Addressing Barriers and Facilitators to Post-PICU Shared Care: Insights from British Columbia.

Abstract

Background: The sequelae of surviving a critical illness and admission to a Pediatric Intensive Care Unit (PICU) is called Post-Intensive Care Syndrome in Pediatrics (PICS-p). Survivors experiencing PICS-p may require ongoing comprehensive follow-up care. In British Columbia (BC), Canada, the province’s extensive land mass and sparsely populated regions, and the centralized location of the quaternary and tertiary PICUs complicate access to specialized post-PICU care, highlighting the need for a shared-care model between PICU specialists and community providers.

Objective: This study explored the awareness of PICS-p among community pediatricians, general practitioners (GPs), and nurse practitioners (NPs) in BC and perceived barriers and facilitators to a proposed shared care model.

Methods: An adapted cross-sectional survey was distributed to pediatricians, general practitioners (GPs), and primary care nurse practitioners (NPs) across BC. Data were analyzed using descriptive statistics and chi-square testing, with thematic analysis applied to free-text responses.

Results: Among 113 respondents, pediatricians (48%) were the largest group, followed by GPs (37%) and NPs (15%). Most respondents (75%) were aware of PICS-p, with significant differences in awareness between pediatricians and GPs/NPs. Key barriers to providing follow-up care were identified. Nearly all respondents (98%) supported a shared-care model, though concerns about information sharing were noted.

Conclusion: While BC community healthcare providers demonstrate substantial awareness of PICS-p, significant barriers limit effective post-PICU care. Addressing these challenges through improved communication, resource access, and a shared-care model is essential for optimizing care for pediatric critical illness survivor.

Keywords: Canada, Post-Intensive Care Syndrome, Intensive Care, Pediatrics, Family Nurse Practitioners, Primary Care Providers.

Key Points and Clinical/Research Implications

Barriers to Post-PICU Care

Community providers (paediatricians, general practitioners, and nurse practitioners) in British Columbia (BC) face significant barriers to providing effective post-PICU care, including communication breakdowns with PICU specialists, limited resources (especially in rural areas), and a lack of established guidelines for managing PICS-p. Addressing these barriers is crucial for improving long-term outcomes and care needs for patients and their families post-PICU.

Need for a Shared-Care Model

Strong support (98% of surveyed providers) exists for implementing a proposed shared-care model to bridge the gap between PICU specialists and community providers. This model has the potential to enhance continuity of care for paediatric patients recovering from critical illness by supporting collaboration and improving information-sharing systems.

Implications for Policy and Practice

Our findings highlight the need for PICU nurse leaders to advocate for the implementation of shared-care models between PICU specialists and community providers with the goal of improving access to specialized care in rural and underserved areas. Future research will focus on piloting and refining these models, particularly in diverse geographical contexts like BC.

Background

The sequelae associated with Post Intensive Care Syndrome-paediatrics (PICS-p) encompass physical, emotional and cognitive morbidity in children recovering from a critical illness (Manning et al., 2018). Conditions such as post-traumatic stress, neurodevelopmental delays, fatigue, and muscle weakness necessitate comprehensive follow-up care for paediatric intensive care unit survivors (de Sonnaville et al., 2023; Ducharme-Crevier et al., 2021; Kachmar et al., 2018; Long & Fink, 2021; Rennick et al., 2014; Woodruff & Choong, 2021). The impact of a Paediatric Intensive Care Unit (PICU) admission on families is accounted for within the PICS-p framework (Manning et al., 2018); parental emotional disturbances and Post Traumatic Stress Disorder  (PTSD) are identified risks post-PICU discharge, which can persist for several years, reflective of the unique interconnectedness of the parent and child’s experiences (Erçin-Swearinger et al., 2022; Nelson & Gold, 2012; Nelson et al., 2019; Rennick et al., 2021). Therefore, follow-up services must encompass the child and family due to the complex and long-term nature of recovery (Curley et al., 2024; Dannenberg et al., 2022; Long & Fink, 2021; Manning et al., 2018; Pinto et al., 2017).

