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

Abstract:

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.

journal_name

Plast Reconstr Surg

authors

Squitieri L,Larson BP,Chang KW,Yang LJ,Chung KC

doi

10.1097/PRS.0b013e31828bd52b

subject

Has Abstract

pub_date

2013-06-01 00:00:00

pages

880e-887e

issue

6

eissn

0032-1052

issn

1529-4242

pii

00006534-201306000-00013

journal_volume

131

pub_type

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