Congenital Upper-Extremity Differences: A Thematic Analysis of On-Line Discussion Boards

On-line discussion boards (DBs) are used by patients and family members to pose questions and share experiences with a broader community. Systematic analysis of the text posted to DBs about congenital upper-extremity (UE) differences may allow physicians to identify and address patients' questions and concerns better.

We used Google and Yahoo! Internet search engines to identify on-line DBs pertaining to congenital UE differences. Posts written between January 1, 2009 and January 1, 2019 were collected and analyzed. Each on-line post was coded by 2 researchers using 3 rounds of grounded theory: open coding, axial coding, and selective coding. This allowed comprehensive, central themes of the DBs to emerge.

We collected 521 posts and analyzed 420 posts from 152 threads. A total of 163 unique users contributed to posts. Parents of a child with a congenital UE difference accounted for the majority of users (65%), most of which were postnatal (91%). Of posts written by patients, 48% expressed negative emotions pertaining to their difference, whereas 17% conveyed a positive experience. Five selective codes were identified from posts written by non-administrators: (1) Connecting With Others, (2) Emotional Aspects, (3) Treatment, (4) Diagnosis, and (5) Function. Connecting With Others was the most frequently assigned selective code; users were looking to establish a connection in 73% of posts. Posts seeking information (n = 106) were more often technical in nature than were posts providing information (54% vs 44%). Posts providing information (n = 206) were more often emotional (18% vs 13%).

Individuals accessing on-line DBs are commonly searching for technical and emotional support from others. Through analysis and identification of the themes from these posts, we believe physicians should be proactive in addressing technical concerns through education and counseling, but should also validate emotional concerns and assist families and patients via support groups or connections to others.

Treating surgeons can improve their care of patients with congenital UE differences by better understanding the needs of patients and their families that may not be elucidated in a traditional patient encounter.