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Beyond the Diagnosis: Exploring the Socio-Ecological Factors in Neuromuscular Disease

  • Faiza Syed
  • Mar 5
  • 7 min read

Updated: Mar 31

Living with a neuromuscular condition from childhood into early adulthood has given me firsthand insight into the multifaceted challenges individuals face. My experiences have shaped my commitment to improving care for others living with progressive neuromuscular diseases (NMDs) such as Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophy (MD), or Multiple Sclerosis (MS). To better understand and address the needs of this patient population, I turned to the socio-ecological model (SEM) which is adapted from Bronfenbrenner’s foundational Ecological Systems Theory (McLeroy et al. 1988) that was originally designed to understand child development but has been adapted to heath contexts. Bronfenbrenner’s theory helps explain how individuals with NMDs interact with their environments across different systems. The SEM builds on this to provide a practical framework for developing strategies, advocating for policy changes, and addressing health disparities.

The SEM views health as the result of dynamic interactions between individuals and their environments, spanning personal, interpersonal, community, organizational, and policy levels. It provides a wholesome perspective on how factors ranging from personal behaviours to societal structures influence health outcomes. Applying the SEM can highlight the interconnected barriers faced by individuals with NMDs and advocate for systemic changes to improve healthcare equity and accessibility (Shimamoto et al., 2022).

While the primary focus here is on the SEM and its application to NMDs, it is worth noting that other models explained by my peers can also address the multifaceted factors influencing health. The Eco-Epidemiological Model (Susser, 1996) explores how ecosystems shape health outcomes, while Dahlgren and Whitehead's Social Model of Health (1991) highlights societal factors like lifestyle, culture, and environment, often used to tackle health inequalities. The Biopsychosocial Model (Engle, 1977) integrates biological, psychological, and social factors, providing a holistic view of health, commonly applied in clinical settings. Similarly, the Spheres of Influence Theory emphasizes multi-level interventions to address health disparities (Karches et al. 2021). These healthcare models highlight the variety of frameworks used to address and understand diverse health issues, including cancer, Indigenous health, mental health, asthma, cardiovascular disease, and primary care challenges, as discussed by my peers.


Individual Level

At the individual level, people with progressive NMDs face physical symptoms like muscle weakness, fatigue, and loss of motor control, which impact quality of life (QOL) and may lead to emotional challenges such as depression or anxiety. Managing health behaviors, such as medication, physical therapy, and nutrition, is needed for slowing disease progression and improving QOL. The WHO (2018) refers to chronic condition management as "the challenge of the century," noting that individuals with chronic conditions account for nearly 70% of health and social care costs. Lee (2024) offers a unique self-management support tool that shows promise for managing long-term conditions like NMDs. Developing such support systems for NMDs specifically is a promising but underexplored area of research.


Interpersonal Level

It's important to identify family and friends to provide support at the interpersonal level, particularly as caregiving becomes a primary responsibility with disease progression. This support helps individuals maintain mental health and community connections despite increasing limitations. However, caregiving can also strain the well-being of loved ones, particularly for affected young parents who may grieve their own limitations while adding stress to their spouse’s caregiving and childcare duties. It is essential that structures be put in place to support caregivers as well, ensuring they have the resources and assistance needed to manage these challenges. Lee (2024) highlights patient interviews, including one from a young mother with a NMD, illustrating these struggles:


It feels like a prison sometimes, you know? I just stay inside. Walking, hate it, it’s just hard work. My kids, they know I can’t do much activities with them, it’s hard, playing in the garden, running around, I can’t do that. That is…that hit me, that affects me, so I just stay home when I can (Lee, 2024).


Many individuals with NMDs eventually require long-term ventilation through a tracheostomy tube. This is a video from SickKids Hospital in Toronto, where families share their experiences with deciding to proceed with a tracheostomy and the challenges of living with an NMD.

 







Organizational Level

Health organizations and hospitals play a key role in coordinating care for individuals with NMDs within the SEM. At the organizational level, they provide specialized services, including access to neurologists, respirologists, and multidisciplinary care teams (e.g., physiotherapists, occupational therapists, and social workers). These teams provide comprehensive, patient-centered care for individuals with NMDs, utilizing validated assessment tools like the DMD-QoL (Vincent et al., 2007) to evaluate quality of life. These tools help identify critical factors such as access to care, social support systems, and environmental challenges. An example of this assessment is illustrated in Figure 1.

