Research and commentary

How much should children be told about their diagnosis and surgery?

Lucy Bray looks at the implications for practice of a study examining how parents share medical information with their children 

Lucy Bray looks at the implications for practice of a study examining how parents share medical information with their children and discusses its implications

Illustration of mother and baby
Picture: iStock

Parents can struggle to find the right words when discussing their child's diagnosis and possible surgical intervention but the more information they have can mean a reduction in post-traumatic stress, a study has found.

Aim

This study aimed to examine whether children aged 3-13 admitted to hospital for surgery experienced less long-term stress if they were informed about their medical condition and their planned operation.

Method

The participants in this study were the parents of 151 children in hospital who were awaiting surgery. The parents of 104 of the children had fully explained their condition and planned operation, while the parents of the other 47 children had given them little or no information about their diagnosis and surgery.

A child was rated as having full information if they knew their diagnosis and about the invasive procedure they were about to undergo and its consequences. The research team measured and compared parents reports of their child's stress levels at baseline, before surgery (in hospital) and three to five months after discharge.

Several validated measures, depending on the child’s age, were used for parents to report their child’s stress levels during a short interview. The study was conducted in a large hospital in Israel and the children underwent a range of surgical procedures.

Results

The results show that the children who were informed about their condition and procedure experienced less post-traumatic distress than those children whose parents chose not to share full information with them.

Conclusion

Providing information to children is important to reduce long-term post-traumatic stress after surgery.

Study provides important evidence about long-term effects on children

There is widespread agreement that information, education or preparation has a positive effect on children’s experiences of clinical procedures (Oulton et al 2018) and surgery (Shaheen et al 2018).

Children who know what is going to happen in hospital and are prepared for their operation or procedure display less anxiety and pain (Kain et al 2007), are less likely to be held against their will (Bray et al 2016) and are more able to become involved in choices and gain some control over what happens to them (Coyne and Gallagher 2011).

Although there is increasing work on the education and preparation of children, much of this research tends to focus on measuring children’s short-term anxiety and distress levels, or focuses on school-age children. This study supports this evidence and contributes important findings to show that children, particularly young children, experience less long-term distress if they are provided with information by their parent about their condition and planned invasive procedure.

Conclusions must be interpreted with caution

The conclusions must be interpreted with a degree of caution as the study design and sample size did not allow for an examination of whether other factors, such as parent coping and stress, may have influenced a child’s stress levels.

The authors acknowledge that their findings are also limited by not including any child self-report measures or interviews with the children themselves.

Even though there is strong evidence to show that children benefit from being informed about their healthcare and invasive procedures (Dai and Livesey 2018), parents can struggle to find the opportunity or the right words to inform their child about invasive procedures (Wennström et al 2008).

Additionally parents and health professionals may underestimate children’s ability to understand information and make choices (Coad and Shaw 2008) and may decide to ‘protect’ children from information they think might upset them (Young et al 2003). This study demonstrates that there is further work to be undertaken to understand how parents prepare their children for procedures and the relationship between children's preparation for procedures and their long-term outcomes.


References

Compiled by Lucy Bray, professor of child health literacy, Edge Hill University, Ormskirk, on behalf of the RCN’s Research in Child Health community

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