TYA

Our PCOR TYA team:

Prof Dan Stark

Dr Oana Lindner

Miss Rizwana Uddin

Current projects

ESRC social reintegration of TYA with cancer

Social integration after a cancer diagnosis in teenagers and young adults

This is an ongoing project, funded by the Economic and Social Research Council. It began in September 2019 and will end in September 2022.

The aim is to explore how Social integration, namely the work, education, social relationships and overall wellbeing of young people is influenced by a cancer diagnosis. The knowledge produced will help us determine what enables or disables young peoples’ trajectories of social integration after their diagnosis, to design ways to support them to achieve the same or better outcomes as they would have had without the diagnosis.

Why are we running this study?

A growing proportion of the population living with and beyond cancer are working-age cancer survivors, and 300,000 are estimated to be teenagers and young adults (TYAs) aged 16 to 39. With advances in medical treatments, up to 90% of TYAs now live beyond their treatment.

A cancer diagnosis will disrupt anybody’s life, their personal biography, resulting in a significant impact on their physical, emotional, social, and economic well-being. This will be even more challenging for young people, diagnosed at a vulnerable time of multiple transitions and emerging adulthood (e.g. completing education, leaving home, becoming financially independent, forging relationships/marrying, having children).

What are our main questions?

We are asking:

How does social integration vary from diagnosis onward for people aged 16 to 39?

And what factors are at play in explaining the variations in social integration outcomes over time?

What factors are the most important to be tackled in future interventions?

What do we mean by ‘Social Integration’?

Within this project Social Integration will be observed through outcomes related to:

  • Work (type and quality of employment)
  • Education/Training (type and quality)
  • Social networks (quantity and quality of social support)
  • Subjective wellbeing (how people generally feel about aspects of their life including family, leisure time etc).

We want to see how each of these vary through time and what other factors contribute together or separately to enable or disable desired outcome. We will be looking at factors related to demographics, physical health, and psycho-social determinants of wellbeing.

How will we reach our aim?

We combine knowledge and methods from multiple disciplines, across medical and psycho-social oncology, nursing, sociology, health economics, and developmental psychology.

We are running 3 interconnected studies within this project, to answer our questions. Two of these studies rely on secondary data, namely, data that has already been collected.

One of these studies involves a new data collection using a Survey, administered twice, and an Interview.

Across these 3 studies we will collect and analyse information on several factors that may influence peoples’ life trajectories over time:

  • Socio-demographic factors (e.g. age, gender, geographical area, marital status, etc.)
  • Clinical factors (e.g. diagnosis and treatment type, time since diagnosis and treatment, physical health)
  • Psycho-social factors (e.g. social support, self-efficacy, illness perceptions, etc.)
  • Patient-reported outcomes (e.g. health-related quality of life, ongoing symptoms)
  • Other factors, potentially unaccounted for in the existing literature, will emerge from our Interviews.

Who is involved in this project?

This project is a collaboration between University of Leeds and University College London Hospitals NHS Trust, with the support of Teenage Cancer Trust. Please read the information below to learn more about our team.

In Leeds:

Principal Investigator:

Prof Dan Stark

https://pcor.org.uk/staff/daniel-stark/

https://medicinehealth.leeds.ac.uk/medicine/staff/788/dr-dan-stark],

http://www.brightlightstudy.com/about/dan-stark/]

Co-Investigators:

Dr Angharad Beckett

https://essl.leeds.ac.uk/sociology/staff/6/dr-angharad-beckett]

Dr. Adam Martin

https://pcor.org.uk/staff/oana-lindner/

Collaborators:

Mrs. Sue Morgan, MBE

https://www.teenagecancertrust.org/get-help/how-we-can-help/nurses/sue-morgan-mbe-nurse-consultant]

Study co-ordinator/Research Fellow:

Dr. Oana Lindner

https://medicinehealth.leeds.ac.uk/medicine/staff/2380/dr-oana-lindner]

https://pcor.org.uk/staff/oana-lindner/

Data Manager:

Miss Rizwana Uddin

https://pcor.org.uk/rizwana-uddin/

In London:

Co-Investigator:

Dr. Rachel Taylor

http://www.brightlightstudy.com/about/faith-gibson/

Research Facilitator:

Mr. Luke Hughes

Luke is our research facilitator based in London. His work involves recruiting patients to take part in our research, delivering the questionnaires and interviews across different time points and helping to run our Patient Public Involvement groups in London.

Before joining the team; Luke worked with the Teenage Cancer Trust as a Youth Support Coordinator. There he worked on an inpatient ward for young people aged 13-19 with a diagnosis of cancer, with a particular emphasis on mental health support. He has worked previously in disability support services, mental health support services, child sexual abuse services and the occasional bakery. He holds a BA in Psychology, a diploma in Counselling studies and an MSc in Abnormal and Clinical Psychology.

His previous areas of research have focused on the relationship between sexuality and body dissatisfaction among male university students, testing whether implicit measures such as the Implicit Association Test are powerful enough to detect nuanced differences in levels of sexual attraction amongst a homogeneous sample, the relationships between masculine and feminine phenotypes in gay men’s relationship to their sexual identities and the perceived influence of masculine and feminine qualities on their partner preferences. Outside of work he performs at stand-up comedy nights around London and is known for his occasional appearances as Spiderman for children’s wards.

Collaborators:

Mrs. Louise Soanes

https://www.teenagecancertrust.org/about-us/news/dr-louise-soanes-appointed-director-services

What is the length of this project?

Three years. The project started in September 2019 and will continue until September 2022.

What is our end goal?

Our ambition is that TYAs should have the same or better opportunities and socio-economic outcomes as their peers or as they would have expected if they were not diagnosed with cancer. 

To develop the support to achieve this, we require the evidence this project will deliver. Within 3 years, the 3 strands of our project will come together to offer a comprehensive description of the ‘biographical disruption’ and inequality of opportunity and outcomes brought about by a cancer diagnosis in the lives of TYAs.

Our findings will be summarised in a Multidimensional Stratification Model of Social Integration Outcomes, which will be relevant to health, psychological, and social care policies addressing patients’ future socio-economic outcomes.

I have the experience of a cancer diagnosis, may I help?

Yes, please. You can do so through our Young Advisory Group.

Given the nature and topic of the project, we welcome any input from anyone aged 16-39 from Leeds, London, or beyond. Your views, knowledge, opinions can truly shape how we achieve the aims of this project!

If you think this project interests you, please do not hesitate to come in touch! You do not need to know anything about research and you do not need any other experience or expertise other than your own experience with a cancer diagnosis.

We have developed a Young Advisory Group for our TYA projects, so that anyone who would like to give us some feedback, comments on the project and its outputs, can do so and can become an active collaborator on the project, should they wish.If you’d like to get involved with other projects we run, you will also be able to do this, if you wish.

Please contact any of the Research Team members above if you’d like more information on the ways in which you can become involved in this and any other projects.

If you know anyone around you who may enjoy becoming involved with us, please feel free to share the link to this webpage so they can come in touch with us.

Alternatively, if you don’t want to be involved with our Young Advisory Group just yet, you can choose to participate in the study we are currently running. Here you can read more about how you can participate in the study.

Follow us on Twitter/Instagram @YoungCancerLife for updates, news, and discussions on this project.

Resources

Here you can find any resources and outputs related to this project.

Participating in the study

Becoming involved with the Young Advisory Group

Publications

Presentations