Namisango Eve, Friedel Marie, Yurduşen Sema, Alrjoub Waleed, Braybrook Debbie, Alarjeh Ghadeer, Roach Anna, Boufkhed Sabah, Farsides Bobbie, Coombes Lucy, Harding Richard
African Palliative Care Association, Kampala, Uganda.
Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, King's College London, London, UK.
Palliat Med. 2025 Oct;39(9):1021-1029. doi: 10.1177/02692163251362046. Epub 2025 Sep 6.
A dearth of evidence exists on how to include children and young people in palliative care research.
We aimed to identify successful practices in involvement, recruitment and data collection with children and young people with life-limiting illness in research.
We synthesised methods from five primary studies from three geographical regions in which children with life-limiting conditions were recruited and interviewed. Using Expert Elicitation Methodology we identified successful practices in the three areas of involvement, recruitment and data collection. We established consensus on methodological challenges and solutions, and developed 10 recommendations for inclusion in research protocols.
Primary cross-national research in three regions; Middle East (one study), sub-Saharan Africa (one study), Europe (three studies), reporting on studies that recruited = 244 children aged 5-18 years.
Recommendations are: (1) research team supported by advisory group of children for entire research process; (2) appropriate distress protocol tailored to population; (3) opt not to use term 'palliative care' in study materials if significant distress is a risk; (4) be deliberate in purposive sampling to ensure diagnoses heterogeneity where appropriate; (5) age-appropriate information materials pre-tested by children; (6) clinical teams receive training in recruitment; (7) time to build rapport before starting data collection; (8) consider potential biases and advantages of having parent/carer present during interview; (9) use age-appropriate toys/games during interviews; (10) selfcare for researchers to manage distress.
These recommendations can guide design and conduct of research, enabling children with life-limiting illness to meaningfully participate and express their views.
关于如何让儿童和青少年参与姑息治疗研究，目前证据匮乏。
我们旨在确定在针对患有危及生命疾病的儿童和青少年开展的研究中，让他们参与、招募他们以及收集数据方面的成功做法。
我们综合了来自三个地理区域的五项主要研究的方法，这些研究招募并访谈了患有危及生命疾病的儿童。我们采用专家征询方法，确定了在参与、招募和数据收集这三个领域的成功做法。我们就方法上的挑战和解决方案达成了共识，并制定了10条建议以供纳入研究方案。
三个区域的初级跨国研究；中东（一项研究）、撒哈拉以南非洲（一项研究）、欧洲（三项研究），报告的研究共招募了244名5至18岁的儿童。
建议如下：（1）研究团队在整个研究过程中得到儿童咨询小组的支持；（2）针对特定人群制定适当的痛苦应对方案；（3）如果存在重大痛苦风险，在研究材料中不使用“姑息治疗”一词；（4）在目的抽样时要慎重，以确保在适当情况下诊断的异质性；（5）儿童预先测试适合其年龄的信息材料；（6）临床团队接受招募培训；（7）在开始数据收集前有时间建立融洽关系；（8）考虑在访谈期间让家长/照顾者在场的潜在偏差和优势；（9）在访谈期间使用适合年龄的玩具/游戏；（10）研究人员进行自我护理以应对痛苦。
这些建议可指导研究的设计和开展，使患有危及生命疾病的儿童能够有意义地参与并表达他们的观点。
