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

Bayuo, Jonathan; Bristowe, Katherine; Harding, Richard; Agbeko, Anita Eseenam; Baffour, Prince Kyei; Agyei, Frank Bediako; Wong, Frances Kam Yuet; Allotey, Gabriel; Agbenorku, Pius; Hoyte-Williams, Paa Ekow

doi:10.1016/j.burns.2021.02.009

Cited by 11 publications

(28 citation statements)

References 31 publications

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“…Studies in the intensive care unit have highlighted similar concerns noting that family members are often in a state of uncertainty which was worsened by poor communication. 12,27 Thus, ED staff will require training in communication skills which should focus on initiating goals of care discussion with families (and patients where applicable), providing regular updates to families, interprofessional communication, and breaking death news. 46 Where possible, collaboration with palliative care specialists may help to support ED staff in ensuring a family-centred approach to care.…”

Section: Discussionmentioning

confidence: 99%

“…25 This may imply a need for PC/ EOL care to be fully integrated into health systems, including traditionally non-palliative care settings such as the ED in both developed and developing settings. 12,26,27 Moving towards this direction requires an in-depth exploration of how ED staff experience and navigate through care at the EOL to underpin the development of context-specific services. 4,28 Thus, this study sought to uncover the EOL care experiences as lived by ED staff.…”

Section: Introductionmentioning

confidence: 99%

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“Resuscitate and Push”: End-of-Life Care Experiences of Healthcare Staff in the Emergency Department – A Hermeneutic Phenomenological Study

et al. 2021

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Objective Care in the emergency department focuses significantly on delivering lifesaving/ life-sustaining clinical actions, often with limited attention to health-related suffering even at the end-of-life. How healthcare staff experience and navigate through the end-of-life phase remains minimally explored. Thus, this study aimed to uncover the lived experiences of emergency department staff at the end-of-life. Methods van Manen’s hermeneutic phenomenological approach was used. Nineteen healthcare staff were purposively recruited and interviewed. Interviews were audio-taped, transcribed verbatim, and thematic categories formulated. The existential lifeworld themes (corporeality, relationality, spatiality, and temporality) were used as heuristic guides for reflecting and organizing the lived experiences of participants. Results The overarching category, ‘ resuscitate and push’, was captured as corporeality (resisting death and dying); relationality (connectedness to the body of the patient; and lacking support for family and self); spatiality (navigating through a liminal space and lack of privacy for patients); and temporality (having limited to no time for end-of-life care and grieving). The end-of-life space was unpleasant. Although participants experienced helplessness and feelings of failure, support systems to help them to navigate through these emotions were lacking. Grief was experienced covertly and concealed by the entry of a new patient. Conclusion End-of-life in the emergency department is poorly defined. In addition to shifting from the traditional emergency care model to support the streamlining of palliative care in the department, staff will require support with navigating through the liminal space, managing their grief, and developing a better working relationship with patients/ families.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“Resuscitate and Push”: End-of-Life Care Experiences of Healthcare Staff in the Emergency Department – A Hermeneutic Phenomenological Study

et al. 2021

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“…These primary stressors were related to the injury/treatment processes, actual caregiving, and outcome (concerns regarding increasing frailty levels). Although some of these stressors are like those experienced by informal caregivers of burn patients in other age groups, 21,34 concerns regarding increasing frailty levels seem unique among family caregivers of elderly burn patients. As previously noted, informal caregivers of hospitalized elderly persons who perform various caregiving tasks are at a higher risk of emotional stress and physical strain.…”

Section: Discussionmentioning

confidence: 99%

Exploring the Background, Context, and Stressors of Caregiving to Elderly Burned Patients: A Qualitative Inquiry

Bayuo

Aniteye

Richter

et al. 2021

Journal of Burn Care &Amp; Research

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Elderly persons are at risk of experiencing burns and require support from both formal and informal caregivers. Informal caregiving in this situation has been minimally explored. Guided by the Stress Process Model, this study aimed at exploring the background, context, and stressors of informal caregivers of elderly burned persons during hospitalisation. A qualitative descriptive design was utilised. Purposive sampling approach was used to recruit fourteen (14) informal caregivers who rendered care to elderly burned persons during hospitalisation. Interviews were conducted and transcribed verbatim following which directed content analysis was undertaken deductively. Three categories and six sub-categories emerged which characterise the background, context, and stressors of informal caregiving to elderly burn patients. All the injuries occurred in the home setting and its sudden nature led to varied post-burn emotional responses which characterised the context of burns caregiving. Primary stressors that emerged were related to the injury, actual caregiving demand, and concerns regarding increasing frailty levels. Secondary stressors identified were financial concerns and lifestyle changes. The findings suggest that the occurrence of burn injury served as a precursor to post-burn stress response among informal caregivers. Increasing frailty levels, adequacy of household safety measures and financial issues were key concerns which emphasise the need for psychosocial/ transitional support, innovative healthcare financing measures and continuing education on burns prevention in the home setting.

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“…Finally, 2 articles explored, qualitatively, the experiences of professionals and relatives of patients who were cared in Burn ICUs at the end-of-life. These studies highlight the experiences of "hanging in balance" and managing uncertainty, suggesting the need for a better integration of PC in Burn ICUs (Bayuo et al 2021a(Bayuo et al , 2021b.…”

Section: Description Of the Articles Included For Analysis And Synthesismentioning

confidence: 96%

“…Physicians in Burn ICUs often experience reluctance to forgo life-sustaining therapies (Metaxa and Lavrentieva 2015), which may delay comfort care (Bayuo et al 2021a). One study reported that 73% of the participant clinicians considered withholding and withdrawing decisions as being ethically distinct; 30% of these physicians considered that they would forgo (i.e., withhold/withdraw) the treatment of conscious patients without discussing it with their families (Metaxa and Lavrentieva 2015).…”

Section: What Are the Main Characteristics Of The End-of-life And End...mentioning

confidence: 99%

What do we know about experiencing end-of-life in burn intensive care units? A scoping review

et al. 2022

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Objectives The aim of this article is to review and synthesize the evidence on end-of-life in burn intensive care units. Methods Systematic scoping review: Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews was used as a reporting guideline. Searches were performed in 3 databases, with no time restriction and up to September 2021. Results A total of 16,287 documents were identified; 18 were selected for analysis and synthesis. Three key themes emerged: (i) characteristics of the end-of-life in burn intensive care units, including end-of-life decisions, decision-making processes, causes, and trajectories of death; (ii) symptom control at the end-of-life in burn intensive care units focusing on patients’ comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and palliative care. Significance of results End-of-life care is a major step in the care provided to critically ill burned patients. Dying and death in burn intensive care units are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different dying trajectories were described, suggesting the possibility to develop further studies to identify triggers for palliative care referral. Symptom control was not described in detail. Palliative care was rarely involved in end-of-life care for these patients. This review highlights the need for early and high-quality palliative and end-of-life care in the trajectories of critically ill burned patients, leading to an improved perception of end-of-life in burn intensive care units. Further research is needed to study the best way to provide optimal end-of-life care and foster integrated palliative care in burn intensive care units.

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

Cited by 11 publications

References 31 publications

“Resuscitate and Push”: End-of-Life Care Experiences of Healthcare Staff in the Emergency Department – A Hermeneutic Phenomenological Study

“Resuscitate and Push”: End-of-Life Care Experiences of Healthcare Staff in the Emergency Department – A Hermeneutic Phenomenological Study

Exploring the Background, Context, and Stressors of Caregiving to Elderly Burned Patients: A Qualitative Inquiry

What do we know about experiencing end-of-life in burn intensive care units? A scoping review

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