Listening to families: why paediatric patient safety requires a conscious approach to engagement

Summary

Peter Sidgwick, a Consultant in Paediatric Intensive Care, and Julie Plumridge, a Senior Safety Partner, both work at Great Ormond Street Hospital. In this blog they explore the unique complexities of paediatric patient safety and why listening to children and families is critical to getting it right. 

Content

Patient safety is fundamentally about learning from harm to prevent it happening again, with the patient voice as a key factor in providing valuable feedback and sharing concerns following a harm event. However, in paediatrics, an equally important principal is “who we learn from”.

Unlike adult care, where the patient can usually advocate for themselves, children rely on parents and carers to interpret their experiences, be their advocate and understand what they cannot yet articulate.

When something goes wrong, the emotional and relational complexity around this advocacy role intensifies. Parents may feel guilt for not recognising harm earlier, powerlessness if they struggled to have their concerns heard or deep conflict between trusting the system and fearing it has let their child down.

This is why meaningful engagement with children, young people and families in the patient safety processes that affect them cannot simply mirror the approaches used in adult services. The dynamics and emotional weight are different and so the way we listen must be different too.

Understanding the family’s landscape from the start

Engaging a family after a patient safety event requires more than understanding the clinical facts; it requires understanding the family context. Who was present at the time? What is the balance of emotional or practical burdens between parents? Are there siblings affected by the incident? Are there language, cultural or relational dynamics that shape how the family communicates and copes?

Taking time to understand the nuance of this before the first conversation is essential.

For some families, one parent may have felt unheard during the admission and will come into the investigation already emotionally raw.

For others, the incident may have triggered feelings of guilt or self-blame, even when completely unwarranted. The needs of the child must also be considered; a traumatised teenager may require a very different approach from a frightened younger child who communicates distress through behaviour rather than words. These differing needs can place an additional emotional burden on parents.

This preparation allows the investigation team to approach the family with empathy and clarity, avoiding assumptions and reducing the risk of re-traumatisation.

The unique emotional burden of advocacy in paediatric patient safety

Parents often describe a tension: they know they must advocate for their child, yet during the event they may have felt unable or unqualified to do so. When harm occurs, this tension can evolve into feelings of responsibility — even when the cause lies entirely within the system. This is one of the most significant differences between paediatric and adult patient safety engagement and acknowledging this openly can be transformative.

Children’s hospitals routinely depend on parental insight – so often we hear that parents notice subtle behaviour changes long before clinicians do. When that insight isn’t acted upon, or gets lost amid the busy clinical environment, the emotional wound can be profound.

If the investigation process does not make space for that, families may disengage or feel that their voice is “too little, too late”.

Working in paediatric patient safety therefore demands that we help parents reclaim their sense of agency. We can do this by setting clear expectations, transparent boundaries and offer genuine opportunities for them to influence the investigation. When families feel they are collaborators — not observers — their ability to contribute meaningfully increases and the investigation gains depth and accuracy.

Collaboration restores control and confidence

A collaborative approach should show families:

• Their insight matters.
• Their questions will be answered.
• Their emotional needs are acknowledged.
• Their involvement has structure and purpose.

Being explicit about how they can contribute (for example, sharing their insight into early symptoms or communication gaps, or helping in timeline construction) helps restore a sense of control.

Some families want to be heavily involved; others prefer limited involvement. Either way, inviting participation and working together to agree how parental or carer choice will be respected and put into practice is critical.

The power imbalance between families and healthcare systems is amplified in paediatrics – considered collaboration incorporating clear boundaries, consistent communication and respect for parental expertise begins to rebalance it.

Closing the loop: feedback provides closure

Families repeatedly say that what they want most is to know their experience has made a difference.

Feedback should not be a dry account of “actions taken”; rather it should connect the dots:

• Here is what we learned from you.
• Here is what has changed.
• Here is how your child’s experience is improving care for others.

This connection acknowledges emotional labour, honours their advocacy and begins the restoration of trust, all of which may make a sense of closure begin to seem possible. In paediatrics, where the sense of responsibility felt by a parent or carer for their child’s wellbeing is so very fundamental, this step carries an especially significant importance.

Supporting staff doing emotionally challenging work

Engaging with families sensitively after a patient safety incident can be emotionally demanding for staff involved in the investigation process. Patient safety professionals often absorb a wide spectrum of emotions including distress, guilt, anger and grief as families try to make sense of what has happened. Being exposed to these raw and often intense feelings, while also being viewed as the ‘face’ of the investigation or organisation, can have a significant personal impact. Despite this, staff are expected to approach each new case with the same openness, empathy and compassion, which can become increasingly challenging without the right support.

If we are to sustain safe, honest, learning focused engagement, we must build structured support for patient safety teams.

This could include:

• Debriefs after family meetings.
• Peer supervision.
• Reflective spaces.
• Psychological support when needed.

Supporting the staff who support families is not optional - it is what makes continued high quality engagement possible.

Conclusion

Paediatric patient safety engagement is not simply adult engagement with smaller patients. It is relational, emotional and deeply influenced by the interplay of trust, advocacy, vulnerability and parental responsibility. When we acknowledge this complexity and build processes that are compassionate, personalised and transparent families become not just participants but powerful partners in patient safety.

Share your insights

Have you been involved in a patient safety investigation as a family or healthcare professional? How can patient and family engagement throughout be strengthened? Share your insights by commenting below (sign up first for free), or you can contact the editorial team at [email protected] .

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