key: cord-0908850-q63ce5pi authors: Nicholas, David; Patershuk, Clare; Koller, Donna; Bruce-Barrett, Cindy; Lach, Lucy; Zlotnik Shaul, Randi; Matlow, Anne title: Pandemic planning in pediatric care: A website policy review and national survey data date: 2010-02-05 journal: Health Policy DOI: 10.1016/j.healthpol.2010.01.007 sha: f94f3f9c995ef8de18758ca0eea7075f83454065 doc_id: 908850 cord_uid: q63ce5pi OBJECTIVES: This study investigates current policies, key issues, and needs for pandemic planning in pediatrics in Canada. METHODS: Online pandemic plans from national, provincial and territorial government websites were reviewed to identify: plans for children and families, and psychosocial and ethical issues. A survey was administered to gather participants’ perspectives on the needs in pediatric planning, as well as important elements of their organizations’ and regions’ pandemic plans. A thematic analysis was conducted on qualitative survey responses. RESULTS: The majority of existing plans did not adequately address the unique needs of pediatric populations, and mainly focused on medical and policy concerns. Several gaps in plans were identified, including the need for psychosocial supports and ethical decision-making frameworks for children and families. Similarly, survey respondents identified parallel gaps, in their organization's or region's plans. CONCLUSIONS: Although many plans provide guidelines for medical and policy issues in pediatrics, much more work remains in psychosocial and ethical planning. A focus on children and families is needed for pandemic planning in pediatrics to ensure best outcomes for children and families. The impact of pandemic H1N1 (2009) has raised public awareness of the threat of a severe influenza outbreak, as the Public Health Agency of Canada, provincial, and territorial bodies continue to bolster their contingency plans. In 2003, Severe Acute Respiratory Syndrome (SARS) revealed gaps in Ontario's emergency response capability, and highlighted the need to prepare for future epidemics. The effects of this outbreak resulted in a total of 251 probable cases and 43 deaths in Canada [1] . SARS heavily impacted the health care system in Ontario and in affected areas across the globe. Recent memories of this outbreak, coupled with the threat of pandemic H1N1 (2009) warn of the impacts of a major outbreak in Canada. Accordingly, planning has become a pressing issue for stakeholders in government, industry and community. While the exact timing, pattern and impact of a future pandemic is unknown [2, 3] , in Canada an influenza pandemic could result in as many as 10.6 million people (35%) who become clinically ill, 138,000 (0.5%) who require hospitalization, and up to 58,000 deaths (0.2%) [4] . Such concerns have become a high profile public health issue, and fears of a potential global pandemic continue to grow. Governments, policy makers, and health care providers (HCP), are planning for future pandemics, in part, based upon the lessons learned from SARS. Health Canada [5] has identified gaps in the response to SARS that should influence current policies and planning. For example, there is still a need to address ethical concerns during a pandemic, for instance, governments may be required to infringe upon civil liberties to ensure infection control, and policy makers need to establish frameworks for decisionmaking to allocate scarce health care resources [6] . A lack of coordination and communication, the poor management of resources, and the absence of a clear leadership structure within organizations and government also had a detrimental effect on the effort to control the SARS outbreak [6] [7] [8] . Outside of Canada, critical gaps have been identified in European Union (EU) plans. These concerns include a lack of cooperation among EU countries and poorly delineated roles and responsibilities of central and regional health authorities. In addition, gaps exist in preparation for the impact on health care systems, the maintenance of essential services, and public health interventions to curb the spread of an epidemic [9] . Similar issues have been highlighted by researchers and planners world wide [10, 11] . Recently, pandemic H1N1 (2009) has reignited these concerns about preparedness. In an effort to learn from SARS and to prepare for a future pandemic, the Government of Canada has released the "Canadian Pandemic Influenza Plan for the Health Sector" [4] . Similarly, the majority of provincial and territorial governments have also released their regional plans [12] [13] [14] [15] [16] [17] [18] [19] [20] [21] [22] [23] [24] [25] [26] (see Table 1 for selected features of pandemic plans in various jurisdictions). These documents guide health planning and responses at provincial and local levels. Government plans cover topics ranging from influenza surveillance, to the distribution of antiviral supplies, to communication and information dissemination. Although these plans are designed to protect all Canadian citizens, there continues to be a lack of dialogue or guidance to address the specialized needs of a pediatric population. Children may require specialized supplies, medications, and treatment. They also require additional supervision and family support [27] . Additionally, pandemic planning for children and families is often addressed locally, with little coordination among the various levels of planning [28] . This continued neglect of pediatrics, both by policy makers and researchers in pandemic planning, is problematic, as difficulties associated with psychosocial concerns or ethical decision-making are