Article Text

Original research
Examining the experiences of Indigenous families seeking health information about caring for sick or injured children: a scoping review
  1. Lisa Knisley1,2,
  2. Janice Linton3,
  3. S Michelle Driedger4,
  4. Lisa Hartling5,
  5. Yuting Sun2,
  6. Shannon D Scott2
  1. 1 Children's Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada
  2. 2 Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
  3. 3 Neil John Maclean Health Sciences Library, University of Manitoba, Winnipeg, Manitoba, Canada
  4. 4 Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada
  5. 5 Alberta Research Centre for Health Evidence, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
  1. Correspondence to Dr Shannon D Scott; shannon.scott{at}ualberta.ca

Abstract

Objective Mapping literature on Indigenous families’ experiences seeking child health information and identifying barriers and facilitators to information access.

Design Scoping review.

Data sources We searched Medline, EMBASE, PsycINFO, Scopus and CINAHL for peer-reviewed literature and Google Advanced for grey literature. We screened tables of contents of two Indigenous research journals not consistently indexed in online health databases and used snowball sampling to supplement searches.

Eligibility criteria We included full-text, English-language articles, published from 2000 to the time of the search in April 2021, based on: participants (Indigenous families), concept (experiences of families seeking health information) and context (child health).

Data extraction and synthesis Two independent reviewers extracted: citation details, study purpose, country of study, publication type, study design, data collection method, Indigenous group, family member participants, home/healthcare setting, child health area, how health information was accessed, and information-seeking barriers and facilitators. Data were examined for patterns and trends, results and implications.

Results Among 19 papers (representing 16 research projects) included, nine described family/friends and 19 described healthcare professionals as sources of child health information. Barriers include racism/discrimination during healthcare visits, ineffective communication with healthcare providers and structural barriers (eg, transportation). Facilitators include easy access, improved communication and relationships with healthcare providers, and culturally safe healthcare.

Conclusion Indigenous families perceive they do not have access to necessary child health information, which can lead to insensitive, ineffective and unsafe healthcare. A critical gap exists in understanding Indigenous families’ information needs and preferences when making decisions about children’s health.

  • ACCIDENT & EMERGENCY MEDICINE
  • Community child health
  • Paediatric A&E and ambulatory care
  • PRIMARY CARE
  • SOCIAL MEDICINE

Data availability statement

No data are available.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • Comprehensive search strategy of five electronic databases for peer-reviewed and grey literature.

  • The review is part of a multistage project addressing an identified need for Red River Métis families to have access to appropriate child health resources.

  • The review was limited to literature in English, potentially impacting comprehensiveness and generalisability.

  • Methodological quality and risk of bias of individual studies were not assessed.

Introduction

Rationale

The Truth and Reconciliation Commission in Canada1 documented inequalities and systemic harms experienced by Indigenous peoples in the residential school system. The Commission heard the testimony of First Nations, Métis and Inuit people affected indirectly or intergenerationally by this brutal form of colonisation which legally, racially and systematically separated Indigenous children from their families, communities, cultures and traditions for approximately 150 years. Seven of the Commission’s 94 Calls to Action are directly related to healthcare and emphasise the responsibility of the Canadian government and healthcare professionals to improve Indigenous communities’ access to appropriate healthcare services. An essential component is to work alongside Indigenous families to better understand and prioritise their health information needs, which in turn can support decision making, healthcare access and appropriate healthcare service delivery2–6; and codevelop health information that serves their needs and respectfully incorporates Indigenous knowledge (eg, rich oral traditions, experiential knowledge, cross-cultural sharing).5 6

The Canadian constitution recognises Métis, First Nations and Inuit peoples as the three Indigenous groups and first peoples of Canada.7 The Manitoba Métis Federation (MMF), the democratically elected government of the Manitoba Métis,8 highlighted a gap in accessing meaningful and appropriate information for Red River Métis families when seeking emergency care for their children. Understanding Indigenous families’ experiences can: (1) inform strategies to develop and share health information resources that embrace diverse understandings and recognise and respect pre-existing knowledge systems9 and (2) help promote strengths-based approaches that focus on positive aspects of health and healthcare solutions, including contextualisation, acknowledging the influence of colonisation, reframing issues and reassigning shame to these influences rather than to Indigenous peoples.10 11

Here, we present a scoping review of literature examining the experiences of Indigenous families seeking child health information. Like other Indigenous groups, the Métis have experienced and continue to experience the legacy of colonial policies that disrupt their ways of knowing and being.3 12 13 Importantly, this scoping review explores findings in a broader Indigenous context.

