Introduction: Caregivers of children with chronic respiratory technology needs (CRTN) face unique emotional challenges. Caregiving can foster personal growth, resilience, and meaning. We aimed to explore perceived caregiver benefit among families of critically ill children with CRTN. Methods: Prospective cohort study of English-speaking caregivers (≥ 18 years) of children requiring CRTN, from home oxygen to invasive mechanical ventilation via tracheostomy. At enrollment, caregivers completed the 6-item short form of the University of Washington Caregiver Benefit Scale (UW-CBS). Clinical and demographic data were obtained via chart review, including child age, caregiver characteristics, insurance type, hospitalizations in the prior 3 months, and severity of illness at ICU admission. Results: UW-CBS responses were available for 31 caregivers. Median child age at enrollment was 2.9 years (IQR 1.16-8.90); median caregiver age was 36 (32-42). Caregivers identified as female (83.3%), male (13.3%), and non-binary (3.3%). Children were covered by commercial insurance (72.7%) and Medicaid (72.7%). Parent identities included White (83.3%), Black or African American (16.7%), Asian (6.7%), and American Indian or Alaska Native (3.3%). Median hospital days in the prior 3 months was 0 (0-2.5), maximum of 63. Median PRISM was 0 (0-3). Median T-score was 51.9 (40.2-62.6), slightly above the population mean of 50. Scores were positively skewed; 26% of caregivers reported the highest score. Most caregivers reported caregiving made them a stronger (61%), better (55%), and more caring (52%) person. Nearly half (48.4%) said caregiving made them more patient and added meaning to their life. Conclusions: Perceived caregiver benefit is a meaningful and measurable component of families’ experiences with CRTN, offering a human-centered lens to understand and support families in critical care. Rather than focusing solely on reducing burden, interventions should also build upon caregiver strengths. Future research should include non-English speaking families, examine longitudinal perceptions, and explore associations with cultural and demographic factors to inform equitable, family-centered care models.
Jungman et al. (Sun,) studied this question.