Study results

Authors: S. Mokhov, A. Klepikova, A. Altukhova

In 2021, we received study results on the problems of timely care for people with ALS. This sociological study was conducted by a team of scholars: Sergei Mokhov, Ph.D. in sociology, researcher at the Institute of Anthropology and Ethnography (IAE) RAS and Liverpool John Moores University; Anna Klepikova, Ph.D. in sociology, assistant professor at the European University at St. Petersburg (EUSP); and Anna Altukhova, researcher at the EUSP.

They studied the trajectory of an ALS patient in modern Russia: from initial symptoms and diagnosis to specialized care. Based on the results of in-depth interviews with 22 ALS patients and 30 relatives from 10 regions of Russia, the researchers identified several issues.

For many families, a simpler diagnosing process and less bureaucracy is more important than earlier diagnosis of ALS. The longer it takes to register a disability and palliative care status (this process can start before a diagnosis has been made), the less likely a person will receive any kind of assistance from the state at the moment of need. State aid cannot keep up with the rapid progress of the disease.

Doctors at district clinical, regional, and city hospitals may be incompetent in managing patients with ALS. As a result, people cannot receive necessary care and may even be excluded from the medical care program altogether.

At the same time, it is impossible to improve the quality of life of patients with ALS and their relatives without access to medical care.

A person with ALS may come to the attention of the foundation when direct communication is no longer possible, making it necessary for the staff to contact relatives. Therefore, the prospect of the disease may not always be discernible.

People with ALS and their relatives, due to rather varied scenarios of the progression of the disease, may distrust the negative picture of the future outlined by various sources of information, from local doctors to specialists from the foundation. For example, mentioning gastrostomy at an early stage discourages most people, as they cannot imagine themselves or their relative to be so ill. People prefer relying on the positive experiences of other patients rather than considering all risks.

Researchers emphasize the importance of developing regional patient communities. The structure of the medical and social care depends on the region, and families have different access to resources. In patient communities, families can exchange equipment and share experiences. Moreover, it is much easier for a person who has just been diagnosed or a relative to believe in the experience of a neighbor. This often helps overcome the mistrust people from different regions have for foundations.

The findings of this research confirm the importance of the work being done by the “Live Now” Foundation — educational projects for doctors, interaction with the state — and also identify new areas for development: communication with patients, and the development of communities in the regions.

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