A Qualitative Study on Illness Perception, Health Literacy, Self-Efficacy, and Treatment Adherence among Patients Undergoing

Abstract

Chronic kidney disease (CKD) is a progressive and life-altering condition that often culminates in end-stage renal disease requiring hemodialysis. Although hemodialysis prolongs survival, patients face significant physical, psychological, and social challenges that may influence their illness perceptions, health literacy, self-efficacy, and treatment adherence. Understanding these experiences is essential for developing patient-centered interventions that improve health outcomes and quality of life. This study aimed to explore the lived experiences of patients undergoing hemodialysis, with particular emphasis on illness perception, health literacy, self-efficacy, and treatment adherence. A qualitative research design based on Interpretative Phenomenological Analysis (IPA) was employed. Seven patients diagnosed with chronic kidney disease and receiving regular hemodialysis were recruited through purposive sampling from dialysis units. Data were collected through semi-structured interviews conducted in Urdu and subsequently translated into English. Interviews were analyzed following the systematic IPA framework involving iterative reading, coding, theme development, and cross-case analysis. Analysis generated five superordinate themes: (1) Emotional and Psychological Suffering, (2) Disruption in Daily Life, (3) Acceptance and Coping Strategies, (4) Role of Support Systems, and (5) Treatment Burden and Self-Management. Participants reported experiencing fear, shock, sadness, anxiety about the future, helplessness, and emotional distress following diagnosis. Hemodialysis significantly disrupted daily functioning through physical fatigue, lifestyle restrictions, social isolation, and loss of independence. Despite these challenges, participants demonstrated resilience through acceptance of illness, positive thinking, religious coping, patience, and adaptation over time. Family and community support emerged as crucial factors facilitating emotional well-being and treatment adherence. However, participants also described substantial treatment burdens, including dialysis-related exhaustion, dietary and fluid restrictions, financial difficulties, transportation challenges, and limited understanding of medical information. The findings highlight the complex interplay between illness perception, health literacy, self-efficacy, and treatment adherence among hemodialysis patients. Psychological distress and treatment burden coexist with adaptive coping mechanisms and supportive social relationships. Interventions focusing on psychosocial support, patient education, health literacy enhancement, and family involvement may strengthen self-management behaviors and improve adherence and quality of life among individuals undergoing hemodialysis.