印度尼西亚接受家庭为基础的儿科姑息治疗的癌症儿童的家庭照顾者的经验：一项定性研究。
Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study.
机构信息
Department of Medical Surgical Nursing, Faculty of Medicine, Public Health and Nursing, Universitas, Gadjah Mada, Yogyakarta, Indonesia.
Department of Nursing, Sekolah Tinggi Ilmu Kesehatan Tarumanagara, Jakarta, Indonesia.
出版信息
BMC Palliat Care. 2022 Jun 7;21(1):104. doi: 10.1186/s12904-022-00986-5.
BACKGROUND
Caring for children living with life-threatening and life-limiting illnesses can be challenging. Parents' roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights into the provision of home-based Pediatric Palliative Care (PPC) for seriously ill children. This study is aimed at exploring the experiences of family caregivers of children diagnosed with cancer while receiving home-based PPC.
METHODS
This was a qualitative study. This study used semi-structured interviews which were audio-recorded with family caregivers of twelve children diagnosed with cancer who had received home-based PPC. The interviews were transcribed verbatim. The data were analyzed using qualitative content analysis. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.
RESULTS
Three main themes emerged: (1) The implementation of home-based PPC; (2) The benefits of home-based PPC; and (3) The family caregivers' hopes of the home-based PPC service and their impressions of home-based PPC. The implementation of home-based PPC described the experiences of family caregivers in receiving home-based PPC provided by nurses with particular attention to the bio-psychosocial-spiritual aspects. Family caregivers experienced several benefits from the home-based PCC service, where holistic care was provided for both the patient and the family. Family caregivers shared their hopes prior to receiving support from competent health care professionals to care for their sick child at home and improve the child's quality of life. They confirmed that these hopes were fulfilled through the home-based PPC service delivered by Rachel House.
CONCLUSIONS
Home-based PPC provides several benefits with a positive impact for both the children diagnosed with cancer as well as their families. Nurses involved in the home-based PPC service provide holistic care with a family-centered approach. We believe that children with terminal illnesses and their families need and deserve home-based PPC during difficult times.
背景
照顾患有危及生命和生命有限疾病的儿童可能具有挑战性。父母作为主要照顾者的角色可能很复杂，承担着广泛的责任。家庭照顾者的经验可以为严重疾病儿童的家庭提供儿科姑息治疗（PPC）提供关键见解。本研究旨在探讨接受家庭姑息治疗的癌症患儿家庭照顾者的经验。
方法
这是一项定性研究。本研究使用半结构式访谈，对接受家庭姑息治疗的 12 名癌症患儿的 12 名家庭照顾者进行了访谈。访谈内容逐字记录。使用定性内容分析对数据进行分析。该研究的报告基于定性研究报告的统一标准（COREQ）清单。
结果
出现了三个主要主题：（1）家庭姑息治疗的实施；（2）家庭姑息治疗的好处；（3）家庭照顾者对家庭姑息治疗服务的希望以及他们对家庭姑息治疗的印象。家庭姑息治疗的实施描述了家庭照顾者接受护士提供的家庭姑息治疗的经验，特别关注生物心理社会精神方面。家庭照顾者从家庭姑息治疗服务中获得了一些好处，在家庭姑息治疗服务中为患者和家庭提供了全面的护理。家庭照顾者在接受合格的医疗保健专业人员的支持之前，分享了他们照顾生病孩子并在家中提高孩子生活质量的希望。他们确认通过雷切尔之家提供的家庭姑息治疗服务实现了这些希望。
结论
家庭姑息治疗为癌症患儿及其家庭提供了多项益处，具有积极影响。参与家庭姑息治疗服务的护士提供以家庭为中心的全面关怀。我们相信，患有绝症的儿童及其家庭在困难时期需要并应得家庭姑息治疗。
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