Challenges, rewards, and lessons learned from family and community caregivers of individuals with serious mental illness and cancer.

Abstract

The caregiving experience for individuals with serious mental illness (SMI) and cancer has not been explored in previous cancer caregiver research. This study assessed the challenges, rewards, and lessons learned from this unique population of caregivers. We conducted qualitative interviews with 13 caregivers (9 family caregivers, 4 community caregivers) of patients recently diagnosed with head and neck, breast, lung, or gastrointestinal cancer and SMI who participated in a single-arm pilot of person-centered collaborative care. Interviews were transcribed and analyzed using inductive and deductive approaches. Investigators developed a coding scheme based on the interview guide. Interviews were double-coded and themes were identified via an iterative consensus process consistent with a content analysis framework. Comparisons between community and family caregiver experiences were explored. Caregiving challenges included the impact of mental health symptoms on timely diagnosis, treatment, and coordination of care and lack of resources specific to SMI and cancer caregiving. Family caregivers valued increased closeness and meaningfulness in their relationships. Family and community caregivers found it rewarding to be part of a person-centered care model that was effective for the patient. Lessons learned included tending to their own needs too, and the importance of advocacy and a team approach to decrease mental health stigma and coordinate care. This study highlights the complex challenges and rewards experienced by family and community caregivers for individuals with cancer and SMI. Tailored approaches to support caregivers as individuals are needed. Additional research on community caregiver-patient dyads and non-spousal family caregiver-patient dyads are needed to inform intervention development.