Self-Management, Psychological Correlates, and Clinical Outcomes in People on Dialysis for End Stage Renal Disease
Reston, Jonathan David
The thesis that this dissertation aims to defend is: Certain self-management behaviours in End Stage Renal Disease are predicted by self-efficacy, patient activation, and psychological distress, and in turn predict clinical status. However, self-management is often oversimplified and poorly operationalised, in both the literature and in clinical practice, to adherence and ‘good/bad’ distinctions that may impede future investigations and interventions. End Stage Renal Disease (ESRD) is a chronic condition associated with significant morbidity and increased risk of death. It is commonly treated with haemodialysis, a life sustaining treatment that last approximately four hours, repeated in a healthcare centre or at home, at least three times a week. ESRD also necessitates adherence to a complex set of dietary and fluid intake guidelines, in addition to a complex medication regimen, if the person is to avoid a further increase in the risk of severe symptoms and death. Chronic illness self-management is more than just adherence to prescribed medical treatments however, and requires an individual to preserve their emotional wellbeing, maintain social support networks, and continue to function in a variety of social roles and situations. While this has long been recognised in the theoretical literature about self-management, these concepts are often not well translated into clinical practice or empirical investigations of self-management behaviour in ESRD. When operationalising self-management, some investigations treat the ‘behaviour’ element of self-management as being limited to dialysis, medication, and fluid adherence, or are ignored in favour of psychological correlates such as self-efficacy. A frequent criticism of the self-management literature is that self-efficacy is often treated as an outcome, rather than a psychological component of changes in behaviour, wellbeing, or clinical outcomes. The investigations presented in this dissertation seek to investigate self-management in terms of specific behaviours that go beyond adherence. In doing so, they explore two different types of self-management behaviour, here termed ‘cooperative’ and ‘defensive’ self-management. These behaviours can then be examined in relation to adherence and self-efficacy, as well as other theoretically related factors including patient activation, psychological distress, and illness perceptions. The first three chapters set out the background to the empirical investigations reported in this dissertation. Chapter one covers the background on ESRD and its treatment. Chapter two describes the current state of the conceptual and empirical literature concerning self-management. Chapter three combines a narrative review of empirical investigations into self-management in ESRD, and a review of publically available resources concerning self-management in ESRD. Chapter four describes the methods used in the following empirical chapters. Chapters five, six, seven and eight report original empirical investigations on self-management in ESRD. Chapter nine is a discussion of the combined findings, and their implications in the wider clinical and academic context. Chapter 5 presents the results of a series of focus groups conducted with people on in-centre haemodialysis for ESRD, and the healthcare professionals involved in their care. These explored what each group understood by ‘self-management’, the behaviours and tasks that were important, and the practical, social, and emotional facilitators and barriers. A series of interviews conducted with patients eighteen months later revisited these concepts, focusing on motivations for engaging in self-management behaviours. The combined findings revealed that patient and HCP concepts around self-management overlap, but have a different focus, with HCPs seeing self-management as being about adherence, and patients seeing it as a complex balancing act to maintain their health, emotional wellbeing, and social roles. HCPs identified some patients as ‘good’ and others as ‘bad’. Chapter 6 presents the results of a cross-sectional investigation of self-management behaviour and theoretically related psychological factors, including self-efficacy and psychological distress. Self-management was operationalised using an available scale that covered a variety of the behaviours patients and HCPs identified as important in chapter 5, which included both ‘cooperative’ and ‘defensive’ subscales. Self-efficacy, patient activation, and psychological distress were related to ‘defensive’ behaviours, with higher levels of psychological distress being related to the performance of more defensive behaviours. Higher self-efficacy was related to less frequent performance of defensive behaviours. A novel finding was that psychological distress mediated the relationship between self-efficacy and self-management behaviours. The implication that some proactive self-management behaviours may be associated with poorer emotional wellbeing is discussed. Chapter 7 presents the results of an 18 month longitudinal study of self-management behaviour and clinical markers of adherence. It also reports a survival analysis in the same cohort followed up to 30 months. Higher frequency of cooperative self-management behaviours were associated with lower levels of adherence as indicated by clinical markers. This may be due to the dialysis units in which the study took place, and may in fact reflect how self-management support was conducted in the units at the time of the study. Higher self-efficacy was found to be associated with lower mortality over 30 months after controlling for factors such as age and residual kidney function, an original and potentially important finding. The findings in chapters 6 and 7 raised additional questions about how self-management behaviours are measured and what those measurements indicate. To further investigate, and lay the groundwork for a new scale and general guidelines on the operationalisation of self-management in ESRD, a series of cognitive interviews were conducted. These are reported in chapter 8. They were conducted with people on home haemodialysis, a population whose engagement in a whole range of self-management behaviours is likely to be high. The role of social and emotional factors in the scale and behaviours discussed was also explored. The chapter concludes with a series of suggestions for measuring self-management behaviour in ESRD. This dissertation will explore the concept of self-management for people on haemodialysis, the behaviours involved, and their relationship with psychosocial and clinical status.