Children have a right to learn, play and grow.
To help children thrive, parents and health-care professionals must ensure they get the medical support they need. However, existing evidence shows we could involve children more in their health-care appointments.
Research suggests children who actively participate in their own treatment recover faster from surgery, have less anxiety and feel more valued.
Our new study examines what practices may help children be involved in health-care appointments.
So what are they? And how can we implement them?
What we studied
Over more than 50 years, researchers have tracked how involved children are in their health-care appointments, using different measures of how much children talk in a conversation compared to other people. In that time, the level of child involvement has remained consistently low. And it doesn't appear to be improving.
Our new research suggests this may be because we focus too much on what children say , while ignoring the many other ways children communicate.
Our study focused on paediatric palliative care services.
Paediatric palliative care is a kind of treatment for children diagnosed with life-limiting conditions. This can include severe cerebral palsy, genetic syndromes such as Trisomy 18, neurological and metabolic conditions such as childhood dementia , and advanced cancers such as leukaemia and brain tumours. Paediatric palliative care aims to improve the child's quality of life, while also providing support for their family.
We focused on paediatric palliative care services because they support children of all ages, from infants to young adults. And they support children who can speak and also children who do not speak.
In our study, we video-recorded 60 paediatric palliative care appointments, delivered by three Australian services. We then examined how children communicated with health-care professionals, family members, caregivers and support people during these appointments.
Kids communicate in many ways
Our findings demonstrate just how important non-verbal communication can be.
In these appointments, children often communicated through sounds other than words. Examples include grunting, groaning, crying and laughing. They also communicated through actions such as touch, gesture, posture and facial expressions.
Once we started paying attention to these other kinds of communication, we found even very sick children consistently involved themselves in health-care appointments - every 90 seconds on average.
We also observed that some children did not involve themselves. Instead, adults actively included them in health-care appointments. Adults did this in many different ways, including by talking, playing and using gestures such as pointing. One doctor, for example, involved a child by playing with a toy the child had brought to the appointment.
Our findings underscore the need to train families and health-care workers to engage children in verbal and non-verbal ways - especially when communicating with children who do not speak.
Adding adults
These findings led us to do a second study , which examined how the presence of adults may affect child involvement.
In this study, we found children were least likely to be involved in appointments when only two adults were present. This tended to be one family member and one health-care professional. In this case, these two adults would talk to each other about a child's treatment - often without involving the child.
However, when more adults were present, usually at least one of them more actively involved the child during the appointment.
Importantly, children were most involved in appointments that included more than one health-care professional. This was particularly true if only one family member could be there.
For example, consider an appointment where one doctor, one nurse, a child and one of the child's parents were present. This arrangement would allow one professional to focus on communicating with the family member, while the other prioritised the child and their involvement.
In our study, we observed professionals engaging children by playing peek-a-boo, singing a child's favourite song and admiring how much a child had grown. These are all creative ways of involving children in their health-care.
So, how can we involve children more?
To better involve children in their treatment, health-care workers can:
think broadly about how to communicate with children, for instance by singing or playing with them
offer families other supports, such as flexible planning for and scheduling of appointments, so more than one family member, caregiver or support person can attend appointments with a child. Telehealth can suit some families and there are ways to involve children when using this
advocate for services to be funded and structured so at least two health professionals, ideally of different disciplines, can attend appointments. Students or health-care professionals in training could also attend appointments to learn these processes of communication.
Parents and family members can also actively involve children by:
observing the diverse ways your child expresses themselves and encouraging them to communicate in these ways during health-care appointments. You may need to explain this to health-care professionals to help them also communicate with your child
brainstorming creative ways to involve your child in health-care appointments, whether through talking, gesture, touch or play
bringing more than one adult caregiver or support person to appointments, if possible. Brothers and sisters may be another option, as they often have a unique relationship with their sick siblings
using tools researchers have designed to support families accessing paediatric palliative care services, including booklets with guidance around talking to sick children about their treatment and what happens if their condition gets worse .
The research reported in this article was funded from the Australian Research Council (reference: DP180101941).
Anthony Herbert receives funding from the Australian Research Council (reference: DP180101941. He is affiliated with Paediatric Palliative Care Australia and New Zealand (PaPCANZ) and Palliative Care Queensland.
