New Research Publication – Parents experiences of diagnosis and specialist care of children’s rare birthmarks

Arteriovenous malformations (AVM) and Congenital melanocytic naevi (CMN) are rare birthmark conditions that can affect appearance and emotional wellbeing. Although parents play a key role in caring for affected children, little is known about their experiences of diagnosis and specialist care. This study explored parents’ experiences of diagnosis onwards and the role of specialist services in supporting families.

23 parents were interviewed (17 mothers and 6 fathers) of children with CMN or AVM. Interviews explored diagnosis, healthcare experiences, and family life, and were analysed to identify common themes.

Four themes emerged:

1. “We don’t know what on Earth is going on, what to expect of anything”: parents’ experiences of coming to the first appointment – Parents felt uncertain and overwhelmed about the diagnosis and what to expect.
2. The shift from nomads to settlers in the healthcare system – Specialist care helped parents move from feeling lost and searching for answers to feeling more secure and supported.
3. Making room for CMN or AVM – Families gradually adjusted to living with the condition as part of everyday life.
4. Moving forwards with CMN or AVM – Over time, parents developed confidence and coping strategies and became more focused on their child’s future.

The findings show that parents’ support needs change over time and will help specialist teams improve guidance and care for families.

Read the full paper HERE.

Morgan Zolkwer