Sjuls Marianne, Ludvigsen Mette Spliid, Robstad Nastasja, Fegran Liv
Faculty of Health and Sport Sciences, Department of Health and Nursing Science, University of Agder, Kristiansand, Norway.
Department of Clinical Medicine-Randers Regional Hospital, Aarhus University, Aarhus, Denmark.
J Adv Nurs. 2024 May;80(5):1670-1685. doi: 10.1111/jan.15884. Epub 2023 Sep 26.
To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions).
Systematic review and metasynthesis.
Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research.
A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life-limiting condition without curative treatment options.
Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: 'Being shattered in the perception of fatherhood', 'Establishing a new normal' and 'Striving to be acknowledged as a part of the caring team'.
Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences.
The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine.
Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework.
No patient or Public Contribution.
系统回顾并综合定性原发性研究中关于父亲与患有进行性生命受限疾病且无治愈性治疗方案（C3 病症）的孩子共同生活经历的研究结果。
系统回顾与元综合分析。
桑德洛斯基和巴罗索的定性研究方法指导了本次回顾与元综合分析。林德塞思和诺伯格描述的对利科诠释理论的一种修正，指导了定性数据的综合分析。使用乔安娜·布里格斯研究所定性研究检查表对研究质量进行评估。
于2022年5月6日进行了系统的文献检索，并于2023年7月19日在MEDLINE、全文版CINAHL Plus、美国心理学会心理学文摘数据库（APA PsycInfo）和Scopus上进行了更新。纳入标准为2000年以来以英文撰写的定性研究，从中我们可以提取关于0至18岁患有进行性生命受限疾病且无治愈性治疗方案的孩子的父亲的生活经历的数据。
来自西方国家的七份报告为本次回顾做出了贡献。通过结构分析，我们得出了以下主题：“父性认知的破碎”、“建立新的常态”以及“努力被认可为护理团队的一员”。
当与患有C3病症的孩子共同生活时，父亲们必须建立新的常态，他们经历了预期性哀伤、角色冲突以及在医疗环境中被边缘化的感觉。儿科姑息治疗（PPC）进一步研究的一个重要问题应该是将父亲纳入研究样本，并分别报告父亲或母亲的经历，而不是父母的共同经历。
这些研究结果将引起PPC领域医护人员和多学科团队的兴趣，因为它们深入了解了父亲的经历，并提出了增加医护人员与父亲互动的干预措施，如远程医疗。
按照 EQUATOR 指南，本研究根据增强定性研究综合报告透明度（ENTREQ）框架进行报告。
无患者或公众贡献。
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