Final Report > Chapter 29: The Care of Children > Specific issues > Communication between healthcare professionals, children and their parents or carers

Communication between healthcare professionals, children and their parents or carers

52 Children, once they grow out of infancy, are acute observers of the mood and body language of others. It is impossible to avoid communicating with them. For this reason, good practice is now founded on the principles of truthfulness, clarity and awareness of the child's age. [21] In practice, this means that healthcare professionals who care for children must be able to listen to children, to respect their needs for information and to be prepared and able to give such information in the right amount and in a way which is suitable for the child's age. Clearly, this is not necessarily a straightforward or easy matter. It causes us again to reinforce our view that those who care for children must be trained in paediatrics and in the special skills of communicating with children about illness and treatment.

53 In the case of children still in infancy, communication is with their parents. We were left in no doubt that one of the principal lessons from Bristol is that parents wish to be treated with respect. They want their particular knowledge of their child to be valued, and they wish to be included in the process of caring for their child. Parents are entitled to nothing less, and good practice now reflects this. Our experience of receiving the evidence of parents, 238 of whom gave formal written statements to the Inquiry, is that they do not, for the most part, expect healthcare professionals to have all the answers. What they do expect is that their concerns as parents will be addressed. As Jean Simons, Head of Bereavement Services, Great Ormond Street Hospital for Children, points out, parents become angry or frustrated when a healthcare professional unilaterally decides which topics are `too difficult' for them to deal with. Making such assumptions, or avoiding certain issues altogether, are not good practice. Healthcare professionals caring for children should be trained in the particular skills necessary to communicate with parents. There needs to be a willingness on the part of the healthcare professional to be more open with parents about difficult issues, and to assess to what degree the parents want to discuss them.

54 Of particular difficulty is the issue of false hope. Parents in Bristol, as would any parent, wanted only the best possible for their children, not least the chance of life-saving treatment. Having heard from so many parents as to how they felt the doctors at Bristol led them to believe their children would get better, or would not necessarily have permanent side effects after surgery, we were struck by Jean Simons' comment:

`... the reliance and trust most patients place in doctors to give them cause for hope, can lead doctors to concentrate on discussing the aspects of treatment which can give cause for hope at the expense of realistic information about what the treatment may do to the patient's quality of life, or indeed what truly realistically the treatment could be expected to achieve.'

55 This is a real human dilemma. Healthcare professionals, especially those caring for children, share this hope for the future. But all have to guard against allowing this natural human instinct to get in the way of being straightforward with parents. There is no single or easy solution to this. What is called for is constant awareness and vigilance amongst those involved in supporting the parents of sick children in hospital to ensure that they are not inadvertently avoiding the difficult issues. One very practical step which we recommend is, systematically, to seek feedback from parents several weeks after their child has been in hospital about their perceptions of the experience. Such feedback could then be regularly reviewed in clinical team audit meetings and appropriate lessons learned.

Footnotes

[21] We have been greatly assisted in this section by expert advice from Jean Simons. See her paper at 10k in Annex B: `Giving information to parents with an unwell child; an expert opinion'