Factors affecting the quality of life of caregivers of children with tracheostomy: an assessment tool

Objectives. Develop and validate comprehensive questionnaire scales to investigate the quality of life (QoL) of parents caring for tracheostomised children and identify potential contributing factors. Methods. This is a cross-sectional questionnaire conducted in paediatric otolaryngology clinics in 5 tertiary hospitals. Caregivers caring for children with tracheostomies at home between April 2023 and March 2024 were included. The survey items were divided into 4 distinct domains: (1) frequency of healthcare utilisation; (2) awareness and knowledge; (3) skills in tracheostomy care; and (4) caregiver’s QoL. Internal consistency, construct validity, and test-retest reliability were assessed. Results. Eighty-seven caregivers completed the survey. The combined Cronbach’s α coefficient was 0.81. Exploratory factor analysis values exceeded 0.75 for most items. The awareness level, ease of obtaining tracheostomy tubes, and experience in tracheostomy care showed a significant positive association with the QoL. Conclusions. TrachQoL questionnaire is a reliable tool that may help guide clinical interventions and future research. Scales for caregivers’ level of knowledge and skills and accessibility to health-care services are useful for investigating QoL in families caring for children with a tracheostomy.