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对在法国本土接受治疗的法属西印度群岛和圭亚那儿童的儿科癌症护理中连根拔起现象的研究:一项定性研究。

Study of Uprooting in Pediatric Cancer Care for Children From the French West Indies and Guiana Treated in Mainland France: A Qualitative Study.

作者信息

Vanlaer Chloe, Dichamp Claire, Elenga Narcisse, Delion Frederique, Raimondo Graziella, Fasola Sylvie, Haghiri Sandrine, Michaux Katell, Hatchuel Yves, Faivre Benjamin, Seigneur Etienne, Simbozel Marie, Neven Quentin, Khouri Céline, Felix Arthur, Ogrizek Anais

机构信息

Department of Pediatric Oncology, Institut d'Hématologie et d'Oncologie Pédiatrique, Hospitalisation à domicile, Lyon, France.

Department of Pediatrics, Children Hematology and Oncology Unit, University Hospital of Martinique, Martinique, France.

出版信息

Psychooncology. 2025 Aug;34(8):e70242. doi: 10.1002/pon.70242.

DOI:10.1002/pon.70242
PMID:40729429
Abstract

BACKGROUND

A diagnosis of childhood cancer has a profound impact on families, especially when treatment requires relocation. Children from the French West Indies (FWI) and French Guiana (FG) are often treated in specialized centers in mainland France, resulting in physical and cultural uprooting that poses unique psychosocial challenges.

AIMS

This study explores the impact of uprooting on the dynamics and well-being of these families.

METHODS

This qualitative observational study used semi-structured interviews with parents of pediatric cancer patients from the FWI and FG. Eligible participants were French-speaking primary caregivers with parental authority who accompanied their children for treatment in mainland France. Interviews were conducted between November 2023 and February 2024, recorded, transcribed, and analyzed using Interpretative Phenomenological Analysis with NVivo software.

RESULTS

Among the 10 families interviewed, uprooting significantly disrupted family dynamics and required complex adjustments. Parents reported challenges in accessing resources to manage the stress of their child's diagnosis and treatment, but expressed overall satisfaction with the healthcare received. Psychological support was essential, with many finding comfort in religious practices. Financial and social difficulties were common. Children generally adapted better than expected but struggled with separation from their familiar environment, while siblings often felt abandoned.

CONCLUSION

This study is the first to examine the impact of uprooting on childhood cancer treatment for families from this region. Providing care closer to home may reduce psychological and financial burdens. Recommendations include establishing regional pediatric oncology units and increased support from social services. Future research should focus on non-accompanying parents, siblings, and schooling to understand the long-term effects on survivors and develop targeted psychological and social interventions.

摘要

背景

儿童癌症的诊断对家庭有着深远影响,尤其是在治疗需要搬迁的情况下。来自法属西印度群岛(FWI)和法属圭亚那(FG)的儿童通常在法国本土的专科中心接受治疗,这导致了身体和文化上的背井离乡,带来了独特的心理社会挑战。

目的

本研究探讨背井离乡对这些家庭的动态和幸福的影响。

方法

这项定性观察研究对来自FWI和FG的儿科癌症患者的父母进行了半结构化访谈。符合条件的参与者是具有父母权威的法语主要照顾者,他们陪同孩子在法国本土接受治疗。访谈于2023年11月至2024年2月进行,记录、转录并使用NVivo软件进行解释现象学分析。

结果

在接受访谈的10个家庭中,背井离乡严重扰乱了家庭动态,需要进行复杂的调整。父母报告说,在获取资源以应对孩子诊断和治疗的压力方面存在挑战,但对所接受的医疗保健总体表示满意。心理支持至关重要,许多人在宗教活动中找到了慰藉。经济和社会困难很常见。儿童总体上比预期适应得更好,但与熟悉环境的分离让他们感到挣扎,而兄弟姐妹常常觉得被抛弃了。

结论

本研究首次考察了背井离乡对该地区家庭儿童癌症治疗的影响。在离家更近的地方提供护理可能会减轻心理和经济负担。建议包括建立地区儿科肿瘤病房,并增加社会服务的支持。未来的研究应关注非陪同父母、兄弟姐妹和学校教育,以了解对幸存者的长期影响,并制定有针对性的心理和社会干预措施。

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本文引用的文献

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Supportive care needs of adolescents and young adults 5 years after cancer: a qualitative study.癌症确诊5年后青少年及青年成人的支持性护理需求:一项定性研究
Front Psychol. 2024 Apr 30;15:1268113. doi: 10.3389/fpsyg.2024.1268113. eCollection 2024.
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Systemic lupus of pediatric onset in Afro-Caribbean children: a cohort study in the French West Indies and French Guiana.
儿科发病的非裔加勒比儿童系统性红斑狼疮:法属西印度群岛和法属圭亚那的队列研究。
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A Systematic Mixed-Studies Review of Hope Experiences in Parents of Children With Cancer.一项关于癌症患儿父母希望体验的系统性混合研究综述。
Cancer Nurs. 2022;45(1):E43-E58. doi: 10.1097/NCC.0000000000000841.
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The end of cancer treatment experience for children, adolescents, and their parents: A systematic review of the literature.儿童、青少年及其父母癌症治疗体验的结束:文献系统综述。
J Psychosoc Oncol. 2020 Sep-Oct;38(5):573-591. doi: 10.1080/07347332.2020.1769795. Epub 2020 Jun 30.
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"Basically, You Had Cancer and Now You Don't": Exploring the Meaning of Being a "Cancer Survivor" Among Adolescents and Young Adult Cancer Survivors.“基本上,你曾患过癌症,现在没有了”:探讨青少年和青年癌症幸存者中“癌症幸存者”这一身份的意义。
J Adolesc Young Adult Oncol. 2020 Aug;9(4):534-539. doi: 10.1089/jayao.2019.0176. Epub 2020 Apr 2.
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Letting Kids Be Kids: A Quality Improvement Project to Deliver Supportive Care at Home After High-Dose Methotrexate in Pediatric Patients With Acute Lymphoblastic Leukemia.让孩子做孩子:一项质量改进项目,旨在为急性淋巴细胞白血病患儿大剂量甲氨蝶呤治疗后在家中提供支持性护理。
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