Contextualising renal patient routines: Everyday space-time contexts, health service access, and wellbeing

Abstract

Stable routines are key to successful illness self-management for the growing number of people living with chronic illness around the world. Yet, the influence of chronically ill individuals’ everyday contexts in supporting routines is poorly understood. This paper takes a space-time geographical approach to explore the everyday space-time contexts and routines of individuals with chronic kidney disease (CKD). We ask: what is the relationship between renal patients’ space-time contexts and their ability to establish and maintain stable routines, and, what role does health service access play in this regard? We draw from a qualitative case study of 26 individuals with CKD in Australia. Data comprised self-reported two day participant diaries and semi-structured interviews. Thematic analysis of interview transcripts was guided by an inductive-deductive approach. We examined the embeddedness of routines within the space-time contexts of participants’ everyday lives. We found that participants’ everyday space-time contexts were highly complex, especially for those receiving dialysis and/or employed, making routines difficult to establish and vulnerable to disruption. Health service access helped shape participants’ everyday space-time contexts, meaning that incidences of unpredictability in accessing health services set-off ‘ripple effects’ within participants’ space-time contexts, disrupting routines and making everyday life negotiation more difficult. The ability to absorb ripple effects from unpredictable health services without disrupting routines varied by space-time context. Implications of these findings for the deployment of the concept of routine in health research, the framing of patient success in self-managing illness, and health services design are discussed. In conclusion, efforts to understand and support individuals in establishing and maintaining routines that support health and wellbeing can benefit from approaches that contextualise and de-centre everyday human behaviour. Opportunities to support renal patients in managing illness and experiencing wellbeing outside the clinical setting lie in a space-time re-design of chronic care services.

Patient Work and Their Contexts: Scoping Review

“…Category 3 tasks included self-management tasks such as diet control [ 14 , 42 , 48 , 49 , 52 , 53 , 57 , 59 , 63 - 68 , 71 , 75 , 77 - 79 , 82 , 85 , 87 , 90 , 91 ], conduct exercise [ 19 , 20 , 25 , 40 - 42 , 45 , 49 , 56 , 59 , 63 , 66 , 67 , 73 , 77 , 79 , 82 , 87 , 90 , 91 ], taking treatment [ 2 , 18 , 42 , 47 , 49 , 57 , 63 , 64 , 66 - 69 , 71 , 73 - 75 , 78 , 82 , 84 , 85 , 90 - 94 ], monitor signs and symptoms [ 2 , 14 , 41 , 42 , 44 , 45 , 57 , 65 , 67 <...>…”

Stato filosofico nel paziente in trattamento dialitico

“…Infine, il ritmo che viene a mancare è quello della quotidianità, "The second experience of space-time embraced in our analysis, rhythm, is the embodied experience of repetition and difference in everyday life (14)", che ci riconduce inevitabilmente all'ultimo tema, il tempo.…”

“…I just want 1 week at a time to pass, and cope with dialysis//there are several [fellowpatients] who have died over the years, and I don't want to think about things like that. I want to concentrate on having as good time as possible" (14).…”

Racial/Ethnic and Insurance Status Disparities in Distance Traveled to Access Children’s Hospital Care for Severe Illness: the Case of Children with Leukodystrophies

“…While long distances between homes and health care can pose barriers to accessing care [6,7], the ability to travel long distances to access health care represents greater familial capacity to meet a child's health care needs. This may be of particular importance for CSHCN, as patients with more complex illnesses tend to travel farther for hospital care [8,9].…”