magnified for HCP, children and families [29] . In this paper, we present both provincial and territorial policy statements as they relate to pediatrics based on a website review of plans. We also present the qualitative results from a survey administered to pediatric pandemic planning practitioners and policy makers. The goal of the project is to assess the comprehensiveness of existing pandemic plans in Canada and to identify what professionals identified as important and needed in pediatric plans. There is little dialogue about ethical concerns in pandemic planning for pediatrics. As such, the literature about ethics in pandemic planning focuses primarily on adult care [30] [31] [32] . Thompson and colleagues have identified general values to guide care and policy for pandemic planning. These values include: the duty to provide care, equity, individual liberty, privacy, proportionality, protection of the public from harm, reciprocity, solidarity, stewardship, and trust [30] . Although these values are central to ethical planning and decision-making, many may be interpreted differently in pediatrics. For example, individual liberty does not apply to children in the same way as adults. Compared to adults, children lack autonomy and parents must advocate and make health care decisions on their child's behalf. Due to the lack of literature on this topic, policy makers must individually interpret the ethical issues in pediatric care. As such, policy makers who strive to maintain ethical care in pediatrics should be guided by ethical values, and stay aware of the needs of children and families. In this paper, participants identify situations where such ethical policy making must be implemented. In this paper, we present a website review of provincial and territorial pandemic plans with respect to pediatric policies. Additionally, we present the qualitative results from a national survey on pandemic planning. Websites of all Canadian provinces and territories, and the Public Health Agency of Canada were reviewed to identify online and publicly available pandemic plans. Each website was surveyed to identify the availability of a pandemic plan. Subsequently, these plans were reviewed to assess their comprehensiveness and to identify unique plans for children and families, and psychosocial and ethical issues. The review was completed in June 2009 by a reviewer with a background in health policy. The reviewer used content analysis to record all references to pediatrics in a database. To verify this information, the plans were read by a second reviewer, and a search function was used to ensure that available pediatric plan information was included in the review. The web-based survey included open-ended questions that asked participants' opinions on the processes of planning, comprehensiveness and essential elements of pandemic plans in their organization or region. The survey was hosted by Survey Monkey (http://www. surveymonkey.com/), an online application that administers questionnaires to participants. This method was chosen to increase the response rate from participants across Canada, particularly in more remote regions. An email with a link to the online survey was sent to potential participants between May and June 2008. Participants received a reminder email at 1 and 3 months after the initial request. The survey was available online in English and French. Survey participants included individuals with expertise in pediatric care and pandemic planning, including: (1) members of national, provincial and territorial pandemic influenza committees; (2) professionals working in infection control and pandemic planning; and (3) professionals working with children, youth and families in crisis. The participants were recruited using snowball sampling. Email invitations to complete the survey were sent to 1964 individuals, with n = 290 participants, with a response rate of 14.8%. Given this low response rate, the survey data presented is not intended to be representative. The demographic data, however, show that there are participants from all areas of pediatric care and pandemic planning. In addition, respondents from all provinces and territories participated in the survey (see Table 1 ). As such, the data identifies issues that are salient for participants who are interested and involved in the area, which may be important to consider in pandemic planning for children and families. Open-ended survey responses were analyzed using qualitative data analysis software. A thematic analysis was conducted for each survey question using open coding. Qualitative rigor was ensured through the use of referential adequacy, negative case analysis, and peer debriefing. Government decision-makers have learned from SARS, using this knowledge to plan for future pandemics, evidenced by the release of detailed pandemic plans. Largely, however, the application of this knowledge to pediatrics has been lacking. Specific references to pediatrics are seen in a minority of pandemic plans [4, 13, 22] , but a greater focus on pediatrics has been noted in some recently released plans [12, 15] . Some plans do not acknowledge pediatrics as a need [18, 21, 26] , while other plans suggest that the needs of this vulnerable population are being planned for, yet they do not articulate many concrete strategies to accomplish this task [16, 17, 19, [23] [24] [25] . This omission of pediatric care in pandemic plans continues despite concerns of a potential outbreak, and the responsibility of governments to coordinate a pandemic influenza response for Canadian children and families (see Table 2 ). Governments with pandemic plans that address needs in pediatrics have solid contingency plans for medical and policy issues, but less so for psychosocial and ethical issues. Medical components of plans focus on key issues such as: pediatric specific medical supplies; stockpiling of antivirals and vaccines; and differences in symptoms, triage, treatment and isolation [4, [12] [13] [14] 23] . Policy issues included in current plans address needs for coordination with other agencies as well as the public. These issues are often coupled with guidelines on school closures [4, [13] [14] [15] [16] [17] 19, [22] [23] [24] [25] , and only Ontario's plan addresses child care provisions for HCP [22] . Chiefly, psychosocial and ethical concerns focus on communication [4, [12] [13] [14] 22] ; potential stressors for children and families [4, [12] [13] [14] [15] 17, 22, 24] ; grief and bereavement counselling [4, 13, 22] ; and family centred care [22] . Nevertheless, even these more thorough plans lack consideration of certain psychosocial and ethical issues, for example, 'how will decisions be made regarding children whose parents are unable to consent due to treatment?'. And 'how will children and families cope with these stressful events?'. Many such concerns, relevant to pediatric patients, families and HCP, are not documented in pediatric pandemic plans. Notably, the above mentioned plans all contain a pediatric specific focus; in contrast, a majority of plans do not thoroughly consider these issues and tend to focus on medical and policy matters in pediatrics [16] [17] [18] [19] [20] [21] 23, 24, 26] . As a • Notes that pediatric specific supplies will be needed • Agencies must "determine support needed for orphaned children and the need for grieving and counselling services" • Mentions different needs of children in terms of vaccinations, isolation, treatment • Importance of supporting staff "through critical incident debriefing, grief counselling, child care support, etc." • Children's/Pediatric Unit is one area in which the demand may increase markedly and continuing operation is crucial-health authority and facilities should consider these areas and determine which are critical to keep them operational result, many provinces may be under prepared to deal with the increased demand for pediatric services, especially the need for psychosocial and ethical supports. Although many plans note differences in symptoms or treatment of children, and the need for school closures, still a number of these medical and policy needs are inadequately addressed and often psychosocial or ethical concerns are not touched upon at all. In fact, these issues present challenges often left unaddressed by government plans, resulting in a significant gap in pediatric pandemic planning. Stakeholders in pediatric services and pandemic planning participated in this cross-Canada survey and sharing written responses to open-ended survey questions, providing their suggestions for pediatric pandemic planning. Participants identified four overarching themes about important needs in pediatric planning. Main themes include: essential elements to a pediatric pandemic plan; importance of children and families in planning; importance of communication; and accounting for missing or rudimentary plans. Participants identified plan elements they thought were central to any organization's pediatric pandemic plan. They identified concerns from resource allocation to ethical decision-making, illustrating the complexity and heterogeneity of these issues. Participants provided a wide range of elements they thought should be included in a pediatric pandemic plan. Many expressed the importance of child care measures during a pandemic. A variety of concerns pertaining to child care were identified, such as how to manage school and day care closures for working parents. By the same token, participants felt plans should provide support for HCP, in managing child care, family and job responsibilities, in addition to providing for occupational health concerns, including the psychosocial and physical well-being of HCP. Moreover, participants felt that ensuring the availability of psychosocial supports for various stakeholders was also an essential plan element. They suggested that plans should make provisions to provide psychosocial supports for children, families, and HCP and their families. Providing education and information were important to participants, to promote understanding and preparation during a pandemic. Similarly, they identified communication with stakeholder groups as essential in a pediatric pandemic plan. Participants felt that policies should provide guidance in infection control in pediatrics. Coupled with these concerns, clinical guidelines were also identified as a central and complex issue in a pediatric pandemic plan. Participants saw the need for treatment guidelines specific to pediatric populations, including guidelines for assessment and treatment, for children with an infected or absent parent or guardian, and for prevention, such as vaccination protocols. Guidelines for the treatment of routine non-influenza health care cases were viewed as especially important to maintain care and to optimally treat the largest numbers of people. A participant stated, "we must have specific pre-set criteria on questions such as: when to stop performing elective surgeries, when to stop performing marrow and organ transplants, etc." Resource allocation plans were a major concern, particularly for pediatric care, to ensure that resources are available for children and families during an