Psychosocial Needs of People Living With Pleural Mesothelioma and Family Carers: A Mixed Methods Study

BACKGROUND: Mesothelioma is a cancer of growing global incidence, especially in developing countries, with unique complex psychosocial impacts on patients and their carers.

AIMS: To provide a comprehensive understanding of the psychosocial needs of people living with pleural mesothelioma and family carers.

METHODS: A mixed methods design with 61 semi-structured interviews and psychometrically validated questionnaires to assess pleural mesothelioma patients' (n = 36) quality of life and frailty and carers' (n = 25) caregiving experiences, quality of life, and pre-loss prolonged grief symptoms.

RESULTS: People with mesothelioma (29 men, 7 women, aged 46-89 years) indicated moderate quality of life; 18 (50%) met criteria for frailty. Current carers (21 women, 4 men; aged 41-79 years) generally reported positive caregiving experiences and high quality of life; 5 (20%) scored in the range indicative of risk for prolonged grief disorder. Four themes were generated: a desire for tailored information with bespoke detail, assistance to coordinate tasks of treatment, improved social and peer support, and effective psychological services. Needs varied, with main concerns being about breaking the news to spouses/children, the impact of the disease and death on family, loss of personal future, managing psychological symptoms, and avoiding burden.

CONCLUSIONS: These specific and unmet psychosocial needs provide a strong basis for individualised care pathways to address these needs via the integration of psychology into the multidisciplinary care team and the development and evaluation of mental health and wellbeing interventions for mesothelioma patients and carers. Doing so will reduce psychosocial distress and improve residual vitality.