Factors associated with self-care in people with advanced chronic kidney disease and their experience of care in Catalonia: an application of Leventhal’s self-regulatory model

Abstract

Background: Although evidence has demonstrated the influence of perceptions of chronic kidney disease on health outcomes in patients, there are still gaps in our knowledge regarding how such perceptions manifest themselves in specific populations with advanced chronic kidney disease (ACKD). This study aims to investigate the cognitive and emotional processes of people with ACKD in relation to their illness, as well as to examine their coping strategies and experiences of care in the context of outpatient care in the southern metropolitan area of Barcelona (Spain). Methods: This is a qualitative study in which the lived experiences and perceptions of ACKD are explored based on the postulates of the Self-Regulation Model (SRM). Eleven people with ACKD were selected from primary care centres and outpatient nephrology clinics at the referral hospital. A thematic analysis of the data was carried out, identifying dominant themes related to the mental structures and coping strategies for ACKD in accordance with the concepts described in the SRM. Findings: The SRM facilitated the exploration and understanding of psychosocial factors related to ACKD, as reported by patients, as well as the diverse coping strategies they adopted. Health information about ACKD, exacerbations, and/or disease progression can trigger cognitive representations such as the perception of weakness, complex therapeutic regimens, lifestyle modifications, and loss of autonomy, along with emotional representations such as sadness and fear. These mental constructs can act as mediators that influence coping responses, facilitating adaptive strategies but also potentially acting as barriers to effective self-care in ACKD. Coping efforts were primarily directed at preventing clinical decompensation and slowing disease progression. All aspects of this process were situated within a healthcare institutional context characterized by limited access to health information, poor coordination between healthcare professionals, and fragmented continuity of care. Conclusion and implications for practice: The Leventhal's self-regulatory model facilitated the understanding of the psychosocial factors associated with ACKD, as reported by patients, as well as the various coping strategies they employed. Findings highlight how individuals manage ACKD based on cognitive and emotional structures, supporting future SRM applications. Educational interventions should strengthen identity, promote coping strategies while addressing barriers, and explore emotional impacts. Additionally, healthcare strategies should enhance professional awareness, improving both health education and care continuity.