outbreak. Participants noted that community supports are required for stakeholder groups, for example, child care and psychosocial supports for children with an ill parent or guardian. Another key issue was coordinating plans to include home care for those who are infected if hospitals are over capacity. A large portion of respondents also raised concerns about ethical decision-making during a pandemic, and the need for a framework for decision-making in pandemic plans. One respondent indicated the need for an ethical framework, specific to pediatrics: Discussion/guidance [is needed] on ethical decisionmaking processes for the pediatric population. Are these different than they will be for the adult population? Will the philosophy of family centred care be impacted during a pandemic event? In essence, participants identified a range of issues that must be considered in pediatric pandemic planning, in order to manage the heavy burden an outbreak will place on health care systems and resources (see Table 3 ). Participants were asked to identify missing elements in their organization's pandemic plan, and many responded with similar issues as when questioned regarding the key elements of a pediatric plan. These missing elements include: child care plans; communication and information sharing; ethical guidelines; needs of HCP (psychosocial, medical, workforce); organizational coordination; pediatric focus; continued plan development; post-pandemic planning; psychosocial needs; and resource planning and allocation. Participants were asked to identify if their organization actively involved children and families in pandemic planning. Those who responded affirmatively provided a range of strategies to incorporate the voices of children and families in plan development. Such strategies include input from: family advisory committees, community organizations, family representatives, and research findings. Consultation with children and families ranged from extensive involvement in planning, where a "family representative was involved as a key stakeholder on the steering committee," to minimal, such as consulting research studies on pediatric needs. Conversely, participants who responded that children and families were not involved in planning provided a variety of explanations regarding why this occurred. These explanations include: pediatrics are not within the organization's mandate, the organization has a small pediatric population, plans are in development, and planners and staff are also parents. The most common response has that staff and planners are also parents, and that they can apply this experience to plan development. As an example, a participant stated, [Children and families were] not [involved] to my knowledge, other than in the capacity that many of the people that have been involved in administrative or clinical care roles are also parents. They may have also been thinking in terms of being a parent. Accordingly, based upon these survey responses, participants provided suggestions for, and noted barriers to, incorporating the voices of children and families in pandemic planning. Participants provided information on preferred sources and methods of information dissemination during a pandemic. These sources include: business and industry, community organizations, government, HCP, professional organizations, the media, pandemic planning organizations, public health networks, schools and daycares. Government was seen as a major source of information during a pandemic. One respondent suggested that, "information on the flu would be put together by those responsible at the ministry of health." Methods of sharing information were varied, but largely web-based solutions were suggested by participants. Participants also identified media (e.g. television, radio, print) and interactive information sharing (e.g. town hall meetings) as key strategies. Survey respondents belonging to organizations without, or lacking a well-developed plan, were asked to identify why their organization was wanting in the area of pediatric pandemic planning. Participants suggested that they were missing strong leadership in pediatrics and that this was a major factor contributing to a minimal or nonexistent plan. They felt that they had little guidance in what was required for pediatric pandemic planning. Participants also expressed that they did not have access to resources for plan development, resulting in a "skeleton plan" focused on the adult population. Lastly, not having adequate pediatric services or facilities within the organization or region contributed to the lack of a pediatric pandemic plan, as pediatrics was not a priority. While most respondents advocated pediatric planning, some participants were doubtful about the need for specific plans. These dissenting participants suggested that there are no unique pediatric issues to be addressed and that general plans are sufficient for pediatric care. Other participants suggested that a pediatric plan was unnecessary because of a minimal focus on pediatrics, or due to a small pediatric population in their organization or region. The respondents who did not see the need for a specific plan provided responses such as, "my belief is that it should not be a separate plan-I would need evidence or rationale why a separate pediatric pandemic plan is required." On balance, the majority of respondents saw the need for a pediatric plan, but a substantial number of others did not see the implications or relevance of planning that is specific to children and families. Participant responses indicate that pediatric pandemic planning is an