Consumer centred care in nephrology social work: understanding the psychosocial experiences of adult patients living with chronic kidney disease and their carer

© 2015 Dr. Trisha Anne KinradeIntroduction Chronic Kidney Disease (CKD) imposes a substantial burden on individuals and communities. It can have a profound impact on the wellbeing and quality of life of the individual diagnosed with the disease and also on their family. CKD is associated with complex psychosocial problems in both patients and their primary carer. Individual quality of life can be compromised through the experience of anxiety and depression, a reduced sense of hope, limited coping strategies and reduced social supports. The complex nature of CKD can result in a reduction in quality of life and can affect dyadic adjustment and lead to the development of learned helplessness in both the patient and their carer. Aim The aim of this longitudinal study was to explore the contextual and complex nature of the psychosocial experiences and implications of illness on both adult patients experiencing CKD and their carers. This was done to provide insight and understanding into the individual patient’s experience of CKD including the impact on their quality of life and the psychological experiences of the disease including hope, depression and anxiety, social support, coping. It also aimed to provide insight into the implications of the illness on dyadic adjustment and learned helplessness and into the psychosocial impact of CKD on carers. Method This is a case series study exploring a number of identified issues relevant to the renal population. It used previously validated tools over a 12 month period to explore the research questions presented in the thesis. "Controls" were not used as the published data already showed what the “norm” was or what the expected responses would be within a similar underlying population. The goal was to compare the current group of participants against the established norms and the patient scores against their carer’s scores. The number of participants were chosen by looking at other published studies exploring a similar question in a similar population. To support this methodology, minimal clinically important differences (MCID) were reported for the tools where a pre-established MCID had been reported in the literature. Findings This study has shown that: • Quality of life was compromised in the current patient participants. In particular the symptoms and problems of kidney disease, effects of kidney disease and physical component summary subscales of the KDQoL were the most compromised subscales in this population. These results are reflective of those previously reported in the literature. • In relation to carer perceptions of quality of life in patients, there was a lack of agreement between patient and carer perceptions of the patient’s quality of life. • In the overall participants, hope was not significant and did not correspond to high levels of quality of life. The participants reporting high levels of hope, however, also reported above average quality of life scores. • Anxiety and depression were not significant factors for the overall population, although higher levels of anxiety were reported by both patients and carers when compared to depression. This finding contradicts the previously reported literature. • The participants in this study used more emotion-focused coping strategies and fewer problem-focused coping strategies and this assisted them to develop coping strategies for dealing with illness intrusiveness. • Social support was high in the participants and in particular perceived support from family and significant others were the most frequently reported sources of social support. This high degree of support was reflected in normal to mild anxiety and depression scores for both patients and carers, thus supporting a limited number of studies in the literature. • Learned helplessness was not significant in the current study participants. Depression and anxiety were not significant in the minimal number of patients and carers who reported high levels of learned helplessness. • Dyadic adjustment was reported in fifty percent of the participating dyads in this study. Overall dyadic adjustment and in particular dyadic cohesion and affectional expression resulted in lower incidence of depression and anxiety and higher reported levels of hope. Conclusion In conclusion, this thesis offers a comprehensive, detailed and deeper understanding about the psychosocial experiences of patients across all stages of CKD and their nominated carer from an Australian perspective. CKD has a profound impact on patients’ and caregivers’ physical, mental and emotional wellbeing, relationships with family and friends, lifestyle, and roles and responsibilities. Despite facing the continuous and overwhelming challenges of CKD, the patients and caregivers in this study used an array of emotion-focused coping strategies, and formal and informal social supports to maintain a reasonable quality of life. Suggestions for future research and implications for social work practice are made