Impact of COVID-19-related restricted family presence policies on Canadian pediatric intensive care unit clinicians: a qualitative study.

PURPOSE: Pediatric intensive care units (PICUs) worldwide restricted family presence in response to the COVID-19 pandemic. We aimed to explore the experiences and impact of restricted family presence policies on Canadian PICU clinicians. METHODS: We conducted a qualitative study that followed an interpretive phenomenological design. Participants were PICU clinicians providing direct patient care in Canada during periods of COVID-19-related restricted family presence. We purposively sampled for maximum variation among survey participants who consented to be contacted for further research on the same topic. In-depth interviews were conducted remotely via telephone or video-call, audio-recorded, and transcribed. Interviews were inductively coded and underwent thematic analysis. Proposed themes were member-checked by interviewees. RESULTS: Sixteen PICU clinicians completed interviews. Interviewees practiced across Canada, represented a range of disciplines (eight nurses, two physicians, two respiratory therapists, two child life specialists, two social workers) and years in profession (0-34 years). We identified four themes representing the most meaningful aspects of restricted family presence for participants: 1) balancing infection control and family presence; 2) feeling disempowered by hospital and policy-making hierarchies; 3) empathizing with family trauma; and 4) navigating threats to the therapeutic relationship. CONCLUSION: Pediatric intensive care unit clinicians were impacted by restricted family presence policies during the COVID-19 pandemic. These policies contributed to feelings of disempowerment and challenged clinicians' perceived ability to provide the best family-centred care possible. Frontline expertise should be incorporated into the design and implementation of policies to best support family-centred care in any context and minimize risks of moral distress for PICU clinicians.

RéSUMé: OBJECTIF: Les unités de soins intensifs pédiatriques (USIP) du monde entier ont restreint la présence des familles en réponse à la la pandémie de COVID-19. Notre objectif était d'explorer les expériences et l'impact des politiques de restriction de la présence familiale sur les clinicien·nes des USIP canadiennes. MéTHODE: Nous avons mené une étude qualitative qui a suivi un plan phénoménologique interprétatif. Les participant·es étaient des clinicien·nes des USIP qui dispensaient des soins directs aux patient·es au Canada pendant les périodes de présence restreinte des familles en raison de la COVID-19. Nous avons délibérément échantillonné pour obtenir une variation maximale parmi les participant·es à l'enquête qui ont accepté d'être contacté·es pour d'autres recherches sur le même sujet. Des entretiens approfondis ont été menés à distance par téléphone ou par appel vidéo, enregistrés et transcrits. Les entretiens ont été codés de manière inductive et ont fait l'objet d'une analyse thématique. Les thèmes proposés ont été contrôlés par membre par les personnes interrogées. RéSULTATS: Seize cliniciennes et cliniciens des USIP ont passé des entrevues. Les personnes interrogées exerçaient partout au Canada, représentaient un éventail de disciplines (huit infirmiers et infirmières, deux médecins, deux inhalothérapeutes, deux spécialistes du milieu de l'enfant, deux travailleuses et travailleurs sociaux) et d'années d'expérience professionnelle (de 0 à 34 ans). Nous avons identifié quatre thèmes représentant les aspects les plus significatifs de la présence restreinte de la famille pour les participant·es : 1) l'équilibre entre la prévention des infections et la présence de la famille; 2) le sentiment d'être dépossédé·e par les hiérarchies de l'hôpital et de ne pas pouvoir participer à l'élaboration des politiques; 3) le sentiment d'empathie à l'égard des traumatismes familiaux; et 4) la réponse aux menaces qui ont pesé sur la relation thérapeutique. CONCLUSION: Les cliniciens et cliniciennes des unités de soins intensifs pédiatriques ont été touché·es par les politiques de restriction de la présence familiale pendant la pandémie de COVID-19. Ces politiques ont contribué à un sentiment d'impuissance et ont remis en question la capacité perçue des équipes à fournir les meilleurs soins possibles axés sur la famille. L'expertise de première ligne devrait être intégrée à la conception et à la mise en œuvre des politiques afin de mieux soutenir les soins axés sur la famille dans n'importe quel contexte et de minimiser les risques de détresse morale pour les cliniciennes et cliniciens des USIP.

