BRIEF REPORT

Storytelling to support legacy making for bereaved parents of children with cancer

Corresponding Author

Trisha K. Paul

[email protected]

Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Correspondence

Trisha K. Paul, Department of Oncology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Mail Stop 260, Memphis, TN 38105, USA.

Email: [email protected]

Search for more papers by this author

Sarah Daniels,

Sarah Daniels

orcid.org/0000-0003-1478-3301

Child Life and Music Therapy Program, Department of Psychosocial Services, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Search for more papers by this author

Amy Love,

Amy Love

Child Life and Music Therapy Program, Department of Psychosocial Services, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Search for more papers by this author

Katherine Hart,

Katherine Hart

Child Life and Creative Arts Therapy Program, UC Davis Children's Hospital, Sacramento, California, USA

Search for more papers by this author

Erica C. Kaye,

Erica C. Kaye

orcid.org/0000-0002-6522-3876

Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Search for more papers by this author

Trisha K. Paul,

Corresponding Author

Trisha K. Paul

[email protected]

Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Correspondence

Trisha K. Paul, Department of Oncology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Mail Stop 260, Memphis, TN 38105, USA.

Email: [email protected]

Search for more papers by this author

Sarah Daniels,

Sarah Daniels

orcid.org/0000-0003-1478-3301

Child Life and Music Therapy Program, Department of Psychosocial Services, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Search for more papers by this author

Amy Love,

Amy Love

Child Life and Music Therapy Program, Department of Psychosocial Services, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Search for more papers by this author

Katherine Hart,

Katherine Hart

Child Life and Creative Arts Therapy Program, UC Davis Children's Hospital, Sacramento, California, USA

Search for more papers by this author

Erica C. Kaye,

Erica C. Kaye

orcid.org/0000-0002-6522-3876

Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

Search for more papers by this author

First published: 13 August 2024

https://doi.org/10.1002/pbc.31272

Prior presentation: Previously published as meeting abstract: Storytelling to support legacy making for bereaved parents of children with cancer. ASPHO 04/06/2024. ASPHO Conference Papers and Posters. Pediatr Blood Cancer, 71: e30977. https://doi.org/10.1002/pbc.30977

Share a link

Email
Wechat
Bluesky

Abstract

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling in creating and sustaining legacy. Most participants (89%) told stories centered around the child's impact and parent's coping, including the child's character and interpersonal relationships during and after their lifetime as well as how the child's legacy influenced parents’ grief experiences. Future research is needed to explore the potential impact of storytelling initiatives to support legacy-making for bereaved caregivers.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflicts of interest.

