RESUMO
OBJECTIVE: Information regarding how caregivers cope when using presurgical infant orthopedic (PSIO) appliances is sparse. This study aimed to understand caregivers' perspectives and experiences with contemporary PSIO treatment. DESIGN: PSIO videos shared on the YouTube™ platform were used as the data source. Videos with caregivers were identified (n = 21) and portions with caregiver narratives were transcribed. This was followed by the application of a six-step thematic analysis as conceptualized by Braun and Clarke (2006, 2019). RESULTS: Two themes were identified from the caregiver narratives in the PSIO videos. The Family Journey theme included reaction to diagnosis, choice of center, burden of care, care commitment, coping, and testimonials. The Information theme included PSIO techniques and PSIO benefits. CONCLUSION: Multifaceted challenges and coping strategies were described by caregivers during the PSIO phase. Caregivers remained committed to treatment despite the burden of care, were motivated by an understanding of the benefits of PSIO, and customized care based on their individual strengths and needs. Study results can help providers gain an understanding of what caregivers experience outside the clinical environment.
RESUMO
BACKGROUND: Caregivers seeking additional information about Presurgical Infant Orthopedics (PSIO) may turn to online sources, but the quality of information on platforms like YouTube is uncertain. AIM: To investigate the content and quality of PSIO videos on YouTube. DESIGN: YouTube videos were searched using keywords related to PSIO appliances. Videos that met the eligibility criteria (n = 52) were categorized as care provider or caregiver-based. Engagement metrics were analyzed and quality assessments were performed by two raters using the Global Quality Score (GQS), Video Information and Quality Index (VIQI), and Medical Quality Video Evaluation Tool (MQ-VET). RESULTS: Inter-rater and intra-rater correlations were high (r ≥0.9; p < 0.01), indicating excellent reliability. Strong correlations were observed between the GQS, VIQI, and MQ-VET scores (r: 0.86-0.91; p < 0.01). Mean GQS (2.7 ± 1.1), VIQI (13.0 ± 4.1), and MQ-VET (42.6 ± 12.4) scores indicated poor to moderate video quality. Most videos (73.1%) were in the care provider category and rated significantly higher (p < 0.05) in quality than the caregiver category for all three indices, but not for video engagement metrics. CONCLUSION: YouTube PSIO videos are not comprehensive and lack quality. Caregivers of infants undertaking PSIO should seek advice from care providers and not rely solely on YouTube videos.