Understanding Policy Decisions and Their Implications Regarding Preventive Interventions for Respiratory Syncytial Virus (RSV) Infection in Canadian Infants: A Primer for Nurses.

Respiratory syncytial virus (RSV) is a leading cause of morbidity and hospitalization in young children, and prevention is the primary management strategy. At present, palivizumab, a monoclonal antibody providing immediate passive immunity, rather than a vaccine that induces active immunity, is the only preventive intervention used in routine practice internationally. In Canada, access varies across the country. Prophylaxis policies are mainly driven by cost-effectiveness analyses, and it is crucial that the full costs and benefits of any intervention are captured. Positive results from a new Canadian cost-effectiveness analysis of palivizumab will help address the current inequality in use while providing a framework for future models of RSV preventives. Nurses are the principal educators for parents about the risks of childhood RSV and optimal prevention via basic hygiene, behavioral and environmental measures, and seasonal prophylaxis. Nurses should be provided not only with regular, up-to-date, and accurate information on RSV and the clinical aspects of emerging interventions but be informed on the decision-making governing the use of preventive strategies.

Identifying the research, advocacy, policy and implementation needs for the prevention and management of respiratory syncytial virus lower respiratory tract infection in low- and middle-income countries.

Introduction: The high burden of respiratory syncytial virus (RSV) infection in young children disproportionately occurs in low- and middle-income countries (LMICs). The PROUD (Preventing RespiratOry syncytial virUs in unDerdeveloped countries) Taskforce of 24 RSV worldwide experts assessed key needs for RSV prevention in LMICs, including vaccine and newer preventive measures. Methods: A global, survey-based study was undertaken in 2021. An online questionnaire was developed following three meetings of the Taskforce panellists wherein factors related to RSV infection, its prevention and management were identified using iterative questioning. Each factor was scored, by non-panellists interested in RSV, on a scale of zero (very-low-relevance) to 100 (very-high-relevance) within two scenarios: (1) Current and (2) Future expectations for RSV management. Results: Ninety questionnaires were completed: 70 by respondents (71.4% physicians; 27.1% researchers/scientists) from 16 LMICs and 20 from nine high-income (HI) countries (90.0% physicians; 5.0% researchers/scientists), as a reference group. Within LMICs, RSV awareness was perceived to be low, and management was not prioritised. Of the 100 factors scored, those related to improved diagnosis particularly access to affordable point-of-care diagnostics, disease burden data generation, clinical and general education, prompt access to new interventions, and engagement with policymakers/payers were identified of paramount importance. There was a strong need for clinical education and local data generation in the lowest economies, whereas upper-middle income countries were more closely aligned with HI countries in terms of current RSV service provision. Conclusion: Seven key actions for improving RSV prevention and management in LMICs are proposed.

A Survey of Parental Knowledge of Respiratory Syncytial Virus and Other Respiratory Infections in Preterm Infants.

PURPOSE: Evaluate parental knowledge of respiratory syncytial virus (RSV) and other respiratory infections in preterm infants. DESIGN: Survey. SAMPLE: Five hundred and eighty-three parents of preterm infants with generalized, Canadian provincial representation. MAIN OUTCOME: Knowledge of RSV infection, sources of information, and parental understanding of disease risk. RESULTS: 97.9 percent (571/583) of the parents had heard about RSV, since they all had a preterm infant. Sixty-one percent reported having good knowledge of RSV; 19.4 percent had very good knowledge; 19.7 percent had little or no awareness of RSV-related infection. Most (86.3 percent) believed that RSV illness was a very serious condition; 13 percent recognized that it could be a major problem for their child. Principal sources of information were the nurse, doctor and pamphlets. Over 480 participants cited 3 or more sources of additional information-Internet, social media platforms, and educational sessions. Respiratory syncytial virus prophylaxis was a priority, but knowledge regarding the eligibility criteria for prophylaxis is essential.

Effectiveness of Family Integrated Care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial.

