Children and their parent’s terminal illness: The role of doctors and nurses

The diagnosis of a terminal illness is a stressful event. However, when patients have dependent children (children under the age of 18 years) there are additional anxieties, uncertainties and stressors. A concern for parents is about how to communicate with their children about the illness and how best to support them.

The aim of the systematic review was to find the current literature that explores how terminally ill parents, who have dependent children, perceive doctors and nurses communication with them about the illness, diagnosis and treatments, including how social, practical and emotional support is offered to them. A secondary aim was to identify what information and support families, including children, receive from doctors and nurses with respect to communicating about the illness and the type and extent of information that would be helpful. We systematically searched the literature to identify and evaluate these studies. The included studies showed that although parents wanted and needed support from their doctors and nurses about taking to their children they often did not receive any support. Generally if they did have any conversations it was because the parents were the ones to ask for help and guidance. When parents did not receive support they often looked to other sources for help including books, the internet and counsellors. The information from these sources was not felt to be helpful as it was either out of date or was too generic and did not explore their particular needs or circumstances. The studies also highlighted that most terminally ill parents wanted support, from their doctors and nurses, about the most effective way to talk with their children about the diagnosis, prognosis and treatments. Parents wanted to know how to break bad news to their children and also about the most appropriate language to use with them. They also wanted practical support about involving their children with the medical environment and with their treatment.

The parents’ experiences of telling their children about the diagnosis and prognosis were discussed in the five studies included in the review. For some this was only achieved after they had been involved in a family support programme which had been specifically developed for families where a parent had cancer.

The review showed that children wanted to be communicated with about their parent’s illness but that often they were not included in discussions. Some children chose not talk to their parents because they were either worried about upsetting them or unsure how to. Children stated that they wanted to know what was happening so that they could begin to prepare for the future.

Doctors and nurses reported that they often found it difficult to talk to children about the illness. This was because of being worried that they would upset them, because they did not know what to say, that the conversations would take too much time or that they would make the situation worse.

This systematic review highlighted that there is a disparity between what parents and children want from their doctors and nurses and what they receive. The paper concludes that a barrier for this is because doctors and nurses feel too time pressured and inexpert to address these concerns. An implication for practice is that specific training is required for doctors and nurses to help them develop their confidence in working with and communicating with families.

Rachel Fearnley, Jason W. Boland
Hull York Medical School, University of Hull, United Kingdom

Publication

Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review.
Fearnley R, Boland JW
Palliat Med. 2017 Mar

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