title: Time to manage: patient strategies for coping with an absence of care coordination and continuity.
abstract: This paper examines how people with chronic illnesses respond to absences of continuity and coordination of care. Little work has been done on how the ill person might mitigate flaws in a less than optimal system. Our qualitative research, carried out among 91 participants in Australia, reveals that people with chronic illnesses create strategies to facilitate the management of their care. These strategies included efforts to improve communication between themselves and their health care practitioners; keeping personal up-to-date medication lists; and generating their own specific management plans. While we do not submit that it is patients' responsibility to attend to gaps in the health system, our data suggests that chronically ill people can, in and through such strategies, exert a measure of agency over their own care; making it effectively more continuous and coordinated. Participants crafted strategies according to the particular social and bodily rhythms that their ongoing illnesses had lent to their lives. Our analysis advances the view that the ill body itself is capable of enfolding the health system into the rhythms of illness - rather than the ill body always fitting into the overarching structural tempo. This entails an agent-centric view of time in illness experience. A Virtual Abstract of this paper can be found at: https://youtu.be/UwbxlEJOTx8.
authors.affiliation: Centre for Medical and Health Sciences Education, The University of Auckland, New Zealand.|Australian Primary Health Care Research Institute, Australian National University, Australia.
authors.forename: Tanisha
authors.initials: T
authors.lastname: Jowsey
authors.affiliation: School of Archaeology and Anthropology, The Australian National University.
authors.forename: Simone
authors.initials: S
authors.lastname: Dennis
authors.affiliation: Australian Primary Health Care Research Institute, Australian National University, Australia.
authors.forename: Laurann
authors.initials: L
authors.lastname: Yen
authors.affiliation: Australian Primary Health Care Research Institute, Australian National University, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Mofizul Islam
authors.affiliation: Australian Primary Health Care Research Institute, Australian National University, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: Parkinson
authors.affiliation: Australian Primary Health Care Research Institute, Australian National University, Australia.
authors.forename: Paresh
authors.initials: P
authors.lastname: Dawda
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D001315:Australia; D002908:Chronic Disease / Q000523:psychology*; D003266:Continuity of Patient Care; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012648:Self Care
keywords: chronic illness; continuity of care; coordination; self-management; time