A collaborative study by Curtin University’s Professor Lauren Breen and NCARD’s Professor Gary Lee has highlighted the unique psychosocial needs of mesothelioma patients and their caregivers.

Published in Psycho-Oncology, the study is one of the largest investigations of its kind, involving interviews and questionnaires with 61 participants: 36 patients and 25 caregivers.

Key Findings

The study revealed four critical areas requiring additional support:

1. Tailored information: Patients and carers need accessible, revisitable resources to understand and manage their condition.
2. Coordination assistance: Managing medical appointments and treatment logistics was a common challenge.
3. Social and peer support: Improved networks are crucial for emotional and practical assistance.
4. Psychological services: Addressing patients’ and carers’ mental health concerns is essential.

Insights on experiences

Patients reported moderate quality of life but found disclosing their diagnosis to loved ones particularly distressing, especially when involving children and grandchildren. Concerns about the emotional and financial impacts on their families were frequently raised.

Carers, while generally reporting positive caregiving experiences, faced risks of prolonged grief disorder, with one in five showing vulnerability.

Implications and Future Directions

This research underscores the importance of individualised care pathways integrating psychological support into the multidisciplinary team. Tailored mental health interventions could significantly benefit both mesothelioma patients and carers.

Funded by the Dust Diseases Board iCare Discovery Research Grant, the study exemplifies collaborative research involving Curtin University, the University of Western Australia, Edith Cowan University, and Sir Charles Gairdner Hospital.