Aoun Samar M, Gill Fenella J, Phillips Marianne B, Momber Suzanne, Cuddeford Lisa, Deleuil Renee, Stegmann Roswitha, Howting Denise, Lyon Maureen E
Professor, Perron Institute for Neurological and Translational Science, 8 Verdun Street, Nedlands, WA 6009, Australia.
Child and Adolescent Health Service, Perth Children's Hospital, Nedlands, WA, Australia; Curtin University, Perth, WA, Australia.
Palliat Care Soc Pract. 2020 Sep 25;14:2632352420958000. doi: 10.1177/2632352420958000. eCollection 2020.
Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being.
Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested.
A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study.
Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve.
Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
患有危及生命疾病的儿童的父母承受着巨大的负担和痛苦，但针对他们福祉的干预措施却很少。
评估儿科护理人员支持需求评估工具（pCSNAT）在评估和满足父母照顾癌症和非癌症患儿需求方面的使用情况和可行性。同时也对护理人员的福祉结果进行了测试。
一项非随机前瞻性干预试点研究。西澳大利亚州（2018 - 2019年）儿科姑息治疗服务机构的28名家长（共邀请了42名）和5名卫生专业人员完成了该试点研究。
三分之二符合条件的家长完成了研究。最高的支持需求包括有自己的时间；家中的实际帮助；了解未来的预期；财务、法律或工作问题；以及在担忧时知道该联系谁。几乎所有需求在非癌症组中都更为明显。pCSNAT似乎可行，结果显示有改善的趋势。
使用pCSNAT为卫生专业人员评估父母所遇到的困难提供了一个简洁而全面的“一站式”服务。非癌症组报告的不利因素值得更多关注。儿科姑息治疗应采用对父母支持需求的常规评估，以便尽早提供有针对性的支持，包括与社区建立伙伴关系。
