Through the Rubicon

Presentation script · Tristi Brownett

Serious illness does not just change our bodies. It can change our relationships, our sense of who we are, and leave us feeling profoundly lonely. My PhD research explored this experience in people living with cancer.

My interest in this topic began during the COVID-19 pandemic lockdown. At the time, I had begun researching loneliness in the general population. When cancer treatments were being disrupted by the pandemic, I spoke with people living with cancer to understand how they were experiencing this uncertainty. What surprised me was that they did not describe loneliness as something caused only by the pandemic. They told me that loneliness was something that came with cancer. This led me to consider the issue. It was not simply, "how many people with cancer experience loneliness?" but instead how does loneliness develop and persist for people living with cancer, and what can this tell us about how we should respond?

To explore this, I first undertook two scoping reviews. These reviews allowed me to map how loneliness has been conceptualised within cancer contexts, and the interventions that have been used to address it. These reviews showed that loneliness was recognised as longstanding and an important issue, but also that we lack an explanation of the mechanisms through which it develops. The reviews also allowed me to theorise what might help people to manage their loneliness experience. Throughout my study I used a realist-informed qualitative lens.

Using my new understanding from the reviews, and interview data from 18 adults living with cancer in East Kent, I explored experiences of loneliness, the contexts that shaped it, and the ways people tried to manage it. What I found challenged a common assumption. Loneliness was not simply about being alone or a deficit in relationships. Whilst some participants chose solitude as a way of coping, reflecting or managing their experiences, the loneliness my interviewees described was something deeper: it was that cancer diagnosis and treatment contributed to a feeling of being fundamentally separated, from others, from the person they had been, or from the future they had imagined.

At the heart of this was meaning making. Living with cancer requires people to make sense of a changed life. Essentially, they were asking: Who am I now? What does my future look like? How do I relate to others when my experience has changed?

However, this meaning making does not happen in isolation. It is shaped by internal resources, ways of interpreting experiences, relationships, healthcare interactions, the language people hear (such as, you are a hero), access to support, and sometimes negatively influenced by wider social circumstances and ongoing concurrent life stresses.

I found that participants often sought information, but what they needed was not simply medical facts; they were looking for understanding. They wanted help interpreting their experience and often did this by seeking others who could relate to what they were going through.

The contribution of my PhD thesis and the CLIO study is threefold.

First, I provide a refined conceptualisation of cancer-related loneliness. I show that it is not simply a lack of social contact, but an experience of fundamental separation that can arise when cancer disrupts identity, relationships and a person's sense of future.

Second, I provide an explanatory framework showing how loneliness develops examining interactions between meaning making, internal processes, relationships and wider contexts.

Third, I have developed programme theories that can support future intervention development and evaluation. Rather than asking only, "What intervention works?", my research encourages us to ask, "For whom does it work, in what circumstances, and why?"

Ultimately, my research suggests that reducing loneliness among people living with cancer requires more than increasing social contact. It requires support that helps people make sense of a changed life, rebuild connection, and feel understood within their new reality. These findings can be translated into practice through personalised loneliness assessments within cancer care and by strengthening collaboration between healthcare, community and voluntary sector organisations. They can inform student and practitioner education engaging recognition of loneliness as an important part of the cancer journey, and my study provides a theoretical foundation for future research that develops and evaluates interventions success.

Remember cancer-related loneliness is not simply about being alone or lacking relationships; it is about feeling fundamentally separated from your own life, from others, and from the person you were before cancer. Meaning making is central to helping people with cancer-related loneliness.