Impact of cancer diagnosis on social reintegration

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 growing population. 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). Our project aims to understand how the social integration of TYAs is impacted by a cancer diagnosis. We will describe their social reintegration (SR) through outcomes relating to: employment (income, type of employment); educational attainment (level of education and satisfaction); social development (quantity and quality of social support, connections, and participation); and subjective well-being (how people feel about their life, including satisfaction with key life domains such as health, family, income, social relationships, leisure time, work, and sex life). We want to understand which factors contribute (together or independently) to enable or disable TYAs' SR trajectories following treatment. This will be facilitated by linking knowledge and methods from multiple fields such as medical and psychosocial oncology, sociology, and developmental psychology. We will explore how social science perspectives and methodologies can inform the development of health and social care support that minimises the impact of cancer on TYAs' lives.

Through 3 interconnected strands including a qualitative sub-study we will explore, in turn, several sets of factors that may influence TYAs' SR trajectories: socio-demographic factors (e.g. age, gender, geographical area); clinical factors (e.g. cancer type, time since diagnosis); psychosocial factors (e.g. extraversion, self-efficacy); patient-reported outcomes ('PROs', e.g. ongoing symptoms, health-related quality of life). Other factors, potentially unaccounted in existing literature, may emerge from our qualitative patient interviews. This will enable the development of stratified, evidence-based knowledge to improve the educational, employment, and social development opportunities of TYA cancer patients. To evaluate the influence of socio-demographic and clinical factors we will analyse and compare 2 existing databases. These databases include information on our planned outcomes in the general population and a nation-wide cancer group. To evaluate the influence of psychosocial factors and patient-reported outcomes we will run a longitudinal study with 2 patient groups (one during and one after treatment) across 2 centres. To explore wider potential factors we will run interviews with TYAs in the socio-demographic and clinical strata defined by the secondary data analyses.

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. This will be summarised in the Multidimensional Stratification Model of Social Reintegration Outcomes, which will be relevant to many health and social care policies addressing patients' future socio-economic outcomes.

Through this project we will build a rounded and detailed picture of social reintegration outcomes in teenagers and young adults (TYAs) diagnosed with cancer. The 3 strands of our project, described through 3 interconnected studies will come together to offer a complete view of the extent and mechanisms of the 'biographical disruption' and liminality brought about by a cancer diagnosis in the lives of TYAs. The project will produce: (1) knowledge regarding specific socio-demographic factors shaping TYAs' social reintegration over time, compared to matched peers without cancer; (2) knowledge regarding which clinical factors further contribute to variations in social reintegration; (3) knowledge on which patient-reported and psychosocial factors, over time, influence TYAs' social reintegration, beyond the socio-demographic and clinical risks. This knowledge, co-produced with patients' support, will be summarised within our Multidimensional Stratification Model. Our planned impact activities will result in (4) the necessary framework to implement this Model in existing NHS clinical, psychological, and social cancer care. Through this project we aim to provide the evidence required to support equitable optimal social reintegration following a severe but largely curable illness in a growing population.

Following the principle of co-production, we plan substantial engagement and dissemination events throughout the lifespan of this project. They will be directed at the general public, patients, clinical, managerial, and academic professionals, and third sector stakeholders. Beyond the academic presentation and publications, our activities will encompass multiple meetings, discussions, and workshops with patients, public, and NHS healthcare staff. These will focus on the planned content of questionnaire evaluations and interviews and practical strategies that will facilitate patients' support. Two methodological workshops will lead to additional impact by sharing lessons learned and guidelines for future implementations within other healthcare specialties and networks.

We will (1) undertake two workshops, training professional colleagues on the National Cancer Research Institute TYA Clinical Studies Group on our methods and findings; (2) prepare annual newsletters which will inform all relevant stakeholders in our UK, European, and worldwide Adolescent and Young Adult research networks; (3) take an active role in workshops and dissemination opportunities in patient, public, NHS, and academic conferences and meetings; (4) create the TYA Research Advisory Group to train young people in this field, providing the patient-expert input and collaborations for further projects; (5) create an online community to share experiences and engage patients and interested public in active dialogue; (6) impact upon the NHS England Clinical Reference Group and the relevant third sector (including Teenage Cancer Trust and CLIC-Sargent); (7) undertake focused media activity to impact upon the public through the faculty head of communications and media relations officers; (8) undertake dissemination with youth theatre and arts groups (as exemplified by BRIGHTLIGHT) to impact upon wider society; (9) disseminate our work in real time via our website and other social media.

We will evaluate the impact of our project in an on-going manner, feeding this evaluation back into the development of our impact strategy. An Impact Evaluation Plan will be developed to track the outcomes of this project according to criteria of 'Relevance, Effectiveness, Efficiency, and Sustainability'. Various methods will be employed - use of feedback surveys with workshop participants, tracking their 'response' and subsequent actions taken (6 months later); capturing audience responses to theatre/arts events (e.g. use of Vox Pop-style qualitative methods); tracking social media engagement (e.g. twitter-analytics) to determine level of engagement and global reach.