Date
2-28-2025
Department
School of Health Sciences
Degree
Doctor of Philosophy in Health Sciences (PhD)
Chair
Beth Ann Sexton
Keywords
neurofibromatosis type 1 (NF1), plexiform neurofibroma (PN), chronic pain, pain management, social learning theory, opioid addiction
Disciplines
Medicine and Health Sciences
Recommended Citation
Zampelli, Annette Renee, "Understanding Recognition of Pain for Improved Pain Management in Neurofibromatosis Type 1 Plexiform Neurofibroma" (2025). Doctoral Dissertations and Projects. 6522.
https://digitalcommons.liberty.edu/doctoral/6522
Abstract
This was a qualitative, transcendental, phenomenological study, providing ontological perspectives from parents/caregivers with a transformative framework. The purpose was to aid families and healthcare professionals (HCPs) in recognizing pain as a symptom for neurofibromatosis type 1 (NF1) plexiform neurofibroma (PN) to provide earlier management, improved clinical outcomes and a better quality of life (QOL). The results of the final analysis of this study will support the development of a usable tool for patients, families, and HCPs to better identify pain as a symptom in NF1 PN, promoting improved pain management, QOL, and clinical outcomes. The purpose of this phenomenological study was to understand the chronic pain for NF1 PN patients at NF Clinic Network (NFCN) outpatient clinic visits. Patient family interviews from three NFCN centers, in the Northeast United States, were conducted with 15 families. NFCNs are centers designated through an application process by the Children’s Tumor Foundation (CTF) that specific clinics have the expertise and appropriate clinical support to manage NF1. The theory guiding this study is the Social Learning Theory, introduced by Alfred Bandura in 1971. Bandura recognized that most human behavior is learned observationally through modeling from others (Bandara, 1971), including pain. Escape from an aversive condition, such as pain, serves as a powerful source of reinforcement maintaining imitative responding (Parke, 1972). The patient family interviews were an opportunity to understand the behaviors related to pain and how they influence patient and family recognition and reactions to pain. The data collected from these interviews served as the foundation to better understand and recognize pain earlier in the disease process to improve clinical outcomes.
