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Survey: Stigma isolates Canadians with lung disease

Canadians with lung disease report social isolation, self-blame and delayed treatment because of stigma surrounding their disease.

According to a recent survey of 1500 Canadians, created by The Canadian Lung Association, stigma plays a significant part in the physical and mental well-being of Canadians with lung disease. For instance, the survey showed that more than half of the respondents with lung cancer experience social isolation and see their family and friends less often since their diagnosis.

Furthermore, 42 per cent of those with lung cancer feel less deserving of help, while 1 in 3 Canadians with COPD – 30 per cent– (chronic obstructive pulmonary disease) feel guilty or ashamed of their diagnosis.

“We strongly believe that there is no room for stigma when it comes to lung disease. Everyone deserves to be able to breathe. We need to be there to support those living with lung disease, and change the public perception of it,” says The Canadian Lung Association president and CEO, Terry Dean.

“It’s incredibly heartbreaking that those who struggle to breathe have the added burden of social stigmatization and resulting isolation.”

The survey looked at asthma, lung cancer, COPD and other chronic lung diseases. The greatest concern for those with lung cancer seemed to be the isolation perceived by those who have or care for someone with lung cancer. COPD showed similar results in terms of isolation experienced by those who have or care for someone with COPD, with 39 per cent of those who have COPD reporting social isolation.

Stigma surrounding asthma seemed to stem from misunderstanding of what asthma is. Shockingly, 1 in 4 respondents (24 per cent) without asthma reported they believe asthma can be overcome by good attitude. This complements the findings of those who have asthma. More than half of the respondents (53 per cent) with asthma reported that it has been suggested to them that asthma is not a serious disease. Added to that, 1 in 4 (26 per cent) have felt judged or stigmatized for using an inhaler in public.

Both patients and researchers demonstrate that stigma leads to poorer outcomes for people living with lung disease.

“No matter how or who gets lung disease, everyone deserves positive outcomes,” Dean concludes.

Survey highlights:

  • 11 per cent of Canadians (without COPD) believe people who smoke deserve COPD
  • 38 per cent of Canadians who have, know or care for someone with COPD report social isolation
  • 55 per cent of Canadians who have lung cancer report social isolation due to stigma
  • 45 per cent of Canadians who have lung cancer report putting off doctor visits due to self-blame
  • 68 per cent believe that those who smoke and develop COPD deserve the same sympathy as those who have never smoked and developed the disease
  • 55 per cent of respondents  would feel empathy if someone they knew had lung cancer
  • 24 per cent of people with asthma have heard that it can be overcome with a good attitude

For a complete summary of the survey findings and to learn what you can do to help reduce stigma in your community, click here.