BACKGROUND: Despite evidence suggesting that parent involvement was beneficial for infant and parent outcomes, the Family Integrated Care (FICare) programme was one of the first pragmatic approaches to enable parents to become primary caregivers in the neonatal intensive care unit (NICU). We aimed to analyse the effect of FICare on infant and parent outcomes, safety, and resource use. METHODS: In this multicentre, cluster-randomised controlled trial, we stratified 26 tertiary NICUs from Canada, Australia, and New Zealand by country and size, and assigned them, using a computer-generated random allocation sequence, to provide FICare or standard NICU care. Eligible infants were born at 33 weeks' gestation or earlier, and had no or low-level respiratory support; parents gave written informed consent for enrolment. To be eligible, parents in the FICare group had to commit to be present for at least 6 h a day, attend educational sessions, and actively care for their infant. The primary outcome, analysed at the individual level, was infant weight gain at day 21 after enrolment. Secondary outcomes were weight gain velocity, high frequency breastfeeding (≥6 times a day) at hospital discharge, parental stress and anxiety at enrolment and day 21, NICU mortality and major neonatal morbidities, safety, and resource use (including duration of oxygen therapy and hospital stay). This trial is registered with ClinicalTrials.gov, number NCT01852695. FINDINGS: From Oct 1, 2012, 26 sites were randomly assigned to provide FICare (n=14) or standard care (n=12). One site assigned to FICare discontinued because of poor site enrolment. Parents and infants were enrolled between April 1, 2013, and Aug 31, 2015, with 895 infants being eligible in the FICare group and 891 in the standard care group. At day 21, weight gain was greater in the FICare group than in the standard care group (mean change in Z scores -0·071 [SD 0·42] vs -0·155 [0·42]; p<0·0002). Average daily weight gain was significantly higher in infants receiving FICare than those receiving standard care (mean daily weight gain 26·7 g [SD 9·4] vs 24·8 g [9·5]; p<0·0001). The high-frequency exclusive breastmilk feeding rate at discharge was higher for infants in the FICare group (279 [70%] of 396) than those in the standard care group (394 [63%] of 624; p=0·016). At day 21, parents in the FICare group had lower mean stress scores than did parents in the standard care group (2·3 [SD 0·8] vs 2·5 [0·8]; p<0·00043), and lower mean anxiety scores (70·8 [20·1] vs 74·2 [19·9]; p=0·0045). There were no significant differences between groups in the rates of the secondary outcomes of mortality, major morbidity, duration of oxygen therapy, and duration of hospital stay. Although the safety assessment was not completed, there were no adverse events. INTERPRETATION: FICare improved infant weight gain, decreased parent stress and anxiety, and increased high-frequency exclusive breastmilk feeding at discharge, which together suggest that FICare is an important advancement in neonatal care. Further research is required to examine if these results translate into better long-term outcomes for families. FUNDING: Canadian Institutes of Health Research Partnerships for Health System Improvement, and Ontario Ministry of Health and Long-Term Care.

Evaluation of the Family Integrated Care model of neonatal intensive care: a cluster randomized controlled trial in Canada and Australia.

BACKGROUND: Admission to the neonatal intensive care unit (NICU) may disrupt parent-infant interaction with adverse consequences for infants and their families. Several family-centered care programs promote parent-infant interaction in the NICU; however, all of these retain the premise that health-care professionals should provide most of the infant's care. Parents play a mainly supportive role in the NICU and continue to feel anxious and unprepared to care for their infant after discharge. In the Family Integrated Care (FICare) model, parents provide all except the most advanced medical care for their infants with support from the medical team. Our hypothesis is that infants whose families complete the FICare program will have greater weight gain and better clinical and parental outcomes compared with infants provided with standard NICU care. METHODS/DESIGN: FICare is being evaluated in a cluster randomized controlled trial among infants born at ≤ 33 weeks' gestation admitted to 19 Canadian, 6 Australian, and 1 New Zealand tertiary-level NICU. Trial enrollment began in April, 2013, with a target sample size of 675 infants in each arm, to be completed by August, 2015. Participating sites were stratified by country, and by NICU size within Canada, for randomization to either the FICare intervention or control arm. In intervention sites, parents are taught how to provide most of their infant's care and supported by nursing staff, veteran parents, a program coordinator, and education sessions. In control sites standard NICU care is provided. The primary outcome is infants' weight gain at 21 days after enrollment, which will be compared between the FICare and control groups using Student's t-test adjusted for site-level clustering, and multi-level hierarchical models accounting for both clustering and potential confounders. Similar analyses will examine secondary outcomes including breastfeeding, clinical outcomes, safety, parental stress and anxiety, and resource use. The trial was designed, is being conducted, and will be reported according to the CONSORT 2010 guidelines for cluster randomized controlled trials. DISCUSSION: By evaluating the impact of integrating parents into the care of their infant in the NICU, this trial may transform the delivery of neonatal care. TRIAL REGISTRATION: NCT01852695 , registered December 19, 2012.

A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit.