The PICS-p recovery process is not linear or homogenous, likely due to the medical and socially constructed nature of the experience, which is influenced by cultural, political, economic, and historical relations (Andrist et al., 2024; Colville & Pierce, 2012; Daughtrey et al., 2022; Epstein et al., 2014; Rini et al., 2008). Therefore, the dynamic interplay between the individual, their family, and broader social systems influence the child’s recovery (Rahmaty et al., 2023). Family resources and access to specialist healthcare services are crucial in shaping the recovery trajectory (Kachmar et al., 2022; Pinto et al., 2017; Rahmaty et al., 2023). For these reasons, a shared care model between PICU specialists and community providers could address the current care gaps.

In British Columbia (BC), Canada, children may be admitted to either the province’s quarternary PICU at British Columbia Children’s Hospital (BCCH), or the tertiary PICU at Victoria General Hospital (VGH), both located in the south west of the Province. Geographically[1], BC covers an area of just under 1 million Km² (Government of British Columbia, 2024), which makes accessing specialist care challenging following discharge. Within the bioecological model of human development (Bronfenbrenner & Morris, 2006), primary care providers (e.g., general practitioners [GPs] and nurse practitioners [NPs]) and consultant community paediatricians, influence child development and recovery from critical illness at a meso-level[2] (Bronfenbrenner, 1994; Bronfenbrenner & Morris, 2006; Rahmaty et al., 2023).

Due to the need for ongoing support for health-related changes post-PICU (Ong et al., 2016; Pinto et al., 2017) and the undefined length of follow-up for this vulnerable population (Long & Fink, 2021; Woodruff & Choong, 2021), a PICU project team at BCCH, collaborating with PICU specialists from VGH and Child Health BC (CHBC)[3], collectively identified as PICACHU[4] project team, proposed a shared-care model between PICU specialists and community providers. Shared-care models of post-PICU follow-up are under investigation in other parts of the world (Long et al., 2022). To determine the possibility of a similar model in BC, the aim of this study was to identify barriers and facilitators of a proposed shared care model and community providers’ awareness to manage the sequelae of PICS-p. This study fulfils the objectives of the PICACHU study (Dunphy et al., 2024), which aims to develop a shared care post-PICU follow-up service through a co-design process. Therefore, this study’s objectives were to survey community paediatricians, GPs and NPs to gather insights into 1) the awareness of PICS-p among community clinicians in BC, 2) barriers faced by community clinicians in caring for children and families after PICU discharge, and facilitators to support a proposed shared care model 3) educational and support resource needs. At the end of the survey, providers were offered the opportunity to engage in developing a shared care pathway. 

Method and Materials

This study was a cross-sectional survey of community paediatricians, GPs, and NPs across BC, Canada, who have overseen or could oversee the ongoing care of children and their families following PICU discharge. After reviewing the study, the Provincial Health Service Authority (PHSA) Research and Quality Improvement Ethics Board approved it as a quality improvement project and waived ethics approval. No identifying data was linked with survey responses.

Survey

The PICACHU follow-up working group[5] amended a 29 item survey consisting of Likert scale, multiple choice and short answer questions by Anthony et al.(2022): the project team revised the original 29-item survey, eliminating superfluous items or sections irrelevant to the project’s aims, resulting in a 22-item survey (Supplementary material A). The survey was separated into three sections: respondent demographics and awareness of PICS-p, current barriers and resources needed to care for post-PICU patients and their families, and a proposed shared care model for post-PICU patients. Shared care is a well-established care model between GPs/NPs and specialists (Vuong et al., 2020). However, given the current state of PICU follow-up in BC, the care falls to the GPs/NPs without ongoing specialized PICU consultation or support. This would represent a new model of shared care within the province. Seventeen questions were closed response (multiple-choice, 12; Likert scale, 5). Five questions involved branching logic, where selecting a particular response triggered subsequent follow-up questions. These follow-up questions were open-ended free-text responses. The estimated time for completion was less than 10 minutes.

