Use this URL to cite or link to this record in EThOS: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.784479
Title: Moving within a landscape of knowledge : how BME women use context and time to construct meaning, knowledge and understanding of familial breast cancer syndromes
Author: MacHirori, Mavis
ISNI:       0000 0004 7970 0287
Awarding Body: King's College London
Current Institution: King's College London (University of London)
Date of Award: 2019
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Abstract:
In Western countries, the burden of cancer is rising and there is increasing focus in how geneticsbased knowledge can inform the screening and treatments offered to patients. Such focus is embedded in clinical genetics services offered to patients who might be worried about cancers in their families. Yet, despite the scientific knowledge generated and used to shape health services, not everyone uses that genetics knowledge in ways anticipated by scientists and clinicians. Of note, in oncology, people from ethnic minority groups are under-represented in those participating in clinical genetics services. They subsequently receive little benefit from genetics-based technological advances, leaving one to wonder why this is the case. In response to this, there have been various strategies to increase and encourage interaction with cancer genetic services by Black and ethnic minority (BME) populations through interventions such as changing access pathways to screening services and increasing scientific knowledge and teaching in cancer genetics. Of note is that across Western countries, a lack of scientific knowledge in BME groups is constantly given as one of the reasons affecting service use. Interventions to increase knowledge and increase use of genetics services have however, been met with mixed levels of success. This research therefore set out to explore whether people from BME groups understood genetics in the same way it was put out by clinicians and scientists, or whether there was a difference of knowledge, and in its interpretation, which shaped some views towards and interaction with clinical genetics services. Over the course of 10 months in 2016, I interviewed 15 women, including one relative, from diverse ethnic minority backgrounds, who had various concerns about possible genetic cancers. My results show that my participants constructed and held perspectives of the world which were based on diverse meanings of the concepts of ethnicity and family. These in turn framed their interpretation and understanding of cancers that may have had a genetic predisposition. Additionally, in constructing their viewpoints, my participants did not conform to a generic categorisation of ethnicity but used emergent personal meanings of ethnicity and culture to navigate the social world. Results also show that my participants underwent similar processes in constructing meanings of genetics to the general public, even when their baseline starting point differed. Thus, knowledge of genetics was not fixed or universal to a scientific view only. For my participants, genetics knowledge was made of multiple meanings of concepts and interactions in the world, which could be mapped as a landscape of knowledge through which genetic interpretations could be traced. Research and service provision should work to find ways of utilising people's alternative views to scientific knowledge and their knowledge landscapes, to try and influence behaviours, since science alone is not interpreted and used in the same way as scientists and clinicians may intend.
Supervisor: Patch, Christine Russell ; Metcalfe, Alison Mary Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID: uk.bl.ethos.784479  DOI: Not available
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