Health information offered to patients and families influences both the content and outcomes of healthcare encounters.14 When people can access and understand health information, self-care, coping skills and lifestyles improve.15–18 Cultural beliefs and differences in communication styles must be considered, as they affect health-related thoughts and feelings, when and where people seek healthcare, and understandings of health information.14 19

A better understanding of Indigenous families’ experiences seeking child health information is necessary to improve access to useful and meaningful information to guide care. To date, no scoping review has synthesised literature on Indigenous families’ experiences seeking child health information. We address this gap to inform cultural adaptation20 21 of an existing child health resource for Red River Métis families.

Study objectives

The objectives of this scoping review are to map the literature on Indigenous families’ experiences seeking information about how to care for sick or injured children, and to identify barriers and facilitators affecting information access.

Methods

Protocol and registration

This scoping review was registered (10.17605/OSF.IO/875RY) and followed a protocol22 based on JBI methodology.23–25 For reporting, we followed the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) Checklist.26

Eligibility criteria

We based eligibility on the PCC mnemonic26: Participants (Indigenous families of children aged 0–21 years,27), Concept (experiences of families seeking health information) and Context (child health, excluding maternal/antenatal care) (online supplemental file 1). We included all study designs and both published literature and grey literature, such as government reports, conference proceedings/abstracts and dissertations.28 Only literature published in English was included due to budget and time restrictions.29 We included articles published in 2000 or later to reflect information-seeking in the internet era.3

Supplemental material

Search strategy

An academic health sciences librarian (JL) with over 20 years of experience in Indigenous peoples’ health designed the search strategies. Five databases (Medline, EMBASE, PsycINFO, Scopus and CINAHL) were searched in April 2021 (online supplemental file 2). LK and YS screened all tables of contents of two Indigenous research journals, First Peoples Child & Family Review and Journal of Indigenous Wellbeing—Te Mauri—Pimatisiwin, because they include relevant articles but are not consistently indexed in major online health databases.

Supplemental material

LK and YS used Google Advanced to identify grey literature, including online dissertations, examining the first 100 results for relevance (online supplemental file 3).30 They also scanned reference lists of relevant journal articles and grey literature.

Supplemental material

Selection of sources

LK and YS screened titles and abstracts and classified each article as ‘include’, ‘exclude’ or ‘unsure’. Results were compared, and discrepancies resolved with SS when necessary. Full texts of articles classified as ‘include’ or ‘unsure’ were retrieved and assessed against the eligibility criteria, documenting reasons for exclusion. Missing articles were found with librarian assistance and by contacting authors.

Data extraction

LK and YS independently refined the data extraction procedure on three articles,25 extracting citation details, study purpose, country of study, publication type, study design, data collection method, Indigenous group, family member participants, home/healthcare setting, child health area, how health information was accessed and information-seeking barriers and facilitators. Critical appraisal was not conducted as we aimed to provide an overview of existing evidence, regardless of quality.31

Synthesis of results

We displayed data within a table to facilitate comparisons of commonalities and differences across the studies,32 33 examining for patterns, trends and findings.24 25

Deviations from the protocol

To better capture the most relevant aspects of included studies, we modified the proposed data extraction procedure by including studies published in 2000 and beyond. Barrier and facilitator measurements were not analysed due to limited information in the included studies.

Patient and public involvement

This scoping review is one part of a multipart project to culturally adapt a child health resource, based on an identified need from the MMF. Numerous meetings, phone calls and emails have taken place with the MMF to plan and conduct the project. Findings will be shared with the MMF, and their feedback will inform the adaptation of a child health resource.

