Irish Cancer Society announces funding to improve psychosocial knowledge and support for those with a high hereditary cancer risk

New survey aims to explore experience of people living with genetic cancer risk

The Irish Cancer Society has announced a €300,000 investment focusing on hereditary cancer risk and wellbeing. 

This project, to understand psychosocial needs and pilot a service to patients with an increased hereditary cancer risk, is led by St Vincent’s University Hospital (SVUH) Psychology Department in collaboration with UCD School of Psychology. It is made possible by funding from the Irish Cancer Society. 

The project team will explore the complex relationship between the risk of hereditary cancer and psychosocial wellbeing, recognising that living with an increased risk of cancer due to hereditary factors can be a profound emotional and psychological experience, impacting people’s emotional wellbeing and their quality of life.

The current study within the project is a national needs assessment survey led by PhD researcher Elaine Lowry in UCD and supported by funding from the Irish Research Council. This survey aims to hear directly from people living with an increased hereditary cancer risk. 

People in this group from all over Ireland are invited to participate in the study by completing an online survey. The survey includes a variety of questionnaires aimed at understanding their psychosocial needs and preferred support options. 

Corrinne Hasson, Director of Services at the Irish Cancer Society said: “We are delighted to support this incredibly important project.  We know that there are significant challenges and service gaps in hereditary cancer care.  Our hope is that the information provided by this study will help to improve the wellbeing and quality of life of those with increased hereditary cancer risk in the future by informing tailored psychosocial interventions and public health strategies.

This project, and most especially the national needs assessment, will provide the group with the necessary information to ensure that the voice of people in Ireland living with increased hereditary cancer risk is front and centre of any future service planning.”

Anna Morris, PPI Representative on the project said: "I wasn't shocked by the news that I tested positive for the BRCA2 alteration. If anything, I expected it. I thought I was prepared. I did not expect to feel broken by this knowledge but that's exactly how I felt. Utterly broken, like I was intrinsically wrong. And there was nowhere to turn." 

"First class treatment is available for the physical side of things - screening, preventative surgeries, and expert advice are all available. It’s high time the psycho-social burden, which has such an impact on quality of life, was recognised and tailored support programmes developed to help those affected. I am delighted to be supporting this study and look forward to seeing how its findings become part of a larger model of cancer care for patients across the country."

Dr Louise O’Driscoll, Principal Clinical Psychologist in Psycho-oncology and Principal Investigator on the project said: “Having worked in psycho-oncology for over 15 years, I have seen the life altering impact that finding out about an increased hereditary cancer risk can have. While there are huge potential benefits to identifying an inherited cancer predisposition, ultimately how we navigate and live with this risk is very much a psychological and social process. That is why I am so pleased to be leading this project along with my colleagues in UCD. 

“By engaging directly with people living with increased hereditary cancer risk and asking them about their psychosocial needs, and the supports they believe would be of help, we can ensure that the patient voice is front and centre in any future service planning.”

Notes to Editors:

Content Warning // childhood trauma

Some topics covered in this assessment may be distressing. It touches on subjects such as childhood trauma. If you need to speak with someone, please contact the Irish Cancer Society Support Line on 1800 200 700 or on supportline@irishcancer.ie

To take part in national needs assessment, please visit: https://ucdpsychology.qualtrics.com/jfe/form/SV_6RRoM0gaZ2Fcxro

To take part you must:

● Live in Ireland
●  Understand English well
● Have a high risk of cancer identified through genetic screening or family history
●  Not currently have a cancer diagnosis (you may still take part if you previously had cancer but are now cancer-free)

For further information on the study, please visit: https://ucdpathlab.com/hereditary-cancer-risk-wellbeing/

Confidentiality and Ethical Considerations
Participant privacy and confidentiality are of utmost importance in this study. The research team is committed to making sure that the information we collect stays private and secure. Data collected through online psychological questionnaires will be anonymised. All data collected will be treated with the highest level of confidentiality and used solely for the purpose of not-for-profit health research.

If you have any questions or would like more information about this study, please contact:

Ms Elaine Lowry,
PhD Candidate,
UCD School of Psychology

Email: elaine.lowry@ucdconnect.ie

This study has obtained ethical approval from the UCD Research Ethics Committee.