“Managing Uncertainty”: Experiences of family members of Burn patients from injury occurrence to the end-of-life period

Abstract 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, require comfort/ end of life care. The experiences of family members of persons whose injuries are deemed unsurvivable remain minimally explored and there is a generallack 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.