A survey among parents regarding their understanding of respiratory syncytial virus (RSV) and other respiratory infections in preterm babies showed a highly established knowledge. Most parents consider RSV illness a very serious condition and identified nurses, doctors, and pamphlets as their primary sources of information.
The Canadian Premature Babies Foundation (CPBF), a parent-led organisation, strives to minimise the overwhelming challenges of families of preterm babies through the provision of evidence-based information. These educational mandates, and a partnership with Préma-Quebéc, a similar French charitable organisation, fuelled the development of the survey to evaluate parental knowledge of RSV and other respiratory illnesses in preterm infants. The goal was to understand the information gaps and share them with healthcare professionals to adapt and revise their respective programs.RSV is recognised as one of the leading causes of severe lower respiratory tract infection in infants. Many episodes of lower respiratory tract infections result in hospitalisation, and there have been many tragic deaths attributed to the advanced development of the illness. Preterm infants and newborns with some birth morbidities are high risk groups for RSV-related hospitalisation.
The questionnaire included 14 questions and was launched in February 2020 via the CPBF website and other social media channels. 583 responses were analysed. A significant proportion of the respondents were female (96.9%), most of them holding a university degree. The majority of respondents had given birth in a large urban hospital in the last five years, and their newborns had already been discharged from the hospital at the time of data collection.
Regarding the results on the basic knowledge of RSV, almost 98% of the participants had heard about RSV, and 86.3% believed that RSV illness was a very serious condition. More than 90% of the parents identified RSV-related bronchitis and pneumonia as the leading cause of hospitalisation in young children, and 77.4% were informed of the illness for the first time through health care professionals and pamphlets during their child’s NICU stay. The 22.6% who had known RSV before the hospital stay had received the information primarily from a healthcare professional, followed by friends, family, social media and internet searches.
From both the information given during NICU stays and other sources, the majority of parents felt they had the tools to prevent respiratory infections and to advocate for their children’s health. Nevertheless, almost half of the responding parents felt a sense of helplessness towards protecting their infant after discharge. Asking for the best possible way to educate new families with preterm infants, parents suggested strategies like information sessions, videos, websites and social media campaigns, aside from the traditional nurse-physician-family communication.
Acknowledging the cornerstones for parental education on RSV is essential to develop primary prevention strategies and reduce infection risk. Information pamphlets and online resources are helpful, but direct education through face-to-face or one-on-one communication with healthcare personnel about RSV is strongly preferred. Proper hand hygiene, breastfeeding, and most importantly, thorough knowledge about available measures like RSV-prophylaxis can substantially reduce the rate of hospitalisation. Organisations and governments must provide robust, up-to-date guidance on RSV and its prevention to educate healthcare professionals and increase parents’ confidence regarding the topic.
Paper available at: Neonatal Network,Vol 40
Full list of authors: Marianne Bracht, Fabiana Bacchini, Bosco Paes