"Managing uncertainty": Experiences of family members of burn patients from injury occurrence to the end-of-life period.

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.

"Hanging in a balance": A qualitative study exploring clinicians' experiences of providing care at the end of life in the burn unit.

BACKGROUND: Although the culture in burns/critical care units is gradually evolving to support the delivery of palliative/end of life care, how clinicians experience the end of life phase in the burn unit remains minimally explored with a general lack of guidelines to support them. AIM: To explore the end of life care experiences of burn care staff and ascertain how their experiences can facilitate the development of clinical guidelines. DESIGN: Interpretive-descriptive qualitative approach with a sequential two phased multiple data collection strategies was employed (face to face semi-structured in-depth interviews and follow-up consultative meeting). Thematic analysis was used to analyze the data. SETTING/PARTICIPANTS: The study was undertaken in a large teaching hospital in Ghana. Twenty burn care staff who had a minimum of 6 months working experience completed the interviews and 22 practitioners participated in the consultative meeting. RESULTS: Experiences of burn care staff are complex with four themes emerging: (1) evaluating injury severity and prognostication, (2) nature of existing system of care, (3) perceived patient needs, and (4) considerations for palliative care in burns. Guidelines in this regard should focus on facilitating communication between the patient and family and staff, holistic symptom management at the end of life, and post-bereavement support for family members and burn care practitioners. CONCLUSIONS: The end of life period in the burn unit is poorly defined coupled with prognostic uncertainty. Collaborative model of practice and further training are required to support the integration of palliative care in the burn unit.

The Role of Palliative Care in Burns: A Scoping Review.

CONTEXT: Patients with severe burns may face distressing symptoms with a high risk of mortality as a result of their injury. The role of palliative care in burns management remains unclear. OBJECTIVE: To appraise the literature on the role of palliative care in burns management. METHODS: We used scoping review with searches in 12 databases from their inception to August 2019. The citation retrieval and retention are reported in a PRISMA statement. FINDINGS: 39 papers comprising of 30 primary studies (26 from high-income and four from middle-income countries), four reviews, two editorials, two guidelines, and one expert board review document were retained in the review. Palliative care is used synonymously with comfort and end-of-life care in burns literature. Comfort care is mostly initiated when active treatment is withheld (early deaths) or withdrawn (late deaths), limiting its overall benefits to burn patients, their families, and health care professionals. Futility decisions are usually complex and challenging, particularly for patients in the late death category, and it is unclear if these decisions result in timely commencement of comfort care measures. Three comfort care pathways were identified, but it remained unclear how these pathways evaluated "good death" or supported the family which creates the need for the development of other evidence-based guidelines. CONCLUSION: Palliative care is applicable in burns management, but its current role is mostly confined to the end-of-life period, suggesting that it is not been fully integrated in the management process. Evidence-based guidelines are needed to support the integration and delivery of palliative care in the burn patient population.

Developing support strategies for burn care nurses through an understanding of their experiences: A meta-ethnographic study.

AIM: To build a comparative understanding of nurses' experiences with caring for burned patients with the goal of eliciting possible support strategies. BACKGROUND: Considering the stressful nature of burns nursing, there is a need to develop support strategies for burn care nurses. DESIGN: This meta-ethnographic study used Noblit and Hare's approach and followed PRISMA guidelines. DATA SOURCES: The search databases included PsycINFO, EbscoHost, Google Scholar, ScienceDirect, and PubMed from 1990 to 2017. REVIEW METHODS: Qualitative studies were included in the review if they examined burn care nurses' experiences. The Critical Appraisal Skills Programme quality assessment tool was used to appraise each study. RESULTS: Ten papers (six articles and four theses) published between 1998 and 2014 met the criteria for inclusion. Three key concepts were generated from the synthesis: becoming a burns nurse, work environment, and nurses' emotional responses. The relationships between the concepts were noted to be reciprocal, from which a line of argument was developed using Schutz notion of constructs. CONCLUSION: There is a need to establish structures that can encourage burn care nurses to verbalise their feelings as well as strengthen the nursing team.