Dorman Jennifer, Raffin Bouchal Shelley, daSilva Curiel Kathryn, Miller Megan
Nursing, University of Calgary, Calgary, Alberta, Canada
Nursing, University of Calgary, Calgary, Alberta, Canada.
BMJ Support Palliat Care. 2022 Jun 1. doi: 10.1136/bmjspcare-2021-003457.
Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families' experiences of this care within freestanding paediatric hospices.
To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement.
Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families' experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English.
Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss.
Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results.
The scoping review was guided by recommendations from Arksey and O'Malley and Levac .
A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas.
There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.
儿科姑息治疗为患有危及生命或限制生命疾病的儿童在整个疾病过程中提供支持性护理。在加拿大，接受姑息治疗的儿童中高达42% 将在独立的儿科临终关怀机构或指定的临终护理床位上去世。很少有研究评估家庭在独立儿科临终关怀机构中接受这种护理的体验。
查找并描述与儿科临终关怀姑息治疗中家庭在临终护理过程中的体验相关的文献，包括悲伤和丧亲之痛。
纳入标准：处于产前至18岁或以上且接受儿科姑息治疗服务的儿童。在独立儿科临终关怀机构中开展的、聚焦于家庭对临终、悲伤和丧亲之痛护理的体验和看法的研究。全文为英文的文章。
成人姑息和临终护理、临时护理、在急性或社区环境中提供的姑息治疗、专业视角、意外或突然的儿童死亡、丧亲后怀孕。
从数据库建立至今，对学术搜索完整版、护理学与健康领域数据库、Cochrane系统评价数据库、Embase、心理学文摘数据库、医学期刊数据库和科学引文索引数据库进行了检索。还检索了灰色文献以获取相关结果。
范围综述以阿克西和奥马利以及莱瓦克的建议为指导。
共检索到4250篇论文，其中10篇符合范围综述标准。大多数研究在英国进行。出现了三个主要主题：为家庭提供更多支持性护理，包括悲伤和丧亲之痛支持、临终关怀体验本身以及未来研究领域。
很少有文献专门关注独立儿科临终关怀机构中家庭的需求。对上述主题的进一步研究为未来的研究提供了机会。
