Bourque Claude Julie, Dahan Sonia, Mantha Ginette, Reichherzer Martin, Janvier Annie
CHU Sainte-Justine Research Center, CHU Sainte-Justine, Montréal, Quebec, Canada
Pediatrics, Université de Montréal, Montreal, Quebec, Canada.
BMJ Open. 2020 Sep 6;10(9):e034817. doi: 10.1136/bmjopen-2019-034817.
Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them.
DESIGN/METHODS: Mixed methods convergent analysis.
Canadian paediatric tertiary care university hospital.
All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.
Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects.
With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.
尽管越来越多的人建议利益相关者参与医疗保健，但失去孩子的父母往往因被认为存在潜在风险而被排除在外。本研究的目的是描述失去孩子的父母在新生儿重症监护病房参与不同类型活动的持续参与情况及其观点，以及与他们合作的医护人员的观点。
设计/方法：混合方法收敛性分析。
加拿大儿科三级护理大学医院。
资源父母小组的所有失去孩子的成员（n = 8）以及大多数与他们合作的医护人员（n = 16）回答了满意度/需求问卷。
自2011年以来，八位失去孩子的父母参与了大量主要与姑息治疗相关的活动（研究、教育或临床护理倡议）。三位参与了同伴支持活动，而其他父母则更喜欢临床病房之外的活动和/或不与其他家庭直接互动。他们所有人都报告说他们的参与产生了积极影响，但有两位父母还报告说在一次医疗模拟活动中创伤经历被重新激活。所有参与者都表示希望进一步合作。做出贡献的动机围绕两个核心主题：帮助他人和帮助自己。许多人想回报、帮助其他家庭、改善系统并与照顾过他们孩子的医护人员见面。所有人都表示这种参与赋予了他们力量，并让他们的经历有了意义。医护人员和研究人员都报告了积极的经历，主要是因为参与他们项目的失去孩子的父母所提供的独特视角。
通过谨慎招募和监督，一些失去孩子的父母可以成为参与不同类型活动的资源父母。了解这种参与对他们的康复过程可能产生的积极影响并控制与他们参与相关的风险非常重要。需要开展研究以开发相关工具和措施来评估他们参与的结果和影响。