Results

Nineteen articles (representing 16 research projects) were included (figure 1, table 1 and online supplemental file 4). All employed qualitative methods: participant interviews (n=7), focus/discussion groups (n=3), or both (n=9). Twelve studies are based on data collected only from parents/family members. Seven studies include data from parents/family members and others (eg, children, healthcare providers, community members), clearly differentiating between parents/families and other participants in the findings. Data were collected from Indigenous peoples in Canada (n=8; First Nations/Métis: n=4; First Nations only: n=4), Australia (n=6; Aboriginals/Torres Strait Islanders), the USA (n=4; Native Americans: n=2; Native Hawaiians: n=2) and Aotearoa New Zealand (n=1; Māori)

Supplemental material

Figure 1

PRISMA-ScR flow chart. PRISMA-ScR, Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews.

Table 1

Included articles

Most studies were published in 2020 (n=5) and 2019 (n=6), with the remaining studies published between 2003 and 2017, no more than one per year (table 2). The increase in publications mostly aligns with the publication of the Truth and Reconciliation reports and Calls to Action in 2015,1 as well as national patient-oriented research initiatives launched in Canada34 and the USA in 2010,35 and Indigenous-led research initiatives launched in Aotearoa New Zealand in 201736 and Australia in 2018.37 38

Table 2

Number of articles per year and country

Almost half of the articles did not report participants’ genders (n=8) (online supplemental file 4). Six papers focused exclusively on women, and five included both men and women participants. Articles described the experiences of mothers (n=7), multiple family members (eg, parents, aunties, grandparents) (n=6) and parents/guardians only (n=6) (table 1).

Studies described the experiences of families seeking information on burn injuries,39 respiratory conditions,40–45 skin infections46 47 and pain.48 Rather than focusing on specific conditions, other studies described experiences in the contexts of parenting,15 49–51 primary care,52 early child development,53 an inpatient unit54 55 or caring for a technology-dependent child.56

Studies reported families use extensive networks to access health information. Nine studies described family and friends as vital sources of advice and support when children are sick,15 43 44 48–51 53 56 and all studies reported healthcare professionals (eg, family doctors, telehealth nurses, pharmacists and clinicians in emergency departments or community clinics) as sources of health information, reassurance and advice regarding the best course of treatment.15 39–56 Parents reported turning to other sources (eg, Internet) if they did not receive health education during primary healthcare visits.52 In one study, parents accessed health information via Facebook and Google, but also lacked confidence in recognising trustworthy online information.15 Overall, we identified three barriers and three facilitators affecting Indigenous families’ access to child health information (table 3 and online supplemental file 5).

Supplemental material

Table 3

Barriers and facilitators

Barriers

Racism and discrimination during healthcare visits

Fourteen articles reported families experience racism and discrimination in healthcare settings.39–42 45–50 52–55 Families reported feeling judged based on their appearance and/or last name,48 52 their children being labelled as lazy42 and being treated differently by healthcare providers when seeking healthcare for children.40 48 Some parents reported they were given incomplete information or treated disrespectfully because they are Indigenous.42

Studies reported mothers feeling healthcare providers are unaware of the historical trauma and social inequities that can impact their health behaviours,54 and reported being judged and treated insensitively when nurses learn of past substance abuse or involvement with child protection services.54 55 Single mothers with medically fragile children reported being watched or treated differently by healthcare providers.50 Mothers also reported experiencing discrimination from healthcare providers for having children at a young age.42 52

Parents experienced fear, judgement and shame when accessing healthcare for their children, which influenced when, where, or if they accessed healthcare.41 46 Families also reported feeling unable to ask questions or engage with healthcare providers confidently.40 41 46 49 Not having culturally relevant care also affected families’ decisions to return to providers.52 Some parents preferred managing their children’s pain at home to avoid experiences of discrimination in the hospital.48

Parents described a critical responsibility to future generations to counteract colonisation,51 but that advocating for information creates stress and requires significant energy.48 49 54 There are barriers to accessing Indigenous healers, traditional care providers,41 and traditional medicine,53 which healthcare providers tend to dismiss.54 Families also experienced difficulties accessing information in their preferred language46–48 and a lack of acknowledgement of the spiritual and emotional aspects of care.48

Ineffective communication with healthcare providers

Ineffective communication with healthcare providers was identified as a barrier to accessing information in 14 papers. Families described receiving little to no child health information during their healthcare visits,39–47 49 52 56 and reported feeling confused when they were not given enough information to manage care at home for children with technology dependencies (eg, oxygen, tracheostomy),56 burn injuries,39 asthma43 44 and skin infections.47 Additionally, families often were not informed how to recognise trustworthy information online.15

Families reported feeling unsettled when information is laden with medical jargon.39 41 42 47 48 50 Additionally, confusing and/or insensitive communications with healthcare providers left families feeling fearful and angry,39 and unclear about how to use medicine42 46 47 or confidently manage their children’s care at home.49 For example, healthcare providers may not explain procedures in child-friendly ways,39 involve families in decision making about their children’s treatment,46 47 or recognise families’ knowledge and expertise about their own children.41 Families also reported being less likely to trust a healthcare provider’s opinion52 54 and more likely to seek care elsewhere52 if they do not feel listened to.

