Objective: We set out to assess the impact of paediatric tracheostomy, performed in a central London hospital, on patients and their families.
Methods: We conducted structured interviews with caregivers of tracheostomised children using the Pediatric Tracheotomy Health Status Instrument during all in-patient admissions for airway endoscopy over a 6-month period.
Results: Completed questionnaires were received from 26 caregivers, 7 (27%) of whose children had been successfully decannulated. Carers reported adverse effects on all aspects of their quality of life, including sleep, relationships, social life and ability to work. The families included in the study had gross household incomes below the mean for SE London. There is a shortfall in the provision of home nursing when compared with the needs of the caregivers.
Conclusions: Tracheostomy has wide ranging effects on the quality of life of both the patient and their caregivers. We identified the need for better pre-operative preparation where possible, and greater support for such families in the community.