The impact of pediatric tracheotomy on parental caregiver burden and health status.

OBJECTIVE To explore the effects of the placement of a pediatric tracheotomy tube on the degree of caregiver burden and overall health status of parents using general and disease-specific instruments. METHODS Between January and July 2001, the Medical Outcomes Study Short Form 12 (SF-12) and the Pediatric Tracheotomy Health Status Instrument (PTHSI) were administered to 154 families of children requiring tracheotomy. Summary scores were generated for each of the 2 scales of the SF-12 (the Physical Component Score [PCS] and the Mental Component Score [MCS]) as well as for the 4 previously established domains of the PTHSI: domain 1, physical symptoms of the child (7 items); domain 2, medical visits and cost (7 items); domain 3, parental rating of the child's psychological health status (3 items); and domain 4, parental rating of their own caregiver burden (17 items). Correlations between responses from the individual domains and between domain 4 of the PTHSI (reflecting caregiver burden) and the SF-12 were performed. RESULTS The mean +/- SD summary scores for the 4 domains of the PTHSI were domain 1, 22.7 +/- 5.3; domain 2, 24.9 +/- 6.2; domain 3, 10.5 +/- 4.4; and domain 4, 48.3 +/- 9.5 (lower scores reflect "poorer" health status). The mean +/- SD summary scores of PCS and MCS were 50.5 +/- 11.3 and 35.8 +/- 11.4, respectively. There existed a significant correlation between parental caregiver burden (as expressed by domain 4) and the child's physical health status (domain 1) (0.32; P<.001) as well as between parental caregiver burden and increasing economic costs associated with this care (0.27; P<.001). A strong correlation was found between the domain measuring parental caregiver burden (domain 4) and the MCS-12 (r = 0.43; P<.001), while a poor correlation existed with the PCS-12 (r = -0.17; P =.14). Nevertheless, in contrast to caregiver burden, the health status of the caregivers as measured by the SF-12 did not alter according to the severity of illness for the children (P =.17). CONCLUSIONS Parents caring for children with tracheotomy tubes experience significant caregiver burden. These parents appear to experience increased burden with respect to the child's severity of illness and increased costs associated with caring for their children. Overall, the mental health status for an adult caring for a child with a tracheotomy tube is significantly reduced and appears to be more affected than physical health status.