Why? PSYLIVED is a qualitative study that aims to understand the psychological experience of individuals living with inherited colorectal cancer. It addresses the question of how individuals cope emotionally and adapt to the unique challenges they face. This research sheds light on the emotional journey of those with inherited colorectal cancer, potentially leading to improved support services, interventions, and care practices tailored to their needs. The study seeks to enhance the well-being of patients undergoing genetic testing and contribute to better services and support practices.
What? PSYLIVED is a qualitative study that will employ reflexive Thematic Analysis methodology to explore the emotional responses and experiences of participants over time.
Who? The investigators are interested in interviewing between 30 to 66 individuals who have first-hand experience of being at risk or having an inherited colorectal cancer syndrome.
Where? While the study is conducted by the St Mark's Centre for Familial Intestinal Cancer, this study is open to individuals in the UK. Interviews will primarily be conducted via telephone or Microsoft Teams to facilitate accessibility. However, participants residing near London who prefer face-to-face interviews will be offered this option.
How? Each participant will take part in a one-hour audio-recorded interview where they will be asked to talk about their experiences. The interview will be recorded, so it can be transcribed word by word. During the transcription, the interview will be anonymised to ensure confidentiality. The responses will then be compared and analysed to create a result summary, along with interviews from other individuals with similar experiences. The study is set to commence in June 2024, with recruitment open for approximately two years.
Adults aged 18 years or older, residing in the UK.
Diagnosed with inherited colorectal cancer or likely to have inherited colorectal cancer and have been offered genetic testing for this reason.
Possess the capacity to provide informed consent.
Able to communicate in English.
Under 18 years old.
Unable to communicate in English.
Experience significant learning or communication difficulties.
Reside outside of the UK.
Adults over 18 with an inherited predisposition or likelihood of inheriting colorectal cancer, offered genetic testing (with and without cancer history) This study population comprises individuals affected by the major inherited colorectal cancer syndromes, specifically focusing on Lynch syndrome and Polyposis syndromes.
Case-only
Cross-sectional
Not listed
In-depth understanding of 'lived experiences' of people with or at risk of an inherited colorectal cancer Syndrome
Detailed insights into the emotional responses, cognitive processes, and perceptions of individuals throughout their genetic diagnosis journey, providing a rich understanding of their lived experiences. This is a qualitative study using semi-structured interviews. Data from the qualitative semi-structured interviews will be used to address this outcome. Please note that no score or scale will be used in this research.
Insight into psychological adaptation
understanding of how individuals psychologically adapt to the genetic diagnosis over time, identifying patterns of coping, emotional adjustments, and strategies employed to manage the psychological impact. This is a qualitative study using semi-structured interviews. Data from the qualitative semi-structured interviews will be used to address this outcome. Please note that no score or scale will be used in this research.
Contribution to patient wellbeing
Knowledge that contributes to improved patient care, by identifying psychological stressors, adaptive approaches, and potential areas for intervention, ultimately improving the overall well-being of individuals and families affected by inherited colorectal cancer. This is a qualitative study using semi-structured interviews. Data from the qualitative semi-structured interviews will be used to address this outcome. Please note that no score or scale will be used in this research.
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