Keeping the Possibilities in Sight
When the Swedish Young Rheumatics sent out a survey to their members, it was found that half of the respondents were lacking support from healthcare to create the future they desired. Their answer to the substantial limitations found in the lives of young rheumatics was to develop the Dreamcatcher.
The Swedish Young Rheumatics is a non-profit organization that works with children, adolescents, and young adults with rheumatic diseases. Their vision is that all young rheumatics should experience the joy of life and be able to fulfill their dreams. In 2017, they performed a study that resulted in a report about what young rheumatics believe needs to change in healthcare, school, work-life, and society.
Afraid to dream
The Swedish Young Rheumatics’ general secretary, Kim Nilke Nordlund, explains that half of the people in the study stated that the healthcare system fails to provide support and hope regarding the future and their potential to live life to the fullest.
“Several young people have also expressed that they are reluctant to dream about their life ahead, because they do not know what limitations their disease will bring in the future,” Kim explains, and continues:
“But what happens if a young individual allows themself to be defined by limitations rather than possibilities? We believe it is important that they can tell their rheumatologist that they want to be a florist and be met with hope instead of being told that it is not a good idea to stand with their hands in cold water. It is easy to get hung up on the idea that the disease will always be there as an obstacle.”
It is also a well-known fact that healthcare professionals typically experience that they do not have the time to treat patients to the best of their ability. The solution—to help healthcare figure out the individual’s needs and allow these to be at the heart of it—is called the Dreamcatcher.
Health as a starting point
The Dreamcatcher is a digital tool that should inspire children, adolescents, and young adults with rheumatic diseases to dare to focus on their dreams—and at the same time help healthcare shift their focus.
“This tool changes the perspective by using health and what is possible as a starting point, instead of just focusing on sickness and the limitations that may arise,” Kim explains.
In the Dreamcatcher you can set up goals and objectives, and with the help of a scale, judge just how close you are to, or how far you are from, achieving your goals right now. This also makes it possible to express what you feel needs to change in order to reach the goal.
“The scale is our response to the classic VAS scale that is used in healthcare for patients to assess their pain on a scale from 1 to 10. Here we instead focus on dreams to make them more concrete and achievable,” she continues.
Based on values that are important to you, you can log and make your own measurements as a complement to healthcare’s standardized questionnaires. Kim provides us with more examples:
“With the help of the Dreamcatcher you can formulate that, ‘my dream is to backpack in Australia and right now I am at a 4. To make the dream possible I need help to review my treatment. I get infusions and that will not be possible if I am going to be away for a while.’”
Finally, you can share your dreams with others and invite ‘dream supporters’—friends, family, maybe teachers or trainers who can support you along the way. You can also follow and support others’ dreams.
Can the Dreamcatcher become a reality?
In the Swedish Young Rheumatics video about the Dreamcatcher, Karin Palmblad, a pediatrician at the Astrid Lindgren Children’s Hospital, explains how the Dreamcatcher can even be of use to healthcare:
“We have limited resources. If we can prepare ourselves for the patient we end up meeting and know that individual’s dream, the visit will be much more valuable for both the patient and the healthcare provider. In that sense, I believe that the Dreamcatcher would strengthen the healthcare provider’s ability to really ensure patient-centered care.”
At present, the Dreamcatcher is just a prototype. There are many who hope that the Dreamcatcher does not remain a dream, but actually becomes a reality and is used in healthcare by all young rheumatics. And there are more people realizing the potential in this tool—recently the Swedish Young Rheumatics received this year’s Innovation Award from the European pharmaceutical organization, EFPIA's Connecting Healthcare Awards.
“Our hope is that we can make the prototype a real product. Currently, we do not have sustainable funding. That is what we are working on now,” explains Kim.
Small dreams are also dreams
Kim believes that the healthcare system can sometimes contribute to individuals learning to focus on their limitations despite good intentions.
“I am quite convinced that all healthcare professionals want the best for their patients. But by shifting the perspective and seeing the potential in an individual, an incredible difference can be made for them. And dreams do not always need to be spectacular thoughts of life ten years into the future. It could be that I want to have high-heels at my graduation. Formulating your small dreams can be just as important.”