Illness Perceptions in Turkish Cypriot Patients Receiving Dialysis

Abstract

Chronic kidney disease (CKD) is a public health concern across the globe. As it progresses, individuals who are diagnosed with advanced kidney failure require kidney replacement therapy (KRT), either through dialysis (haemodialysis [HD] or peritoneal dialysis [PD]) or kidney transplantation. Although dialysis is a common treatment modality for survival, it is a burdensome treatment hence patients often experience challenges that interfere with quality of life and other problematic psychological and clinical outcomes. As such, much effort has focused on understanding adjustment in this context, with the illness perceptions framework having been applied consistently to explore how patients understand, interpret and respond to their circumstances. Understanding the patient experience is critical to providing efficient interventions in kidney healthcare for psychosocial support though the majority of evidence in the field is drawn from white majority patient groups from more advanced healthcare systems.

This programme of research aimed to understand illness perceptions of Turkish Cypriot patients receiving dialysis. This was to address under-representation in research and to provide a bank of evidence to progress kidney care in the local context. A series of studies were designed to examine illness perceptions of this patient group within the specific socio-cultural context. The research programme included: 1) qualitative enquiry of illness experiences of Turkish Cypriot patients receiving HD; 2) a systematic review of qualitative studies examining illness perceptions of patients receiving dialysis more generally; 3) a prospective longitudinal questionnaire study considering correlates of illness perceptions among patients receiving dialysis; and 4) qualitative interviews to understand perspectives of healthcare professionals on psychosocial care needs of patients receiving dialysis in Northern Cyprus.

In study 1, qualitative interviews were conducted with the patients receiving HD. The interview topic guide was designed by using the illness perceptions framework. As this patient group has not been studied earlier, a qualitative method was utilised to gain in-depth understanding of how Turkish Cypriot patients receiving HD experience and make sense of their condition. In total, fourteen patients who receive in centre- HD were interviewed. Interviews were conducted in Turkish and were transcribed verbatim. The analysis was inductively completed by using reflexive thematic analysis in Turkish, and then it was translated into English. Three themes represented the patient experience: (1) ‘Illness Appraisal’ related to making sense of kidney disease and expectations of prognosis; (2) ‘Life changing effects’ highlighted the negative impact of treatment modality on emotional and physical well-being; (3) ‘Active coping strategies’ elucidated cultural beliefs that facilitate cognitive re-framing. Findings indicated cultural influences on adjustment to HD, which have been poorly understood in the local CKD context. The findings suggest the stability of illness perceptions cross-culturally as a framework from which to explore illness experiences, and importantly demonstrate culture bound mechanisms that shape responses to life on HD.

A systematic review synthesised illness perceptions guided qualitative data on patients receiving dialysis. The review aimed to understand the extent to which the findings from study 1 are reflective of broader qualitative data on the illness experiences of patients receiving dialysis. Four studies were identified as eligible for inclusion. By using reflexive thematic analysis, available data were analysed inductively to begin and then applied deductively to the illness perception framework in NVivo software. Six themes were identified within the first stage of the synthesis. They related to the meaning, experience and impact of having diagnosis of kidney failure. These themes were mapped onto the overarching five domains of the illness perceptions framework (i.e., timeline, causality, control/cure, identity, and consequences). The findings highlighted that patients had difficulty in labelling and making sense of kidney disease. They were faced with uncertainty and frequently reported physical and psychological consequences of life on HD. Struggles to regain normality and changes in functionality influenced perception of self. Sources of support were culturally influenced and contributed to cognitive reframing to cope. The synthesis indicated that patients may experience similar challenges however, culture seems to influence sense-making of the condition and behavioural responses to treatment burden.

A prospective longitudinal questionnaire study further examined the relationship between illness perceptions and related variables (e.g., clinical measures, depression and dialysis symptoms) in both patients in the pre-dialysis and dialysis phase. Patients in the pre-dialysis phase who were expected to start dialysis treatment were observed to examine potential differences when commencing dialysis treatment. Little research has longitudinally studied correlates of illness perceptions. Patients were recruited from four dialysis centres in Northern Cyprus. Data were collected from 181 patients (124 patients receiving dialysis [91.1% HD] and 57 patients in the pre-dialysis phase) at baseline (Time 1). Both patient groups were followed at six months (Time 2) and at 12 months (Time 3 = one year). Self-reported measures used included Brief Illness Perceptions Questionnaire (B-IPQ), Patient Health Questionnaire-9 (PHQ-9), Chalder Fatigue Scale (CFS) and Dialysis Symptom Index (DSI). Patients receiving dialysis were found to report higher perception of consequences, emotional response and lower perception of personal control compared to patients in the pre-dialysis phase. Trajectories of illness perceptions were examined and showed that overall patients’ perceptions of consequences and emotional response were expected to decrease over a one year period. Additionally, depressive symptoms were found to be relatively stable over a one-year period. However, those patients who reported higher levels of illness perceptions of consequences and emotional response at baseline were more likely to report greater depression symptoms. There was no significant difference in terms of dialysis related symptoms between patients receiving HD and those receiving PD. Dialysis symptoms were found to be stable over time among patients receiving HD or PD, nevertheless, those patients receiving dialysis who reported greater emotional response and lower levels of personal control at baseline were more likely to report dialysis symptoms. The findings overall seem to be consistent with existing evidence examining illness perceptions in this patient group in the literature. Regular psychological assessment has been suggested to be included in the local nephrology department to screen negative illness perceptions and emotional distress.

The final study within the programme included qualitative interviews to understand the perspectives of healthcare professionals’ involved in kidney care in relation to psychosocial support needs of patients receiving dialysis in Northern Cyprus. Semi-structured interviews were conducted with sixteen healthcare professionals (2 nephrologists and 14 nurses) in Turkish. Transcripts were inductively analysed using reflexive thematic analysis, with the findings then translated into English. Three themes were developed: (1) ‘Adjustment to dialysis’ emphasised the way that healthcare professionals intrinsically linked patient well-being to adjustment to life on dialysis and finding a new sense of balance with the associated routine; (2) ‘Multi-faceted nature of well-being’ emphasised the range of individual, family, economic, hospital and system level factors that impact patients’ overall mental health; (3) ‘Compassionate care’ brought into stark focus the need for empathy with patient situations but recognising the limits within which staff needed to operate due to knowledge, skills and system resources. Feeling stuck particularly in response to demanding patient experience was evident. Healthcare professionals in Northern Cyprus recognise self-management as an important driver of psychological adjustment and identify with a stuckness in their capacity to extend further care.

The findings of the thesis have implications for the development of care pathways that take a more integrated approach to patient physical and mental well-being. This thesis provides comprehensive information on Turkish Cypriot patients who receive dialysis which is an under-represented cultural group in kidney research Self-management strategies for patients should be developed within the local nephrology units. To support this, culturally tailored interventions targeting illness perceptions have been suggested which may improve health outcomes. Finally, psychosocial practice policy is required to provide structured support for patients receiving dialysis in Northern Cyprus.