BACKGROUND: We have developed a Family Integrated Care (FIC) model for use in a neonatal intensive care unit (NICU) where parents provide most of the care for their infant, while nurses teach and counsel parents. The objective of this pilot prospective cohort analytic study was to explore the feasibility, safety, and potential outcomes of implementing this model in a Canadian NICU. METHODS: Infants born ≤ 35 weeks gestation, receiving continuous positive airway pressure or less respiratory support, with a primary caregiver willing and able to spend ≥ 8 hours a day with their infant were eligible. Families attended daily education sessions and were mentored at the bedside by nurses. The primary outcome was weight gain, as measured by change in z-score for weight 21 days after enrolment. For each enrolled infant, we identified two matched controls from the previous year's clinical database. Differences in weight gain between the two groups were analyzed using a linear mixed effects multivariable regression model. We also measured parental stress levels using the Parental Stress Survey: NICU, and interviewed parents and nurses regarding their experiences with FIC. RESULTS: This study included 42 mothers and their infants. Of the enrolled infants, matched control data were available for 31 who completed the study. The rate of change in weight gain was significantly higher in FIC infants compared with control infants (p < 0.05). There was also a significant increase in the incidence of breastfeeding at discharge (82.1 vs. 45.5%, p < 0.05). The mean Parental Stress Survey: NICU score for FIC mothers was 3.06 ± 0.12 at enrolment, which decreased significantly to 2.30 ± 0.13 at discharge (p < 0.05). Feedback from the parents and nurses indicated that FIC was feasible and appropriately implemented. CONCLUSIONS: This study suggests that the FIC model is feasible and safe in a Canadian healthcare setting and results in improved weight gain among preterm infants. In addition, this innovation has the potential to improve other short and long-term infant and family outcomes. A multi-centre randomized controlled trial is needed to further evaluate the efficacy of FIC in the Canadian context.

Implementing family-integrated care in the NICU: a parent education and support program.

The purpose of this study was to develop, implement, and evaluate a parent education and support program that enhances family-integrated care in a Canadian neonatal intensive care unit (NICU). A total of 39 mothers of infants born at 35 or fewer weeks' gestation were enrolled in the pilot program. We examined the development, implementation, and qualitative assessment of the education component of a family-integrated care program. We enrolled in groups of 4 or 5, the study mothers agreed to attend daily educational sessions, provide care for their infants for at least 8 hours daily, and participate in medical rounds. The educational sessions were provided by staff and veteran parents to assist parents' development of confidence in providing caregiving skills and assuming the role of a primary caregiver for their infants as they moved closer to discharge. Effectiveness of the program was evaluated through anecdotal feedback and a formal evaluation process at discharge. The results indicated that the mothers were provided with the tools to parent their infants in the NICU, recognize their own strengths, increase their problem-solving strategies, and emotionally prepare them to take their infant home. Feedback from the participants provided direction to adapt the program to provide optimal parent support and education. Parental education is a valued and vital component of family-integrated care in the NICU.

Strategies for reducing the risk of respiratory syncytial virus infection in infants and young children: a Canadian nurses' perspective.

Respiratory syncytial virus (RSV) infections are prevalent globally and can cause substantial morbidity in infants and young children. The virus is easily transmitted by direct hand-to-hand contact and can lead to serious respiratory disease and hospitalization, particularly in premature infants and children with certain medical conditions. Educating families with young children, especially those in remote rural regions, regarding the potential adverse health outcomes of RSV infection and measures to reduce the risk of transmitting or acquiring RSV has been a key focus of the health care system in Canada. Geographic, cultural, and socioeconomic factors present formidable challenges to the execution of this endeavor. Therefore, it is critical to develop and systematically implement effective educational programs for both families and health care providers. In Canada, nurses play a critical role in education and counseling. In this review, we share our perspectives and suggest empirical practices that may be applicable worldwide.

Identifying and ensuring optimal care for all children at risk of developing serious respiratory syncytial virus disease: a Canadian nurses' perspective.

Globally, respiratory syncytial virus (RSV) infection causes substantial morbidity in infants and young children, particularly those with specific risk factors (e.g., prematurity, chronic lung and congenital heart disease). Supportive measures are the mainstay of care for RSV-related disease. In the absence of medical treatments, RSV prophylaxis (RSVP) with palivizumab is recommended for high-risk patients to help reduce the risk of developing serious disease. Geographic distances, language and cultural barriers, and other factors can impede effective education of caregivers regarding the potential impact of RSV disease and benefits of RSVP compliance. We present our experiences developing successful Canadian RSVP programs, organized through a dedicated coordinator or small group of health care staff. These programs focus on identifying all infants and young children eligible for RSVP, effectively educating health care staff and family caregivers, developing educational tools that consider language and cultural factors, and interdisciplinary collaboration and networking throughout the health care system.

