Department of Population and Public Health Sciences, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.
Department of Population and Public Health Sciences, Keck School of Medicine, University of Southern California, 2001 N. Soto Street, 3rd Floor, Room 312-30, Los AngelesLos Angeles, CA, 90032, USA.
Cancer Causes Control. 2023 Feb;34(2):151-160. doi: 10.1007/s10552-022-01651-1. Epub 2022 Nov 17.
This qualitative study aimed to explore Hispanic parents of childhood cancer survivors (CCS) perceptions of facilitators and barriers to their caregiving experience.
We conducted semi-structured phone interviews with 15 Hispanic/Latino parents (English and Spanish). Parents were recruited using a purposive sampling method in a safety-net hospital in Los Angeles County from July-September 2020. Interviews were audio-recorded, professionally transcribed, and analyzed in the language they were conducted. Two coders independently coded interviews following reflexive thematic analysis and elements of grounded theory methodology.
Most caregivers were mothers caring for leukemia CCS who had finished treatment more than 2 years prior. Caregivers expressed gratitude to social workers for introducing and aiding with the application process for safety-net programs that enabled caregivers to focus on their child's care and well-being. Caregivers revealed the importance of supportive communication with the medical team, particularly after their child's treatment was considered complete. All caregivers found caring for a child with cancer overwhelming, and many described deteriorations in their health and well-being. Financial instability, transportation difficulties, and work disruptions were identified as barriers, resulting in caregiver distress. Caregivers also shared the challenges they experienced navigating the healthcare system, seeking care despite lack of legal residency, and staying afloat despite limited employment opportunities.
Improving navigation to resources and improving relationships with the medical team may reduce the perceived caregiving burden among Hispanic/Latino caregivers throughout their family's cancer journey.
本定性研究旨在探讨儿童癌症幸存者（CCS）的西班牙裔父母对其照顾经验的促进因素和障碍的看法。
我们于 2020 年 7 月至 9 月在洛杉矶县的一家安全网医院采用目的性抽样方法，对 15 名西班牙裔/拉丁裔父母（英语和西班牙语）进行了半结构化电话访谈。访谈以录音形式记录，并由专业人员进行转录，分析时使用访谈时使用的语言。两位编码员采用反思性主题分析和扎根理论方法的要素，对访谈进行独立编码。
大多数照顾者是照顾已完成治疗 2 年以上白血病 CCS 的母亲。照顾者感谢社工介绍并协助申请安全网计划，使照顾者能够专注于孩子的护理和福祉。照顾者表示，与医疗团队进行支持性沟通很重要，尤其是在孩子的治疗被认为已经结束之后。所有照顾者都觉得照顾癌症儿童压力很大，许多人表示自己的健康和福祉恶化。经济不稳定、交通困难和工作中断被确定为障碍，导致照顾者感到痛苦。照顾者还分享了他们在医疗保健系统中遇到的挑战，包括在没有合法居住权的情况下寻求护理，以及在就业机会有限的情况下维持生计。
改善资源获取途径和改善与医疗团队的关系，可能会减轻西班牙裔/拉丁裔照顾者在其家庭癌症治疗过程中的照顾负担。