Structural barriers

Geographical and transport barriers were reported in 10 studies.39 41–43 46 48 50–52 55 Finding and paying for transportation to take a sick child to an emergency department and/or primary care clinic were major concerns for families.41 52 55 Families also reported not having access to adequate health information and support close to home.39 42 43 46 48 50 51 Parents felt stress, heartache and anxiety when they were unable to visit hospitalised children regularly because they lacked transportation and/or needed to care for other children.39 Cost, work schedules, family commitments, inaccessible programmes and lack of childcare were barriers to participating in health education and support programmes.42

Facilitators

Easily accessible information

The importance of easy access to clear and trustworthy information was reported in 15 articles.15 39 40 42–49 51 53 55 56 Parents gathered as much information as possible when their children were sick to help manage their feelings of uncertainty and anxiety.56 Families wanted access to practical, clear,47 48 consistent,51 culturally appropriate,39 information on topics including treatment options and medication safety.45 47 Families also needed information in their preferred language.47 48 Families of children with burn injuries wanted to access information in community clinics to decrease the stress and burden of travel and family separation.39 Other families preferred accessing information in their local communities,46 48 53 including at schools43 and daycares.40

When, for example, seeking healthcare for a child’s wet cough, families wanted to access health information in a variety of modalities, such as flip charts, audiorecordings (eg, wet cough sounds), social media/radio/TV advertisements, and posters in clinic waiting rooms.40 Some families suggested using text messaging to allow timely answers from healthcare providers.40 Parents wanted instructions on navigating online health information to help identify credible sources.15 56 Families of children with asthma expressed a need for an online repository with up-to-date, applicable information.44

Peer support through informal learning opportunities, such as parents gathering to socialise and share questions, thoughts, ideas, stories and details about (in)effective approaches, may help improve access to information.42 44 51 Families reported having knowledge and information to care for their sick children is critical to health-related quality of life49 and affects whether they seek and/or receive appropriate healthcare for their children.40

Improved communication and relationships with healthcare providers

Ten papers reported the need for better communication with healthcare providers.42 45–47 49 52–56 Parents understood that healthcare providers cannot always answer their questions, but they wanted honest information and realistic expectations about caring for their children.56 Strong and respectful communication between families and healthcare providers was reported as essential to effectively and meaningfully navigating the healthcare system and ensuring children receive the best possible care.49

Parents wanted to be listened to by healthcare providers52 53 56 and to build trusting relationships across multiple visits.46 53 54 For example, mothers shared that having healthcare providers listen to them validated their concerns, and having healthcare providers acknowledge their expertise and insights as parents contributed to building relationships and positive interactions.52 Another study shared how Elders believe that being listened to is part of healing.48

Families felt more confident caring for their children’s health when anticipatory guidance (eg, what to expect) and collaborative care (eg, holding children during painful procedures, being involved in decisions about their children’s health) were available.52 54 55 Families also wanted healthcare providers to recognise that their information needs change depending on the stage of a child’s illness; parents seek information at diagnosis, but desire a more collegial partnership once they have experience managing their children’s care.56 Strong and respectful communication not only promotes positive interactions with health services, but provides a path for knowledge acquisition which ultimately affects health and well-being.49

