Why Children Must Be Part of Treatment Decisions in Facial Palsy Care

August 20, 2026

Why Children Must Be Part of Treatment Decisions in Facial Palsy Care

When a child is diagnosed with facial palsy, families are often faced with difficult and deeply personal decisions – especially when surgery is an option. Unlike emergency care, these choices are usually elective or semi-elective, meaning there is rarely a single “right” answer. Instead, families may be choosing between several valid paths, including surgery, therapy, delaying intervention, or opting for no treatment at all.

In this complex landscape, one approach is becoming increasingly important: shared decision-making.

Moving Beyond Decisions Made For Children

Shared decision-making is a collaborative process in which clinicians, parents, and patients work together to make healthcare choices, combining medical expertise with the values and preferences of the patient. In paediatric care, however, the “patient” is often left out of the conversation.

Historically, decisions about children’s treatment – particularly surgical interventions – have been made primarily by adults. This is often driven by understandable concerns: parents want to protect their child from stigma, improve function, and ensure the best possible future. But these decisions can also reflect adult anxieties about difference, normality, and social acceptance.

The risk is that the child’s own perspective – how they feel about their face, their identity, and their priorities – can be overlooked.

Children Have a Right to Be Heard

The idea that children should be involved in decisions about their healthcare is not just good practice; it is a recognised right. The United Nations Convention on the Rights of the Child makes clear that children who are capable of forming their own views should be able to express them, and that those views should be taken seriously in accordance with their age and maturity.

In facial palsy care, this is particularly significant. Decisions about surgery are not purely medical – they often affect appearance, identity, and social experience. These are areas where the child’s voice is not only relevant, but essential.

Do Children Actually Want to Be Involved?

Evidence suggests they do. Many children prefer to share decision-making with their parents and clinicians, and some – particularly as they grow older – want a high degree of autonomy. Their desire to be involved tends to increase with age and maturity, highlighting the importance of adapting the approach over time.

Importantly, involving children is not about placing the full responsibility of decision-making on them. It is about recognising their role, listening to their views, and ensuring they are part of the process in a way that feels appropriate and supportive.

This reflects what parents themselves describe. In a small FPUK survey of parents of children with facial palsy (2026), when asked what mattered most in making treatment decisions, parents ranked their child’s own opinion above their own view, third overall behind function and expert clinical opinion, and ahead of appearance. Two thirds said their child’s views had changed how they thought about treatment.

Understanding What Matters

One of the challenges in facial palsy care is that different people may prioritise different outcomes. Parents may focus on protecting their child from bullying, improving function, or ensuring future opportunities. Some place a high value on appearance, while others emphasise acceptance and preserving the child’s unique identity.

Children, meanwhile, may have their own perspectives – about how they feel at school, how they relate to their peers, or how they see themselves. These perspectives may not always align with those of their parents.

Shared decision-making creates space for these different viewpoints to be explored, rather than assuming that one perspective should dominate.

In Parents’ Own Words

Parents who took part in the survey described a range of approaches. Some preferred to wait and let their child lead:

‘We haven’t ruled anything out regarding treatment or surgery but will only look into it if our daughter expresses unhappiness towards her looks. We have always encouraged her to embrace her differences.’

For others, medical necessity meant there was no time to wait:

‘We had to fight to put drops in eye and his eating was affected, so waiting wasn’t an option.’

Others felt strongly that the decision belonged to their child:

‘I wanted my child to make the decision as it was their face and they would have to go through the operation.’

For some, the choice involved weighing competing concerns about appearance and acceptance:

‘We could choose to improve her appearance, so she’d look more symmetrical. But at the cost of her thinking that her natural face is wrong or unacceptable. We couldn’t make such a big decision without her being at the core of it.’

Involvement Improves Outcomes

There is growing evidence that when children and families are actively involved in decision-making, the outcomes are better – not just clinically, but psychologically. Patients report higher satisfaction, and care is more likely to align with what truly matters to them.

In contrast, when decisions are made without meaningful involvement, there is a greater risk of regret, dissatisfaction, or a sense that something important has been overlooked.

What the Survey Data Shows

FPUK also conducted a survey on smile surgery childhood (2024/2025) which asked 36 people with facial palsy about their experiences of decision-making. Half of respondents said smile surgery had been considered during their childhood, and of those, 61% went on to have the operation, most often between the ages of 11 and 17. Parents made the final decision in half of all cases, compared with 19% where the person themselves decided and 31% where the decision was made jointly. Satisfaction with the level of involvement in the decision varied depending on the outcome: 73% of those who had surgery were happy with how involved they’d been, but only 28% of those who didn’t have surgery felt the same, with over a third unsure. Regret was reported by 27% of those who had surgery and 40% of those who didn’t.

The survey also asked respondents to reflect more broadly on how these decisions are handled. A majority disagreed that children are given enough psychological support to make decisions about smile surgery, and a similar proportion disagreed that children have realistic expectations of what the surgery can achieve. Two-thirds agreed that children still feel “different” even after having surgery, and fewer than half felt that surgery prevents bullying at school. One respondent recalled that consultants only ever spoke to their parents, as if they were invisible, while another suggested that rather than trying to change a child to help them fit in, society should be more accepting of people who look different. Together, these responses point to a gap between the practical decision of whether to operate and the psychological and social support children may need around that decision, regardless of which way it goes.

