Reflections on wishes and needs of adults living with the life-threatening disease Duchenne muscular dystrophy.

AIMS AND

OBJECTIVES

To investigate reflections on wishes and needs of adults living with the life-threatening disease Duchenne muscular dystrophy (DMD) to target future rehabilitation.

BACKGROUND

Adults with DMD have a short life expectancy with a mean age of death at 26.8 years. Despite this, palliative rehabilitation is sparsely mentioned in standards of care. Relatives and healthcare professionals seem to find it difficult to talk about the future and future care with people living with a life-threatening disease.

DESIGN

The design of the study was qualitative using the Interpretive Description Methodology and the salutogenic theory of Sense of Coherence (SOC) as the theoretical framework.

METHODS

The method was individual semi-structured interviews with 13 adult men with DMD. The interviews were conducted from February to March 2025.

RESULTS

Navigating life with DMD was considered a condition of life, and being able to accept and adapt to uncertainties were effective coping mechanisms affecting the participants' overall SOC. Furthermore, living with a life-threatening disease was managed by living one day at a time, finding solutions, taking life as it comes, and getting the best out of it. Also, having dreams like everybody else, despite the uncertain future, was important. Finally, talking about future care felt strange to the participants, but it was easier if someone dared to ask directly. Timing and addressing individual needs were essential.

CONCLUSION

Adults living with DMD appreciated the opportunity to talk about their wishes and needs for the future. Healthcare professionals are recommended to initiate conversations about biopsychosocial and existential issues, and palliative rehabilitation is recommended throughout the DMD lifespan with attention to individual needs, timing, and state of the disease.