"Managing uncertainty": Experiences of family members of burn patients from injury occurrence to the end-of-life period.
Burns
End of life care
Family members
Palliative Care
Journal
Burns : journal of the International Society for Burn Injuries
ISSN: 1879-1409
Titre abrégé: Burns
Pays: Netherlands
ID NLM: 8913178
Informations de publication
Date de publication:
11 2021
11 2021
Historique:
received:
20
08
2020
revised:
14
01
2021
accepted:
03
02
2021
pubmed:
10
4
2021
medline:
22
12
2021
entrez:
9
4
2021
Statut:
ppublish
Résumé
Although mortality rates associated with burns have decreased, there is still a significant number of persons who may not survive severe forms of the injury and thus, undergo comfort/end of life care. The experiences of family members of persons whose injuries are deemed unsurvivable remain minimally explored and there is a general lack of practice guidelines and recommendations to support them at the end-of-life period. To explore the experiences of family members whose relatives died in the burn unit to inform the development of practice recommendations. Qualitative description was employed for this study. Convenience sampling was used to recruit 23 family members of injured persons who died in the burn unit. Face to face semi-structured interviews were conducted and followed up with telephone interviews. The interviews were audio-recorded, transcribed verbatim and thematic analysis performed inductively. Three themes emerged: reactions following injury occurrence, navigating through the experience, and managing uncertainties about survival. The sudden nature of the injury led to feelings of self-blame, guilt, helplessness, and grief and these escalated at the end of life. As the family members journeyed through their uncertainties regarding the outcomes of care, they had a feeling of being a part of the patient's suffering. Family members received little professional support in coming to terms with their loss in the post-bereavement period. Family members experience distress following the occurrence of burns and at the endof-life period. Practice recommendations should focus on communication, bereavement, and post-bereavement support.
Sections du résumé
BACKGROUND
Although mortality rates associated with burns have decreased, there is still a significant number of persons who may not survive severe forms of the injury and thus, undergo comfort/end of life care. The experiences of family members of persons whose injuries are deemed unsurvivable remain minimally explored and there is a general lack of practice guidelines and recommendations to support them at the end-of-life period.
AIM
To explore the experiences of family members whose relatives died in the burn unit to inform the development of practice recommendations.
METHODS
Qualitative description was employed for this study. Convenience sampling was used to recruit 23 family members of injured persons who died in the burn unit. Face to face semi-structured interviews were conducted and followed up with telephone interviews. The interviews were audio-recorded, transcribed verbatim and thematic analysis performed inductively.
RESULTS
Three themes emerged: reactions following injury occurrence, navigating through the experience, and managing uncertainties about survival. The sudden nature of the injury led to feelings of self-blame, guilt, helplessness, and grief and these escalated at the end of life. As the family members journeyed through their uncertainties regarding the outcomes of care, they had a feeling of being a part of the patient's suffering. Family members received little professional support in coming to terms with their loss in the post-bereavement period.
CONCLUSIONS
Family members experience distress following the occurrence of burns and at the endof-life period. Practice recommendations should focus on communication, bereavement, and post-bereavement support.
Identifiants
pubmed: 33832797
pii: S0305-4179(21)00045-0
doi: 10.1016/j.burns.2021.02.009
pii:
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1647-1655Informations de copyright
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