اولین همایش بین المللی تحول خدمات سلامت: تلفیق مراقبت، درمان، بازتوانی و امیدبخشی

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کد مقاله 1724

عنوان Self-Care Experiences of Family Caregivers of Patients with Prolonged Disorders of Consciousness

نویسندگان Atena Shojaie - Sirous Pourkhajoei - Neda Asadi

چکیده Introduction and Aim: Long-term care of patients with prolonged disorders of consciousness imposes substantial physical and psychological demands on family caregivers and often leads to the neglect of their own personal needs. Under these circumstances, self-care is shaped by the demands of continuous caregiving, a strong sense of responsibility, and limited support resources. This study aimed to explore the self-care experiences of family caregivers of patients with prolonged disorders of consciousness. Methods: This qualitative study employed a conventional content analysis approach based on the method described by Graneheim and Lundman. Data were collected through in-depth, semi-structured interviews with 16 family caregivers of patients with prolonged disorders of consciousness and were subsequently analyzed. The analytical process involved identifying meaning units, coding, categorization, and the development of main categories. Results: Data analysis yielded 487 initial codes, 19 sub-subcategories, eight subcategories, and three main categories. The overarching theme was “Instrumental Self-Care in the Limbo of Continuous Caregiving.” The first main category, “Erosive Self-Sacrifice and the Absolute Prioritization of the Patient,” comprised two subcategories: “Biological Reduction and the Restriction of Self-Care to the Bare Minimum Necessary for Survival” and “Entrapment in Chronic Hypervigilance and the Inability to Rest Physically and Mentally.” The second main category, “Moral Conflicts, Social Erosion, and the Deadlock of Care Delegation,” comprised four subcategories: “Guilt, Self-Denial, and the Erosion of Personal Identity”; “Temporal Suspension, Ambiguous Loss, and Reluctance to Plan for the Future”; “The Gradual Deterioration of Support Networks and Imposed Social Isolation”; and “The Paradox of Caregiving: The Need for Respite Versus Anxiety About Delegating Care.” The third main category, “Purposeful Self-Care as a Prerequisite for Sustaining the Patient’s Life,” comprised two subcategories: “Seizing Micro-Opportunities and Rescheduling Personal Time Around Clinical Care Routines” and “Operationalizing Self-Care and Adopting Compensatory Strategies to Sustain Survival.” The findings revealed that self-care among these caregivers is a conflicted experience constrained by caregiving circumstances, extending from the neglect of personal needs to purposeful efforts to preserve the capacity to continue providing care. Conclusion: Self-care among family caregivers of patients with prolonged disorders of consciousness is a complex, context-dependent process that fluctuates between self-denial and efforts to preserve the physical and psychological capacity required for ongoing caregiving. Systematic nursing attention to caregivers’ needs, strengthened social support, and the provision of meaningful opportunities for respite may provide a basis for developing supportive interventions tailored to their circumstances.

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