Access to support for Australian cancer caregivers: in-depth qualitative interviews exploring barriers and preferences for support

Abstract Introduction: Caregivers are critical to patient-centered care and can benefit from supportive care interventions such as counseling. However, the barriers to supportive care for caregivers are poorly understood. This Australian study explores caregivers’ experiences when accessing care to support their own wellbeing. Method: Semi-structured telephone interviews were conducted with a diverse sample of distressed caregivers who contacted the Cancer Council New South Wales and Victoria helpline. Grounded theory framework informed the generation of themes with data analyzed by two independent coders. Results: Caregivers (n = 14) included: partners (n = 8), parents (n = 3), child (n = 1), sibling (n = 1), and friend (n = 1). Two major themes emerged. First, caregivers face multiple barriers when accessing supportive care including: deprioritization of their needs; limited opportunity to express needs; poor availability; lack of time and lack of local services. Secondly, caregivers preferred the delivery of support to be: via face-to-face or telephone; separate to patient; and to occur while the patient receives treatment. Conclusions: Tailored pathways for new and existing services that are flexible and accessible are important in supporting caregiver's wellbeing. Caregivers must be encouraged to acknowledge and discuss their own needs.