myCode - digital tools for emotional support during and after cancer treatment on young adults’ terms
Together with young adult cancer survivors (15-35 years), the goal of this project is to develop digital tools for emotional peer-to-peer support. The aim is to increase opportunities for approaching topics that are hard to address or talk about, such as sex, relations, fear of relapse, death and dying.
Reports have shown that this group often lacks sufficient support tailored to their needs and terms. In order to better assist their situation, a person-centred approach is needed, including both professional and social support. The project is carried out in close cooperation with the organization Ung Cancer, and is part of the innovation project myCode. Partners from both healthcare and business collaborate in aiming for a holistic approach to the life situation of young adults affected by cancer, both in health care and in society.
Young adults with cancer in the age group 15-35 years is a neglected group in both care and society, both during and after treatment. This group often lacks sufficient support tailored to their needs and terms - teens and young adults often find that they neither fit in child cancer wards nor in adult cancer care. A survey among the members of the cancer support organization Ung Cancer showed that young adults often feel isolated and alone in the course of their treatment, and that the majority have not met any other young adult cancer patient during their contact with health care. Being affected by cancer means spending a lot of time in hospital, and the survey showed that more than half stated that they had not received any emotional support to help them deal with this difficult situation.
People who survive their cancer will have to live with the consequences of the strenuous cancer treatment for the rest of their lives, whether they were affected as a child or young adult. In order to be able to offer the right rehabilitation, the the healthcare system has to closely follow up any secondary diseases and sequelae that can appear several years after cancer treatment. Emotional support is equally important to be able to live with such a difficult situation. Reports have shown that such long-term emotional support is needed both from professionals and from others living with similar experiences and situation - so called peer-to-peer support.
To a large extent, current support is insufficiently tailored to the needs and terms of young adult cancer survivors. In order to increase opportunities for managing this tough situation, a person-centred approach that includes both professional and social support is needed.
In this project, digital tools for "peer-to-peer" support are being developed together with young adult cancer survivors, with the aim of increasing opportunities to approach topics that are difficult to handle or to talk about, for example, sex, relationships, relapse, death and dying.
The project myCode [minKod] is a collaboration project within the framework of Vinnova's Challenge-Driven Innovation - Step 2, and involves a number of partners from research, healthcare and business with the aim of taking a holistic approach to the life situation of young adults affected by cancer, both in healthcare and in society. The partners collaborate with young adult cancer survivors during all phases of the project. In the project, the research team at the University of Gothenburg Center for Person-centred Care, GPCC, (Ylva Hård af Segerstad, Stefan Nilsson and Maria Olsson) collaborates with Ung Cancer and the follow-up clinics for adults following childhood cancer in Gothenburg and Stockholm. Using both qualitative and quantitative methods, the goal is to develop prototypes for digital tools for emotional peer-to-peer support tailored to the needs and terms of young cancer survivors.