Parents' Lived Experience of Living with and Caring for Their Burn-injured Child in a Home Setting

Overview

Journal Int J Qual Stud Health Well-being

Specialties Health Services
Public Health

Date 2023 May 26

PMID 37234023

Authors

Lina Sophie Toft Lernevall

Asgjerd Litlere Moi

Eva Gjengedal

Pia Dreyer

Affiliations

Soon will be listed here.

Abstract

Purpose: When a burn injured child is discharged from hospital to its home, the responsibility for the after-care treatment is transferred to the parent(s). A knowledge gap exists concerning how parents experience caring for a burn-injured child at home after discharge. The aim is to gain an in-depth understanding of parents' lived experience of living with and caring for their burn-injured child in a home setting.

Methods: Twenty-four parents of burn-injured children treated at a Norwegian burn centre were interviewed 74 to 195 days after the burn accident (June 2017 to November 2018). A phenomenological hermeneutic approach was chosen, using a Ricoeur-inspired textual in-depth analysis method. NVivo 12 Plus and COREQ were used.

Results: Four themes emerged. The parents' experienced feelings had been embodied and would stay forever. They felt left alone to continue the medical treatment at home without having the necessary skills. The parents grieved over the lost past and feared the unknown future. They longed to meet or be contacted by staff members who knew them and their life situation.

Conclusions: Healthcare professionals should see returning home as part of the course of illness and that right support during the hospital can prevent challenges after discharge.

Citing Articles

A Scoping Review Protocol: Parenting Experiences and Family Dynamics in Pediatric Burn Care Settings from Hospitalization to the Return Home.

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Parental adjustment to a burn-injured child: how to support their needs in the aftermath of the injury.

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Evaluation of the effectiveness of a smartphone-based educational intervention on the outcomes of children's burns: A randomized controlled trial.

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References

Rimmer R, Foster K, Bay C, Floros J, Rutter C, Bosch J . The reported effects of bullying on burn-surviving children. J Burn Care Res. 2007; 28(3):484-9. DOI: 10.1097/BCR.0B013E318053D3E3. View

Ravindran V, Rempel G, Ogilvie L . Parenting burn-injured children in India: a grounded theory study. Int J Nurs Stud. 2012; 50(6):786-96. DOI: 10.1016/j.ijnurstu.2012.06.011. View

Toombs S . Illness and the paradigm of lived body. Theor Med. 1988; 9(2):201-26. DOI: 10.1007/BF00489413. View

Tong 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):349-57. DOI: 10.1093/intqhc/mzm042. View

Dahlberg K, Todres L, Galvin K . Lifeworld-led healthcare is more than patient-led care: an existential view of well-being. Med Health Care Philos. 2008; 12(3):265-71. DOI: 10.1007/s11019-008-9174-7. View

Celis M, Suman O, Huang T, Yen P, Herndon D . Effect of a supervised exercise and physiotherapy program on surgical interventions in children with thermal injury. J Burn Care Rehabil. 2003; 24(1):57-61; discussion 56. DOI: 10.1097/00004630-200301000-00014. View

Lernevall L, Moi A, Cleary M, Kornhaber R, Dreyer P . Support needs of parents of hospitalised children with a burn injury: An integrative review. Burns. 2019; 46(4):771-781. DOI: 10.1016/j.burns.2019.04.021. View

Bakker A, Van Loey N, van Son M, van der Heijden P . Brief report: mothers' long-term posttraumatic stress symptoms following a burn event of their child. J Pediatr Psychol. 2009; 35(6):656-61. DOI: 10.1093/jpepsy/jsp090. View

Hawkins L, Centifanti L, Holman N, Taylor P . Parental Adjustment following Pediatric Burn Injury: The Role of Guilt, Shame, and Self-Compassion. J Pediatr Psychol. 2018; 44(2):229-237. DOI: 10.1093/jpepsy/jsy079. View

10.

Sveen J, Willebrand M . Feelings of guilt and embitterment in parents of children with burns and its associations with depression. Burns. 2018; 44(5):1135-1140. DOI: 10.1016/j.burns.2018.02.005. View

11.

Stroebe M, Schut H . The dual process model of coping with bereavement: rationale and description. Death Stud. 2000; 23(3):197-224. DOI: 10.1080/074811899201046. View

12.

Todres L, Galvin K, Dahlberg K . Lifeworld-led healthcare: revisiting a humanising philosophy that integrates emerging trends. Med Health Care Philos. 2006; 10(1):53-63. DOI: 10.1007/s11019-006-9012-8. View

13.

Willebrand M, Sveen J . Perceived support in parents of children with burns. Gen Hosp Psychiatry. 2015; 38:105-8. DOI: 10.1016/j.genhosppsych.2015.10.004. View

14.

Heath J, Williamson H, Williams L, Harcourt D . Supporting children with burns: Developing a UK parent-focused peer-informed website to support families of burn-injured children. Patient Educ Couns. 2019; 102(9):1730-1735. DOI: 10.1016/j.pec.2019.04.003. View

15.

Heath J, Williamson H, Williams L, Harcourt D . Parent-perceived isolation and barriers to psychosocial support: a qualitative study to investigate how peer support might help parents of burn-injured children. Scars Burn Heal. 2018; 4:2059513118763801. PMC: 5987090. DOI: 10.1177/2059513118763801. View

16.

Egberts M, Engelhard I, de Jong A, Hofland H, Geenen R, Van Loey N . Parents' memories and appraisals after paediatric burn injury: a qualitative study. Eur J Psychotraumatol. 2019; 10(1):1615346. PMC: 6566713. DOI: 10.1080/20008198.2019.1615346. View

17.

Andrews N, Jones L, Moiemen N, Calvert M, Kinghorn P, Litchfield I . Below the surface: Parents' views on the factors that influence treatment adherence in paediatric burn scar management - A qualitative study. Burns. 2017; 44(3):626-635. DOI: 10.1016/j.burns.2017.09.003. View

18.

Haahr A, Norlyk A, Hall E . Ethical challenges embedded in qualitative research interviews with close relatives. Nurs Ethics. 2013; 21(1):6-15. DOI: 10.1177/0969733013486370. View

19.

Delgado Pardo G, Garcia I, Marrero F, Gomez Cia T . Psychological impact of burns on children treated in a severe burns unit. Burns. 2008; 34(7):986-93. DOI: 10.1016/j.burns.2008.01.016. View

20.

Simons M, Price N, Kimble R, Tyack Z . Patient experiences of burn scars in adults and children and development of a health-related quality of life conceptual model: A qualitative study. Burns. 2016; 42(3):620-32. DOI: 10.1016/j.burns.2015.11.012. View