Cancer Changed My Life

Background:
Cancer is uncommon among young adults, comprising only 2 to 4% of all new cases globally each year, and this group remains relatively understudied. Only recently has there been an international awareness highlighting their unique survival challenges and unmet needs from diagnosis to survivorship. These challenges stem from their vulnerable life stage, where cancer imposes a significant burden, and their increased susceptibility to physical and psychosocial late-effects and morbidity compared to both younger and older cancer survivors. National and international studies have emphasized a substantial research gap across the entire cancer continuum concerning the specific psychosocial needs of Young Adult Cancer Survivors (YACS) and the necessary rehabilitation interventions to address these needs. This knowledge is crucial for ensuring adequate psychosocial follow-up and implementing interventions to enhance coping mechanisms and long-term psychosocial health.

Purpose:
The overarching objective of this study is to acquire enhanced knowledge and understanding of the experiences, psychosocial needs, and challenges faced by Young Adult Cancer Survivors (YACS) at various points along the cancer continuum—from diagnosis to rehabilitation.

Methods:
This mixed-method study utilized a concurrent research design to investigate the challenges and psychosocial needs of young adult cancer survivors across the cancer continuum, from diagnosis to rehabilitation. This postdoctoral study builds upon unpublished data from the PhD project titled "What now? – Rehabilitation of Young Adult Cancer Survivors," which involved the participation of 20 YACS in a comprehensive rehabilitation program. Qualitative and quantitative data were collected simultaneously at baseline (T1), the conclusion of the initial rehabilitation stay (T2), and during the first re-stay after three (T3) and six months (T4), with quantitative data obtained at the one-year follow-up (T5).

Time frame:
2016 - 2019

Project management:
PhD May Aa. Hauken led the project under the supervision of Professor Torill Larsen at Hemil, UiB. Several partners were included in the papers (see references).

Results: 
Several papers and a book chapter have been published based on the study's findings covering challenges faced by YACS along the cancer trajectory:

• Lie NK, Larsen TMB, Hauken MA. Coping with changes and uncertainty: A qualitative study of young adult cancer patients' challenges and coping strategies during treatment. Eur J Cancer Care (Engl). Jul 31 2017:e12743. https://pubmed.ncbi.nlm.nih.gov/28758705/
• Hauken MA, Larsen TMB, Holsen I. “Back on Track”: A Longitudinal Mixed Methods Study on the Rehabilitation of Young Adult Cancer Survivors. Journal of Mixed Methods Research. 2017;13(3):339-360. https://journals.sagepub.com/doi/10.1177/1558689817698553
• Hauken MA, Holge-Hazelton B, Larsen TMB. "I Got My Diagnosis on a Yellow Post-it Note": Young Adult Cancer Patients' Experiences of the Process of Being Diagnosed With Cancer. Cancer Nurs. Jul/Aug 2019;42(4):E1-E10. https://pubmed.ncbi.nlm.nih.gov/29863577/
• Hauken MA, Larsen TMB. Young adult cancer patients' experiences of private social network support during cancer treatment. J Clin Nurs. Aug 2019;28(15-16):2953-2965. https://pubmed.ncbi.nlm.nih.gov/31017320/
• Aase AS, Ingebretsen TK, Hauken MA. "There Should Have Been a More Holistic Approach"-A Qualitative Study of Young Adult Cancer Survivors' Experiences of Follow-up After Cancer Treatment. Cancer Nurs. Jan-Feb 01 2022;45(1): E299-E308. https://pubmed.ncbi.nlm.nih.gov/33481409/
• Hauken MA, Grue M, Dyregrov A. "It's been a life-changing experience!" A qualitative study of young adult cancer survivors' experiences of the coexistence of negative and positive outcomes after cancer treatment. Scand J Psychol. Dec 2019;60(6):577-584. https://pubmed.ncbi.nlm.nih.gov/31503342/
• Hauken MA. Cancer rehabilitation of adolescents and young adults. . In: Olsen PRaS, Sam (Eds.), ed. Nursing Adolescents and Young Adults with Cancer. Developing Knowledge, Competence and Best Practice: Springer International Publishing; 2018.