Impact of paediatric tracheostomy on children and caregivers’ quality of life

This study aimed to (1) estimate the mean quality of life score for paediatric tracheostomy patients and their caregivers, (2) examine the correlation between their quality of life, and (3) identify factors associated with their quality of life. A cross-sectional study was conducted across three Malaysian tertiary hospitals over 2 years and 8 months. Participants included paediatric patients who had undergone tracheostomy at least three month prior or recently decannulated for less than three months, along with their caregivers. Data were collected using PedsQL questionnaires, assessing physical, emotional, social, and cognitive functioning, along with worry, daily activities, and family functioning. Fifty-five patients and their caregivers participated. The mean quality of life score for paediatric tracheostomy patients was 75.51, with physical and psychosocial health scores of 74.0 and 76.5, respectively. The family impact score was 75.1, with health-related quality of life and family functioning scores of 75.9 and 77.6, respectively. Both the patients’ and caregivers’ quality of life scores were higher than those reported in previous studies. A moderate positive correlation was found between the quality of life scores of children and their caregivers. Factors such as age, major medical comorbidities, and excessive secretions were significantly associated with lower quality of life for both groups, indicating the need for focused clinical care and a dedicated tracheostomy care program. Paediatric tracheostomy significantly impacts the quality of life of both patients and caregivers. Identifying associated factors and offering early support through specialized programs can improve their well-being.