Postavaru Gianina-Ioana, Swaby Helen, Swaby Rabbi
Bishop Grosseteste University, Lincoln, UK.
Nottingham University Hospitals NHS Trust, Nottingham, UK.
Palliat Med. 2021 Feb;35(2):261-279. doi: 10.1177/0269216320979153. Epub 2020 Dec 18.
There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers' needs remains sparse and is often diluted among a predominant 'mother's voice', raising questions about whether practices in clinical settings meet fathers' needs.
To provide an in-depth assembly of the current state of knowledge around fathers' experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies.
A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers' experiences of caring.
Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers' care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used.
Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers' caregiving journeys. The overarching concepts identified were: and . These and associated sub-concepts are discussed, with recommendations for future research and practice provided.
The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.
越来越多的定性研究探讨了父母照料患有危及生命疾病孩子的经历,这与近期表明儿科危及生命疾病发病率上升的证据相吻合。然而,关注父亲需求的研究仍然稀少,且往往淹没在以“母亲声音”为主导的研究中,这引发了临床环境中的做法是否满足父亲需求的问题。
深入汇总当前关于父亲照料被诊断患有危及生命疾病孩子的经历的知识状况,并了解对医疗服务和政策的影响。
进行了一项元民族志研究,以综合现有定性研究中关于父亲照料经历的研究结果。
截至2020年4月,对四个电子数据库(PubMed、PsycINFO、CINAHL和Science Direct)进行了检索。纳入了以英文发表的探索父亲照料经历的定性研究。采用批判性评估技能计划(CASP)清单进行研究质量评估。未设定时间限制。
63项研究符合纳入标准。纳入了30种危及生命的疾病。基于496位父亲的回答,开发了一个概念模型,该模型转化了父亲照料过程中的关键经历。确定的总体概念是:……和……。对这些以及相关的子概念进行了讨论,并为未来的研究和实践提供了建议。
研究结果表明,采用以家庭为导向的方法来开发心理社会干预措施和为父亲提供支持渠道具有价值,从而增强他们的能力,同时减轻家庭单位的照料负担。