Sample and Recruitment

Low response rates are associated with surveys (Rindfuss et al., 2015); therefore, the project team utilised multiple recruitment strategies to engage with community paediatricians, GPs and NPs in BC. An embedded QR code within an infographic advertising the survey was distributed via CHBC networks, social media sites (LinkedIn, closed Facebook groups), health authority and professional registration body’s media channels (Family Doctors of BC, BC Paediatric Society, and Nurse Practitioners of BC). The survey was configured to exclude providers who were adult-only practitioners. CAPTCHA verification and bot detection algorithms were implemented to safeguard the survey from automated intrusion attempts.

Data collection and analysis 

Responses were collected directly into the Research Electronic Data Capture (REDCap) database over four weeks from October to November 2023. Responses were exported into an IBM SPSS Statistics-compatible Microsoft ExcelÔ file. The data was cleaned and analysed directly in IBM SPSS version 29. Missing data were excluded pairwise. Descriptive statistics were used to describe sample characteristics and frequency reporting for categorical data. Tables and graphs facilitated data analysis and response distribution. To explore the differences between paediatricians’ and GPs/NPs’ experience with PICS-p, the frequency of care for post-PICU patients and length of post-discharge care were examined using a chi-square test. Questions with ordinal response options were collapsed into three groups, where appropriate, to facilitate chi-square testing. Free-text responses were analysed using qualitative content analysis to identify recurring patterns and categories (Elo & Kyngäs, 2008). Results

A total of 113 respondents (N = 113) completed the survey. A total of (n = 14) respondents did not complete all survey sections, leaving (n = 106) completed for analysis. The majority of respondents (n= 67; 59%) cared for children only in their practice, and 40% (n = 45) of respondents cared for a mix of children and adults. Only one (n = 1) participant worked with adult-only patients and did not complete the remainder of the survey.

Study Population

Paediatricians were the largest responding group, 48% (n = 51), followed by GPs, 37% (n = 39) and primary care NPs, 15% (n = 16). The majority of respondents (97%) had cared for a post-PICU patient in the previous five years. Demographic statistics are shown in Table 1. A total of 79% of respondents (n = 84) sometimes (3-5 patients per year) or always (>5 patients per year) treat post-PICU patients.

Table 1

Respondent Demographics and Experience Caring for Post-PICU Patients

Note. Total numbers for clinicians in BC are estimates based on the Canadian Institute for Health Research: paediatricians N = 452, general practitioners N = 1822, nurse practitioners N = 858. Adapted from “Supply, distribution and migration of physicians in Canada, 2022—Data Tables,” by Canadian Institute for Health Information, 2022, https://www.cihi.ca/en/access-data-and-reports/data-tables

Awareness and Management of PICS-p

Most respondents were familiar with PICS-p (n = 80; 75%). There was a statistically significant difference between groups with respect to awareness of PICS-p, with GPs/NPs reporting a higher awareness c² (1, n = 106) = 13.0, p = <0.001, phi = -0.37. Additionally, there was a statistically significant difference between groups in the frequency of caring for post-PICU patients. Paediatricians reported the highest rate (>5 patients) per year of caring for post-PICU patients c² (2, n = 106) = 15.2, p = <0.001, V = 0.38. However, only 59% (n = 30) of paediatricians were familiar with PICS-p compared to 91% (n = 50) of GP/NP respondents. The majority of respondents were somewhat confident (n = 32; 30%) or confident (n = 61; 57%) to provide follow-up care. This correlated with respondent’s confidence in managing the short (n = 53; 50%) and long-term (n = 52; 49%) complications of PICS-p.

Current perceived barriers to follow-up

Community providers identified multiple barriers to providing follow-up care. The most frequently cited barrier by all respondents was a lack of resources (n = 52; 24%), followed by a lack of communication with PICU specialists (n = 41; 19%) and a lack of established referral pathways for escalating care (n = 41; 19%). Additional barriers were identified, including a lack of guidelines (n = 32; 15%), a lack of communication with allied health providers (n = 19; 9%) and a lack of education (n = 17; 8%). Only 3% (n = 7) of respondents did not experience barriers to providing follow-up care (Figure 1). Two main themes were identified in the free-text responses: communication and resources. Communication breakdown was attributed to a lack of information relating to the PICU stay. Resources were defined as human resources due to the complexity of patients following a critical illness. This included the need for ongoing mental health support for survivors and their families and the inability to access these resources in a timely manner. 

