Patient safety and children with long-term health conditions

4 Sep

by Sue Kirk, Professor of Family and Child Health

Juvenile diabetes patient with his mother

Increasing numbers of children and young people are living with a long-term health condition such as diabetes or asthma. Over the past 20 years we have also seen more children with complex healthcare needs being cared for in their own home rather than in hospital.  These changes have led to parents (and the children themselves) taking on roles and responsibilities that would have been unthinkable in the past. This includes monitoring their individual health, managing their own medication and treatment, using complex medical equipment such as ventilators, acting as care coordinators, and in some cases organising and managing home care teams.

Parents and young people don’t only manage these health conditions within the relatively controlled environment of the home. Children and young people go to school and college, take part in social activities with their peers and families, go on holiday and may spend time in hospices and other care settings. They may also receive services from a vast array of health, social care and voluntary sector organisations. This presents challenges for communication, both between professionals and between families and professionals, and consequently for care integration. This is worsened as young people transfer to adult services.

Surprisingly there has been little research that has examined patient safety for this marginalised group. We don’t know how families or health care professionals understand, monitor and manage safety in this complex situation or how safety could be promoted and improved.  This is what we intend to look at as part of the Safety in Marginalised Groups: Patients and Carers theme of the Greater Manchester PSTRC.

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