A survey of pediatric intensive care unit clinician experience with restricted family presence during COVID-19.

PURPOSE: Limiting family presence runs counter to the family-centred values of Canadian pediatric intensive care units (PICUs). This study explores how implementing and enforcing COVID-19-related restricted family presence (RFP) policies impacted PICU clinicians nationally. METHODS: We conducted a cross-sectional, online, self-administered survey of Canadian PICU clinicians to assess experience and opinions of restrictions, moral distress (Moral Distress Thermometer, range 0-10), and mental health impacts (Impact of Event Scale [IES], range 0-75 and attributable stress [five-point Likert scale]). For analysis, we used descriptive statistics, multivariate regression modelling, and a general inductive approach for free text. RESULTS: Representing 17/19 Canadian PICUs, 368 of 388 respondents (94%) experienced RFP policies and were predominantly female (333/368, 91%), English speaking (338/368, 92%), and nurses (240/368, 65%). The mean (standard deviation [SD]) reported moral distress score was 4.5 (2.4) and was associated with perceived differential impact on families. The mean (SD) total IES score was 29.7 (10.5), suggesting moderate traumatic stress with 56% (176/317) reporting increased/significantly increased stress from restrictions related to separating families, denying access, and concern for family impacts. Incongruence between RFP policies/practices and PICU values was perceived by 66% of respondents (217/330). Most respondents (235/330, 71%) felt their opinions were not valued when implementing policies. Though respondents perceived that restrictions were implemented for the benefit of clinicians (252/332, 76%) and to protect families (236/315, 75%), 57% (188/332) disagreed that their RFP experience was mainly positive. CONCLUSION: Pediatric intensive care unit-based RFP rules, largely designed and implemented without bedside clinician input, caused increased psychological burden for clinicians, characterized as moderate moral distress and trauma triggered by perceived impacts on families.

RéSUMé: OBJECTIF: Limiter la présence de la famille va à l'encontre des valeurs centrées sur la famille des unités de soins intensifs pédiatriques (USIP) canadiennes. Cette étude explore comment la mise en œuvre et l'application des politiques de restriction de la présence familiale liées à la COVID-19 ont eu une incidence sur les cliniciennes et cliniciens des USIP à l'échelle nationale. MéTHODE: Nous avons mené un sondage transversal, en ligne et auto-administré auprès des cliniciens et cliniciennes des USIP canadiennes afin d'évaluer leur expérience et opinions sur les restrictions, la détresse morale (thermomètre de détresse morale, intervalle de 0 à 10) et les impacts sur la santé mentale (échelle d'impact des événements [EIE], intervalle de 0 à 75, et le stress qui peut y être attribué [échelle de Likert à cinq points]). Pour l'analyse, nous avons utilisé des statistiques descriptives, une modélisation de régression multivariée et une analyse inductive générale pour le texte libre. RéSULTATS: Représentant 17/19 USIP canadiennes, 368 des 388 personnes répondantes (94 %) ont vécu des politiques de restriction de la présence familiale et étaient principalement des femmes (333/368, 91 %), anglophones (338/368, 92 %) et infirmières (240/368, 65 %). Le score moyen (écart type [ET]) rapporté de détresse morale était de 4,5 (2,4) et était associé à l'impact différentiel perçu sur les familles. Le score moyen (ET) total de l'EIE était de 29,7 (10,5), ce qui suggère un stress traumatique modéré, 56 % (176/317) des personnes répondantes déclarant une augmentation ou une augmentation significative du stress associé aux restrictions liées à la séparation des familles, au refus d'accès et à la préoccupation pour les impacts familiaux. L'incongruité entre les politiques et les pratiques de restriction des visites familiales et les valeurs des USIP était perçue par 66 % des personnes répondantes (217/330). La plupart (235/330, 71 %) estimaient que leurs opinions n'étaient pas prises en compte lors de la mise en œuvre de politiques. Bien que les répondant·es aient perçu que les restrictions avaient été mises en œuvre dans l'intérêt des cliniciens et cliniciennes (252/332, 76 %) et pour protéger les familles (236/315, 75 %), 57 % (188/332) n'étaient pas d'accord pour dire que leur expérience de la restriction des visites familiales était principalement positive. CONCLUSION: Les règles de restriction de la présence familiale dans les unités de soins intensifs pédiatriques, en grande partie conçues et mises en œuvre sans l'avis du personnel clinique au chevet des patient·es, ont entraîné une augmentation du fardeau psychologique pour le personnel clinique, caractérisée par une détresse morale modérée et un traumatisme déclenché par des répercussions perçues sur les familles.