Figure 1

Community Providers Current Perceived Barriers to Post-PICU Care

Note. Lack of resources was defined as human resources. Other barriers were discussed in free-text responses.

Proposed Shared Care Model

Out of the 106 completed surveys, 98% (n = 104) of respondents perceived a proposed shared-care model as beneficial. The respondents who did not perceive a benefit of a shared care model[6] (n = 2) noted in free response that human resources (e.g., clinicians time) should be directed toward other patient populations, and the other respondent did not see the value in providing care for post-PICU patients if the cause for admission had resolved. When asked if they would be interested in consulting on developing a shared care post-PICU model, most respondents (n = 86; 81%) expressed interest.

Barriers and Facilitators to Share Care

The most frequently reported perceived barrier to a proposed shared care model was difficulty with information sharing and accessing medical records (n = 48; 18%), followed by establishing referral pathways for escalation of care (n = 43; 17%) and lack of guidelines for providing care (n = 38; 15%). Community providers identified additional barriers to a proposed shared care model, including a lack of communication with PICU specialists (n = 37; 14%), a lack of educational material (n = 34; 13%), poor compliance with follow-up appointments, and a lack of communication with hospital staff on discharge (n = 26; 10%). Only one respondent did not perceive any barriers to follow-up care. The common theme in free text responses related to human resources (lack of time) and financial resources to care for complex patients. Human resources also extended to limited allied health resources in the community, including mental health support for families.

For a successful implementation of a proposed shared care model, the majority of community providers (n = 55; 21%) identified a need for unified medical records, followed by referral pathways to PICU specialists (n = 52; 20%) and access to timely discharge reports (n = 44; 17%). Additional facilitators of a successful proposed shared care model include family screening tools for PICS-p (n = 39; 15%) and family self-referral options (n = 36; 14%). Figure 2 displays a breakdown of responses to the facilitators of a proposed shared care model. A single theme was identified in the free text responses, and it related to financial resources and improved payment methods for community providers’ time in caring for complex post-PICU patients. Most respondents reported that a central repository of education material on PICS-p would be helpful (n = 56; 53%) or very helpful (n = 18; 17%).

Figure 2

Facilitators for Successful Shared-Care Model

Note. Multi-d refers to multidisciplinary team.

Discussion

Implementation of follow-up services requires consideration of potential burdens and barriers within resource-finite systems (Haines et al., 2019; Hickey et al., 2022). As the implementation of post-PICU clinics increases (de Sonnaville et al., 2023; Ducharme-Crevier et al., 2021; Long et al., 2022), identifying the ideal model requires clinicians, researchers, and families to design services that mitigate or address the barriers to providing care for this vulnerable population (Long & Fink, 2021; Williams et al., 2022).

Despite increasing recognition of the long-term impact of PICS-p, there continues to be debate within the literature regarding the ideal structure of follow-up services, particularly in terms of team structure and which clinicians (i.e., intensive care versus paediatrician versus GP/NP) direct follow-up (Long & Fink, 2021; Mortamet et al., 2024; Quadir et al., 2024). While some models emphasize intensivist-led follow-up, others have suggested rehabilitation specialists or a primary care approach (de Sonnaville et al., 2023; Long & Fink, 2021; Modrykamien, 2012; Quadir et al., 2024; Vijayaraghavan et al., 2018). The variability in model recommendations highlights the importance of researchers and clinicians to customize services based on the local infrastructure and provider availability (Bos et al., 2022).

