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结构性和中观层面因素对照顾癌症患儿的照顾者应对能力的影响:一项定性研究。

The Impact of Structural and Meso-Level Factors on Caregiver Coping Abilities When Supporting a Child with Cancer: A Qualitative Study.

机构信息

Oregon Clinical and Translational Research Institute (OCTRI), Oregon Health and Science University, 3181 SW Sam Jackson Park Road, Portland, OR 97239, USA.

Department of Pediatrics, Division of Pediatric Hematology and Oncology, University of Utah, 81 N Mario Capecchi Dr., Salt Lake City, UT 84113, USA.

出版信息

Int J Environ Res Public Health. 2024 Jul 11;21(7):907. doi: 10.3390/ijerph21070907.

Abstract

Family caregivers of children diagnosed with cancer often experience periods of significant stress. We provide an in-depth examination of the impacts of structural (health care and leave policies) and meso-level (organizations and communities/social networks) factors on caregiver coping during childhood cancer treatment. We conducted a secondary analysis of a comprehensive qualitative dataset examining the impacts of structural and meso-level factors on caregiver coping from in-depth, semi-structured interviews with 49 caregivers representing 38 unique cases of childhood cancer. Using a modified grounded theory approach, transcripts were analyzed using inductive thematic analysis. Caregivers experienced multiple and often intersecting structural and meso-level factors, both facilitating and impeding their ability to cope during their child's cancer treatment. Our analysis revealed the following themes: having few out-of-pocket medical expenses, access to paid time off from employment, and support from one's health system, organizations, or community/social networks fostered caregiver coping. Significant financial burdens due to cancer treatment, having to take unpaid leave from employment, remaining employed regardless of one's circumstances, and lack of support from one's health system, organizations, or community/social networks hindered caregiver coping. Our findings point to several policies that may ease caregiver burden and facilitate caregiver coping during childhood cancer treatment.

摘要

癌症患儿的家庭照顾者经常会经历一段压力较大的时期。我们深入研究了结构(医疗保健和休假政策)和中观层面(组织和社区/社会网络)因素对儿童癌症治疗期间照顾者应对能力的影响。我们对一个全面的定性数据集进行了二次分析,该数据集通过对 49 名照顾者的深入、半结构化访谈,考察了结构和中观层面因素对照顾者应对的影响,这些照顾者代表了 38 个独特的儿童癌症病例。使用改良的扎根理论方法,通过归纳主题分析对转录本进行了分析。照顾者经历了多种且经常相互交叉的结构和中观层面因素,这些因素既促进了他们在孩子癌症治疗期间的应对能力,也阻碍了他们的应对能力。我们的分析揭示了以下主题:医疗费用支出很少、有带薪休假、并得到其医疗系统、组织或社区/社会网络的支持,这些都有助于照顾者应对。癌症治疗带来的巨大经济负担、不得不休无薪假、无论情况如何都要继续工作、以及得不到医疗系统、组织或社区/社会网络的支持,这些都阻碍了照顾者的应对。我们的研究结果指出了一些可能减轻照顾者负担并促进儿童癌症治疗期间照顾者应对能力的政策。

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