Research on society’s view of people with serious medical conditions
Research on how society views people with serious medical conditions and barriers to meaningful communication
On 19 August, the SMA Families Foundation presented the “Results of a study on public perceptions of people with serious medical conditions seen through the eyes of society and those living with spinal muscular atrophy (SMA)”. The research was carried out by the Bazis Research Centre team for the Research Got Talent competition.
“Our initial hypothesis was that most people don’t want to talk about serious diseases – a feeling that can be mirrored in people with such conditions for whom an unwillingness of others to accept them becomes a barrier to socialisation”, said Olga Germanenko, CEO of the SMA Families Foundation.
During the study, the team conducted a lot of online surveys and in-depth interviews with both family members who live with a person with disabilities and others in the community to compare their responses.
The researchers found that people with disabilities do sometimes have difficulty in communicating with others or, for example, have experienced negative or hostile attitudes. However, more often than not, people show sympathy and express a desire to help. At the same time, disabled people say they prefer to be treated as equals.
Views regarding people with disabilities are largely influenced by the frequency and quality of their interactions – in other words, if someone has a disabled person among their friends and acquaintances, their attitudes towards them will be more positive and natural. In addition, the researchers found that for most respondents it makes no difference whether a person has a severe disability to initiate and maintain contact with them.
The researchers also found that most members of the public agree that disabled and able-bodied children should be taught in the same class.
One of the most important conclusions reached by the researchers is that contact between disabled people and the wider community is adversely affected by the lack of an accessible environment. This is the main problem, not people’s attitudes. The lack of such an environment and opportunities to engage in leisure activities result in disabled people either not leaving their homes or just socialising with people with similar medical conditions.
“We had expected a more negative attitude towards disabled people by society”, said Germanenko. “However, people with disabilities often underestimate those around them and treat them more warily than they should. The main lesson for us is that we need to get out more in the community to take part in social events, not just socialising among our own people. It’s our task in the Foundation to think how best to do this”.