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Losing a close person to death in ICU: A thematic analysis of bereaved family members' experiences of end-of-life care
Marie Cederschiöld University, Department of Health Care Sciences. Karolinska University Hospital, Sweden.ORCID iD: 0000-0002-3724-8435
Marie Cederschiöld University, Department of Health Care Sciences. Stockholms Sjukhem, Sweden.ORCID iD: 0000-0003-2711-0245
University West, Sweden; Skaraborg Hospital Skövde, Sweden; Skaraborg Institute for Research and Development, Sweden.
Nord University, Norway; Uppsala University, Sweden.
2026 (English)In: Intensive and Critical Care Nursing, ISSN 0964-3397, Vol. 94, article id 104359Article in journal (Refereed) Published
Abstract [en]

Objectives: This study aims to describe bereaved family members experiences of end-of-life care following the death of a close person in ICU.

Methods: A qualitative descriptive design was used. Semi-structured interviews were conducted with 22 bereaved family members (18 women and 4 men, aged 26 to 81 years). The inclusion criteria were being a bereaved family member of an adult patient who had died in one of the seven participating ICUs, being at least 18 years old, and proficient in Swedish. Data was analyzed using reflexive thematic analysis.

Results: The findings are described in five themes: Time filled with fear and uncertainty, Challenges in understanding critical information, Struggling to grasp the imminence of death, Fear of patient had suffered at the very end of life, and The importance of farewell in the ICU. Family members described the transition from therapeutic treatment to end-of-life care as being unclear, with the realization of death was approaching occurring gradually and sometimes suddenly, leading to confusion and distress. The opportunity to take farewell, whether through physical presence, shared silence, or collective rituals, was described as essential to finding peace and fostering emotional closure.

Conclusions: In ICUs, family members are in great need of compassionate support, characterized by the presence of ICU nurses and their emotionally attuned communication. This support helps family members navigate the complexity in care, fostering trust, meaning-making, and a sense of dignity.

Implications for clinical practice: It is important that ICU nurses have the possibility to prioritize sensitive, individualized communication, emotional support, and opportunities for meaningful farewells. Flexibly accommodating family members' needs and preferences at the end of life is central to delivering respectful family-centered care.

Place, publisher, year, edition, pages
2026. Vol. 94, article id 104359
Keywords [en]
End-of-life care, Bereaved family members, ICU, Palliative care, Thematic analysis, Qualitative method
National Category
Nursing Palliative Medicine and Palliative Care
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
URN: urn:nbn:se:esh:diva-11693DOI: 10.1016/j.iccn.2026.104359ISI: 001706559200001PubMedID: 41762494OAI: oai:DiVA.org:esh-11693DiVA, id: diva2:2009280
Note

Publication status in dissertation: Resubmitted

Title in dissertation: Losing someone close to death in ICU: A thematic analysis of bereaved family members' experiences of end-of-life care

Available from: 2026-08-06 Created: 2025-10-27 Last updated: 2026-08-06Bibliographically approved
In thesis
1.
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2. End-of-life care in ICU: Experiences of critical care nurses and family members
Open this publication in new window or tab >>End-of-life care in ICU: Experiences of critical care nurses and family members
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis investigates, explores and describes critical care nurses' and family members' experiences of end-of-life care in an intensive care context. Both qualitative and quantitative methods were used. Data was collected through individual interviews with critical care nurses and family members, as well as questionnaires distributed to family members. The analyses employed qualitative content analysis, interpretive description, reflexive thematic analysis, and statistical analyses to provide a comprehensive understanding of the findings. The findings showed that critical care nurses view the integrity of patients as a fundamental component of quality care (studies I, II). However, the concept of integrity was considered elusive, with critical care nurses indicating that their own integrity is essential for recognizing and respecting the integrity of patients (study I). Ethical challenges encountered by critical care nurses ranged from decisions about life-sustaining treatments and the administration of pain relief to considerations regarding patient preferences and organ donation (study II). From the perspectives of family members, overall satisfaction with end-of-life care in intensive care units was reported (studies III, IV). Nonetheless, several deficiencies were identified, particularly a lack of attention to the individual needs, such as the emotional needs of family members. Also, those family members who rated their health as worse compared to a year ago, generally rated lower satisfaction in the decision-making sub-scale (study III). Additionally, family members frequently struggled to recognize the imminence of death and perceived that patients were suffering, despite the provision of pain relief as part of the end of-life care (study IV).

Place, publisher, year, edition, pages
Stockholm: Marie Cederschiöld högskola, 2025. p. 119
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 25
Keywords
End-of-life, Ethical challenges, Family members, Integrity, Intensive care, Critical care nurses, Palliative care
National Category
Nursing Palliative Medicine and Palliative Care
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-11695 (URN)978-91-985807-4-7 (ISBN)
Public defence
2025-12-05, Aulan, Stigbergsgatan 30, Stockholm, 13:00
Opponent
Supervisors
Available from: 2025-11-12 Created: 2025-11-10 Last updated: 2025-11-12Bibliographically approved

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Palmryd, LenaAlvariza, Anette

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Citation style
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