Short summary

Young adult cancer survivors (YACS) (18-39 years) report that late effects affect their participation in everyday activities, which may reduce their healthrelated quality of life.To date, there is limited knowledge about how to support YACS to participate in their everyday activities. Therfore, it is necessary to explore young adult cancer survivors, their social environment, and social and health professional's preferences on how to strengthen participation in everyday activities. 

Rationale

Globally, approximately 1 million young adults are annually diagnosed with cancer. In Denmark, the incidence was 1,600 in 2016. YACS differ markedly from other cancer age groups because cancer strikes during a period of their life where they are often establishing relationships and a family, finishing their education and are in the early stages of gaining employment. Furthermore, treatment of YACS is often more intrusive, multimodal and long-lasting compared to older age groups with cancer. Hence, YACS have different needs compared to other age groups with cancer and they require interventions tailored to their specific problems. 

Improvements in cancer treatment have increased survivorship for most young adults with cancer. However, extant evidence shows that YACS after the treatment face problems regarding their everyday activities, such as work, education, social and leisure activities. In a recent Danish cross-sectional study among 822 YACS, 50% of those surveyed reported that the cancer disease had negatively affected their participation in social and leisure activities (e.g. concert, night on the town) after treatment, and 53 % reported that they needed support to maintain or return to work or education. An American cohort study (N=388) found that more than 50% of young adult cancer survivors still reported challenges with maintaining work and education almost three years after cancer diagnosis. The number one cause of this was fatigue followed by memory and attention problems. All these challenges have a negative impact on YACS' health-related quality of life (HRQoL) and lack of participation in education and work has substantial economic impact on the individual and society. Evidence of how to support YACS to participate in everyday activities is currently lacking and research in the area is urgently needed. 

Rehabilitation has shown to improve physical, social, psychological, vocational functioning, participation in society after cancer, and reduce late effects. Furthermore, research has shown that an empowerment-oriented approach in cancer rehabilitation can support cancer survivors in taking control of everyday life again, which also has found to be important for YACS. In order to develop a new rehabilitation programme it is key to discover the perspectives of YACS as well as health and social professionals involved in cancer care for YACS, and then thoroughly test the proposed rehabilitation programme via a feasibility study. Developing an evidence-based rehabilitation programme is the first and most important step to support YACS in resuming everyday life and increase their HRQoL. This is not only of interest for YACS and their relatives, but for society in general.

Aim

To explore YACS, their family and friends, and social and health professionals' preferences on how to strengthen YACS' participation in everyday activities.

Description of the cohort

Following participants will be included: 1) young adult cancer survivors who has or had have any cancer diagnose, 2) young adult cancer survivors' relatives and friends, 3) professionals that work with young adult cancer survivors in hospital or municipalities setting, 4) representatives from workplaces/education institutions, and 5) representatives from organisations which organise leisure activities.  

Data and biological material

Collaborating researchers and departments

REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care 

• Professor Karen la Cour, PhD
• PhD student Maria Aagesen, cand.scient.fys

Center for Crisis Psychology, University of Bergen, Norway.

• Associate Professor May Aasebø Hauken, PhD

The Research Initiative of Activity Studies and Occupational Therapy, Research Unit of General Practice, Department of Public Health, the University of Southern Denmark.

• Associate Professor Eva Elisabet Ejlersen Wæhrens, PhD