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A home respiratory support programme for children by parents and layperson carers
James Tibballs1, Robert Henning, Colin F Robertson
1Intensive Care Unit, University of Melbourne, Melbourne, Victoria, Australia. james.tibballs@rch.org.au
Insights
Home respiratory support programs for children, managed by parents and carers, are safe and effective. These programs utilize various ventilation modes, demonstrating successful outcomes for pediatric patients requiring long-term mechanical respiratory support.
Area of Science:
- Pediatric Pulmonology
- Home Healthcare
- Respiratory Medicine
Background:
- Long-term mechanical respiratory support is essential for children with various chronic conditions.
- Managing these children at home requires specialized programs involving parents and layperson carers.
- Previous approaches often focused on hospital-based care, limiting long-term options.
Purpose of the Study:
- To describe a home-based respiratory support program for pediatric patients.
- To evaluate the safety and efficacy of parental and layperson care in managing children requiring respiratory support.
- To identify key factors contributing to successful home discharge and ongoing care.
Main Methods:
- Analysis of retrospective data from a home respiratory support program.
- Inclusion criteria: children requiring long-term mechanical respiratory support.
- Data collected on patient demographics, diagnoses, support modalities, and outcomes.
Main Results:
- The program managed 168 children with diverse conditions including obstructive sleep apnea and neuromuscular disorders.
- 96% of children were discharged home, with various outcomes including ongoing support, recovery, or transfer to adult services.
- Common therapies included mask continuous positive airway pressure (CPAP) and bilevel positive airway pressure, as well as tracheostomy support.
Conclusions:
- Home-based respiratory support for children by trained parents and layperson carers is safe and efficient.
- All modes of respiratory support can be successfully implemented in a home setting.
- Successful outcomes are linked to early discharge planning, comprehensive parental training, and secure funding.
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.
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