Steele Rose, Cadell Susan, Siden Harold, Andrews Gail, Smit Quosai Trudy, Feichtinger Leanne
1 School of Nursing, Faculty of Health, York University , Toronto, Ontario, Canada .
J Palliat Med. 2014 Jul;17(7):788-96. doi: 10.1089/jpm.2013.0529. Epub 2014 May 28.
There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families.
To obtain parents' perceptions about their experience of participating in one of two research studies.
Descriptive, quantitative survey.
SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home.
Researcher-designed Impact of Participation questionnaire.
Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation.
Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
缺乏研究证据来指导医疗保健提供者在儿科姑息治疗中的实践。与此同时，一些临床医生和机构审查委员会因担心给家庭带来更多负担而不愿批准此类研究。然而，有证据表明参与研究对家庭可能有积极影响。
了解父母对参与两项研究之一的经历的看法。
描述性定量调查。
地点/受试者：在家照顾患有危及生命疾病儿童的照顾者（n = 323）。
研究人员设计的参与影响问卷。
两组在参与影响方面的回答差异不大。没有一位家长表示后悔参与研究，几乎所有家长（96.3%）都表示开展关于儿科姑息治疗中家庭经历的研究有价值。略超过四分之三（76.2%）的家长根本不觉得参与研究痛苦，73.7%的家长表示参与的痛苦程度与预期差不多，23.2%的家长表示痛苦程度低于预期。约一半（50.5%）的家长表示参与研究至少有一些积极影响，只有三位家长报告有任何负面影响。绝大多数家长（93.4%）会向处于类似情况的其他家长推荐参与研究。
对于患有危及生命疾病儿童的家庭来说，参与研究不仅为家长所接受，而且实际上可能有积极影响。尽管临床医生和机构审查委员会可能对全力支持此类研究犹豫不决，但很明显在儿科姑息治疗领域开展研究很重要。
