Exploring the perceptions and experience with costs associated with cancer care among Chinese and Asian Indian patients and caregivers: a qualitative study

Abstract Background As the cost of cancer care continues to rise, financial concerns of patients and families are increasingly common. There is a paucity of data about the financial burden that Asian patients face when diagnosed with cancer. An understanding of the perceptions of and experience with financial burden of cancer care among minority patients is critical to the development of culturally appropriate interventions to address financial distress. This qualitative study sought to explore the perceptions and experiences of Chinese and Asian Indian elderly cancer patients and their caregivers in regards to the costs of cancer and cancer related care. Methods We conducted semi-structured interviews among 17 cancer patients and 14 caregivers. Patients were age 55 or older; had a history of any malignancy type or stage; currently on cancer directed therapy or had received therapy in the past. Caregivers were any age and were identified by the patient as a family member or caregiver. Chinese patients (n = 10) and caregivers (n = 10) were recruited from Chicago's Chinatown and Indian Asian patients (n = 7) and caregivers (n = 4) were recruited from an academic medical center in Chicago. All interviews were transcribed, coded, and analyzed for emergent themes. Results Among Chinese and Asian Indian patients 4 predominant themes emerged: 1) Concerns over financial loss, 2) Role of family duty, 3) Unexpected costs associated with cancer care, and 4) Lack of knowledge and/or reluctance to seeking external financial support during cancer care. Two predominant themes arose from the caregiver group: 1) Role of family duty and 2) Lack of knowledge or reluctance to seeking resources around financial concerns for family members with cancer. Conclusion These findings begin to inform opportunities to further study and better address financial burden in two Asian populations.