What Clinicians and Specialist Teams Say

Consultant plastic surgeon and Facial Palsy specialist, Adel Fattah, has described how the approach to involving children changes with age:

‘Children under the age of consent are unique in that their decisions are governed by their parents’ wishes. In my experience, children fall into three main groups when I’m approached for facial reanimation surgery. The first group are the newborns and young infants attending with parents who are worried about the future and what this will entail. In many cases, they attend wondering if I can “fix their baby”. In reality, at this age facial reanimation surgery is of no medical benefit to the child and in most cases it’s more important that the child grows, is healthy and enters school at an appropriate physical and social stage.

‘The second group of children are usually around primary school age; typically, five or six years old. These patients are usually coming with a degree of self-consciousness or bullying and I usually see them at an age when they can begin to articulate their difficulties or in many cases their resilience. This is a critical age group as it’s important to be able to determine what their aims are and whether they are able to understand what they’re considering taking on. These are patients where discussions with them and their parents are critical; I really try to give a balanced, honest view of what surgery can achieve and what difficulties they may encounter along the way. I personally feel it’s really important to involve the child at this age. As I typically don’t perform surgery until around the age of 7 or 8, it allows us to have a conversation over a period of one or two years to really figure out what the child (and their parents) are looking to achieve.

‘The next group are typically teenagers in high school who are articulate, and I’m much more able to have a direct conversation with them about the pros and cons of surgery. Each child is an individual and the conversation needs to be tailored to their understanding as well as that of the parents. In rare cases there is disagreement in the family; in this situation and in any scenario where I have any concerns about the benefit to the child, I simply continue the conversations. I differ from many colleagues who feel it is better to get surgery done before the child “will remember the trauma”. However, I have found that primary age children are incredibly accepting of and resilient to the surgical journey if they are actively engaged in the decision-making process.’

Great Ormond Street Hospital’s Facial Palsy Service takes a similar view:

‘At Great Ormond Street Hospital Facial Palsy Service, we believe children of all ages should be involved in decisions about their treatment. We know that outcomes are optimised when children are engaged in the process, particularly when considering facial therapy or surgery.

‘The extent of a child’s involvement – especially where surgery is being considered – depends on their age, developmental stage and individual level of understanding. Every child is different so discussions should be tailored accordingly.

‘We use a multidisciplinary team approach involving play specialists to ensure that the child’s voice is always heard, in keeping with the hospital’s “child first and always” ethos.

‘During physiotherapy and play pre-operative appointments, we use information booklets designed specifically for children and young people to help them understand their condition and the surgery. We encourage them to ask questions, share concerns, and take an active role in their care. For younger children, this may mean simple reassuring explanations and offering small choices, “would you like to practise your exercises before or after school?” For teenagers, conversations may focus more on identity, confidence, social life and decision-making. As a specialist children’s hospital, we also support children and young people who may feel particularly worried about anaesthetic, needles, stitches or surgery.’

‘Parents remain important advocates but we believe that involving children in treatment decisions can improve trust, engagement, and confidence in living with facial palsy.’

What Does Meaningful Involvement Look Like?

In practice, involving children requires careful, age-appropriate communication. Younger children may need simple explanations, visual aids, or play-based approaches to help them understand what is happening. Older children and adolescents are often able to engage in more detailed discussions about risks, benefits, and long-term outcomes.

Even when a child is not able to give legal consent, they can still give assent. This means they are supported to understand their condition, informed about what to expect, and given the opportunity to express their willingness – or reluctance – to proceed.

Crucially, involvement also means listening. It means taking a child’s concerns seriously, even when they are difficult to hear or challenge adult assumptions.

Managing expectations is also an important part of this process. Surgery for facial palsy often cannot recreate the smile a child would have had if the condition hadn’t occurred, and results vary from person to person. If this isn’t explained clearly and honestly beforehand, a child may picture a different outcome to the one surgery can actually deliver, which can affect how they feel about the results afterwards.

Some parents may also find it useful to keep a written record of the reasons behind the decisions they made and when they made them. As children get older, they may ask why a particular path was chosen. Having an account of the thinking and circumstances at the time can help them understand those decisions later on, rather than relying on memory alone.

A More Thoughtful Way Forward

FPUK’s CEO, Karen Johnson, reflects on her own experience navigating similar decisions for her son, and how attitudes have shifted since then:

‘My son was born in 2000 with a condition that affected his appearance, unrelated to facial palsy. I remember feeling rushed into surgery for him when he was very young; we were told this was standard practice for children with his condition, and that surgeons preferred to complete treatment before school age. We trusted the advice we were given, because you trust the expert in front of you. But the outcome wasn’t what we expected, and it affected my son’s experience at school. He needed further surgery at 13.

‘What changed things for us was meeting parents of children with facial palsy who had sought out specialists and didn’t give up. Their determination inspired me to keep looking for my son.

‘I think things are changing, and that surgeons are more aware now of how difficult these decisions are for parents. When an expert is recommending a course of action, it’s hard to know how to weigh that against your own instincts about what’s best for your child. Surgery is such a significant decision, and all any of us can do is make the best choice we can with the knowledge and advice we have at the time.’

Facial palsy care often involves uncertainty. Questions about timing, effectiveness, and long-term outcomes do not always have clear answers. In this context, shared decision-making offers a way to navigate complexity with care and compassion.

It encourages clinicians and families to slow down, to reflect, and to ensure that decisions are not only medically sound, but also personally meaningful.

This appears to hold true in practice. Among parents surveyed by FPUK, five out of six said that, looking back, there was nothing they would have done differently in how they approached the decision.

Most importantly, it recognises that the child is not just the subject of the decision, but a person with their own voice, values, and future.

When we begin to truly include children in these conversations, we move closer to care that is not only effective but respectful and ethical.