Barriers and facilitators of Hispanic/Latino parents caregiving for a childhood cancer survivor: a qualitative study

We extend previous research on Hispanic/Latino caregiver experiences by exploring in-depth the perceived barriers and facilitators of parents in a safety-net clinic who are the primary caregivers throughout their child’s cancer journey. While there have been studies published on Hispanic/Latino caregivers of older adults, there has been little published on identifying the barriers and facilitators of caregiving experiences of parents. Given the intersecting complexities of this safety-net children’s clinic in Los Angeles, which serves primarily Hispanic, recently immigrated, Spanish-speaking, and Medicaid population, it is important to assess whether this vulnerable population has unique barriers and facilitators from previously published literature. Semi-structured phone interviews were conducted among 15 Hispanic/Latino parents caring for their child who was diagnosed with cancer. All interviews were conducted in English or Spanish based on the participant’s language preference. The interviews were recorded using a digital audio device and transcribed by a bilingual professional transcription service. To conserve the meaning of the interviews, they were transcribed and analyzed in the language in which they were conducted. Two bilingual coders independently reviewed transcripts coded them following reflexive thematic analysis and using elements of grounded theory methodology on Dedoose. This study revealed that multilevel factors impact Hispanic/Latino parents’ cancer care management. At the individual level, the magnitude of the caregiving responsibility acted as a barrier, while parents' self-described “relationship with God” acted as a facilitator. Interpersonal relationships, including familial flexibility and fluid roles in relation to caregiving and a positive relationship with the medical care team, were facilitators for caregivers. However, others' perceptions or misconceptions of their child’s illness were a barrier to caregiving. At the organizational and policy level, external financial resources and assistance navigating the application process were beneficial for parents. While issues related to financial hardship and uncertain immigration and citizenship status resulted in caregiver distress and challenges navigating the healthcare system. These findings can guide recommendations to address caregiver burden for this at-risk population at various levels, including suggestions for the healthcare system and policy level.