Senior Lecturer in Special Needs at UEL, researcher and insider to the paediatric oncology journey @davideliebara
David Bara is the father of a cancer survivor. He is also a Senior Lecturer in Special Needs, and his research explores the important role of Health Play Specialists internationally. Here, he shares his unique perspective with us.
As a qualified primary school teacher in 2010 I found myself working in a school for autistic children, and it was there that I first realised the true value of play. Working with children with severe social, emotional and communication issues, I used different modes of play to communicate with and teach the children.
Then, in 2012, my 2 ½ year old daughter was diagnosed with cancer. I became witness to just how valuable the work of Health Play Specialists was to my daughter – and to the other children and young people in the hospital. Later, as a Senior Lecturer of Special Needs, I drew on these experiences to conduct an international research project exploring the role and impact of the Health Play (Child Life) Specialists. While the results are yet to be published, it is clear that Health Play Specialists provide children with essential support.
Recently, I was at a hospital outpatient appointment (for myself) for an invasive medical investigation. Fuelled by nerves and concern about what the doctor might find, I fired questions off at a rapid rate. The doctor turned to his uniformed colleagues and with a wry smile said, “Ah, so we have a babbler today!” At the time, I laughed it off; with hindsight, it was quite an insensitive way to treat a nervous patient. I’m an adult and (even though I thought I deserved one), they certainly didn’t give me a smiley face sticker for being brave!
So – where does play fit into this scenario?
Before a child reaches your clinic with their parents, how many places have they been shunted around to? Even a visit to the hospital for a simple procedure is going to involve a journey which can be long and stressful. Finding the right part of the hospital on time… checking in with reception… hanging around in the ward or waiting room… going to another room for a weight, temperature and blood pressure… back to the waiting room again… to another room for the procedure or examination by a stranger… then maybe back to the waiting area AGAIN and then into ANOTHER room to speak to a doctor who may or may not use words they understand, and finally the prospect of an exhausting journey home.
Think about a ‘routine’ X-Ray: freaky hazard warning signs, strange lead jackets for everyone and a screen for the clinician to hide behind. And don’t forget what happened to the Hulk and the Fantastic 4 when they were exposed to radiation! (Yes, kids do make the link, my son did!) Add to this an emotionally exhausted, worried parent and things get even more stressful. This is where Health Play Specialists come into their own.
During the wait to be called for my own appointment, playing games on my phone had helped to relax me a little. Being supported by someone like a Health Play Specialist who understands the procedures, knows the doctors and nurses, is familiar with the layout of the ward and more importantly, has a clear idea of what is going to happen – would have been so much better! Sick children and adolescents – some with potentially life-threatening conditions – are expected to enter a completely alien environment and asked to trust without question the people, the equipment and the machines that talk and bleep at them. They are encouraged to ‘be brave‘ and if the procedures hurt (which they often do) minimal tears and fuss equate to ‘good’ behaviour.
Children and teenagers use play to develop skills, to have down time, alone time, social time, occupy time between events and develop cognitive skills. Play and games create negative and positive memories and experiences which help shape our understanding of the world and make us who were are.
Health Play Specialists understand the process of child development but they are not clinicians. They never poke, prod or conduct procedures, they support the clinicians and can be seen as a friend. Out of all the staff in the hospital, they are trained to play – and play equals fun. A Health Play Specialist can sit down with a child, gain their trust and help them work out their worries, using different types of interaction. Much can be achieved by chatting whilst they are playing, through role play or creative activities. Using the right resources, the child can learn about what they are facing and can even become the clinician, practicing the procedures and comforting their patients, allowing the child to voice their concerns and find the best pathway for them.
Play and Health Play Specialists can also encourage children to socialise and create a sense of community, enabling them to communicate and possibly talk about what they are going through. This allows the kids to see they are not alone and can share experiences and even give each other advice. The end result is to reduce the anxiety levels of the patient and their parent or carer; I have found this both through the results of my research and through personal experience. A good play worker can even save a department money, reducing the need for sedation and anaesthetics for some non-invasive procedures, such as scans.
The Health Play Specialist who worked with my shy daughter helped her find her own voice so she could tell the doctors her concerns about having MRI scans. At 6 years old, she negotiated her own patient plan involving anti-sickness drugs with the anaesthetist, and so felt some control over the procedure as well as pride at having done so. At 7, the Health Play Specialist helped her to find the courage to undergo MRI scans without a general anaesthetic – reducing stress for our family and reducing the strain on the medical team.
Play and Play Specialists fill a critical vacuum: they can make the clinical experience a positive one. Results from my research show that Play Specialists reduce the anxiety levels of the child/adolescent during and after cancer treatment. I have seen Health Play Specialists create good memories and enable children and adolescents to face their treatment pathways in a positive way. Unlike me, kids do get stickers for being brave but, in truth, a sticker is no substitute for being healthy and not having to go into hospital. Health Play Specialists can educate, enable and empower children and adolescents to understand what is happening to them, while supporting clinicians in doing their job.
It is essential that hospital leadership, as well as clinicians, have a comprehensive understanding of the benefits that properly trained and resourced Health Play Specialists have. They should identify opportunities early on for involving Play Specialists, for example before procedures where patients are likely to need educating and/or highly anxious. This good practice will not only ease the patient’s stress and that of their parents but also simplify the clinician’s job, as a relaxed patient who is willing to communicate and comply, is a lot easier to treat than one who is tense and frightened.
David Bara, Senior Lecturer in Special Needs at UEL, researcher and insider to the paediatric oncology journey @davideliebara