The objective of this study is to explore patient and caregiver factors that shape the use of available resources to support caregiving for lung cancer patients undergoing treatment. A mixed-method study was conducted at one regional cancer centre within the Province of Ontario, Canada, using concurrent triangulation design. Adult patients with lung cancer (n=46) and their caregivers (n=42) (37 patient-caregiver dyads) were invited to complete a one-time study survey. Informal caregivers (n=20) also participated in a one-time semi-structured interview. Descriptive statistics and Pearson’s correlation were used to examine patterns of resource utilization and associations among study variables. Content analysis was conducted to analyse data from interviews. Informal caregivers demonstrated low overall resource utilization. Education materials and homecare support were the most frequently used but perceived as minimally helpful. Homecare support was associated with negative overall experience. Least used resources included paid help, caregiver support groups and volunteer drivers but volunteer drivers were associated with less caregiver burden. Qualitative analysis revealed three themes (1) emotional labour of caregiving and respite from known contacts, (2) perception of formal resources as inappropriate for non-medical needs and (3) financial needs and role conflicts remain to be overcome. Informal caregivers are most likely to turn to known existing social networks for support as a result of accessibility and convenience, which are central to addressing most caregiver needs except for financial needs and role conflict. Future research should aim to remove barriers to resource utilization and strengthen existing support and resources.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).