Supporting Information

REFERENCES

1Charon R. The patient-physician relationship. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA. 2001; 286(15): 1897-1902. doi:10.1001/JAMA.286.15.1897
10.1001/jama.286.15.1897
CAS PubMed Web of Science® Google Scholar
2Remein CDF, Childs E, Pasco JC, et al. Content and outcomes of narrative medicine programmes: a systematic review of the literature through 2019. BMJ Open. 2020; 10(1):e031568. doi:10.1136/BMJOPEN-2019-031568
10.1136/bmjopen-2019-031568
PubMed Web of Science® Google Scholar
3Boles JC, Jones MT. Legacy perceptions and interventions for adults and children receiving palliative care: a systematic review. Palliat Med. 2021; 35(3): 529-551.
10.1177/0269216321989565
PubMed Google Scholar
4Boles JC, Jones MJ, Dunbar JE, Cook JL. Defining legacy: the perceptions of pediatric healthcare providers. Clin Pediatr (Phila). 2020; 59(11): 1004-1010.
10.1177/0009922820940808
PubMed Google Scholar
5Jones MJ, Boles JC, Dunbar JE, Cook JL. Parent/caregiver perceptions of legacy in the hospital setting: a qualitative study. Pediatr Nurs. 2022; 49(2): 89-102.
Google Scholar
6Love A, Greer K, Woods C, Clark L, Baker JN, Kaye EC. Bereaved parent perspectives and recommendations on best practices for legacy interventions. J Pain Symptom Manage. 2022; 63(6): 1022-1030.e3.
10.1016/j.jpainsymman.2022.02.003
PubMed Google Scholar
7Cheong H, Lyons A, Houghton R, Majumdar A. Secondary qualitative research methodology using online data within the context of social sciences. Int J Qual Methods. 2023; 22:160940692311801. doi:10.1177/16094069231180160
10.1177/16094069231180160
Google Scholar
8Wickham RJ. Secondary analysis research. J Adv Pract Oncol. 2019; 10(4): 395-400. doi:10.6004/jadpro.2019.10.4.7
10.6004/jadpro.2019.10.4.7
PubMed Google Scholar
9Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007; 19(6): 349-357. doi:10.1093/intqhc/mzm042
10.1093/intqhc/mzm042
PubMed Web of Science® Google Scholar
10Keller BP, Akard TF, Boles JC. Legacy in paediatrics: a concept analysis. J Adv Nurs. 2024; 80(3): 948-957. doi:10.1111/jan.15922
10.1111/jan.15922
PubMed Google Scholar
11Hoshmand L. Narratology, cultural psychology, and counseling research. JCouns Psychol. 2005; 52(2): 178-186. doi:10.1037/0022-0167.52.2.178
10.1037/0022?0167.52.2.178
Google Scholar
12Akard TF, Duffy M, Hord A, et al. Bereaved mothers' and fathers' perceptions of a legacy intervention for parents of infants in the NICU. J Neonatal Perinatal Med. 2018; 11(1): 21-28. doi:10.3233/NPM-181732
10.3233/NPM-181732
CAS PubMed Google Scholar
13Snaman JM, Kaye EC, Torres C, Gibson DV, Baker JN. Helping parents live with the hole in their heart: the role of health care providers and institutions in the bereaved parents’ grief journeys. Cancer. 2016; 122(17): 2757-2765. doi:10.1002/cncr.30087
10.1002/cncr.30087
PubMed Web of Science® Google Scholar
14Snaman JM, Kaye EC, Torres C, Gibson D, Baker JN. Parental grief following the death of a child from cancer: the ongoing Odyssey. Pediatr Blood Cancer. 2016; 63(9): 1594-1602. doi:10.1002/pbc.26046
10.1002/pbc.26046
PubMed Web of Science® Google Scholar
15Schaefer MR, Kenney AE, Himelhoch AC, et al. A quest for meaning: a qualitative exploration among children with advanced cancer and their parents. Psychooncology. 2021; 30(4): 546-553. doi:10.1002/pon.5601
10.1002/pon.5601
PubMed Web of Science® Google Scholar
16Pedraza EC, Vokinger AK, Cleves D, et al. Grief and bereavement support for parents in low- or middle-income countries: a systematic review. J Pain Symptom Manage. 2024; 67(24): e453-e471. doi:10.1016/j.jpainsymman.2024.01.023
10.1016/j.jpainsymman.2024.01.023
PubMed Google Scholar
17Morris SE, Ryan AK, Malinowski P, Pozo-Kaderman C, Fasciano KM. The development of a bereavement support group curriculum for bereaved parents of young adult children: bridging the gap. J Adolesc Young Adult Oncol. 2024; 13(2): 281-287. doi:10.1089/jayao.2023.0060
10.1089/jayao.2023.0060
PubMed Google Scholar
18deCinque N, Monterosso L, Dadd G, Sidhu R, Lucas R. Bereavement support for families following the death of a child from cancer: practice characteristics of Australian and New Zealand paediatric oncology units. J Paediatr Child Health. 2004; 40(3): 131-135. doi:10.1111/j.1440-1754.2004.00313.x
10.1111/j.1440?1754.2004.00313.x
Google Scholar
19Lichtenthal WG, Catarozoli C, Masterson M, et al. An open trial of meaning-centered grief therapy: rationale and preliminary evaluation. Palliat Support Care. 2019; 17(1): 2-12. doi:10.1017/S1478951518000925
10.1017/S1478951518000925
PubMed Web of Science® Google Scholar
20Chochinov HM, Kristjanson LJ, Breitbart W, et al. Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Lancet Oncol. 2011; 12(8): 753-762. doi:10.1016/S1470-2045(11)70153-X
10.1016/S1470-2045(11)70153-X
PubMed Web of Science® Google Scholar

Volume71, Issue11

November 2024

e31272

Storytelling to support legacy making for bereaved parents of children with cancer

Abstract

CONFLICT OF INTEREST STATEMENT

Supporting Information

REFERENCES

References

Information

About Wiley Online Library

Help & Support

Opportunities

Connect with Wiley

Storytelling to support legacy making for bereaved parents of children with cancer

Abstract

CONFLICT OF INTEREST STATEMENT

Supporting Information

REFERENCES

References

Related

Information