It is difficult to define continuity of care or study its impact on health outcomes. This study took place in three stages. In stage I we conducted qualitative research with patients, their close relatives and friends, and their key health professionals from which we derived a number of self completion statements about experienced continuity that were tested for reliability and internal consistency. A valid and reliable 18-item measure of experienced continuity was developed in stage II. In stage III we interviewed 199 patients with cancer up to five times over 12 months to ascertain whether their experiences of continuity were associated with their health needs, psychological status, quality of life, and satisfaction with care. The qualitative data revealed that experienced continuity involved receiving consistent time and attention, knowing what to expect in the future, coping between service contacts, managing family consequences, and believing nothing has been overlooked. Transitions between phases of treatment were not associated with changes in experienced continuity. However, higher experienced continuity predicted lower needs for care, after adjustment for other potential explanatory factors (standardised regression coefficients ranging from À0.12 (95% CI À0.20, À0.05) to À0.32 (95% CI À0.41, À0.23)). Higher experienced continuity may be linked to lower health care needs in the future.
A ndrew Irving University of ManchesterA problem facing anthropologists, given the centrality of memory and imagination to all social life, is how to access memory and the imaginary when there is no independent access to consciousness. Moreover, the discipline has 'largely failed to distinguish itself' in response to understanding HIV/AIDS (Annual Review of Anthropology 30, 2001: 163). In response to these observations I would argue that orthodox approaches are limited and we need to create new forms of collaborative research and representation with regard to understanding experiences of illness. Accordingly this article attempts to bring to life the interior dialogue of persons living with HIV/AIDS through performance by 'mapping' the city of Kampala through its emotions and memories rather than buildings and streets.This article attempts to blur the lines between ethnography, art, and performance in the pursuit of memories about illness and death in contemporary Africa. It uses the notion of ethnography as a particular type of performance to create mnemonic contexts that are 'already underway' but would not exist without the intervention of the anthropologist or local informants' willingness to inhabit unaccustomed roles. Establishing these kinds of 'staged' encounters within the field potentially opens up different kinds of dialogue between informants and their surroundings; as events happen and dramas unfold, habitual roles are re-cast and the field is 'made strange' for locals and anthropologist alike, creating the possibility for different types of intentionality, interaction, and understandings of people's 'everyday' thinking and being. The ethnographic context that is created through such performances is one in which memories, presuppositions, social roles, and statuses are continually made explicit and publicly available, thereby raising the possibility that 'something like a drama' might emerge 'from the otherwise smooth surfaces of social life ' (Turner 1982: 9).Other than by Victor Turner, my attempt at creating this type of fieldwork site is influenced by the work of the experimental theatre company Forced Entertainment 1 on urban landscapes and the innovative ethnographic filmmaker Jean Rouch's attempts to access the imaginary. Moreover like these artists' works, the staging of fieldwork performances can be repeated amongst people living in radically different social
The capacity for a complex inner life--encompassing inner speech, imaginative reverie, and unarticulated moods--is an essential feature of living with illness and a principal means through which people interpret, understand, and manage their condition. Nevertheless, anthropology lacks a generally accepted theory or methodological framework for understanding how interiority relates to people's public actions and expressions. Moreover, as conventional social-scientific methods are often too static to understand the fluidity of perception among people living with illness or bodily instability, I argue we need to develop new, practical approaches to knowing. By placing the problem of interiority directly into the field and turning it into an ethnographic, practice-based question to be addressed through fieldwork in collaboration with informants, this article works alongside women living with HIV/AIDS in Uganda with the aim of capturing the unvoiced but sometimes radical changes in being, belief, and perception that accompany terminal illness.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.