important and salient issue across Canada. Based upon qualitative analyses of survey data, participants have provided important and useful feedback on the needs and essential elements in a pediatric pandemic plan, the importance of listening to children and families, the need for communication with stakeholder groups, and factors resulting in under-developed or missing plans. Unfortunately, however, not all recommendations from participants are currently being implemented in provincial and territorial plans. This is exemplified in the congruence between what respondents felt were essential plan elements and the elements they identified as missing from their organizational or regional plans. There are clear and notable gaps in pediatric planning, both in terms of elements reported as missing by participants in their organizations' or regions' pandemic plans and in the parallel gaps in the provincial, territorial and national policy documents that were reviewed. For example, a lack of psychosocial and ethical policies in planning for pediatric care were identified as major gaps by survey respondents, and confirmed by our policy review. These discontinuities in identified key elements, and existing policies, point to the need for consideration of children and families at all levels of the planning process. Moreover, this lack of pediatric specific considerations is noted in the perceptions of survey respondents who indicated that children do not have unique needs in the event of a pandemic and in the lack of policies across provinces and territories pertaining directly to the care of children and families. To address the needs of this population effectively, the authors suggest the incorporation of pediatric plans within broader provincial, territorial and national plans. The international literature on needs in pandemic planning notes the importance of cooperation and the need to identify roles and responsibilities in plans [9, 11] . Similarly, participants identified the importance of resource allocation, guidelines and communication in pediatric plans. It is clear that these issues are salient and must guide policymakers as they develop or update plans. Based upon the web-based policy review, provinces with a combination of factors are often substantially more prepared based upon an analysis of their provided policies. For instance, British Columbia's (BC) [10] pediatric pandemic plan is a well-developed and readily available document which addresses the unique issues of children and families and touches upon some psychosocial concerns. Likewise, BC is an example of a province with relative wealth, and a high population density in urban areas, for instance, BC reported the third highest population growth among the provinces during 2007 (14.9 per 1000) to reach a population of 4,414,000, one of the more populated provinces in Canada [33] . BC's major cities are easily accessible via commercial travel, and the province has welldeveloped health care and government infrastructure, all of which likely contribute to the resources available for the development of a pediatric pandemic plan. In contrast, Northern communities appear to be at the greatest risk, given current rudimentary plans that are potentially influenced by a lower population density, few major cities, and a lack of reserve human, medical, supply, policy and financial resources. These disparities require greater consideration of factors influencing inequities in pediatric pandemic preparedness, including population density, socioeconomic status, relative isolation, and available resources. Regardless of the factors that may influence the lack of pediatric contingency plans, there remains the possibility of severe outcomes for children and families in the event of an outbreak. It appears that greater attention and resources must be allocated to Northern communities to ensure adequate preparation in the event of a pandemic. Participants suggested that web based communication will be key in the event of a severe outbreak, allowing information to be distributed remotely [34] . Posting pandemic information on websites will be critical, as identified by survey respondents, to allow quick access to up-todate information. The majority of provincial, territorial and national pandemic planning bodies have responded to this method of information dissemination, in posting pandemic plans and information on their websites. Public and political awareness of a potential pandemic has raised concerns over resource allocation and contingency planning, but in some jurisdictions, relatively little attention has been paid to planning in pediatrics. A review of the pandemic plans of the Public Health Agency of Canada, provincial and territorial governments has identified needs in pediatric planning. These issues and concerns were also supported by survey respondents, who are experts in pediatric care and pandemic planners, qualified to note such gaps in contingency plans. To overcome these gaps, a focus on the unique needs of children and families is required, while support and resource redistribution to less advantaged provinces and territories is needed to ensure the health and well-being of all Canadians. Consideration of the factors that influence pandemic preparedness (such as population density, affluence, relative isolation, and available resources) may be helpful to inform research and policy decisions. Finally, the dissemination of information online, especially via government websites, is essential to communicate with the public during a pandemic. 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