Culturally safe healthcare

Eleven articles emphasised the importance of providing culturally safe care, including the ability to understand, respect and engage with Indigenous families’ beliefs and experiences of health, healing, and illness, as well as recognising the detrimental effects of colonisation, racism, and prejudice on healthcare behaviours and experiences.39 41 42 46–48 51 52 54–56 Families wanted healthcare providers to have more awareness and understanding about the importance of connections to extended families and communities.39 Parents reported they feel safe in their communities and prefer to seek care there.48 Families in several studies described the importance of access to culturally appropriate health information39 41 42 51 and wanted healthcare providers to acknowledge the role of traditional medicines and ceremonies in promoting health.54 For example, families living in remote Australian Aboriginal communities highlighted the benefits of traditional ‘bush medicine’ in treating their children’s skin infections.47 Families wanted the option to connect with elders, traditional medicines or ceremonies in healthcare settings.42 44 51 52 54 55 Although healthcare providers may not be able to incorporate traditional Indigenous medicines and healing practices into treatment plans, parents wanted them to respect their roles in health and healing and direct parents to appropriate cultural resources.47 52 Cultural health is important for health and well-being and can go beyond practice and ceremony to focus on identity and one’s place in the world.49 It is important for families to have access to Indigenous healthcare workers/liaisons/peers who can communicate information needs, support outreach activities and/or build relationships with healthcare providers.39 40 42 46 51 52 54–56

Discussion

Our findings reveal a critical gap in the child health information available to Indigenous families. Families act as facilitators, coordinators, caregivers and advocates,56 often putting children’s health needs above their own.15 Strategies to improve information available to Indigenous families cannot be developed without learning from families’ experiences. Because responsibility for finding this information should not rest solely with Indigenous families, we focus our discussion on actions that healthcare providers, organisations, and researchers can take to improve Indigenous families’ access to meaningful child health information.

Our findings show that healthcare providers are key sources of health information for Indigenous families, in line with extant literature.57 58 While difficulties accessing information can be experienced by non-Indigenous families from different racial backgrounds,59 these barriers are intensified for Indigenous families.39 Our scoping review highlights actions that individual healthcare providers can take: listening to patients/families, including them in decision making, providing honest information and answers, and sharing information within families’ communities. This may not require spending more time providing care rather, using time differently (eg, acknowledging that people are doing their best in overwhelming situations) is a critical part of equity-orientated care.60 Many healthcare providers lack training in culturally informed approaches.61 Healthcare providers must be open to lifelong learning, including critical self-reflection on their professional role and institutional power in contributing to culturally (un)safe care.62 Nevertheless, critical changes to organisational structures, policies and practices are also needed to support equitable information access60

Social, economic and political circumstances influence parenting.51 Ensuring safety in seeking health information requires moving beyond the patient–provider relationship and challenging the structural and systemic causes of colonial-based racism in health.63 Health literacy is a central focus of the US Healthy People 2030 framework64 including organisational health literacy, which is how organisations equitably empower individuals to find, understand and use information and services to inform health-related decisions and actions for themselves and others. A commitment to organisational health literacy requires infrastructure that supports respectful, relevant, reciprocal and responsible processes65 to co-create child health information with Indigenous families to ensure it reflects their experiences, needs and preferences.66 Furthermore, it requires investment to increase representation of Indigenous clinicians and provide anti-racist training for all healthcare providers.61

The provision of culturally safe care is mandated through the Truth and Reconciliation Commission’s Calls to Action,1 and the United Nations Declaration on the Rights of Indigenous Peoples.67 Colonialism deeply embedded structural segregation in institutions, including residential schools and hospitals, creating health inequities and a decline in overall health of Indigenous people.68 The legacy of colonisation lives on through people’s thoughts, behaviours, actions and relationships,69 and communities are still healing from this ongoing trauma. Indigenous families’ information needs cannot be understood without also recognising the effects of colonialism in shaping perceptions and decisions.12

Indigenous people cite racism as a common reason for mistrusting healthcare providers70; impacts of racism are reflected in the majority of included papers.39–42 45–50 52–55 Racism is ‘a system of beliefs (racial prejudices), practices (racial discrimination), and policies based on individuals’ presumed race, which operates to advantage those with historical power in most Western nations’.61 Racism operates systemically and permeates healthcare through power and resource imbalances that lead to inequitable and unfair treatment of Indigenous peoples through laws, policies, rules and regulations.62 63 71 Within these systems are individual implicit biases, attitudes and beliefs about race, ethnicity and other characteristics that operate outside a person’s conscious awareness72 and underlie most aspects of racism. Many of the barriers identified in our scoping review (eg, lack of culturally appropriate health information, no access to translated health information, stereotypical assumptions) contribute to unsafe spaces that limit access to child health information, further reinforcing racism.39 73 Moreover, our scoping review reveals a lack of studies in Canada focused on the distinct experiences of Métis or Inuit families, which aligns with the limited health research available for these populations.69 74–77

