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A 30-minute webinar with Dr Stewart Rust, clinical paediatric neuropsychologist at the Royal Manchester Children's Hospital, on the psychological care of children and families living with mucopolysaccharidosis (MPS) — recorded during the COVID-19 pandemic, but centred on practical, compassionate support any clinician can offer. For paediatricians and multidisciplinary teams.
Chronic illness has a wide psychological impact: Dr Stewart Rust notes that children with a chronic condition are about twice as likely to experience mental-health difficulties, that mothers and siblings carry markedly higher stress, and that divorce is more common in these families. Recorded during the COVID-19 pandemic, the talk pairs those risks with a strong message of resilience — 'ordinary people in extraordinary situations' (after Christine Eiser) — and argues that most families cope well and that clinicians can help enormously without being psychologists. He introduces 'psychological first aid': a humane, practical, non-intrusive response — being present, listening without pressing, protecting people from further harm, and validating that distress is a normal reaction to an abnormal situation. Using the Kübler-Ross model (denial, anger, depression, bargaining, acceptance) as a loose framework for adjusting to a diagnosis or a crisis, he matches support to where a family is: clear information early, emotional support when low, and guidance to rebuild routine and function later. His practical advice is concrete — foster safety, calm, connectedness and, above all, hope and social support; keep routines and get dressed and active; limit news overload; avoid language that defines people by their diagnosis; and stay alert to safeguarding and domestic stress. He urges clinicians to ask 'How are you?' and mean it, to allow silences so families can reach what they most need to say, and — echoing a mentor — not to 'open up' distress in a consultation unless there is time to help put it back together. The reassuring conclusion: kindness, patience and presence are powerful tools, and most families, already skilled and battle-tested, will do well.
After viewing this webinar, participants will be able to:
Widely. Children with a chronic condition are about twice as likely to experience psychological difficulties, mothers in particular tend to have poorer mental health, siblings carry high levels of difficulty, and divorce is markedly more common in these families. But the impact is not only risk — most families are remarkably resilient, 'ordinary people in extraordinary situations', and cope well, especially with good social and psychological support around them.
It is a humane, supportive response to someone who is struggling — and it does not require a psychologist. It means being practical and present without intruding, listening if people want to talk without pressuring them, comforting, validating that distress is a normal reaction to an abnormal situation, and protecting people from further harm. Any clinician — indeed anyone — can offer it; the point is to recognise the humanity in each person rather than to deliver therapy.
By matching support to where the family is in their adjustment. Using the Kübler-Ross model (denial, anger, depression, bargaining, acceptance) as a loose guide, people need clear information and regular contact early on, more emotional support when they are at their lowest, and guidance to rebuild routine and function as they reorganise. Fostering safety, calm, connectedness, hope and — repeatedly emphasised — social support is what most helps people recover.
Asking 'How are you?' and genuinely meaning it, and allowing silences — people often share the most important thing only when given space. Validate that their reactions are normal, avoid language that defines people by their diagnosis, and be alert to safeguarding and domestic stress. One caution: do not 'open up' a family's distress in a consultation unless there is time to help them regain control — and make sure the setting is private enough for them to speak freely.
This content is intended for healthcare professionals only. The views expressed are those of the presenters and do not necessarily reflect those of Excellence in Pediatrics; their inclusion does not imply endorsement. The content is provided for educational purposes only and does not constitute medical advice or replace independent clinical judgement.