Living With Spasticity During the COVID‐19 Pandemic: A Qualitative Study of Patient, Carer and Physician Experiences

Health Expectations, 2024 · DOI: https://doi.org/10.1111/hex.70032 · Published: September 3, 2024

Simple Explanation

This study explores how the COVID-19 pandemic affected people with spasticity, their caregivers, and the clinicians who treat them. Spasticity is a condition common in long-term neurological disorders and can interfere with physical and psychological well-being. The research involved interviews with patients, carers and a specialist doctor to understand their experiences during the pandemic, focusing on how lockdowns and changes in healthcare access impacted spasticity management. The study identified key areas for improvement in how healthcare systems can better support individuals with spasticity and their carers, especially during crises like a pandemic, including the need for alternative treatment options and better communication.

Study Duration

March to April 2022

Participants

11 (7 patients, 3 carers, 1 physician)

Evidence Level

Qualitative study using semi-structured interviews

Key Findings

1
The pandemic had negative impacts on the physical and mental health of patients and carers, increasing frustration, anxiety, and stress due to disrupted treatment and increased care burden.
2
Participants reported difficulties in accessing outpatient clinic appointments, including cancellations, delays in rescheduling, and reluctance to attend due to fear of contracting COVID-19.
3
The clinical spasticity service lead (CSSL) experienced increased stress and anxiety due to the backlog of patients needing treatment and the pressure to provide more clinic appointments with limited resources.

Research Summary

This qualitative study explored the experiences of individuals living with spasticity, their carers, and a clinical spasticity service lead during the COVID-19 pandemic. The research aimed to identify challenges, opportunities, and potential system improvements for future pandemics. Key findings revealed negative impacts on physical and mental health for patients and carers, difficulties accessing outpatient appointments, and increased stress for the clinical service lead. The loss of community resources and the need for alternative treatment options were highlighted. The study suggests that effective management of spasticity is crucial for maintaining independence and preventing additional burdens on carers and healthcare systems. Prioritizing research, service planning, and recognizing the role of carers are essential for future pandemic preparedness.

Practical Implications

Improve Access to Care

Develop strategies to maintain access to spasticity treatment during crises, such as telemedicine or alternative treatment options.

Support Carers

Provide resources and support for carers to reduce their burden and improve their physical and mental health.

Invest in Research

Allocate research funding to clinicians to develop evidence-based guidelines and innovative solutions for spasticity management.