Medical decision-making among adolescents with neonatal brachial plexus palsy and their families: a qualitative study.

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 neonatal brachial plexus palsy and their families when 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.

METHODS

Eighteen adolescents with residual neonatal brachial plexus palsy deficits between 10 and 17 years and their parents were included. Qualitative research design was used involving separate, 1-hour, in person, semistructured interviews, which were audio recorded and transcribed. Grounded theory was applied by two members of the research team to identify recurrent themes and create a codebook that was applied to the data.

RESULTS

Medical decision-making among adolescents with neonatal brachial plexus palsy and their families is multifaceted and individualized, composed of both patient- and system-dependent factors. Four codes 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, whereas adolescents largely based their decisions 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 neonatal brachial plexus palsy and their families. The authors recommend the development of educational interdisciplinary programs and decision aids containing evidence-based management guidelines targeted toward primary care providers and patients. The authors believe that a computer-based learning module may provide the best avenue to achieve maximum penetrance and convenience of information sharing.

CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, IV.