Akard Terrah Foster, Dietrich Mary S, Friedman Debra L, Gerhardt Cynthia A, Given Barbara, Hendricks-Ferguson Verna, Hinds Pamela S, Ridner Sheila H, Beckmann Nicole, Gilmer Mary Jo
Vanderbilt University School of Nursing, Nashville, USA.
Vanderbilt University School of Medicine, Nashville, USA.
Prog Palliat Care. 2021;29(3):130-139. doi: 10.1080/09699260.2020.1826778. Epub 2020 Oct 20.
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's . Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.
尽管构建遗产是优质姑息治疗的一个优先事项，但研究很少考察遗产干预措施对儿童的影响，尤其是其对亲子沟通的影响。我们考察了一项基于网络的遗产干预措施对亲子沟通的影响。我们假设，与常规护理相比，制作遗产将改善亲子沟通质量。在2015年至2018年期间，通过脸书广告招募了患有复发性/难治性癌症的儿童（7至17岁）的家庭。亲子二元组被随机分配到干预组或常规护理组。干预网站指导儿童在两周内创建数字故事板，引导他们回答关于自己的遗产问题，并上传照片、视频和音乐。家庭收到了孩子最终数字故事的副本。儿童和家长在干预前（T1）和干预后（T2）完成了亲子沟通量表。线性回归测试了两组之间从T1到T2的变化差异，使用p <.05的α值控制T1值。使用科恩效应量来衡量干预效果。纳入97个亲子二元组进行分析。两组之间亲子沟通的变化在统计学上没有显著差异，但观察到了有意义的干预效果。在改善父子沟通方面观察到了最强的效果（科恩效应量 = -0.22 - 0.33）。制作遗产显示出促进改善亲子沟通的前景，尤其是对父亲而言。未来的研究应纳入父亲，并测量情感表达和亲子互动。医疗服务提供者应继续促进患有晚期疾病儿童的家庭沟通，并认识到遗产干预措施可能对母子沟通和父子沟通产生不同的影响。
