Background:

Children with brain cancer and their families have complex care needs throughout diagnosis, active treatment, long-term survivorship and the palliative phase of illness. This study aimed to explore the perspectives of Australian specialist clinicians on barriers and facilitators to healthcare for children with brain cancer and their families.

Methods:

A qualitative approach was taken using semi-structured interviews. Eligible participants were clinicians of any discipline providing care to children with brain cancer and their families in Australia. Interviews were conducted by telephone and asked about perceived strengths and weaknesses in healthcare and available resources for this population. Content analysis used a directed approach with inductive refinement.

Results:

Eleven clinicians participated, 5 of whom were medical, 3 nursing, and 3 allied health. The over-arching theme was that the rarity and diversity of brain tumours in children confers challenges to care that lead to variation in practice. Participants reported having to adapt care from guidelines and patient/family resources designed for adults with brain cancer and children with other cancers, and rely on clinical and research networks. Specialist comprehensive cancer care was generally perceived to offer the best model for accommodating the unique needs of each child/family, but barriers to access were highlighted for children in remote Australia, and long-term follow-up was perceived to be inadequate regardless of where children lived.

Discussion:

Future research should focus on developing and evaluating guidelines and other resources specific to children with brain cancer, as well as informing suitable models for long-term follow-up care for survivors.