The way we create and share knowledge matters78 79; researchers have a role in embedding strengths-based and decolonising approaches into the development and dissemination of child health information for Indigenous families. Decolonising approaches involve creating spaces for prioritising Indigenous perspectives and goals,80 and developing a better understanding of the problems faced by Indigenous parents in the healthcare system and how some stories remain dominant (eg, those that maintain existing power dynamics) while others remain marginal.81 Moreover, incorporating an intersectionality lens, which promotes the understanding that people are shaped by different social statuses or categories (eg, gender, race, Indigeneity, class), may help reach families who experience geographic and/or systemic barriers, such as racism and colonialism, or refuse to engage after experiencing unresponsive or disrespectful care.82

Community-based participatory research (CBPR) prioritises the development of culturally centred research designs83 and promotes a strengths-based narrative. Knowledge translation (KT) is ‘a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve health, provide more effective health services and products and strengthen the healthcare system’.84 Using integrated KT85 approaches that recognise, respect and build on pre-existing knowledge systems is fundamental to decolonisation.9 Although integrated KT and CBPR open the door to co-create child health information with Indigenous families, it is important for researchers to acknowledge that co-creation along two epistemologies and ontologies may not result in neatly packaged resources. In some cases, they cannot be reconciled and must remain two perspectives.86 Ermine86 explored the idea of an ‘ethical space’ (or neutral zone) which is formed when societies with contrasting worldviews are poised to engage each other. Conversations can involve issues like language, distinct histories, knowledge traditions, values, and social, economic, and political realities and how these issues impact and influence agreements to interact.86 Interactions in this space have not received adequate attention in KT scholarship.87 Researchers must be aware of power in research relationships and work with families to find strategies that respectfully and meaningfully equalise relationships87 to create useful child health resources.

Strengths and limitations

Given the complex nature of accessing health information and the various ways this access is defined or understood, we may have missed studies relevant to our review. However, a strength of this review is the involvement of an academic librarian with significant expertise in creating robust search strategies for Indigenous-focused research. Another strength is that multiple reviewers were involved in screening and data extraction.24 25 We only included literature published in English due to budget and time restrictions, which may impact comprehensiveness and generalisability. Methodological quality/risk of bias of individual studies was not assessed, however, this is consistent with methodological guidance.31

Conclusion

Health information is a fundamental component of high-quality healthcare. Results of our scoping review indicate that Indigenous families perceive they do not have access to necessary information to care for sick children, which can lead to insensitive, ineffective and unsafe healthcare. Additionally, there is a critical gap in understanding the information needs and preferences of Indigenous families when making decisions about children’s health. Strategies to improve information available to Indigenous families cannot be developed without learning from families’ experiences and the responsibility for finding this information should not rest solely with Indigenous families. Our findings will inform the adaptation of a child health resource for Red River Métis families in Canada. Future research is needed on the co-creation of information with Indigenous families and communities to expose and challenge existing colonial processes that are perpetuating inequitable access to child health information. This research must be supported at an organisational level to translate findings and address diverse child healthcare information needs and preferences for Indigenous families.

Data availability statement

No data are available.

Ethics statements

Patient consent for publication

Acknowledgments

The authors would like to thank Dr. Julianne Sanguins from the Manitoba Métis Federation for her ongoing support and guidance to engage MMF leadership and Red River Métis families in all aspects of our research project.

References

Supplementary materials

Footnotes

  • Twitter @knisleyl

  • Contributors All authors contributed to the study design. LK drafted the manuscript, and JL, SMD, LH, YS and SS made substantive revisions to it. LK is responsible for the overall content as guarantor.

  • Funding This work was supported by the Strategy for Patient Orientated Research (SPOR) Evidence Alliance (grant no. N/A). SS holds a Canada Research Chair in Knowledge Translation in Child Health (grant no. 231687). LH holds a Canada Research Chair in Knowledge Synthesis and Translation (grant no. N/A). SS and LH are Distinguished Researchers through the Stollery Science Lab, Stollery Children’s Hospital Foundation (grant no. 2677).

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.