Quality of life of parents with children on home ventilation and long term oxygen therapy

Abstract

BACKGROUND: Advances in technology resulted in a growing population of children to be home with respiratory support. Care givers more likely to experience emotional stress and social isolation. OBJECTIVES: To describe the quality of life of parents with children on home ventilation and oxygen therapy and compare to controls. METHODS: It is a cross sectional descriptive study conducted in Respiratory Unit, Paediatric Institute, Hospital Kuala Lumpur, Malaysia. The study population are parents of children on home ventilation and long term oxygen therapy recruited between 1st of January 2015 till 31st December 2015. The controls are parents of children with chronic lung condition without any form of support. Quality of life is measured using the Depression Anxiety and Stress Scale (DASS ) 21 and PedsQL Family Impact Module 2.0 questionnaire. RESULTS: Eighty six parents participated in the study, of which 43 are controls. In the study population, 28 of them are parents of children on home oxygen therapy, 13 children on CPAP/BIPAP and two children ventilated through tracheostomy. Data was analyzed using SPSS version 22.There was no significant difference in the scores between both groups in stress category (P =0.262), anxiety category (P =0.414) and depression (P=0.532) from the DASS 21 questionnaire. In the PedsQL Family Impact Module 2.0. questionnaire, quality of life measurements was significantly better in social function (P=0.014 , 95% CI -21.1, -2.5) and daily activity (P=0.04,95% CI -18.5, -0.5) in the control group compared to study group. CONCLUSION: The overall quality of life in children on home oxygen therapy and ventilation are the same to those without intervention in most categories.