Practical resources for nurses and other health care providers involved in the care of children at risk for respiratory syncytial virus infection.

Health care staff and families with young children are often unware of the ease of respiratory syncytial virus (RSV) spread and potential clinical consequences of serious respiratory illness. Successful Canadian RSV prophylaxis (RSVP) programs (a) provide practical educational resources on RSV and respiratory disease that consider language and cultural barriers; (b) develop policies to identify all children eligible for RSVP with palivizumab; (c) emphasize compliance with RSVP, particularly during patient transfer between hospitals, community clinics, and remote outpost centers; and (d) establish collaborative networks to help ensure optimum RSVP compliance for all high-risk children. Herein, we share practical resources and key educational references for counseling of caregivers with infants or young children at risk for RSV infection, and health care providers participating in RSVP program development.

Impact of respiratory syncytial virus: the nurse's perspective.

Respiratory syncytial virus (RSV) is a highly contagious virus, and is the major cause of lower respiratory tract infections in infants and toddlers worldwide. RSV infection poses serious health risks to young children during the first 2 years of life. Several infant populations have been classified as high risk, and additional risk factors are known to increase the likelihood of severe RSV infection. Treatment for active RSV infection is limited to the symptoms of infection rather than the underlying cause; therefore, it is critical to reduce the transmission of RSV. As nurses, we highlight the importance of educating healthcare professionals, both in the hospital and community settings, as well as parents and other caregivers about the risks and outcomes associated with RSV infection, and necessary measures to decrease the risk of infection. We also highlight the importance of the successful identification of those children who are at high risk of RSV infection. RSV prophylaxis (RSVP) with palivizumab has been shown to improve clinical outcome in infants who are considered high risk compared with those who have not received RSVP. The failure of healthcare staff and primary caregivers to protect children against an RSV infection can have lasting detrimental effects on the health and lives of affected children and their families.

A patient-centric, Internet-based application for the data management of a multi-centre respiratory syncytial virus prophylaxis program.

The success of respiratory syncytial virus (RSV) prophylaxis programs is partially dependent upon meticulous tracking of at risk infants, and excellent data management. We designed and built an integrated, shared, user-driven but infant-centric data management application that enables an infants healthcare provider to determine an infants RSV prophylaxis status throughout the RSV season. The security and confidentiality of each infants information is protected by rigorous integrity constraints that have been integrated into the database schema.

Development, implementation, and evaluation of a community- and hospital-based respiratory syncytial virus prophylaxis program.

PURPOSE: To implement and deliver a respiratory syncytial virus prophylaxis (RSVP) program in response to the Canadian Pediatric Society recommendations. METHODS: A novel program was designed to provide inpatient RSVP for at-risk infants cared for in 1 tertiary care newborn intensive care unit (NICU). This inpatient program was part of a coordinated approach to RSVP, designed and implemented by 3 hospitals. An RSVP program logic model was created and used by a multidisciplinary team to evaluate the in-house program and identify areas of program activity requiring improvement. RESULTS: Following the 2000 to 2001 RSV season, a compliance and outcomes audit was performed in the tertiary center; 193 infants were enrolled in the RSVP program and 162 infants had received RSVP in the NICU [Mean = 1.64 doses]. Telephone follow-up with the parents of discharged infants identified that 159 infants (98%) had successfully completed their full course of RSVP. Using the RSVP program logic model, 5 areas for program improvement were identified including infant recruitment, patient transfer/discharge processes, product procurement, preparation/distribution/administration of doses, and healthcare team communication. CONCLUSIONS: Interdisciplinary collaboration is an important factor in the success of the RSVP program and has supported a consistent model of care for the delivery of RSVP. The program logic model provided a useful structure to systematically review the RSVP program in this organization.

Cultural differences and parental responses to the preterm infant at risk: strategies for supporting families.

Parenting a preterm infant at risk for developmental disabilities can be a profoundly stressful experience. For parents from minority cultures, language barriers and cultural differences can increase feelings of uncertainty and inability to cope. Research suggests that cultural differences influence not only parents' emotional responses to and perceptions of disability, but also their utilization of services and their interaction with health professionals. The Neonatal Intensive Care Unit of Mount Sinai Hospital (MSH), Toronto, provides care to a culturally diverse community, and approximately 45 percent of patients receiving care represent minority ethnic groups. Although efforts to provide culturally sensitive care have been made, they have tended to be isolated initiatives lacking consistency and coordination. This article describes the initiation and development of a multicultural program at MSH to support families of infants at risk for developmental disabilities. This article provides valuable guidance to other neonatal units that are attempting to support parents from diverse cultural groups.