300 Section - Meeting others with similar diseases and challenges may be important - but rare” - A qualitative study in rehabilitation of persons with rare diseases: part of a Norwegian feasibility study.

Although more than 300 million people worldwide live with a rare disease, the probability of individuals meeting others with a similar disease is low. This is true in life as well as in rehabilitation settings. In addition, healthcare workers often lack knowledge about rare diseases and appropriate treatments. To improve the situation, a Norwegian study explored the feasibility of adapting an ordinary rehabilitation programme to the needs of persons with rare bone diseases, and offering the adjusted programme to a group who had similar diseases. A qualitative study explored the experiences of the participants.
 

Design:

Experts on rare bone diseases collaborated with a residential rehabilitation centre, coaching staff in adapting an existing programme to better meet the needs of patients with rare skeletal diseases. All 16 patients participated in individual post-programme interviews focusing on their experience of the rehabilitation. Interviews were transcribed verbatim, and a thematic analysis was conducted.

Results:

Most of the participants had previous experience with rehabilitation; however, few had met others with a similar disease during rehabilitation. The benefit of meeting others was a theme which was emphasised in all interviews. It provided an opportunity to share experiences and learn from each other. The four week stay provided an opportunity to be in a process and reflect on life with a rare disease.

Conclusion:

Modifying the standard rehabilitation programme was evaluated as beneficial by the participants, providing opportunities they would otherwise not have had. The study provided insight concerning the meaning of learning from others with similar diseases who struggle with navigating life with multifaceted health problems.