An insight into the work of PhD student, Diana Cooke

In this month’s blog we sit down with Diana Cooke, a PhD student at Trinity College Dublin who is working on supporting those with rare conditions including BHD. Diana’s research is in the field of health psychology and here she explains how it can be used to understand experiences of living with rare conditions.

Tell us a bit about yourself, and your research career so far?

My name is Diana Cooke, and I’m originally from Donegal, Ireland. My journey into health psychology began with a simple yet powerful question: how can we help people cope better with life’s challenges? This curiosity led me to study psychology at the University of Galway, where I found my passion for health psychology and eventually completed a master’s degree in this area.

Currently, I’m an AllCan PhD candidate at Trinity College Dublin, working under the guidance of Dr. Emer Guinan (TCD), Prof. Juliette Hussey (TCD), and Dr. Olinda Santin (QUB). My research focuses on Barrett’s Oesophagus, a condition that can lead to cancer. I'm working to create personalised lifestyle strategies that can help improve outcomes for patients. Ultimately, my work is about making a meaningful difference in people's lives by translating psychological research into practical, evidence-based solutions for managing chronic and rare health conditions.

What is health psychology and what does it have to do with rare conditions such as BHD?

Health psychology is all about understanding how psychological, social, and behavioural factors affect our health and well-being. It looks at how we cope with illness, how we make health decisions, and how our mental and emotional well-being can influence the way we manage conditions, whether that’s dealing with stress, following a treatment plan, or adopting healthy habits and what can be done to help us live healthier, happier lives.

The goal of health psychology is to tackle these challenges by creating tools and strategies that promote healthy habits, improve mental health, and enhance the quality of life for both patients and their families. It also focuses on supporting people in the long-term management of their conditions, helping them adapt to ongoing challenges and maintain a good quality of life over time.

Can you explain a bit about your research projects that included BHD? What did you find, was there anything in that was of particular interest?

When it comes to rare conditions like BHD health psychology becomes even more important. Rare conditions often come with unique difficulties—such as a lack of information, limited treatment options, and feelings of isolation. Living with a rare condition can bring a lot of uncertainty, both about the condition itself and its impact on daily life. Health psychology helps by understanding these challenges and works to provide support, whether that’s through stress management, building stronger healthcare communication, or connecting people with others in similar situations. It’s about empowering individuals with the tools they need to take charge of their health and well-being.

So far, my research has focused broadly on hereditary cancer conditions (HCC). These are altered genes that are passed along the family tree that increase the risk of developing cancer such as BHD. My first project was a studentship with the Irish Cancer. This project focused on the importance of social support, particularly talking to family and friends, about their condition and their on-going management/treatments on their quality of life. This study collected information from nine different HCCs and found that those who experienced high levels of anxiety and depression had less social support and a lower quality of life. On the other hand, individuals who felt less anxious and depressed were more likely to have strong social support networks and higher quality of life.

This project showed just how important family, friends, and a supportive community are in helping people manage the emotional and practical challenges of living with a long-term condition. This project helped to open the door to thinking about ways to better support individuals with HCCs through tailored interventions that strengthen social support networks and address mental health challenges.

My final year project for my undergraduate degree included nine HCCs, with BHD being the third biggest group involved. This project focused on patient-provider relationships and satisfaction of care impacted distress levels. This study found that overall, there was low levels of satisfaction and communication between patients and providers which predicted heightened levels of distress for patients. This study highlighted how central communication and trust are in the healthcare experience, especially for people with rare conditions like BHD.

For individuals with HCCs, the rarity of their condition can already make navigating the healthcare system a challenge, as many providers may not be familiar with their specific needs. When communication breaks down, it amplifies feelings of isolation, frustration, and anxiety.

The study highlighted a critical gap in care: the need for better communication and stronger relationships between patients and healthcare providers. It suggests that by improving these aspects of care, we can reduce patient distress and improve overall healthcare experiences.

My masters project focused on three HCCs: BHD, Lynch Syndrome, and BRCA 1/2 alterations. Through patient interviews, the research explored the complex and deeply personal factors influencing how people make decisions about their healthcare. This included choices around monitoring their health, undergoing treatments or surgeries, and managing genetic risks for themselves and their families. This project identified underlying factors that influences participants healthcare decisions, such as support from healthcare providers and quality of information received as well as the importance of social support.

The project was fascinating because it revealed not only the challenges patients face but also the strengths they draw on when navigating their healthcare journeys. It underscored the importance of improving the quality of provider-patient communication, offering more comprehensive education about rare and hereditary conditions, and fostering supportive environments for individuals facing life-changing decisions, reiterating our previous findings.

What do you hope to find in your PhD studies over the next few years?

Over the next few years, my PhD will focus on developing evidence-based strategies to support individuals with Barrett’s Oesophagus. The aim is to understand the presentation of lifestyle behaviours such, such as diet, physical activity, or taking medication and co-designing practical, realistic strategies to encourage healthier habits to target key unhealthy lifestyle patterns.  Through collaborative sessions with patients and healthcare providers, the project will develop practical, patient-centred strategies to manage lifestyle issues more effectively. This approach could ultimately lead to better strategies to manage lifestyle risk factors/health behaviours in this cohort, potentially improving quality of life and reducing cancer risk.

How will this contribute to supporting people living with BHD?

The insights could also have meaningful implications for individuals living with BHD. Both conditions share challenges related to managing long-term health risks and the need for tailored lifestyle interventions to improve quality of life. My project emphasises understanding how lifestyle factors influence health outcomes and developing patient-centred strategies in collaboration with patients and healthcare professionals.

While my PhD research is focused on Barrett’s Oesophagus, the lessons learned about effective health behaviour change, patient empowerment, and collaborative intervention design could contribute to better support systems for those living with rare conditions like BHD. At the end of the day, my goal is simple: to make a difference in the lives of people facing health challenges.

• Diana Cooke’s PhD is funded by AllCan https://allcan.ie/
• Follow Diana on social media: https://x.com/dianamcooke