Older Peoples’ views of choice and decision-making in chronic kidney disease: a grounded theory study of access to the social world of renal care

Chronic kidney disease (CKD) is increasing in prevalence worldwide, with the largest increase occurring in individuals over the age of 65 years. Providing renal replacement therapy (RRT) to this older population will challenge health care systems, in terms of resources needed, as well as healthcare staff caring for this highly dependent group, who frequently have multiple co-morbidities. This study aimed to develop a theory that adequately accounts for the social processes involved when older people, with CKD stages 4 and 5 access treatment. The study sought to explore the concerns they had with CKD when making treatment decisions and identified how their concerns were resolved. This study employed grounded theory using the full complement of coding, categorisation, and theoretical development. Data was collected from interviews and observations of clinic consultations between patients and healthcare practitioners, from 21 older people who were at the point of making treatment decisions. The main concerns for older people in this study focused upon achieving safe care. This led to the development of the theory ‘Negotiating a Safe Existence’, which explains the processes older people encountered during their treatment decision-making journey. The basic social process of negotiation enabled them to use strategies and tactics to secure a place of safe care. This process involved transitioning through three stages represented by the sub-categories ‘Confronting a Deteriorating Self’, ‘Sourcing Information’, and ‘Traversing Disruption’. This grounded theory identified the importance of information to older people with differing awareness levels concerning the seriousness of their CKD. Varying degrees of negotiation were evident reflecting the differences in information awareness, their role in treatment decision-making, and their perceptions of risk and harm from dialysis. The theory represented an insight into the status passage of these individuals as they entered a critical phase of their CKD. The structural processes of the renal clinic, doctors, existing patients, and families all influenced older people’s status passage. The findings highlighted older people’s perception of self-care dialysis, with the majority of patients in this study employing risk-aversion strategies to ensure they received care in a place of perceived safety, which was mainly hospital based dialysis.