Psychological Care For Child & Family With Mucopolysaccharidoses

Dr. Rust begins by highlighting the wide-ranging psychological impact of chronic illness on both the affected child and the family. He shares research showing that children with chronic conditions are twice as likely to experience mental health issues, and that parents—particularly mothers—and siblings also suffer significantly higher stress and emotional burden. Divorce rates among families of chronically ill children are also markedly higher, underlining the deep social consequences of long-term caregiving.

The webinar addresses the additional stressors introduced by the pandemic: isolation, limited access to care, increased anxiety, and disruption to daily routines. However, Dr. Rust focuses not only on the risks but also on the remarkable resilience of families. Drawing on the concept of “ordinary people in extraordinary situations,” he encourages pediatricians to recognize families’ strengths and provide them with psychological first aid—practical, non-intrusive, compassionate support that does not require a psychologist.

He introduces the Kubler-Ross grief model as a useful framework for understanding emotional responses to both a diagnosis and the pandemic, emphasizing that people move through denial, anger, depression, bargaining, and ultimately acceptance. He advises clinicians to offer different types of support depending on where families are in this cycle—from clear information early on, to emotional support, to help rebuilding routines and restoring function.

Throughout the session, Dr. Rust offers actionable advice. Pediatricians should validate families’ emotional responses, encourage hope, foster social support, and promote structure in daily life. He underscores the importance of safeguarding, being aware of domestic stress, and avoiding language that stigmatizes or defines individuals by their diagnosis.

He also stresses the importance of checking in sincerely—simply asking “How are you?”—and allowing space for silence so families can open up. Finally, he offers reassurance that most families will cope well and that health professionals can make a big difference by showing kindness, patience, and presence.

This webinar offers a compelling reminder that, in addition to medical care, psychological understanding and simple human connection are powerful tools in supporting families living with MPS.

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