TY - JOUR
T1 - “Managing uncertainty”
T2 - Experiences of family members of burn patients from injury occurrence to the end-of-life period
AU - Bayuo, Jonathan
AU - Bristowe, Katherine
AU - Harding, Richard
AU - Agbeko, Anita Eseenam
AU - Baffour, Prince Kyei
AU - Agyei, Frank Bediako
AU - Wong, Frances Kam Yuet
AU - Allotey, Gabriel
AU - Agbenorku, Pius
AU - Hoyte-Williams, Paa Ekow
N1 - Funding Information:
The study was supported by a BuildCare Africa Grant from the Cicely Saunders Institute, Kings College-London .
Publisher Copyright:
© 2021 Elsevier Ltd and ISBI
PY - 2021/11
Y1 - 2021/11
N2 - 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.
AB - 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.
KW - Burns
KW - End of life care
KW - Family members
KW - Palliative Care
UR - http://www.scopus.com/inward/record.url?scp=85103706261&partnerID=8YFLogxK
U2 - 10.1016/j.burns.2021.02.009
DO - 10.1016/j.burns.2021.02.009
M3 - Journal article
C2 - 33832797
AN - SCOPUS:85103706261
SN - 0305-4179
VL - 47
SP - 1647
EP - 1655
JO - Burns
JF - Burns
IS - 7
ER -