伊朗癌症儿童及其家庭对姑息治疗未满足的需求:定性研究

IF 0.4 Q4 ONCOLOGY
Somaye Pouy, Zahra Taheri Ezbarami, M. Rassouli, Bahram Darbandi, Nazila Javadi-Pashaki
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引用次数: 0

摘要

背景:姑息关怀是癌症儿童及其家庭的首要权利之一。确定这些儿童在姑息治疗方面尚未得到满足的需求对于提供高质量的护理非常重要。研究目的本研究旨在解释正规和非正规护理人员对癌症儿童及其家庭未满足的姑息治疗需求的看法。研究方法这项定性研究于 2020 年 10 月 1 日至 2021 年 5 月 15 日在拉什特(伊朗北部)的一家儿童医院进行。本研究通过有目的的抽样,招募了 25 名符合纳入标准的护理人员(护士、医生、祖母、姐妹、姑姑、邻居和癌症患儿的父母)和 5 名癌症患儿,对他们进行了深入的半结构化访谈。访谈一直持续到数据饱和为止。根据 Elo 和 Kyngas 提出的方法,并以全国共识项目(NCP)框架为基础,进行了定向内容分析。分析结果由 MAXQDA2020 软件进行管理。为确保数据的可信度,采用了古巴和林肯标准。研究结果参与者的平均年龄为(32.40 ± 1.4)岁,共提取了 1450 个代码。提取的主题为 "整体护理的需求",包括 "护理的结构和过程"、"护理的身体方面"、"护理的心理方面"、"护理的社会方面"、"护理的文化方面"、"临终病人的护理"、"护理的精神、宗教和存在方面 "等 7 个大类和 23 个小类。结论癌症儿童及其家人在生理、心理、精神和社交方面有许多需求。为满足这些需求,建议为姑息关怀提供必要的基础设施,努力为癌症儿童及其家庭提供公正的姑息关怀服务,增强照护者的能力,组建跨学科团队,提高对癌症和临终关怀的文化意识。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Unmet Needs of Palliative Care Among Iranian Children with Cancer and Their Families: A Qualitative Study
Background: Palliative care is one of the primary rights of children with cancer and their families. Identifying the unmet needs of palliative care for these children is important in providing high-quality care. Objectives: The present study aimed at explaining the perception of formal and informal caregivers about the unmet palliative care needs of children with cancer and their families. Methods: This qualitative study was conducted from October 1, 2020, to May 15, 2021, in one of the children’s hospitals in Rasht (Northern Iran). This study enrolled 25 caregivers (nurses, doctors, grandmothers, sisters, aunts, neighbors, and parents of children with cancer) and 5 children with cancer, who met the inclusion criteria by purposeful sampling to participate in in-depth and semi-structured interviews. The interviews continued until data saturation. A directed content analysis was performed according to the Elo and Kyngas proposed approach and based on the National Consensus Project (NCP) framework. The findings were managed by MAXQDA2020 software. Guba and Lincoln criteria were used to ensure the trustworthiness of the data. Results: The average age of the participants was 32.40 ± 1.4 years, and 1,450 codes were extracted. The extracted theme was “the need for holistic care”, which included 7 main categories such as “the structure and process of care”, “physical aspects of care”, “psychological aspects of care”, “social aspects of care”, “cultural aspects of care”, “care of the patient nearing the end of life”, and “spiritual, religious, and existential aspects of care”, and 23 subcategories. Conclusions: Children with cancer and their families have many physical, psychological, spiritual, and social needs. To meet these needs, it is suggested to provide the necessary infrastructure for palliative care, strive for justice in access to palliative care services for children with cancer and their families, empower caregivers, form an interdisciplinary team, and promote cultural awareness regarding cancer and end-of-life care.
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来源期刊
CiteScore
1.10
自引率
0.00%
发文量
67
期刊介绍: International Journal of Cancer Management (IJCM) publishes peer-reviewed original studies and reviews on cancer etiology, epidemiology and risk factors, novel approach to cancer management including prevention, diagnosis, surgery, radiotherapy, medical oncology, and issues regarding cancer survivorship and palliative care. The scope spans the spectrum of cancer research from the laboratory to the clinic, with special emphasis on translational cancer research that bridge the laboratory and clinic. We also consider original case reports that expand clinical cancer knowledge and convey important best practice messages.
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