The Layers of Care: A Model for Progressive Neuromuscular Disease Management

A good example of a multilevel approach to understanding health is the Socio-Ecological Model. This model looks at health as the result of interactions between individuals and various levels of their environment, including individual, interpersonal, community, organizational, and policy levels. It’s a broad way to understand how different factors ranging from personal behaviors to societal influences, affect health (Killam, n.d.).

I used this model to better understand and address the needs of my current patient population living with progressive neuromuscular diseases (NMDs), such as Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophy (MD), or Multiple Sclerosis (MS). This model can provide a deeper understanding of how these diseases impact individuals across multiple levels of society (Shimamoto et al., 2022)

The Socio-Ecological Model (Killam, n.d.)

Individual Level

At the individual level, the person living with a progressive NMD experiences the direct effects of the disease, such as muscle weakness, fatigue, and loss of motor control. These physical symptoms significantly affect quality of life and may also lead to emotional challenges, such as depression or anxiety, as the disease progresses. Personal health behaviors, such as managing medication, physical therapy, and nutrition, can play a critical role in slowing disease progression and improving life quality.

Interpersonal Level

On the interpersonal level, family and friends are crucial in providing support. Caregiving can become a major part of their role as the person with the disease requires more assistance. This social support network helps individuals maintain mental health and stay connected to their community, despite the limitations caused by the disease. However, the disease's progression often places significant stress on caregivers, which can impact both physical and emotional health.

Institutional Level

Health organizations and hospitals play an important role in coordinating care for individuals with progressive NMDs. This includes access to specialists (e.g. respirologists), multidisciplinary care teams, and rehabilitation services. In areas where healthcare systems are patchy, this can lead to delayed diagnoses, inconsistent care, and barriers to treatment. Organizations that focus on research, advocacy, and providing resources to individuals with neuromuscular diseases also make a significant impact.

Community Level

At the community level, people with progressive NMDs should be able to access services like rehab centers, home care, and support groups for patients and families. Community programs that provide mobility aids, accessible housing, and transportation are also important.

However, in rural or less urbanized areas, access to these services might be limited, increasing health disparities.

Policy Level

At the policy level, government decisions about healthcare coverage, disability assistance, and funding for research play a key role for progressive NMDs. For example, ensuring that provincial or private insurance covers necessary treatments, therapies, and assistive devices can make a huge difference in a person’s ability to manage their disease. Policy decisions around accessibility in public spaces, employment protections for people with disabilities, and support for families and caregivers all influence the lived experience of those with progressive neuromuscular diseases.

Final Thoughts

By applying the Social-Ecological Model to progressive NMDs, we can see how multiple levels of influence: individual, interpersonal, community, organizational, and policy interact to shape the health outcomes for individuals living with these conditions. A comprehensive approach that addresses all these levels can help improve access to care, enhance quality of life, and reduce health disparities for people with chronic and progressive conditions.

References

Killam, K. (n.d.). Applying the social-ecological model of health to loneliness and recognizing the power

of local community action. Retrieved from [https://kasleykillam.medium.com/the-inspiration-

behind-community-microgrants-5bdedff5e48a]

Shimamoto, T., Ishizaka, M., Ozato, N., & Yamaji, T. (2022). Application of a social-ecological model

to study the factors associated with sarcopenia. Journal of Clinical Medicine, 11(3), 1234.

https://doi.org/10.3390/jcm11031234