Abstract
Caring for infants or young children with a respiratory infection causes difficulties for the child’s caregiver and family. Some respiratory infections, such as Respiratory Syncytial Virus (RSV), can produce severe symptoms that require hospitalization or complex treatment at home. The aim of this literature review was to identify and summarize evidence in peer-reviewed and ‘grey’ literature regarding the burden for caregivers of caring for a child with RSV infection. A search of Ovid, Google Scholar and conference proceedings yielded 8 qualitative and 7 quantitative publications related to caregiver burden in RSV and other respiratory infections. Four online blogs and three online forums written by parents of children with RSV infection were qualitatively analyzed. Seven qualitative studies with RSV experts and parents of children with RSV infection also were qualitatively analyzed using thematic analysis and coded using AtlasTi. Eight domains and multiple sub-concepts within each domain were identified as burdens associated with caring for a child with RSV infection: work (e.g. missing work to care for the child), activities of daily living (e.g. disruptions to daily routine), physical functioning (e.g. disturbed sleep), emotional well-being (e.g. feeling worried or scared), social life (e.g. missing social activities or time with friends), family relationships (e.g. disruptions to family routines and activities), relationships with healthcare professionals (e.g. adequacy of information and advice from healthcare professionals), and financial impacts (e.g. cost of treatment/equipment, lost income due to missed work). These analyses found that the strain of caring for a child with RSV infection is multifaceted. Effective treatment or prevention of pediatric respiratory illnesses could reduce or eliminate caregiver burden. Future studies should develop and include a caregiver burden assessment to increase our understanding of the social impact of RSV on families and potential value of RSV treatment on caregiver burden.
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