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Family Caregivers' Goals-of-Care Decisions for Critically Ill Older Adults: A Reflexive Thematic Analysis
Sayed Ibrahim Ali1, Mostafa Shaban2
1Department of Family and Community Medicine, College of Medicine, King Faisal University, Al-Ahsa, Saudi Arabia.
Background:
Family caregivers often act as surrogate decision-makers for critically ill older adults, but little is known about how goals-of-care decisions are experienced in Saudi intensive care units, where family hierarchy, Islamic values, restricted visiting and physician-led communication shape care.
Aim:
To explore family caregivers' experiences of goals-of-care decision-making for critically ill older adults admitted to intensive care units in Al-Ahsa, Saudi Arabia.
Study Design:
A qualitative study using reflexive thematic analysis. Semi-structured face-to-face interviews were conducted in Arabic with 18 purposively sampled family caregivers across three adult intensive care units in two government hospitals. Data were analysed inductively using Braun and Clarke's six-phase approach, supported by reflexive journaling and peer debriefing.
Findings:
Four themes were developed: Navigating the Unknown; The Weight of an Impossible Responsibility; Faith as a Compass, Community as a Gaze; and Present but Unheard. Together, they describe compounding vulnerability created by informational opacity, moral responsibility, family hierarchy, diverse Islamic ethical interpretations, and inconsistent professional support.
Conclusions:
Goals-of-care decision-making in the participating Saudi intensive care units was emotionally demanding, culturally embedded and relationally mediated. Nurses were trusted relational anchors, but their supportive potential was constrained by workload and unclear formal roles.
Relevance To Clinical Practice:
ICU nurses can support values-aligned decision-making through plain-language communication, inclusive engagement of both the family spokesperson and primary caregiver, culturally sensitive opportunities for marginalised caregivers to contribute and coordination of spiritual and psychosocial support.
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