Breast cancer stories : exploring the multimodal narratives of twelve South African women with recurrent disease

Abstract

ENGLISH ABSTRACT: Breast cancer is a major global health burden. While advances in the detection and treatment of breast cancer have improved survival rates, a considerable proportion of women with breast cancer will experience disease recurrence. With more research emphasis directed at understanding the experiences of breast cancer survivors, less is known about women’s experiences of recurrent disease. In this dissertation, I explore the breast cancer stories of 12 South African women with recurrent disease. I present and discuss the participants’ stories, as gathered across multimodal narrative data (i.e., narrative interviews, diaries and body maps), including meanings they attached to their experiences. I conducted a thematic analysis across all narrative data to understand the content of participants’ stories. Thereafter, by using the interpretive framework of Frank’s (1995) narrative types (restitution, chaos, and quest), I undertook a narrative analysis in order to examine the structure of the stories. I then synthesized the thematic and narrative analyses to identify patterns of responses across the narrative types. Three narrative types emerged: four participants described their experience of recurrence as a temporary situation, which would soon end if the necessary treatments were adhered to. These stories followed the restitution plot and maintained a linear order characteristic of this narrative type. For another participant, her cancer recurrence seemed to have caused a great deal of anxiety, which manifested in a fragmented account; lacking narrative order. I interpreted her story as a chaos narrative. The seven remaining participants described their recurrent disease as an opportunity for self-discovery, personal growth, and for helping other women with breast cancer. These stories followed the quest narrative, though, at times, contained elements of the other narrative types. Although the findings corroborate Frank’s (1995) narrative types, the stories of recurrence seemed to be more complex than conventional, episodic, illness stories. Overall, I understood participants’ meanings of recurrence to be shaped by their responses to illness (illness appraisal and coping) and tied to their identities in relation to the illness. In some stories, participants’ illness appraisals and coping strategies moved beyond Frank’s (1995) original formulation, and in a few, changes in identity seemed to transpire into changes in narrative type. I reflect on the value of a multimodal narrative methodology and the triangulation of multiple data sets in order to arrive at a complex and nuanced understanding of breast cancer stories. I discuss the findings of my study in relation to both the broader literature and Frank’s (1995) narrative types, after which I offer directions for future research investigating breast cancer stories.

AFRIKAANSE OPSOMMING: Borskanker is ‘n enorme wêreldwye gesondheidslas. Alhoewel vooruitgang in die bespeuring en behandeling van borskanker oorlewingskoerse verbeter, sal ‘n aansienlike aantal vroue met borskanker ‘n herhaling van die siekte ervaar. Met groter navorsingsklem toegespits op die begrip van oorlewendes se ervaring van borskanker, bestaan daar beperkte kennis betreffende die herhaaldelike voorkoms van die siekte. Hierdie verhandeling verken die borskankerverhale van 12 Suid-Afrikaanse vroue met herhalende voorkoms van die siekte. Die studie bied ‘n oorsig en bespreking van deelnemeres se verhale ingewin uit multimodale verhaaldata (d.w.s. verhaalonderhoude, dagboeke en liggaamskaarte), wat ook die betekenis wat daaraan heg, insluit. Ek het al die narratiewe data tematies ontleed om die inhoud van deelnemers se verhale te verstaan. Vervolgens en deur die interpretatiewe raamwerk van Frank (1995) se narratiewe vertellingstipes (restitusie, chaos en soeke) aan te wend, het ek ‘n narratiewe ontleding onderneem om die struktuur van die verhale te ondersoek. Daarna het ek die tematiese en narratiewe ontledings gesintetiseer om reaksiepatrone van die verteltipes te identifiseer. Drie verteltipes het na vore gekom: vier deelnemers het hulle ervaring van terugkeer van die siekte as tydelik beskou, en wat spoedig beeïndig sou word indien hulle die nodige behandeling sou volg. Hierdie verhale het die intrige van die restitusie verteltipe gevolg en die liniêre orde wat karakteriserend is daarvan, gehandhaaf. Dit wou voorkom of die terugkerende kanker vir ‘n ander deelnemer baie angs veroorsaak het, gemanifesteer in ‘n gefragmenteerde weergawe; sonder enige narratiewe orde. Ek het haar vehaal as chaos vertelling vertolk. Die oorblywende sewe deelnemers het hulle terugkerende kanker beskryf as ‘n geleentheid tot selfontdekking, persoonlike groei en om ander vroue met borskanker te help. Hierdie verhale het die soeke verteltipe gevolg, alhoewel hulle soms ook elemente van die ander verteltipes bevat het. Alhoewel die bevindinge met Frank (1995) se verteltipes ooreenstem, wou dit voorkom asof terugkeerverhale meer kompleks as konvensionele, episodiese, siekteverhale is. In die geheel beskou, het ek die betekenis wat die deelnemers aan die terugkering toeskryf, geïnterpreteer as synde gevorm deur die manier waarop hulle op hulle siekte reageer (siekte-evaluering en hantering) en gekoppel aan hulle identiteite in verhouding tot die siekte. In sommige verhale het deelnemers se siekte-evaluerings en hanteringstrategieë die van Frank (1995) se oorspronklike formulering oorskrei en in sommige is identiteitsveranderinge oënskynlik oorgedra in veranderinge in verteltipes. Ek besin oor die waarde van ’n multimodale metodologie en die triangulering van verskeie datastelle om ‘n komplekse en genuanseerde begrip van borskankerverhale te ontwikkel. Ek bespreek die bevindinge van my studie in verhouding to beide die breër literatuur en Frank (1995) se verteltipes, waarna ek riglyne bied vir toekomstige navorsing wat daarop gerig is om borskankerverhale te ondersoek.