Experiences and needs of family caregivers for patients with End Stage Renal Disease (ESRD) in Palestine.

Abstract

Background: Family caregivers of patients with End-Stage Renal Disease (ESRD) undergoing hemodialysis play a crucial yet demanding role in patient care. Understanding their experiences and needs is essential for improving support systems and caregiving outcomes. This study investigates the caregiving experiences and needs of caregivers for ESRD patients on hemodialysis in Palestine.

Methods: A qualitative descriptive phenomenological approach was employed, utilizing purposive sampling to recruit participants from the Palestine Medical Complex from March 2023 to June 2023. Data collection proceeded until saturation was reached, resulting in a total of 22 interviews. Data were collected through in-depth interviews and analyzed using Colaizzi's phenomenological method to capture the essence of caregivers' lived experiences.

Results: The analysis revealed four central themes that illustrate the diverse challenges caregivers encounter: Overwhelming Demands of Caregiving, Altruistic Commitment to Care, Balancing Roles and Responsibilities, and A Journey Marked by Fears and Anxieties. Additionally, six key categories of support needs were identified: Access to Healthcare, Transportation Coverage, Shared Responsibilities, Physical and Psychological Well-being, Information Dissemination, and Scheduling Flexibility. These themes highlight the multifaceted nature of caregiving, encompassing both the emotional and practical burdens faced by caregivers.

Conclusion: Palestinian caregivers of ESRD patients experience significant physical, emotional, and financial hardships, compounded by the complexities of caregiving and the burdens of inflexible hemodialysis schedules. These challenges are exacerbated by systemic issues, such as shortages of hemodialysis machines and restrictions imposed by the Israeli occupation, which frequently impede access to essential treatments. To effectively support these caregivers, a multi-faceted approach is required. This should include financial assistance to alleviate economic stress, provision of necessary caregiving resources, and the creation of accommodating environments during dialysis sessions. Additionally, psychological support is crucial to help caregivers manage the emotional toll of their responsibilities. Clear and comprehensive information regarding treatment options and prognosis is essential to empower caregivers in navigating the complexities of ESRD care. Future implications of this study suggest the need for policy interventions aimed at improving healthcare infrastructure, enhancing caregiver support systems, and developing targeted programs to bolster resilience among caregivers. Implementing these strategies will be vital in mitigating caregiver burden and ensuring the sustainability of caregiving within the context of chronic illness management in Palestine.