 The known impact critical illness has on families, the hyper-specialization of PICU, and the silo between acute and community healthcare, all present challenges in transitioning care between providers (Nelson et al., 2019; Whyte-Nesfield et al., 2023). The duration and scope of follow-up required for children recovering from PICS-p remain uncertain, further complicating care continuity (Long & Fink, 2021; Quadir et al., 2024). A shared care model, integrating PICU clinicians and community providers, offers a holistic approach to recovery (Long & Fink, 2021; Vuong et al., 2020; Whyte-Nesfield et al., 2023). Shared care models exist between community providers and other specialties, including oncology (Long & Fink, 2021; Vuong et al., 2020). A similar partnership between PICU clinicians and GPs/NPs could enhance the capacity of community healthcare providers in the ongoing management of children and their family post-PICU. However, successful implementation requires a robust understanding of the barriers and facilitators that influence care delivery. The findings from our study were similar to other post-PICU surveys of paediatricians in the U.S. (Harris-Kober et al., 2024) and primary care providers in Australia (Anthony et al., 2022), including care coordination challenges and a lack of education about post-PICU needs. All studies identified breakdowns in communication as a barrier to providing follow-up care. In this study, the province had transitioned to an electronic charting system, altering how information from the PICU was transferred to community providers, potentially accounting for the high proportion of respondents who identified communication breakdown as a barrier to follow-up care. User interface challenges in electronic charting systems, leading to a breakdown in communication between providers, are described in the quality improvement literature (Bowman, 2013; Kellermann & Jones, 2013). These system-level findings highlight the need to consider contextual and environmental changes influencing care delivery (Mielke et al., 2022).

Additional barriers included limited human resources and time constraints, particularly in rural and remote communities where workforce shortages are more pronounced (Standing Committee on Health, 2023). These constraints were further compounded by practitioner billing and remuneration challenges, influencing the ability to dedicate adequate time to complex patients post-PICU. The time required to comprehensively assess for PICS-p exceeds the standard 10-minute funded consultation period (de Sonnaville et al., 2023; Ducharme-Crevier et al., 2021). This was particularly prevalent for practitioners in remote communities. Time limitations expressed by community providers reflect the importance of a shared care model.

The research team identified several facilitators as potential solutions to address these challenges. A shared care model incorporating virtual team meetings between community providers and PICU specialists may help mitigate billing challenges and enhance care coordination. Given that 94% of respondents reported having virtual infrastructure in place, interdisciplinary case discussions could improve access to specialist input while minimizing disruptions to workflow and remuneration structures.

The importance of access to allied health professionals, particularly mental health support for the family, was identified in the free text responses. Although federal funding has been directed to improve accessibility to mental health services (Moroz et al., 2020), there appears to be a continued delay or challenges in providers referring to these services in BC.

Consistent with findings from the Australian study (Anthony et al., 2022), the majority of respondents expressed interest in further education on PICS-p. Enhancing provider knowledge through clinical guidelines and central repositories may strengthen the capacity for managing post-PICU patients and their families in primary care settings.

In contrast to the U.S. and Australian studies, our findings indicate a higher awareness of PICS-p, with GPs/NPs more likely to have awareness of PICS-p than paediatricians. It is important to contextualize this finding within the BC setting. Unlike the U.S., where community paediatricians often function as primary care providers, paediatricians in BC serve consultative rather than primary care roles. This distinction is important when interpreting the findings, as BC paediatricians may encounter a narrow subset of post-PICU patients compared to their U.S. counterparts. The role of primary care providers is vital to the early detection and prevention of illness in a population (British Columbia College of Family Physicians, 2022).

Despite the higher awareness of the sequelae of PICS-p among primary care providers, gaps in primary care access remain a significant structural challenge. BC has the second-highest percentage of residents in Canada who do not have access to a primary care provider (Statistics Canada, 2020). Designing follow-up services requires careful consideration of the existing service gaps, ensuring that models are clinically practical and feasible within the existing healthcare infrastructure.

The Australian group are trialling a shared care model with GPs, with final decision-making, e.g., referrals, led by GPs (Long et al., 2022). Future designs of a shared care model must account for the time constraints and challenges in accessing allied health providers, particularly mental health resources, within the community in BC. This may include exploring regionalized support networks, virtual consultations with specialists, and tiered referral pathways, which may improve access to resources (Eagleson et al., 2020; Raman et al., 2021).  

