The Lived Experience of Primary Family Caregivers of Patients on Hemodialysis Treatment in Southern Ethiopia: A Phenomenological Study

Abstract

Background Primary family caregivers of hemodialysis patients are the “hidden patients” who shoulder extraordinary care burdens. However, there is a dearth of studies in Ethiopia. The purpose of this study was to explore the lived experience of primary family caregivers of hemodialysis patients in Southern Ethiopia. Methods Qualitative phenomenological study design was employed in February 2021. A homogeneous purposive sampling technique was applied to select study participants. An in-depth interview using an interview guide and field notes were used to collect the required data. All interviews were recorded using a digital audio recorder. Data coding was assisted by Open code software version 4.03. Inductive thematic analysis was used to develop the emerged themes and sub-themes using Colaizzi’s 1978 seven-step phenomenological analysis method. The themes and sub-themes are described in detail in the respective heading and sub-headings. Results A total of twelve participants were involved in the present study. Bio-psychological experience, socio-economic impact, and healthcare provider-primary family caregiver relationships are the major themes that emerged from the data. The emotional responses, coping mechanisms, consequences on the family caregivers’ health, care fatigue, lifestyle change, economic burden, impact on social responsibility, social support, the role of the primary family caregiver, and trust and confidence in the service providers are the sub-themes defining primary family caregivers caring experience. Conclusion In this study, emotional instabilities and reactions, care fatigue, distortion of caregiver’s health, multiple economic and social damages are the major challenges faced by primary family caregivers.