The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: a prospective study

• Published in: Archives of disease in childhood Vol. 101; no. 7; pp. 620 - 627
• Main Authors: Seear, Michael, Kapur, Akshat, Wensley, David, Morrison, Kelly, Behroozi, Ariana
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd 01.07.2016; BMJ Publishing Group LTD
• Subjects: Activities of Daily Living; Adolescent; Airway management; Analysis; Attitude Change; Caregivers; Caregivers - psychology; Child; Child Health; Child, Preschool; Children; Children & youth; Chronic illnesses; Congenital Impairments; Cost of Illness; Dependents; Family (Sociological Unit); Female; Health aspects; Health Conditions; Home Nursing - psychology; Hospital costs; Humans; Infant; Informed Consent; Male; Medical Services; Medical technology; Numbers; Nursing; Ostomy; Patients; Pediatrics; Prospective Studies; Psychometrics; Quality of Life; Questionnaires; Respiration, Artificial - psychology; Socioeconomic Factors; Statistical Analysis; Tracheotomy; Ventilation; Workload; Workloads; British Columbia Canada; Canada; Multidisciplinary team-care; Patient perspective
• ISSN: 0003-9888; 1468-2044
• DOI: 10.1136/archdischild-2015-309796

BackgroundDespite the obvious challenges faced by families caring for children on home ventilation, there is surprisingly little research into the details of their daily lives. In particular, little is known about the quality of life of the child and caregiver plus the associated social and economic burdens of care.MethodsWe prospectively studied 90 families enrolled in a paediatric home ventilation service in British Columbia. In the clinic, we recorded demographic information, patient acuity score and quality of life for patient and caregiver using standardised questionnaires. Parents then monitored social and financial costs of care at home over the subsequent 8 weeks. These data were collected by telephone at 1 and 2 months.ResultsMost children led rich active lives. Camping trips, wheelchair sports and foreign travel were the norm, not the exception. Over 90% assessed the burden of care as mild or moderate. Government support covers medical expenses and home nursing (median 32 h/week, IQR 0–62.5 h). Monthly unreimbursed family expenses were low (median $87.7, IQR $15.3–$472). Despite this, nearly 25% of primary caregivers assessed burden of care as severe and over 50% had chronic illnesses requiring daily medication (principally depression, anxiety and arthritis). Quality of life for children or caregivers did not correlate with income or education.InterpretationHome ventilation of complex children is a successful strategy but it places significant strain on the primary caregiver. Specific attention to the physical and mental health of the caregiver should be an integral part of the management of home-ventilated children.Trial registration numberNCT01863992.