Limitations

This study has several limitations. The adaptation of the survey to the Canadian context did not undergo formal pilot testing. Although the number of responses was higher in our study, in relation to the total number of practitioners registered in the province, the response rate was low. It is unclear if the respondents of the study had higher awareness of PICS-p as compared to other primary care providers in the province.  Additionally, the reliance on self-reported confidence in the survey can be considered a limitation, as confidence does not always reflect actual expertise, potentially reflecting subjective perceptions rather than true proficiency. Finally, no other care model options were presented within the survey due to the funding and nature of the project, which could cause respondent bias.

Conclusion

            Our study identified a high level of awareness about PICS-p among community healthcare providers in British Columbia. However, several significant barriers were identified that limit their ability to effectively care for children and families following PICU discharge. These barriers include communication breakdowns between PICU specialists and community providers, insufficient resources with particular concern to a lack of mental health supports, and challenges associated with the accessibility of allied health services, especially in remote areas.

            Incorporating these findings into the development of a post-PICU shared care model requires consideration of the barriers and resource constraints within the BC context, as well as the unique combination of primary care providers, such as GPs/NPs, and consultant community paediatricians. The project team can implement improved communication pathways between PICU specialists and community providers and expand access to educational resources on PICS-p. Ultimately, a collaborative approach involving clinicians, researchers, and families is necessary to ensure that the post-PICU care provided meets the comprehensive needs of pediatric survivors and their families.

Author Notes

Michelle Dunphy, MN, RN, Paediatric Critical Care, British Columbia Children’s Hospital and School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada.

Srin Murthy, MD,  Paediatric Critical Care, British Columbia Children’s Hospital and Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.

Gaby Yang, MD, Department of Paediatrics, Faculty of Medicine, University of British Columbia, Pediatric Critical Care, Victoria General Hospital, Victoria, British Columbia, Canada.

Jennifer Retallack, MD, Pediatric Critical Care, British Columbia Children’s Hospital and Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.

Corresponding Author:  Michelle Dunphy, MN, RN, Pediatric Critical Care, British Columbia Children’s Hospital and School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada. Email: michelle.dunphy@cw.bc.ca.

Funding and Conflict of Interest

The project is funded by the BC Children’s Hospital Foundation (BCCHF), which is not involved in the study design, data collection, analysis, and interpretation. Additionally, BCCHF does not provide input in the article’s writing or the decision to submit the results for publication. The authors declare no conflict of interest.

Acknowledgements

The authors would like to acknowledge this work was primarily carried out on the unceded land of the Lekwungen, xʷməθkwəyəm (Musqueam), Sḵwx̱wú7mesh Úxwumixw (Squamish), and səlililwətaʔɬ (Tsleil-Waututh) Nations.

The authors would like to acknowledge the following: Lori Anthony, MClinEpi, Amie Hilder, BPhysio, Dana Newcomb, MBBS FRACGP, Kerri-Lyn Webb, MBBS, James Best, MBBS FRACGP, Christian Stocker, MBBS MD FMH (CH), and Debbie Long, RN PhD for permission to use the survey from their study “General practitioner perspectives on a shared-care model for paediatric patients post-intensive care: A cross-sectional survey.”

We thank Meghan O’Neill (Child Health BC) for creating REDCap survey instruments.

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[1] For translation, BC is the size of France, Germany, and the Netherlands combined.

[2] Meso-level comprises the linkages and processes taking place between two or more settings containing the developing person (e.g., the relations between home and school; Bronfenbrenner, 1994, p. 40).

[3] CHBC is a health improvement network within the Provincial Health Service Authority (PHSA) that focuses on care improvement for health service delivery for children and families across BC.

[4] Post Intensive care outcomes and follow-up in Children: A Collaboration of Health care providers, researchers, and families Utilizing knowledge co-production: PICACHU.

[5] A detailed description of the PICACHU working group is documented in the publication (Dunphy et al., 2024)

[6] Shared-care model for this survey was defined as “A shared care model is a coordinated approach that brings together providers from different specialties, including primary and community care, to collaborate on a person’s care for as long as needed.”

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