Louie Lee, PhD, Neurological Physiotherapist at University College London, discusses self-management of neuromuscular disorders (NMDs).
NMDs are often progressive, rare, incurable and limited treatment options. As Dr. Lee explains, these factors are important to the role that self-management support plays in these patients. A qualitative study was conducted to examine the perspectives of people living with NMD on self-management and adapting to life with NMD to better inform future intervention development and evaluation.
Study
Twenty eight interviews were conducted with patients with various NMDs ranging from ages 18 to 75 years. A highlight from the interview was participants’ perspective on the psychological burden of living with a rare and progressive condition that has no cure. These challenges, paired with physical limitations, have impacts on patients’ social participation and engagement.
This study underscores the crucial role of adaptation in living with NMD. While most NMDs cause progressive physical decline, the experience of this progression is not always straightforward. When deterioration occurs, it often triggers a reflexive process where individuals redefine their physical and emotional identities, regaining a sense of control and normalcy.
The concept of self-management in NMD, however, presents a paradox. Effective self-management requires external support. Patients’ knowledge, confidence, and skill-building are deeply intertwined with the social capital they gain from trusted NMD specialists. Without trust in these experts, self-management approaches may be rejected.
The study also critiques how the neoliberal agenda has influenced participatory approaches to health. True collaborative self-management can challenge power imbalances by fostering partnerships that make the process more meaningful and relevant for patients.
Finally, the findings highlight adaptation as a promising target for future NMD interventions. By learning from the cycles of disruption and reconstruction inherent to progressive disease, healthcare programs can better support NMD patients. This insight has already shaped the development of a new self-management support program tailored to their needs.
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To learn more about rare neuromuscular disorders, visit https://checkrare.com/diseases/musculoskeletal-diseases/