妊娠和婴儿丢失：加拿大安大略省家庭体验调查。
Pregnancy and infant loss: a survey of families' experiences in Ontario Canada.
机构信息
Pregnancy and Infant Loss (PAIL) Network, Women and Babies Program, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, Ontario, Canada.
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
出版信息
BMC Pregnancy Childbirth. 2019 Apr 16;19(1):129. doi: 10.1186/s12884-019-2270-2.
BACKGROUND
Pregnancy and infant loss has a pervasive impact on families, health systems, and communities. During and after loss, compassionate, individualized, and skilled support from professionals and organizations is important, but often lacking. Historically, little has been known about how families in Ontario access existing care and supports around the time of their loss and their experiences of receiving such care.
METHODS
An online cross-sectional survey, including both closed-ended multiple choice questions and one open-ended question, was completed by 596 people in Ontario, Canada relating to their experiences of care and support following pregnancy loss and infant death. Quantitative data were analyzed descriptively using frequency distributions. Responses to the one open-ended question were thematically analyzed using a qualitative inductive approach.
RESULTS
The majority of families told us that around the time of their loss, they felt they were not adequately informed, supported and cared for by healthcare professionals, and that their healthcare provider lacked the skills needed to care for them. Almost half of respondents reported experiencing stigma from providers, exacerbating their experience of loss. Positive encounters with care providers were marked by timely, individualized, and compassionate care. Families indicated that improvements in care could be made by providing information and explanations, discharge and follow-up instructions, and through discussions about available supports.
CONCLUSIONS
Healthcare professionals can make a positive difference in how loss is experienced and in overall well-being by recognizing the impact of the loss, minimizing uncertainty and isolation, and by thoughtfully working within physical environments often not designed for the experience of loss. Ongoing supports are needed and should be tailored to parents' changing needs. Prioritizing access to specialized education for professionals providing services and care to this population may help to reduce the stigma experienced by bereaved families.
背景
妊娠和婴儿死亡对家庭、医疗体系和社区都有深远的影响。在失去孩子后，专业人员和组织提供富有同情心、个性化和熟练的支持非常重要，但往往是缺乏的。历史上，人们对安大略省的家庭在失去孩子前后如何获得现有护理和支持以及他们对接受此类护理的体验知之甚少。
方法
通过一项在线横断面调查，包括封闭式多项选择题和一个开放式问题，对加拿大安大略省的 596 人进行了调查，了解他们在妊娠和婴儿死亡后的护理和支持体验。使用频率分布对定量数据进行描述性分析。使用定性归纳方法对一个开放式问题的回答进行主题分析。
结果
大多数家庭表示，在失去孩子的时候，他们觉得自己没有得到医疗保健专业人员的充分告知、支持和照顾，他们的医疗服务提供者缺乏照顾他们所需的技能。近一半的受访者报告说，他们受到了提供者的污名化，这加剧了他们的失落感。与护理提供者的积极接触以及时、个性化和富有同情心的护理为标志。家庭表示，可以通过提供信息和解释、出院和随访说明，以及讨论可用的支持，来改善护理。
结论
医疗保健专业人员可以通过认识到失去的影响、最大限度地减少不确定性和孤立感，并通过在通常不是为失去体验而设计的物理环境中深思熟虑地工作，对如何体验失去产生积极的影响，并对整体幸福感产生积极的影响。需要持续的支持，并且应该根据父母不断变化的需求进行调整。优先为为该人群提供服务和护理的专业人员提供专门的教育，可能有助于减少丧亲家庭所经历的污名化。
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