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Region Hovedstaden - en del af Københavns Universitetshospital
Udgivet

En god kræft? Antropologiske perspektiver på livmoderkræft og accelererede patientforløb

Publikation: Bog/antologi/afhandling/rapportPh.d.-afhandling

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This PhD study concerns the experiences and understandings of endometrial cancer and treatment among a group of Danish women diagnosed with the disease.

Endometrial cancer is the fifth most prevalent cancer among women and the most common gynaecological cancer. Due to generally poor cancer survival rates in Denmark, standardized accelerated cancer patient pathways were implemented in 2007 with the aim of ensuring acute cancer treatment and improving survival. Previous studies have indicated a high satisfaction among patients with the accelerated pathways and documented reduced waiting times, while recent studies also suggest that overall cancer survival has improved. Endometrial cancer, however, had a high overall 5-year-survival rate of about 85% already before the implementation of the accelerated pathways and the cancer is biomedically categorized as a ‘good’ and slow-growing type of cancer. This points to the fact that it is challenging to standardize treatment for more than 200 different cancerous disease, where the pace in some nonaggressive cases may seem less important in a biomedical perspective. Further, it raises a number of significant considerations regarding the impact of favourable prognoses to women’s experiences in the context of accelerated and acute cancer treatment. These considerations, however, are difficult to address, as there is still limited knowledge of the experiences of women with endometrial cancer in general, as well as patients’ perspectives on cancer patient pathways in particular.

The objective of this PhD study is to provide insights into the experiences, needs, expectations, and challenges associated with a diagnosis of endometrial cancer, treatment hereof, and the return to everyday life after curative surgery. More specifically, the study focuses on: 1) the women's experiences, perceptions, and understandings of endometrial cancer and cancer in general, including how they construct their knowledge about this; 2) how and to what extent these factors affect women’s disease narratives, actions, and expectations of life with and after endometrial cancer; and 3) the women’s experiences and management of an accelerated, standardized pathway with short waiting times as well as short hospitalization.

METHODS
The PhD study has a longitudinal design and is based on one year of ethnographic fieldwork during the period September 2013–October 2014. Fieldwork included participant observation at two gynaecological hospital departments as well as a number of ethnographic interviews with 18 women diagnosed with endometrial cancer. The women were recruited at one of the two departments at their first clinical encounter and were interviewed 2-4 times. As far as possible, interviews were carried out a few days before the woman's surgery, a few weeks after surgery, and in relation to the women's follow-up examination 4-6 months after surgery. The interviews followed a loosely structured question guide and typically took place at the woman’s home. Participant observation took place in the two departments in relation to all endometrial cancer related activities and procedures such as gynaecological examinations, consultations regarding the cancer diagnosis and treatment, hospitalization, surgery, hospital discharge, and follow-up examinations. The aim was to observe all consultations and activities at the hospital of the participating women.

RESULTS
First of all, the study illustrates how the women’s understanding and knowledge of endometrial cancer is shaped over time by particularly two dominant representations, namely a public discourse of cancer in general as acute and likely to be fatal, and a biomedical rhetoric at the hospital of endometrial cancer as ‘good’ due to favourable survival prognoses. Although the women during their trajectory internalize this latter understanding of endometrial cancer as ‘good’, they maintain the idea of a close connection between cancer and death and thus intertwine various and contradictory disease understandings.

Secondly, the study shows that a sense of having been lucky was embedded in the women's illness stories based on the expectation that endometrial cancer patients are less affected, both psychologically and physically, by the cancer diagnosis and treatment and thus able to return to everyday life easier and faster than others cancer patients. Consequently, some women found it difficult to contact healthcare professionals regarding adverse side effects based on the perception that they were less eligible for support than other cancer patients or themselves responsible for causing the side effects, for example by having returned to work too soon.

Thirdly, the study elucidates the temporal dimensions of the women’s experiences of the accelerated cancer patient pathway, whereby it is clarified that the rapid pace of the pathway on the one hand helps the women suspend the thoughts of death associated with waiting while at the same time leads to a sense of temporal confusion and concern whether cancer has actually spread. Thus, on one side the accelerated process gives rise to great gratitude and relief and, on the other hand, causes anxiety and a need to control the experience of time so it is perceived as passing by slower.

CONCLUSIONS AND IMPLICATIONS
Across results, it appears that the women's overall experiences are characterized by a high degree of ambivalence and ambiguity related to both the endometrial cancer diagnosis and the accelerated cancer patient pathway; thereby the study questions the biomedically anchored assumption that endometrial cancer is a relatively unproblematic type of cancer due to its good survival forecasts.

Placed on the one hand in a position between political, cultural, and public discourses about cancer as acute and fatal (reinforced by the implementation of cancer pathways) and on the other hand a biomedical framing of endometrial cancer as slow growing and ‘good’, the women try to balance on an interface between two poles that are constantly related to each other and influence the women's illness perceptions and experiences. The poles are not each other’s mutual exclusions, but rather express an inherent complementarity and complexity in the women’s ways of relating to and handling endometrial cancer and the accelerated pathway, which are both fundamentally characterized by contradictory feelings and experiences. Overall, the study emphasizes that social relations are essential to the women's experiences, as family and close networks, health professionals, politics, media, and public cancer stories frame their possibilities for action and understanding.

The PhD study emphasizes that endometrial cancer is a complex social phenomenon, pointing to the necessity of a situational and individual approach in clinical practice that takes into consideration the complexities and ambiguities of the experiences of having endometrial cancer. In particular, it is recommended to pay attention to the women’s multiple and divergent understandings of cancer, to create space for various types of stories about endometrial cancer, including those that differ from the widespread framing of endometrial cancer as a ‘good' cancer, and to be aware of time and temporality as central aspects of understanding the women’s experiences and recognize that standardized and accelerated treatment pathways are not always synchronized with the individual, subjective feeling of time. Follow-up consultations to process the cancer diagnosis and create a frame of responsiveness are proposed as a solution that can contribute to a more optimal patient pathway.
OriginalsprogDansk
ForlagSyddansk Universitet, Det Sundhedsvidenskabelige Fakultet
Antal sider318
StatusUdgivet - aug. 2018
Eksternt udgivetJa

ID: 61383098