Illness Representations and Self-Management for Slowing Kidney Deterioration: Perspectives from Individuals at Risk of Chronic Kidney Disease

Abstract

This qualitative research aimed to understand illness representations and self-management among patients with chronic diseases experiencing rapid decline in kidney function, using Leventhal's Common-Sense Model of illness representations as the theoretical framework. The informants were patients with diabetes or hypertension who had a rapidly declining glomerular filtration rate (GFR) who resided in the catchment area of Na Ratchakwai Subdistrict Health Promoting Hospital, Mueang Nakhon Phanom District, Nakhon Phanom Province. Thirty participants were purposively sampled until data saturation was achieved. Data were collected through  in-depth interviews and analyzed using content analysis.

The study revealed five themes of illness perception among the patients with rapid decline in kidney function: 1) Disease understanding through comparative contextualization, conceptualized as a "silent hidden threat" and characterized by "uncertainty arising from lack of knowledge"; 2) Health trajectory conflicting with clinical reality, perceived as "gradual progression without prominent symptoms" with the belief that "deterioration can be slowed and managed"; 3) Asymptomatic kidney disease with dismissive perceptions expressed as "awareness without concern due to perceived non-severity" and "knowledge limited to others' symptoms"; 4) Causal attribution between accurate knowledge and misconceptions, manifested through "correct linkage to underlying causes" and "erroneous behavioral attributions"; and 5) Lifestyle patterns facing barriers, including "discordance between knowledge and self-management practices" and "challenges in medication management and healthcare system navigation." Two major themes emerged regarding self-management experiences: 1) Cultural negotiation, encompassing the integration of belief systems and contextual adaptations; and 2) Compromise, reflected in dietary modifications and adjustments to social activities. These findings have significant implications for developing kidney disease progression prevention models that genuinely respond to patients' needs and align with their lived experiences.