Living with Chronic Kidney Disease : The role of illness perceptions, treatment perceptions and social support

Abstract

Chronic Kidney Disease (CKD) patients, particularly patients on dialysis, often experience difficulties with participating in daily activities, including paid work. Restrictions on the quantity or quality of activities, may impede people’ perceived autonomy and self-esteem. This thesis addressed the question why some patients with CKD succeed in keeping high levels of autonomy and self-esteem, and maintaining paid employment, whereas others do not, and focused on psychological factors considered relevant for patients’ functioning. The research examined to what extent (pre-) dialysis patients feel autonomous, experience self-esteem, and perform paid work, and to what extent variation in therein can be explained from differences in illness and treatment perceptions and experienced social support. Cross-sectional data from 109 pre-dialysis patients, and cross-sectional and longitudinal data from 166 dialysis patients were used. A further aim was to develop and pilot test a psychological intervention for patients and their partners, aimed at supporting participation in daily activities – including paid work – and perceived autonomy and self-esteem. Patients’ average autonomy levels were only moderate; the average self-esteem levels were rather high. Labour participation among dialysis patients was low, and results suggest that pre-dialysis patients already resign from paid jobs. Multiple regression analyses (controlled for background characteristics) demonstrated that illness and treatment perceptions explained a substantial amount of variance in autonomy and self-esteem (17 to 27%). On the whole, patients who perceive high personal control over the illness, little impact of the illness and treatment on daily life, and little concern about the illness, reported higher levels of perceived autonomy and self-esteem. Perceptions were not associated with employment, though trends were observed. By means of pooled-cross sectional analyses (controlled for background characteristics and dependency of multiple observations within individuals), it was investigated whether patients’ perceptions vary across the illness trajectory, i.e. depend on dialysis duration and type of treatment in (pre-) dialysis patients; vary across an 8-month interval in dialysis patients. Results suggest that illness and treatment perceptions - relevant for patients’ outcomes - vary across the CKD trajectory, and therefore offer starting points for altering these perceptions by means of an intervention. Next, the role of support was investigated, and whether the effects of support depend on patients’ perceptions of concern and personal control. Emotional support was solely positively related to autonomy in highly concerned patients. Overprotection was negatively associated with autonomy, and this association was stronger in patients high in personal control. Furthermore, a positive main effect of emotional support, and negative main effects of perceived lack of emotional support and overprotection on self-esteem were observed. Next, a psychological intervention was developed, based on theories of self-regulation, social learning and self-determination, and the empirical study results. The intervention was tested on feasibility and first experiences on a small scale. Findings were positive and suggest that a theory-driven multiple approach is feasible and possibly effective. Future research needs to investigate whether the developed intervention leads to fewer patients quitting daily activities (including jobs) and increased feelings of autonomy, both in the short term and in the long run.