Hudson Briony F, Oostendorp Linda Jm, Candy Bridget, Vickerstaff Victoria, Jones Louise, Lakhanpaul Monica, Bluebond-Langner Myra, Stone Paddy
1 Louis Dundas Centre for Children's Palliative Care, UCL Institute of Child Health, London, UK.
2 Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK.
Palliat Med. 2017 May;31(5):419-436. doi: 10.1177/0269216316663856. Epub 2016 Sep 8.
Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations.
To explore how children and young people (aged 0-25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years.
Systematic review.
MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families.
A total of 215 studies - 152 qualitative, 54 quantitative and 9 mixed methods - were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants' perceptions of potential burdens.
All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.
研究人员报告称，对患有危及生命的疾病或病症的儿童及年轻人及其家庭开展研究存在困难。招募工作面临包括伦理、后勤和临床考量在内的诸多障碍。
探讨在过去5年中，患有危及生命的疾病或病症的0至25岁儿童及年轻人及其家庭是如何被识别、邀请并同意参与研究的。
系统评价。
检索了MEDLINE、PsycINFO、科学引文索引、科学引文索引扩展版和Scopus数据库，以查找2009年至2014年间发表的招募患有危及生命的疾病或病症的儿童及年轻人及其家庭参与研究的英文原创研究。
共纳入215项研究——152项定性研究、54项定量研究和9项混合方法研究。提供了有限的招募信息，但涉及一系列策略和困难。80%的研究无法计算出经筛查的合格参与者的比例。77%的研究无法计算出招募率。共有31%的研究招募的合格参与者不到50%。未被邀请的原因包括缺少临床或联系数据，或临床医生认为参与者不适合。不参与的原因包括缺乏兴趣以及参与者对潜在负担的认知。
招募的各个阶段报告不足。需要在参与者识别、邀请和同意方面进行透明报告，以使研究人员能够了解研究影响、偏倚风险以及结果适用于哪些人群。需要开展研究，以探究同意参与的参与者决定参与或不参与的原因及其在研究招募过程中的经历。
