truth that has been withheld.
In a book on the damage caused by family secrets the French
psychiatrist Tisseron says that children subjected to a secret can
never really get out of their mind painful questions like "Are my
parents lying to me?" and above all "Why would they lie to
me?"2 The child's trust in the parents, and by
extension in the adult world in general, may be undermined. Tisseron
concludes that the more painful a new event is for us, the more
important it is to talk about it with our children and that it is
better to talk badly about things than not to talk about them at all.
So how can we help? We should remember to include a discussion about
what and how to tell children whenever we break difficult news to
someone for whom this will be part of the problem. We should offer to
make this the subject of a separate meeting on a later occasion,
because this will often be necessary, and should encourage both parents
to attend. Careful thought, preparation, and agreement between the
parents is valuable in deciding what and when to tell children, but we
should try to avoid giving the impression that special expertise is
necessary. A meeting of this kind can be valuable not just for its
stated purpose but also for achieving a better shared understanding of
the illness for the couple. Trying out different forms of words for
explaining the illness to children may make it easier for the patient
or partner to express concerns or expectations not previously shared, and it may be an avenue to better and more supportive communication between the partners.
Children need truthful explanations
The Health Centre, Thame, Oxfordshire OX9 3JZ
We should explain that children do not need every detail: what
they crucially need is a truthful and convincing explanation for their
parents' distress. We should introduce the possibility of asking
children whether they have their own ideas about why this bad thing
might have happened. Children (like adults) may need to be relieved
from irrational feelings of guilt. We should offer to be there when the
children are told if the parents would find this helpful. Such an offer
will often be declined if the parents feel adequately prepared. If time
has been spent dealing with the issue of communicating the diagnosis to
the children this should be mentioned in communications between those
who provide primary care and hospitals. Referrals to child psychiatric
services should be considered in particularly difficult situations or
when children develop overt and important psychological or behavioural problems
| 1. |
Barnes J, Kroll L, Burke O, Lee J, Jones A, Stein A.
Qualitative interview study of communication between parents and children about maternal breast cancer.
BMJ
2000;
321:
479-482 |
| 2. | Tisseron S. Secrets de famille: mode d'emploi. Paris: Ramsay Archimbaud, 1996. |
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