Dismissing chronic illness: A qualitative analysis of negative health care experiences.
Stephanie McManimen, Damani McClellan, Jamie Stoothoff and 2 others
PMID 30829147WHAT IT FOUND
Many people with ME/CFS described health care professionals dismissing their symptoms, attributing them to depression or anxiety, or pushing exercise after symptoms worsened.
Clinicians should listen to symptom reports and avoid forcing activity.
Key findings
01Most participants reported a dismissive health care experience, and their responses were coded into disbelief, inappropriate causes, inappropriate treatments, insensitivity, and lack of knowledge.
02More than half of participants described health care professionals attributing their illness to causes they viewed as inaccurate or inappropriate.
03Some participants were told to engage in exertion such as graded exercise therapy, and their reports that it made them worse were often dismissed.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
Participants were recruited through social media, patient advocacy newsletters, and internet forums, so people with negative care experiences may have been more likely to respond. Diagnosis was self-reported ME or CFS, not confirmed by the study. The findings are patients' perceptions of health care professional interactions, not tested effects of treatments or outcomes. The paper does not identify which type of health care professional gave each dismissive experience, so it cannot show what nurses, therapists, or physicians specifically did. Some positive experiences were mentioned, but the questionnaire focused on dismissive experiences.
Declared interests
The supplied text does not include a conflicts or funding declaration. The journal metadata lists Research Support, N.I.H., Extramural.
The easy way to misread this
Do not read the 89.4% dismissive rate as the true rate of dismissive care in health care. The sample was recruited through social media, advocacy newsletters, and internet forums, and participants were asked about dismissive experiences, so it likely overrepresents negative encounters.