Illness experiences, psychosocial problems, and coping processes among individuals with autosomal dominant polycystic kidney disease: a qualitative study

Autosomal dominant polycystic kidney disease (ADPKD) is a chronic inherited disorder with renal and extrarenal manifestations that can substantially affect quality of life. Uncertainty about progression, the prospect of future dialysis, and the demands of lifelong monitoring and treatment may create psychosocial difficulties and influence treatment adherence. This study aimed to explore in depth the illness experiences, psychosocial problems, coping processes, and treatment-adherence experiences of adults with ADPKD. This was a qualitative study with an experiential, interpretive orientation. Semi-structured, in-depth interviews were conducted with 25 adults with ADPKD attending a nephrology outpatient clinic in Ankara, Türkiye, between July and September 2025. Descriptive characteristics were summarised using counts, percentages, means, and standard deviations. Interview data were analysed manually using a codebook approach to thematic analysis, structured by Braun and Clarke’s six-phase framework. The analysis generated three categories (illness experience, effects of the illness, and management of the illness process), comprising seven themes and 29 subthemes. Participants described pain, hypertension, fatigue, anxiety, fear of dialysis, genetic guilt, disruption of family relationships, employment difficulties, and stigmatisation. Coping responses included religious coping, emotional avoidance, and support from family members. Under the theme of treatment adherence, medication and follow-up adherence, and changimg one’s lifestyle were identified. In addition to its physical effects, ADPKD carries a substantial psychosocial burden. Care that focuses only on medical management may leave important needs unaddressed. Routine assessment of patients’ and families’ psychosocial needs, together with multidisciplinary support, may strengthen coping and treatment adherence and reduce distress related to the disease and anticipated dialysis.