Literature DB >> 29689746

Bereaved mothers' and fathers' perceptions of a legacy intervention for parents of infants in the NICU.

T F Akard1, M Duffy2, A Hord2, A Randall2, A Sanders2, K Adelstein1, U E Anani3, M J Gilmer1,3.   

Abstract

BACKGROUND: Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and adult populations, legacy activities specific to bereaved parents in the neonatal intensive care unit remain unexplored. This study explored bereaved parents' perceptions of a digital storytelling legacy-making intervention for parents after the death of an infant.
METHODS: Six bereaved mothers and fathers participated in a focus group interview three to 12 months after the death of an infant in the NICU. A semi-structured interview guide with open-ended questions was used to obtain parent self-reports. Qualitative content analysis identified emerging themes.
RESULTS: Four major themes emerged regarding participants' perceptions of a legacy intervention: (a) parents' willingness to participate in a legacy intervention, (b) parents' suggestions for a feasible intervention, (c) parents' suggestions for an acceptable intervention, and (d) parents' perceived benefits of legacy-making.
CONCLUSIONS: Participants reported that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Study results support the need and desire for legacy-making services to be developed and offered in the NICU.

Entities:  

Keywords:  NICU; Pediatric palliative care; bereavement; caregivers; infant death; legacy-making

Mesh:

Year:  2018        PMID: 29689746     DOI: 10.3233/NPM-181732

Source DB:  PubMed          Journal:  J Neonatal Perinatal Med        ISSN: 1878-4429


  6 in total

1.  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

2.  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

3.  Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States.

Authors:  Terrah Foster Akard; Samantha Burley; Maggie C Root; Mary S Dietrich; Brittany Cowfer; Kim Mooney-Doyle
Journal:  Palliat Med Rep       Date:  2021-08-13

4.  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

5.  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

6.  My child's legacy: a mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives.

Authors:  Claude Julie Bourque; Sonia Dahan; Ginette Mantha; Martin Reichherzer; Annie Janvier
Journal:  BMJ Open       Date:  2020-09-06       Impact factor: 2.692

  6 in total

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