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How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study.

ABSTRACT: Genetic testing decision-making for cancer predisposition is inherently complex. Understanding the mechanisms and influencing factors of the decision-making process is essential for genetic counselling and has not yet been investigated in Switzerland. This study's aim is thus to provide a theory about the individual's decision-making process regarding genetic testing for cancer predispositions in order to provide medical geneticists and genetic counsellors with insights into the needs and expectations of counsellees. We interviewed at-risk individuals who underwent genetic counselling in a clinical setting in Switzerland, using a grounded theory approach. Based on the interview data, we propose that a control-fate continuum, which is part of the individuals' life philosophy, importantly influences the decision-making process. Those in need for control decide differently compared with those leaving their future to fate. Several psychosocial factors influence the position on the control-fate continuum: "looking for certainty"; "anticipating consequences"; "being socially influenced"; "simplifying risks"; and "deciding intuitively vs reflectively". The control-fate continuum theory gives insights into the possible reasons behind decision-making regarding genetic testing for cancer predispositions. It includes both acceptors and decliners of genetic testing. Our theory helps healthcare professionals offering genetic counselling to anticipate problems within at-risk families and adapting their services to people's needs.

SUBMITTER: Zimmermann BM

PROVIDER: S-EPMC7381626 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:IntroductionThe participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research.MethodsWe used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels.ResultsThe GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research.ConclusionsThe key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social environments and research support.

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How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study.

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