A home respiratory support programme for children by parents and layperson carers

Aim:  To describe a respiratory support programme for children at home by parents and layperson carers. Methods:  Analysis of records of children with long-term mechanical respiratory support at home. Results:  From 1979 to 2008 the programme managed 168 children (median age 7 years, range 3 weeks–19 years) with obstructive sleep apnoea (55, 32%), neuromuscular conditions (42, 25%), tracheo-bronchomalacia (23, 14%), kyphoscoliosis-cerebral palsy (20, 12%), acquired central hypoventilation (8, 5%), congenital central hypoventilation (7, 4%), chronic lung disease or pulmonary hypoplasia (8, 5%), traumatic quadriplegia (3, 2%) and tumour-related quadriplegia (2, 1%). One hundred and sixty-one (96%) were discharged: 73 (46%) remain in the programme; 27 (16%) transferred to adult services, 25 (15%) recovered and 36 (23%) died. Principal modes of therapy were mask continuous positive airway pressure (CPAP) 35%, mask bilevel positive airway pressure 30%, tracheostomy CPAP 20%, tracheostomy mechanical ventilation 8%, phrenic nerve pacing 3%, negative pressure chamber ventilation 2% and nasal tube CPAP 2%. Two unexpected deaths occurred at home: one from accidental tracheostomy decannulation and another unrelated to respiratory support. Average time in the programme was 3.3 years. Parents of 69 children were provided with trained carers. Successful discharge resulted from early recognition of potential to discharge, parental training, recruitment and training of carers, purchase of equipment and secure funding. Seven children were not discharged, two of whom died in the hospital and five are subject to discharge planning. Conclusion:  Respiratory support of children at home by trained parents and layperson carers is safe and efficient. All modes of respiratory support may be used.