Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Do young people who survive cancer, identify as ‘survivors’? Trauma, agency, and the centrality of cancer-related identities among adolescents and young adults following cancer. (126023)

Ursula M Sansom-Daly 1 2 3 , Sarah J Ellis 1 2 , Kate Hetherington 1 2 , Brittany C McGill 1 2 , Holly E Evans 1 2 , Clarissa E Schilstra 1 2 , Mark W Donoghoe 4 , Richard J Cohn 1 2 , Antoinette Anazodo 2 5 , Claire E Wakefield 1 6
  1. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  2. School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
  3. Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospitals, Randwick, NSW, Australia
  4. Kirby Institute, The University of New South Wales (UNSW) Sydney, Sydney, NSW, Australia
  5. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  6. Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University and Stanford Medicine Children's Health, Palo Alto, California, USA

Purpose: Cancer significantly impacts adolescents’ and young adults’ (AYAs’) identity at a critical developmental stage.1 Outside oncology, how people integrate traumatic events into their sense of self predicts psychological outcomes. Yet, little is known about whether AYAs adopt a ‘cancer survivor’ identity, and whether a ‘survivor-centric’ identity predicts psychological outcomes into survivorship.1,2

Objective: To explore prevalence and predictors of AYAs’ cancer-related identity preferences in survivorship, and examine associations with their psychological adjustment.

Sample and Setting: Two studies explored AYAs’ cancer-related identity preferences. Study 1, a cross-sectional questionnaire-design (N=139), compared AYAs aged 15-39 years in long-term cancer survivorship, with community controls (who appraised non-cancer illness experiences). Study 2 observed AYAs’ (N=40; aged 15-26 years) cancer-identity preferences longitudinally over a 12-month period post-treatment, within the Recapture Life intervention randomised-trial.6,7

Method: Across Studies 1-2, we explored cancer-related identity using a 10-point sliding-scale, and then with seven categorical label-options (e.g., ‘cancer survivor’, ‘victim of cancer’), alongside psychological measures (Depression and Anxiety Scale-Short;3 Centrality of Events;4 Impact of Cancer5).

Results: Study 1: AYAs with a cancer history endorsed more ‘survivor-centric’ identity than controls (p<.001). Greater perceived cancer-centrality, and lower depression, predicted greater survivor-identity (p=.001). Study 2: At baseline, AYAs most frequently preferred the term ‘cancer survivor’ (36%), followed by ‘had cancer once, but is fine now’ (21%). A strong positive linear relationship indicated that more survivor-centric identity was associated with more positive perceived impact of cancer, over time (t(1,84)=2.6615;p=0.009).

Conclusion and clinical implications: AYAs’ self-identification as ‘survivor’ appears linked with better wellbeing into survivorship. Yet, when given choices, AYAs identify with diverse cancer-identities. How AYAs reframe and reclaim their identities following cancer may be a key mechanism driving their psychological responses to traumas experienced. Clinicians, researchers, and communities can use language to empower AYAs, as the authors of their own survivorship experiences and identities.

  1. Sansom-Daly UM, Wakefield CE, Robertson EG, McGill BC, Wilson HL, Bryant RA. Adolescent and young adult cancer survivors' memory and future thinking processes place them at risk for poor mental health. Psychooncology. 2018;27(12):2709-16.
  2. Cheung SY, Delfabbro P. Are you a cancer survivor? A review on cancer identity. J Cancer Surviv 10:759–771, 2016
  3. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety Stress Scales (ed 2nd). Sydney, Psychology Foundation, 1995
  4. Berntsen D, Rubin DC. The centrality of event scale: A measure of integrating a trauma into one's identity and its relation to post-traumatic stress disorder symptoms. Behav Res Ther 44:219-231, 2006
  5. Zebrack BJ, Donohue JE, Gurney JG, et al. Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res 19:207-218, 2010
  6. Sansom-Daly UM, Wakefield C, Bryant R, Butow P, Sawyer S, Patterson P, et al. Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: A multicenter randomised controlled trial of Recapture Life-AYA. BMC Cancer. 2012;12(1):339.
  7. Sansom-Daly UM, Wakefield CE, Ellis SJ, McGill BC, Donoghoe MW, Butow P, et al. Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial. Cancers (Basel). 2021;13(10):2460.