ASPO Abstracts
Caregiving barriers among Hispanic/Latino parents of a childhood cancer survivors in a safety-net hospital: a qualitative study
Category: Cancer Health Disparities
Conference Year: 2022
Abstract Body:
Purpose: Hispanic/Latino parents and childhood cancer survivors (CCS) have a greater risk for experiencing social and healthcare inequalities, thus, the purpose of this qualitative study was to describe Hispanic/Latino parents' perception of barriers to their caregiving experience. Methods: Between July to September 2020, semi-structured phone interviews were conducted among 15 Hispanic/Latino parents (in English and Spanish). Parents were recruited using a purposive sampling method from a safety-net hospital in Los Angeles County. Interviews were audio-recorded, professionally transcribed and analyzed in the language in which they were conducted. Two coders independently reviewed transcripts coded them following reflexive thematic analysis and using elements of grounded theory methodology (e.g., gerund coding and memo-writing) on Dedoose.Results: The majority of caregivers were mothers caring for CCS of leukemia who had finished treatment more than two years prior. Four themes were identified as barriers to caregiving: 1) large burden and magnitude of caregiving responsibilities; 2) financial hardships; 3) illness misconceptions; and 4) uncertain immigration and citizenship status. All caregivers expressed concerns about the overwhelming nature of caring for a child with cancer, and many described deteriorations in their own health and well-being. Financial instability, transportation difficulties, and work disruptions were all identified as barriers, resulting in caregiver distress. Caregivers also shared the challenges they experienced with navigating the healthcare system, with seeking care despite lack of legal residency, and with staying afloat despite limited employment opportunities. Misconceptions about cancer were identified as barriers to caregiving, as caregivers faced adversarial public perceptions and attitudes influenced by negative cultural stigma (e.g., caregivers described being blamed for their child's cancer diagnosis).Conclusion: Results from this study provide insight into the personal experiences of Hispanic/Latino parents of CCS who are an understudied population. Our findings can guide recommendations to address caregiver burden for this at-risk population at the individual, healthcare system, and policy/legislative level.
Keywords: Caregivers, childhood cancer survivors, barriers, Hispanic