What?

The purpose of the project has been to discover how design research can contribute to the well-being of children and young people with rare musculoskeletal diseases. The primary stakeholders in this thesis are children from the age of 11 living with either Multiple Osteochondromas or Ollier's disease, along with their family caretakers. When examining the system of actors, family caregivers emerge as knowledge carriers, consolidating information from their general practitioner, various specialists, the National Resource Centre for Rare Diseases, and their child.

How?

Based on the CYP MOOD research project established by Oslo Metropolitan University, I have collected data through articles, workshops, interviews, and observations. Through a workshop and interviews at Beitostølen Center for sports and health activity, I gained insights into the daily life of the primary user, their family caregivers, and surrounding network. Qualitative data on secondary and tertiary stakeholders were obtained through interviews and expert assessments with psychologists, social workers, occupational therapists, and specialists in pain management, innovation, and health science.

Why?

The rare musculoskeletal conditions affect their daily lives and well-being, and they may experience challenges related to physical activity and social participation. The goal has been to create solutions that address their needs, promote well-being, and enhance their sense of mastery. The master's thesis has resulted in a range of concepts, leading to a plan for the future implementation of the design solutions.

This project's research will be further developed by a PhD candidate starting in autumn 2025. The candidate will build on my work, delving into the concept development outlined in this thesis. The diverse concepts demonstrate various approaches to the system, with the final concept illustrating potential directions for further exploration.