What do patients with traumatic brachial plexus injuries need for social and emotional support? A qualitative analysis.

Background: Patients with adult traumatic brachial plexus injury (BPI) face numerous challenges, both directly and indirectly related to their physical disability, during their adjustment to life after injury. Our goal was to identify domains of care in which a patient navigator could improve delivery of care for BPI patients as they await recovery of upper extremity function.

Methods: We conducted semi-structured interviews with 28 brachial plexus patients after reconstruction. The interview guide focused on interactions with members of their care team and other sources of support. Inductive thematic analysis was used to identify recurring topics across patient experiences.

Results: Our study revealed four primary themes: 1) Patient perception of family engagement and personal responsibilities influence the desire for additional support from the care team. 2) The navigator role would include family education, appointment coordination, and help with transportation and insurance. 3) Patient and family education should emphasize the understanding of neuropathic pain, timeline of healing, and expected new roles. 4) A long-term solution to patient isolation may involve shared experiences with current BPI patients.

Conclusions: Patients with BPI agreed that a navigator dedicated to helping them through the medical and social aspects of their care would benefit both patients and families. Patients identified areas of education that a navigator could help with, specifically gaps in knowledge regarding pain, expectations, recovery timeline, and lifestyle modifications. Additionally, building an accessible community of BPI patients may reciprocally improve social well-being, as some patients expressed a desire to guide other patients through their journey.