Digital Storytelling: An Innovative Legacy-Making Intervention for Children With Cancer

被引:80
作者
Akard, Terrah Foster [1 ]
Dietrich, Mary S. [1 ,2 ]
Friedman, Debra L. [3 ]
Hinds, Pamela S. [4 ]
Given, Barbara [5 ]
Wray, Sarah [1 ]
Gilmer, Mary Jo [1 ,3 ]
机构
[1] Vanderbilt Univ, Sch Nursing, Nashville, TN 37240 USA
[2] Vanderbilt Univ, Sch Med, Nashville, TN 37240 USA
[3] Monroe Carell Jr Childrens Hosp Vanderbilt, Nashville, TN USA
[4] Childrens Natl Med Ctr, Washington, DC 20010 USA
[5] Michigan State Univ, E Lansing, MI 48824 USA
关键词
cancer; children; digital storytelling; legacy-making; parent caregivers; pediatric oncology; quality of life; LIFE; SIBLINGS; TRIAL; DEATH; WORK; END;
D O I
10.1002/pbc.25337
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
BackgroundThis study examined the feasibility of a legacy-making intervention in children with cancer and the preliminary effects on outcomes related to quality of life. ProcedureChildren (N=28) ages 7-17 years completed a baseline QOL questionnaire (PedsQL) at T1. After baseline, the intervention group (n=15) completed a randomized intervention that guided children to answer questions about legacy-making and create a digital story about themselves. A final copy of the digital story was provided to the families. A control group (n=13) received customary care. Children repeated the questionnaire at T2. Parents (N=22) of children who completed the intervention completed follow-up survey questions regarding intervention effects. ResultsFeasibility was strong (78% participation; 1 attrition). While differences between the groups in physical, emotional, social, or school functioning change was not statistically significant, the intervention group showed slightly better emotional and school functioning compared to controls. Parents reported that their child's digital story provided emotional comfort to them (n=11, 46%), facilitated communication between parents and children (n=9, 38%), and was a coping strategy for them (n=4, 17%). Parents reported that the intervention helped children express their feelings (n=19, 79%), cope (n=6, 27%), and feel better emotionally (n=5, 23%). ConclusionsOur intervention is feasible for children with cancer, is developmentally appropriate for children 7-17 years of age, and demonstrates promise to improve quality of life outcomes for children with cancer and their parents. Pediatr Blood Cancer 2015;62:658-665. (c) 2015 Wiley Periodicals, Inc.
引用
收藏
页码:658 / 665
页数:8
相关论文
共 20 条
[1]   From Qualitative Work to Intervention Development in Pediatric Oncology Palliative Care Research [J].
Akard, Terrah Foster ;
Gilmer, Mary Jo ;
Friedman, Debra L. ;
Given, Barbara ;
Hendricks-Ferguson, Verna L. ;
Hinds, Pamela S. .
JOURNAL OF PEDIATRIC ONCOLOGY NURSING, 2013, 30 (03) :153-160
[2]  
[Anonymous], 2014, Cancer Facts and Figures: 2014
[3]  
[Anonymous], SEER Cancer Statistics Review 1975-2008
[4]   Exploring the Feasibility of a Therapeutic Music Video Intervention in Adolescents and Young Adults During Stem-Cell Transplantation [J].
Burns, Debra S. ;
Robb, Sheri L. ;
Haase, Joan E. .
CANCER NURSING, 2009, 32 (05) :E8-E16
[5]   Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life [J].
Chochinov, HM ;
Hack, T ;
Hassard, T ;
Kristjanson, LJ ;
McClement, S ;
Harlos, M .
JOURNAL OF CLINICAL ONCOLOGY, 2005, 23 (24) :5520-5525
[6]   The hard work of living in the face of death [J].
Coyle, Nessa .
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2006, 32 (03) :266-274
[7]   National Survey of Children's Hospitals on Legacy-Making Activities [J].
Foster, Terrah L. ;
Dietrich, Mary S. ;
Friedman, Debra L. ;
Gordon, Jessie E. ;
Gilmer, Mary J. .
JOURNAL OF PALLIATIVE MEDICINE, 2012, 15 (05) :573-578
[8]   Bereaved Parents' and Siblings' Reports of Legacies Created by Children With Cancer [J].
Foster, Terrah L. ;
Gilmer, Mary Jo ;
Davies, Betty ;
Barrera, Maru ;
Fairclough, Diane ;
Vannatta, Kathryn ;
Gerhardt, Cynthia A. .
JOURNAL OF PEDIATRIC ONCOLOGY NURSING, 2009, 26 (06) :369-376
[9]   Peer Relationships of Bereaved Siblings and Comparison Classmates After a Child's Death from Cancer [J].
Gerhardt, Cynthia A. ;
Fairclough, Diane L. ;
Grossenbacher, Julie C. ;
Barrera, Maru ;
Gilmer, Mary Jo ;
Foster, Terrah L. ;
Compas, Bruce E. ;
Davies, Betty ;
Hogan, Nancy S. ;
Vannatta, Kathryn .
JOURNAL OF PEDIATRIC PSYCHOLOGY, 2012, 37 (02) :209-219
[10]   The impact of providing symptom management assistance on caregiver reaction: Results of a randomized trial [J].
Given, Barbara ;
Given, Charles W. ;
Sikorskii, Alla ;
Jeon, Sangchoon ;
Sherwood, Paula ;
Rahbar, Mohammad .
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2006, 32 (05) :433-443