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Short description of main results

Published main results focusing on the person-centred approach and working method of the project are linked both to the goal of developing a digital platform-based solution for peer support and to the methods and processes used to develop the platform (i.e. actively involving patients as co-researchers and co-designers throughout the research and innovation process). 

The prototype for a secure digital platform for peer support (Pejla) that provides opportunities for social, emotional support and exchange with others living with similar experiences and situations was developed in close partnership with and for the end user. The strength of being an interdisciplinary research team has given us the opportunity to disseminate results from the project in important channels within all our respective research areas.

The results from the MinKod project, including specifically the Pejla sub-project, have been disseminated in national working groups (e.g. National Working Group AYA, research group at Karolinska Institutet, Sahlgrenska Comprehensive Cancer Center) where the MinKod model has been described as a model for the care of young adults and highlighted the need for complementary support in the form of Peer-to-peer support as a complement to healthcare.

Continued work

In various reports, the patient group young adults with cancer highlights that the need for supplementary social support through peer support remains very high, among other things this is clear in the report from Young Cancer's 2024 member survey.

The goal is to continue exploring the possibilities of supplementing healthcare psychosocial support with informal support via patient organizations and peers, and to also develop the support with adaptation to several other target groups in addition to young cancer sufferers. 

Within the project, a digital training course for healthcare professionals has been developed in which various areas that are important for the target group are highlighted, and also a section that focuses on person-centred care for young people. The training will be available to all healthcare professionals who meet the target group young adults with cancer.

The digital training for healthcare professionals on cancer in teenagers and young adults will be made available nationally (the goal is for it to be completed in 2025). Team Young: a model for a structure around psychosocial support for the newly diagnosed young adult patient has been developed at Sahlgrenska University Hospital. The model is currently available at the oncologist, hematologist and pediatric oncologist. Discussions are ongoing regarding more units at Sahlgrenska University Hospital and in the rest of Region ³Õä²õ³Ùra Götaland.

Background

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.

About the project

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 91̽»¨ Center for Person-centred Care, GPCC, (Ylva HÃ¥rd 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.