Background
Elective surgical management of neonatal brachial plexus palsy is complex, variable, and often individualized. Little is known about the medical decision-making process among adolescents with NBPP and their families faced with making complex treatment decisions. The experiences of these patients and their parents were analyzed to identify key factors in the decision-making process.
Patients and Methods
Eighteen adolescents with residual NBPP deficits between the ages of 10 to 17 years along with their parents were included in the present study. A qualitative research design was employed involving the use of separate one hour, in person, semi-structured interviews, which were audio recorded and transcribed. Grounded theory was applied by two independent members of the research team to identify recurrent themes and ultimately create a codebook that was then applied to the data.
Results
Medical decision-making among adolescents with NBPP and their families is multifaceted and individualized, comprised of both patient and system dependent factors. Four codes pertaining to the medical decision-making process were identified: 1) knowledge acquisition, 2) multidisciplinary care, 3) adolescent autonomy, and 4) patient expectations and treatment desires. Overall, parental decision-making was heavily influenced by system dependent factors, while adolescents largely based their medical decision-making on individual treatment desires to improve function and/or aesthetics.
Conclusions
There are many areas for improving the delivery of information and health care organization among adolescents with NBPP and their families. We recommend the development of educational interdisciplinary programs and decision aids containing evidence-based management guidelines targeted toward primary care providers and patients. We believe that a computer-based learning module may provide the best avenue to achieve maximum penetrance and convenience of information sharing.