Literature DB >> 25586983

Digital storytelling: an innovative legacy-making intervention for children with cancer.

Terrah Foster Akard1, Mary S Dietrich, Debra L Friedman, Pamela S Hinds, Barbara Given, Sarah Wray, Mary Jo Gilmer.   

Abstract

BACKGROUND: This study examined the feasibility of a legacy-making intervention in children with cancer and the preliminary effects on outcomes related to quality of life. PROCEDURE: Children (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.
RESULTS: Feasibility 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%).
CONCLUSIONS: Our 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.
© 2015 Wiley Periodicals, Inc.

Entities:  

Keywords:  cancer; children; digital storytelling; legacy-making; parent caregivers; pediatric oncology; quality of life

Mesh:

Year:  2015        PMID: 25586983      PMCID: PMC4339662          DOI: 10.1002/pbc.25337

Source DB:  PubMed          Journal:  Pediatr Blood Cancer        ISSN: 1545-5009            Impact factor:   3.167


  14 in total

1.  Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life.

Authors:  Harvey Max Chochinov; Thomas Hack; Thomas Hassard; Linda J Kristjanson; Susan McClement; Mike Harlos
Journal:  J Clin Oncol       Date:  2005-08-20       Impact factor: 44.544

2.  Quality of life during active treatment for pediatric acute lymphoblastic leukemia.

Authors:  Lillian Sung; Rochelle Yanofsky; Robert J Klaassen; David Dix; Sheila Pritchard; Naomi Winick; Sarah Alexander; Anne Klassen
Journal:  Int J Cancer       Date:  2011-03-01       Impact factor: 7.396

3.  The hard work of living in the face of death.

Authors:  Nessa Coyle
Journal:  J Pain Symptom Manage       Date:  2006-09       Impact factor: 3.612

Review 4.  Alleviating the suffering of seriously ill children.

Authors:  J R Kane; M Primomo
Journal:  Am J Hosp Palliat Care       Date:  2001 May-Jun       Impact factor: 2.500

5.  PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations.

Authors:  J W Varni; M Seid; P S Kurtin
Journal:  Med Care       Date:  2001-08       Impact factor: 2.983

6.  End-of-life care preferences of pediatric patients with cancer.

Authors:  Pamela S Hinds; Donna Drew; Linda L Oakes; Maryam Fouladi; Sheri L Spunt; Christopher Church; Wayne L Furman
Journal:  J Clin Oncol       Date:  2005-09-19       Impact factor: 44.544

7.  Exploring the feasibility of a therapeutic music video intervention in adolescents and young adults during stem-cell transplantation.

Authors:  Debra S Burns; Sheri L Robb; Joan E Haase
Journal:  Cancer Nurs       Date:  2009 Sep-Oct       Impact factor: 2.592

8.  Health-related quality of life in adolescents at the time of diagnosis with osteosarcoma or acute myeloid leukemia.

Authors:  Pamela S Hinds; Catherine A Billups; Xueyuan Cao; Jami S Gattuso; Elizabeth Burghen; Nancy West; Jeffrey E Rubnitz; Najat C Daw
Journal:  Eur J Oncol Nurs       Date:  2008-10-15       Impact factor: 2.398

9.  Songwriting and digital video production interventions for pediatric patients undergoing bone marrow transplantation, part I: an analysis of depression and anxiety levels according to phase of treatment.

Authors:  Sheri L Robb; Allison G Ebberts
Journal:  J Pediatr Oncol Nurs       Date:  2003 Jan-Feb       Impact factor: 1.636

10.  Bereaved parents' and siblings' reports of legacies created by children with cancer.

Authors:  Terrah L Foster; Mary Jo Gilmer; Betty Davies; Maru Barrera; Diane Fairclough; Kathryn Vannatta; Cynthia A Gerhardt
Journal:  J Pediatr Oncol Nurs       Date:  2009 Nov-Dec       Impact factor: 1.636

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  14 in total

1.  Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.

Authors:  Eunji Cho; Mary Jo Gilmer; Debra L Friedman; Verna L Hendricks-Ferguson; Pamela S Hinds; Terrah Foster Akard
Journal:  Prog Palliat Care       Date:  2021-03-29

2.  Parent's Lived Experience of Memory Making With Their Child at or Near End of Life.

Authors:  Terrie Clarke; Michael Connolly
Journal:  Am J Hosp Palliat Care       Date:  2021-09-16       Impact factor: 2.090

3.  [Patient-centered care. Improvement of communication between university medical centers and general practitioners for patients in neuro-oncology].

Authors:  M Renovanz; N Keric; C Richter; A Gutenberg; A Giese
Journal:  Nervenarzt       Date:  2015-12       Impact factor: 1.214

4.  Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer.

Authors:  Terrah Foster Akard; Sarah Wray; Debra L Friedman; Mary S Dietrich; Verna Hendricks-Ferguson; Barbara Given; Cynthia A Gerhardt; Pamela S Hinds; Mary Jo Gilmer
Journal:  J Hosp Palliat Nurs       Date:  2020-02       Impact factor: 2.131

5.  Ethical Considerations in Oncology and Palliative Care Research During COVID-19.

Authors:  Terrah Foster Akard; Mary Jo Gilmer; Verna L Hendricks-Ferguson
Journal:  J Pediatr Hematol Oncol Nurs       Date:  2022-02-15

Review 6.  Digital storytelling as a method in health research: a systematic review protocol.

Authors:  Kendra L Rieger; Christina H West; Amanda Kenny; Rishma Chooniedass; Lisa Demczuk; Kim M Mitchell; Joanne Chateau; Shannon D Scott
Journal:  Syst Rev       Date:  2018-03-05

7.  Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer.

Authors:  Terrah Foster Akard; Mary S Dietrich; Debra L Friedman; Cynthia A Gerhardt; Barbara Given; Verna Hendricks-Ferguson; Pamela S Hinds; Sheila H Ridner; Nicole Beckmann; Mary Jo Gilmer
Journal:  Prog Palliat Care       Date:  2020-10-20

8.  Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer.

Authors:  Piera C Robson; Mary S Dietrich; Terrah Foster Akard
Journal:  J Pediatr Oncol Nurs       Date:  2021-03-09       Impact factor: 1.636

9.  Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope.

Authors:  Elyse Andrews; Amelia Hayes; Laura Cerulli; Elissa G Miller; Nicholas Slamon
Journal:  Palliat Med Rep       Date:  2020-08-06

10.  Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer.

Authors:  Terrah Foster Akard; Mary S Dietrich; Debra L Friedman; Sarah Wray; Cynthia A Gerhardt; Verna Hendricks-Ferguson; Pamela S Hinds; Bethany Rhoten; Mary Jo Gilmer
Journal:  J Palliat Med       Date:  2020-09-30       Impact factor: 2.947

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