While QOL questionnaires are valuable, the SEM highlights the need to address health influences and outcomes through a broader, multi-level view. Systemic inequities and fragmented healthcare systems create significant barriers. In regions with inconsistent or under-resourced healthcare, individuals with NMDs often face delayed diagnoses, fragmented care, and limited access to treatments. These disparities are exacerbated by geographical, economic, and social determinants of health, highlighting the need for innovative solutions like telehealth, outreach programs, and community partnerships. In a recent comparison between Ontario (ON) and New Brunswick (NB) with a class peer, these disparities were clear. For example, ON’s urban centers provide specialized care and faster diagnoses, while NB’s rural areas face healthcare shortages and delayed treatment. Additionally, ON’s telemedicine infrastructure enhances access, while NB is still working to expand its telehealth services to improve timely care (Miedema et al., 2009).


Organizations play an important role in supporting individuals with NMDs by advancing research for new therapies, advocating for policy changes to improve care access and funding, and providing essential resources like education, financial aid, and support networks. These efforts empower patients and families, address individual needs, and drive systemic change by raising awareness, ultimately improving quality of life and care for those with NMDs.


Community Level

At the community level, the SEM highlights the importance of accessible, equitable services for individuals with NMDs. Communities ensure access to vital resources like rehabilitation centers, home care, and support groups, addressing both physical and emotional needs. Programs offering mobility aids, housing modifications, and transportation enhance independence and QOL. These initiatives align with the SEM by addressing environmental and social health determinants, helping individuals thrive in their communities.


Access to vital services varies, especially in rural areas, where geographic and infrastructural barriers worsen health disparities. For example, comparing NB and ON revealed stark differences in service availability. ON, with its urban centers and better healthcare infrastructure, provides a wider range of community-based services, such as specialized rehab and home care. In contrast, NB's rural population struggles with limited services, leading to delayed interventions and unmet needs for individuals with NMDs (Miedema et al., 2009). Kelsey Pyde (2025) expanded the comparison by including Alberta (AB) in her blog, effectively highlighting the healthcare challenges across AB, NB, and ON. She focused on key issues such as physician shortages, telehealth accessibility, and government funding. Both AB and NB, with their significant rural populations, demonstrated similar disparities in healthcare access and resource distribution.


NB, for example, has made strides in using telehealth to improve healthcare access in rural areas, benefiting individuals with NMDs. Programs like the New Brunswick Telehealth Program and the Extra-Mural Program (EMP) offer virtual consultations with specialists and integrate telehealth into home-based care, addressing geographic and resource barriers. However, the full potential for NMD patients is underexplored. Expanding telehealth to include virtual support groups, remote NMD specialist consultations, and home ventilation management could improve outcomes. Policymakers and healthcare organizations must prioritize these investments to ensure equitable care for all individuals with NMDs.


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 NMDs.


Driving Change

Canadians can drive change to improve healthcare access for individuals with NMDs, for example in certain underserved areas of rural NB and AB. Key actions include raising awareness through social media and events, supporting Muscular Dystrophy Canada, advocating for telehealth funding, and volunteering. Education initiatives can enhance healthcare providers' understanding of NMDs, while research and technologies like remote monitoring are vital. Addressing social determinants such as housing and transportation, collaborating with Indigenous communities, and using technology for virtual support can also help. National campaigns like Rare Disease Day and cross-provincial collaboration can boost efforts.


Final Thoughts

Applying the SEM to progressive NMDs helps us understand how individual, interpersonal, community, organizational, and policy levels shape health outcomes. Addressing these levels can improve care access, QOL, and reduce disparities for individuals with chronic conditions like NMDs. The SEM, validated in conditions like sarcopenia (Shimamoto, 2022), emphasizes the need for multidimensional interventions, relevant to muscular dystrophies. Health organizations and hospitals are key in bridging individual needs and systemic challenges, ensuring accessible, equitable, and responsive care.



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