Empathy in Practice – 10 Ways to Transform the Journey for Parents of Children with Medical Complexity

Dr Nicola Bartrum, Dr Hannah Nicholson

The care of children with medical complexity is one of the most challenging and rapidly evolving aspects of paediatrics. While medical expertise is crucial, it’s often the little things that can make the biggest difference in the lives of families of children facing complex medical challenges.

Here are ten insights from parents on the small things they would like medical professionals to know when caring for their child with complex medical needs:

  1. Ask, Don’t Assume: It’s easy to fall into the trap of assuming what families want or need. Instead, take the time to ask them. Every child’s condition is unique, and their parents are the best source of information about their specific needs and preferences.
  2. Timing is Everything: When delivering difficult news or having important conversations, consider the context of the family’s day. Timing can greatly impact how well information is received. Find moments when parents are most receptive.
  3. The Power of Teamwork: In a multidisciplinary team (MDT), it’s not enough to simply work in close proximity. Actively collaborate and coordinate your efforts. Think of it as children playing together in the same sandpit rather than toddlers side by side.
  4. Kind Communication: Clear communication is an act of kindness. Have the courage to engage with parents in a genuine and empathetic manner. Sometimes, holding the “grief gaze” – acknowledging their pain – can make all the difference.
  5. See the Person, Not Just the Parent: It’s easy to fall into the habit of referring to parents solely as “mum” or “dad.” Take the time to get to know them as individuals. Learn their names and show a genuine interest in their lives beyond the hospital.
  6.     Share and Be Human: Building a connection with parents goes beyond the clinical setting. Where you feel able and appropriate share ya bit of yourself, and find out what they enjoy. This humanises the doctor-patient relationship and fosters trust.
  7. Listen Actively: Even if you can’t provide all the answers, active listening is a gift to parents. They want to feel seen and heard, so be present and genuinely engaged in their concerns and questions.
  8.  Acknowledge the Child: Always greet and say hello to the child. After all, they are the focus of our care. Simple gestures like a friendly wave or a cheerful hello can make a child feel more comfortable and at ease.
  9.  Parents are Experts Too: Remember that parents spend every day with their child and are experts in their own right. Respect their knowledge and insights about their child’s condition, and involve them in the centre of decision-making.
  10.  Learn Their Language: For children who use Makaton or other alternative communication methods, take the time to learn these forms of communication. Even if it’s just a couple of signs, it can bridge gaps and enhance your ability to connect with the child.

In the world of paediatrics, it’s not just about treating medical conditions; it’s about providing holistic care that considers the emotional and psychological well-being of both the child and their families.

By embracing these small but impactful practices, we can make a huge difference to the families we look after, fostering trust, empathy, and a more profound sense of partnership in their care journey.

Dr Nicola Bartrum, Paediatric Registrar; Dr Hannah Nicholson, Consultant in Neurodisability,  West London Children’s Health Care, Chelsea and Westminster NHS Foundation Trust

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