Dissertation
Lived experiences of parents and caregivers of children with infantile torticollis: a phenomenological study
Doctor of Philosophy (Ph.D.), Drexel University
Mar 2026
DOI:
https://doi.org/10.17918/00011417
Abstract
Congenital muscular torticollis (CMT) is a common musculoskeletal condition in infancy that, if left untreated, may result in craniofacial asymmetry, motor delays, and postural abnormalities. While clinical management strategies and outcomes for CMT are well documented, limited research has examined the lived experiences of parents and caregivers who are responsible for implementing treatment and navigating healthcare systems. The purpose of this qualitative phenomenological study was to explore how parents and caregivers of children diagnosed with infantile torticollis understand, experience, and manage the condition in their daily lives. Guided by an interpretivist paradigm, purposive sampling was used to recruit twelve parents and caregivers of children diagnosed with congenital muscular torticollis from pediatric physical therapy clinics across three sites in the northeastern United States. Data were collected through semi-structured, face-to-face interviews conducted between July and September 2025. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis supported by NVivo software. Strategies to enhance trustworthiness included peer debriefing, reflexive journaling, maintenance of an audit trail, and matrix coding queries. Analysis revealed six overarching themes: Diagnosis Experience, Provider Communication, Integrated Management of Torticollis in Daily Care, Barriers to Care, Support Systems, and Emotional Responses. Caregivers described an initial emotional response to diagnosis characterized by shock, worry, and guilt, followed by evolving understanding and adaptation over time. Participants emphasized the role of provider communication in shaping confidence, engagement, and caregiving competence. Treatment was most sustainable when integrated into daily routines; however, caregivers encountered logistical, emotional, and systemic barriers that influenced treatment adherence. Emotional responses evolved as caregivers gained confidence and observed progress. These findings highlight caregiving for a child with CMT as a dynamic process shaped by emotional, relational, and practical factors. Incorporating caregiver perspectives into family-centered care may enhance clinical communication, caregiver support, and outcomes for children with congenital muscular torticollis.
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Details
- Title
- Lived experiences of parents and caregivers of children with infantile torticollis
- Creators
- Julie McCulley Quinlan
- Contributors
- Gregory Daniel Benjamin (Advisor) - Drexel University, Biomedicine
- Awarding Institution
- Drexel University
- Degree Awarded
- Doctor of Philosophy (Ph.D.)
- Publisher
- Drexel University
- Number of pages
- xiii, 109 pages
- Resource Type
- Dissertation
- Language
- English
- Academic Unit
- College of Medicine; Biomedicine; Drexel University
- Other Identifier
- 991022189371704721