A mixed methods analysis of health literacy among adults with brachial plexus birth injury.
Jenny M Dorich, Jordyn Whiting, Vicki L Plano Clark and 2 others
PMID 42295133WHAT IT FOUND
Adults with brachial plexus birth injury describe care as all or nothing.
A provider who knows the condition, or is willing to learn, makes it work. An unfamiliar or dismissive one does not, and childhood specialty care disappears in adulthood.
Key findings
01Average health literacy scores sat in the middle of the scale, but the interviews and open comments showed most people's experiences were not middling: they were clearly good or clearly bad.
02What separated a good experience of having a trusted provider from a bad one was whether that provider knew about brachial plexus birth injury or was willing to learn, or was instead dismissive of the condition.
03Adults reported that specialty care they had as children was lost when they moved into adult services, and that finding care they could afford, or did not have to travel for, was hard.
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
Recruitment was through survey links posted on two online support groups, so people without reliable internet access are not represented. The authors could not verify the diagnosis, and collected nothing on injury severity, recovery or treatment, so the group cannot be described clinically. The sample was mostly female even though the condition affects genders roughly equally, and older participants were especially likely to be female. Participants spanned 67 years of age, during which care for the condition changed substantially, so the authors did not compare variables across ages. Only five of the nine health literacy scales were used, because only those five matched what participants had said mattered in the earlier phases. Income, education level and where people live were not collected, so the influence of social determinants on these scores could not be examined. This is a secondary analysis of data gathered for a broader study, so it can describe experiences but cannot test whether any service or treatment works.
Declared interests
Funded by a Cincinnati Children's Hospital Medical Center Place Outcomes Research Award. The authors declared no potential conflicts of interest.
The easy way to misread this
Do not read the mid-range average scores as meaning these adults have unremarkable health literacy. The people in this study described experiences landing at the good or bad extremes, and the authors themselves warn that mean scores alone hide that. This is a secondary analysis of survey and interview data, so it cannot tell you whether any particular service or treatment helped.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →