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当孙辈被诊断出癌症时,祖父母的急性和长期心理社会后果 - GROKids 项目:一项基于人群的混合方法研究方案。

Acute and long-term psychosocial consequences in grandparents when a grandchild is diagnosed with cancer - the GROKids Project: a population-based mixed-methods study protocol.

机构信息

Faculty of Health Sciences and Medicine, University of Lucerne, Alpenquai 4, 6005, Lucerne, Switzerland.

Division of Hematology/Oncology, Children's Hospital of Eastern Switzerland, St Gallen, Switzerland.

出版信息

BMC Psychol. 2023 Sep 18;11(1):280. doi: 10.1186/s40359-023-01309-w.

Abstract

BACKGROUND

Grandparents play a crucial role in providing their families with love, support, and wisdom, often also supporting them in practical and financial ways. The psychosocial effects experienced by grandparents when a grandchild is diagnosed with an illness can be significant, including increased stress, anxiety, grief, and disruptions in their own lives. Yet, the experience of grandparents is often overlooked in the literature.

METHODS/DESIGN: The GROKids Project aims to investigate how grandparents are affected by a grandchild's cancer diagnosis. It employs a mixed-methods approach and consists of three studies: a longitudinal cohort study (Study 1) and a qualitative study (Study 2) involving grandparents of children with a recent cancer diagnosis, and a cross-sectional study (Study 3) of grandparents of childhood cancer survivors. Study 1 covers four time points over two years after the cancer diagnosis, while Study 2 explores the lived experiences of a subsample of these grandparents. Study 3 collects data from grandparents of childhood cancer survivors diagnosed 3 to 10 years ago. Participants are recruited across eight pediatric oncology centers in Switzerland, and through patient advocacy and support groups. Eligibility criteria include having a grandchild diagnosed with cancer and being fluent in German, French, or Italian. Study procedures involve requesting grandparents' contacts from eligible families, and later contacting grandparents, providing study information, obtaining informed consent, and sending out questionnaires by post or online. Reminder calls and mails are used to improve response rates. Data analysis includes multilevel regression (Study 1), thematic analysis (Study 2), and regression analyses (Study 3). Various validated questionnaires are used to assess physical health and overall well-being, psychological health, internal, and external factors.

DISCUSSION

This project addresses the gaps in understanding the psychosocial effects on grandparents having a grandchild diagnosed with cancer. It utilizes a comprehensive approach, including multiple methodologies and considering the broader family context. The project's strengths lie in its mixed-methods design, longitudinal approach, and inclusion of the perspectives of the sick children, siblings, and parents, besides grandparents. By gaining a more profound understanding of grandparents' experiences, researchers and healthcare professionals can develop targeted interventions and support services to address grandparents' unique needs.

摘要

背景

祖父母在为家庭提供爱、支持和智慧方面起着至关重要的作用,他们经常以实际和经济的方式支持家庭。当孙辈被诊断出患有疾病时,祖父母所经历的心理社会影响可能是巨大的,包括增加的压力、焦虑、悲伤以及他们自己生活的中断。然而,在文献中,祖父母的经历往往被忽视。

方法/设计:GROKids 项目旨在研究祖父母如何受到孙辈癌症诊断的影响。它采用混合方法,包括三个研究:一项涉及最近被诊断出患有癌症的儿童的祖父母的纵向队列研究(研究 1)和一项定性研究(研究 2),以及一项涉及儿童癌症幸存者的祖父母的横断面研究(研究 3)。研究 1 涵盖癌症诊断后两年内的四个时间点,而研究 2 则探讨了这些祖父母中一个亚组的生活经历。研究 3 从癌症诊断 3 至 10 年前的儿童癌症幸存者的祖父母那里收集数据。参与者通过瑞士的八家儿科肿瘤中心以及患者宣传和支持团体招募。纳入标准包括有一个被诊断患有癌症的孙辈,并且流利地说德语、法语或意大利语。研究程序包括从符合条件的家庭请求祖父母的联系方式,然后联系祖父母,提供研究信息,获得知情同意,并通过邮寄或在线发送问卷。使用提醒电话和邮件来提高回复率。数据分析包括多层次回归(研究 1)、主题分析(研究 2)和回归分析(研究 3)。使用各种经过验证的问卷评估身体健康和整体幸福感、心理健康、内部和外部因素。

讨论

该项目旨在解决理解祖父母在孙辈被诊断出癌症时的心理社会影响方面的差距。它采用了一种综合方法,包括多种方法,并考虑了更广泛的家庭背景。该项目的优势在于其混合方法设计、纵向方法以及纳入了患病儿童、兄弟姐妹和父母以及祖父母的观点。通过更深入地了解祖父母的经历,研究人员和医疗保健专业人员可以制定有针对性的干预措施和支持服务,以满足祖父母的独特需求。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0f5e/10507913/f3b0ab8510a2/40359_2023_1309_Fig1_HTML.jpg

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