"I want to be there. I have to be there.": Parents' perceived barriers and facilitators to bedside presence in the pediatric intensive care unit.

Introduction: Parental presence at the bedside during a stressful pediatric intensive care unit (PICU) admission may improve child comfort, reduce parental anxiety, and enable family engagement. We performed this study to identify factors that parents perceive impact their capability, opportunity, and motivation to be at the bedside in PICU. Methods: We conducted a qualitative descriptive study using semi-structured interviews based on the Theoretical Domains Framework (TDF). We included parents of children admitted to the PICU for at least 24 h at IWK Health in Nova Scotia, Canada. Interviews were coded independently by two researchers using a directed content approach based on the TDF. We generated themes and subthemes, with the subthemes identified as factors impacting parental presence, and assigned TDF domains to each of the subthemes. Results: Fourteen primary caregivers (8 mother figures, 6 father figures) participated in 11 interviews. The factors associated with parental presence were captured by 6 themes: Understanding the Medicalized Child; Maintaining the Parent Role; Life Beyond the Hospital; Parental Intrinsic Responses and Coping; Support Structures; and The PICU Environment. Fifty-two barriers and enablers were identified within 13 TDF domains; 10 TDF domains were determined to be relevant to parental presence, which may be used to guide design of future interventions. Participants emphasized the importance of self-care to enable them to remain physically at their child's bedside and to be engaged in their care. Conclusions: Parents perceive multiple factors within 6 themes act as barriers or enablers to presence with their critically ill child in the PICU. Guided by relevant TDF domains, interventions may be designed to optimize presence, particularly engaged presence, which may improve health-related outcomes of children and their parents.

"We Aren't Meant to Go Through the Hardest Parts of Our Lives Alone": Family Experience With Restricted PICU Presence During the COVID-19 Pandemic.

CONTEXT: PICUs across Canada restricted family presence (RFP) in response to the COVID-19 pandemic from allowing two or more family members to often only one family member at the bedside. The objective of this study was to describe the experiences and impact of RFP on families of critically ill children to inform future policy and practice. HYPOTHESIS: RFP policies negatively impacted families of PICU patients and caused moral distress. METHODS AND MODELS: National, cross-sectional, online, self-administered survey. Family members of children admitted to a Canadian PICU between March 2020 and February 2021 were invited to complete the survey. RFP-attributable distress was measured with a modified distress thermometer (0-10). Closed-ended questions were reported with descriptive statistics and multivariable linear regression assessed factors associated with RFP-attributable distress. Open-ended questions were analyzed using inductive content analysis. RESULTS: Of 250 respondents who experienced RFP, 124 (49.6%) were restricted to one family member at the bedside. The median amount of distress that families attributed to RFP policies was 6 (range: 0-10). Families described isolation, removal of supports, and perception of trauma related to RFP. Most families (183, 73.2%) felt that policies were enforced in a way that made them feel valued by PICU clinicians, which was associated with less RFP-attributable distress. Differential impact was seen where families with lower household income indicated higher RFP-attributable distress score (2.35; 95% CI, 0.53-4.17; p = 0.03). Most respondents suggested that future policies should allow at least two family members at the bedside. INTERPRETATIONS AND CONCLUSIONS: Families of children admitted to PICUs during the COVID-19 pandemic described increased distress, trauma, and removal of supports due to RFP policies. Vulnerable families showed an increased odds of higher distress. Healthcare professionals played an important role in mitigating distress. Allowance of at least two family members at the bedside should be considered for future policy.

Family presence in Canadian PICUs during the COVID-19 pandemic: a mixed-methods environmental scan of policy and practice.

