June 08, 2022
By Dr Kathy Weston
My half-term break was pleasant enough, but, as usual, the hiatus that comes with schools being shut, can also be the time when parents reach out about particular issues in family life. My job gives me an insight into problems that families face, and it’s humbling to hear what many have to cope with and persevere through. I enjoy being able to use my skills as a researcher to find relevant resources or key professionals.
Over half-term, I ended up researching a range of fascinating niche areas, sparked by parent questions. I explored new topics, touching on subjects I had previously not given much thought to. What can we do to support siblings of teens with eating disorders? Can you find us any online courses that we can attend about selective mutism in teens? What rights do children have during medical and hospital procedures?
The parent who asked about children’s rights in clinical settings had been regularly attending a large children’s hospital with her son. He has a rare genetic condition that was puzzling doctors. As a result, he was routinely being prodded, poked and physically held by teams of different healthcare professionals. As she explained, he became used to being ‘manhandled’, and it upset her to see him robotically ‘give in’ and acquiesce to uncomfortable requests each time. His ready compliance, whilst efficacious for the medical team treating him, caused her to wonder how this experience might impact on his sense of body autonomy as he grows older.
How could she best support him to both comply but also stand up for himself in such scenarios? Did he even have any rights that she could or should make him aware of? These are intriguing questions and reflect the complexity and intimate decision-making that the parents of poorly children often have to contend with.
In the same half-term week, I found myself unexpectedly in front of a consultant surgeon with my teenage son. I was uncharacteristically quiet; letting the physician lead the discussion and question my son about the nature of his injury. I didn’t interject, mainly because I wasn’t entirely sure of what my role was or what the expectations were in terms of my input. Afterwards, my teen said that he hadn’t understood certain questions, felt the doctor was ‘abrupt’ and was annoyed that I hadn’t warned him that he would have to take off his shoes and socks!
It’s true. I hadn’t prepared him in any way for this appointment. I hadn’t explained who he was meeting, the purpose of the consultation, or what it might entail. Short of getting a parking spot near the hospital entrance, I hadn’t done anything to help. He was ill-prepared emotionally and felt somewhat blindsided. As the consultation unfolded, I hadn’t stepped in to scaffold the chat appropriately or to model the asking of effective, clarifying questions. I had failed to consider the importance of his agency in this interaction.
The initial question by the parent of the poorly child, as well as my own personal experience that day, took me on a yellow brick road of studies in this area, and led to the exciting discovery of some research treasure.
Children are actually key users of health services, with over six million outpatient attendances for 5–14 year olds in the United Kingdom in 2017–2018 (NHS Digital, 2018). An entire literature exists that explores children’s fear and worries about a whole range of clinical procedures. Medical examinations, blood tests, X-rays or vaccinations might be experienced as par for the course, but we need to remember that, for children, they can feel foreign, intrusive and unsettling. Even minor procedures mean entering an “unfamiliar clinical environment full of new people, sights, smells, sounds and equipment” (Krauss & Krauss, 2019). There is strong evidence to show that children have a better experience if they are well prepared and informed about what will happen when they attend hospital for a procedure and are involved in choices and decisions about their care.
Preparing children for entry into health-care settings is something we can all give more thought to. Simple picture books may help younger children to familiarise themselves with medical settings, professionals and practices. Oral or visual explanations of what will happen, why, when and how they may feel are particularly important for older children.
Luckily, there is some brilliant work going on in this area. Professor Lucy Bray is Professor in Child Health Literacy in the Faculty of Health, Social Care and Medicine at Edge Hill University. Her work, in part, explores how we might improve the quality of support that we give to children when undergoing tests, treatments, investigations or procedures, from minor initial appointments, through to those that are more complex or involved.
We have all heard the adage, “they won’t remember it” when it comes to putting children through particular medical interventions, but the emerging evidence suggests that this may not necessarily be true. Professor Bray’s work shows that sub-optimal experiences in health care settings may have longer term sequelae psychologically and that taking a ‘child’s rights approach’ to such interactions may minimise potential harm. Her fascinating work explores, for example, the area of “clinical holding”; holding children in position to receive medication or treatment for example. Should adults be allowed to forcefully administer medicine? Hold a child down against their will?
Happily, Professor Bray is part of an amazing collaborative, international effort to draw up standards to support paediatric patients during investigations and treatments, to reduce harm and establish trust. The work was prompted by a young person called Katie Dixon (an expert by experience), who met with Professor Lucy Bray in 2020 to ask what progress has been made in relation to supporting children to have positive procedural experiences.
The collaborative project is called ISupport and examines what procedural practice might look like ‘if children’s rights were acknowledged and prioritised in all procedural interactions.’ The ‘ISupport Standards’ propose an approach where the rights of all children undergoing clinical procedures, up to the age of 18, are foregrounded to minimise their anxiety, distress and harm. The standards advocate that if a child needs to be held for a non-emergency procedure, their rights and interests are best served by the use of supportive holding. This occurs when a child is provided with meaningful information about their procedure, offered choices about their procedure and positioning, and knows that when they say or show ‘stop’, adults will listen and act on their wishes. Wouldn’t the world be a better place if we paused and considered our children’s rights in such scenarios? Empowering them to seek information, question and gently and respectfully assert themselves when it comes to body autonomy?
You might be reading this and thinking back to the time (like me), when you had to hold your young child down whilst syringing in some sort of medication and feeling guilty about it (like me), wondering if the experience has harmed them in any way. Truth is, most children happily breeze through those encounters. It is only when a procedure is prolonged and doesn’t go well, that there can be more long-lasting impact.
The good news is that the ISupport initiative has produced a real-life prep sheet that parents can download and work through with their child ahead of a procedure. The ISupport team plans to work closely with families and professionals to establish exactly how the rights-based standards can provoke positive change. Currently, Professor Bray would love to hear the views of children and parents, to help to ensure that the standards are useful. They are also planning to develop some additional resources for children and young people to highlight their rights when they go to hospital for tests, interventions and treatments and are keen to hear your ideas.
There are also lots of useful resources freely available online, which have been designed to help parents prepare children for medical consultations and treatment. Children Coming to Hospital was developed with parents and the pain team at Alder Hey Children’s Hospital. It includes a leaflet containing information on supporting children through procedures and an animation for children featuring practical advice about what may happen when they come to hospital for procedures.
If you are wanting to prepare your child for a hospital visit, you might also like to consult the What? Why? Children in Hospital website and browse through their 60+ informative videos. Remember, every child is different and will prefer different levels of information and types of resources. As a parent, you know your child best and can help find the most appropriate information for them.
Are you a Tooled Up member?
We are already starting to produce resources designed to help children with medical appointments and are planning to expand our offering in this area. If you are a Tooled Up parent and have any suggestions for resources, please get in touch to let us know. In the meantime, to help your child feel well prepared for dental trips, check out our tips on avoiding or reducing dental anxiety. You might also want to look at some of our other resources on oral health.
We also recently interviewed Laura Barrett, an inspiring mum and author of a brand new book, about her experiences managing long hospital stays and coping with challenging diagnoses after the birth of her third child. It’s in the library now, accompanied by some useful notes in case you are short on time. Whilst we normally interview researchers, our Lived Experience podcast category is also expanding. Pop into the library and you can also listen to podcasts with Eva Musby on supporting a child with an eating disorder and Fiona Spargo-Mabbs, who talks about the best way to educate our children about drugs.
Finally, if you have any questions about parenting or about children’s mental health, why not join us online on 27th June at 8pm BST for a live Q&A with adolescent psychiatrist Dr Anna Conway-Morris. You can book your free place now on this, or any other of our webinars.