BACKGROUND: Despite their broad commitment to family-centred care, children's hospitals and associated pediatric intensive care units (PICUs) restricted family presence during the COVID-19 pandemic. This study aimed to describe family presence policies and practices in Canadian PICUs from March to May 2020, and their evolution by August to December 2020. METHODS: We conducted an environmental scan of family presence policies and restrictions in all 19 Canadian PICUs using 2 methods. We conducted a literature review of public-facing visitation policy documents in June 2020 using a standardized data extraction form. We also administered a cross-sectional survey of PICU leadership (managers and physician chiefs) between August and December 2020 by telephone or videoconferencing. We used inductive content analysis to code qualitative data, generating summative count data. We analyzed quantitative data descriptively. RESULTS: As part of the literature search, we collected 2 (12%) PICU-specific, 14 (82%) pediatric-specific and 1 (6%) hospital-wide visitation policy documents from the early pandemic. One policy document provided guidance on all of the policy elements sought; the number of enabled caregivers was not included in the documents for 7 of 19 units (37%). All 19 Canadian PICUs were represented among the 24 survey respondents (15 physician chiefs and 9 operations or clinical managers). Before the COVID-19 pandemic, all units allowed the presence of 2 or more family members. Early in the pandemic, reported practices limited the number of adult caregivers for patients without SARS-CoV-2 infection to 1 (n = 21/24, 88%) or 2 (n = 3/24, 12%); all units prohibited siblings. Some centres restricted caregivers from switching bedside presence with one another (patients without SARS-CoV-2 infection: n = 16/23, 70%; patients with confirmed or suspected SARS-CoV-2 infection: n = 20/23, 87%); leaving their child's PICU room (patients without SARS-CoV-2 infection: n = 1/24, 4%; patients with confirmed or suspected SARS-CoV-2 infection: n = 16/24, 67%); and joining in-person rounds (patients without SARS-CoV-2 infection: n = 9/22, 41%; patients with confirmed or suspected SARS-CoV-2 infection: n = 17/22, 77%). All respondents endorsed policy exceptions during end-of-life care. Some reported policies and practices were adapted over the study period. INTERPRETATION: Early COVID-19-related family presence policies in Canadian PICUs varied among centres. Although some centres adapted policies and practices, this study revealed ongoing potential threats to family centred care at the mid-pandemic stage.

Parental presence at the bedside of critically ill children in the pediatric intensive care unit: A scoping review.

Parental presence at the bedside (PPB) of critically ill children in the pediatric intensive care unit (PICU) is necessary for operationalizing family-centred care. Previous evidence syntheses emphasize parent-healthcare provider interactions at rounds and resuscitation; our focus is the parent-child dyad. Prior to embarking on further study, we performed a scoping review to determine the breadth and scope of the literature addressing PPB of critically ill children in the PICU. We searched five online databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, and PSYCHINFO) and the grey literature to identify English and French reports from January 1960 to June 2020 addressing physical parental presence with children (birth to 18 years) in intensive care units, without limitation by methodology. Screening, reference selection, and data extraction were performed by two independent reviewers. Data were extracted into a researcher-designed tool. We identified 204 publications (81 quantitative, 68 qualitative, 22 mixed methods, and 9 descriptive case or practice change studies, and a further 24 non-study reports). PPB was directly assessed in 78 (38%) reports, and was the primary objective in 64 (31%). Amount or quality of presence was addressed by 114 reports, barriers and enablers by 152 sources, and impacts and outcomes by 134 sources. While only 6 reports were published in the first two decades of our search (1960-1980), 17 reports were published in 2019 alone. Conclusions: A relatively large body of literature exists addressing PPB of critically ill children. Separate systematic evidence syntheses to assess each element of PPB are warranted. Scoping review protocol registration: Open science framework, protocol nx6v3, registered 9-September-2019. What is Known: • Parental presence at the bedside of critically ill children must be enabled to facilitate family centeredness in care. • Systematic evidence syntheses have focused on parental presence at rounds or resuscitation, rather than with the child throughout the intensive care journey. What is New: • Many reports (n=204) address parental presence at the bedside in the pediatric intensive care unit, though most do as incidental findings • Identifies studies addressing key elements of parental presence in the PICU including barriers and enablers to, amount and quality of, and impact and outcomes of parental presence, and demonstrates trends over time and geography.