Bridging the gap: Identifying diverse stakeholder needs and barriers to accessing evidence and resources for children’s pain

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ABSTRACT

Background

Stakeholder engagement in knowledge mobilization (KMb) activities can bridge the knowledge to action gap within children’s pain but may be influenced by how well stakeholder needs and barriers to evidence-based resources are addressed. The needs of different Canadian stakeholder groups related to children’s pain have not been examined, limiting the degree to which KMb efforts can be tailored to each group.

Aims

The study aim was to identify shared and unique needs, barriers, and accessibility of evidence for children’s pain across three stakeholder groups: knowledge users (i.e., health professionals, administrators, policymakers, educators), researchers (including trainees), and patients, caregivers, and family members.

Methods

This study comprised an online needs assessment survey. Analyses included descriptive statistics, one-way analyses of variances, and chi-square tests to examine differences between stakeholder groups. Open-ended responses were analyzed using conventional content analysis.

Results

A total of 711 stakeholders completed the survey. Educational materials were the most utilized evidence-based resources among all stakeholders. Researchers and patients/caregivers/family members found resources significantly less accessible than knowledge users (P = 0.008). Knowledge of evidence was the primary barrier across all stakeholder groups (69.2%, n = 492); however, each group reported a need for stakeholder-specific resources. Finally, stakeholders desired opportunities to engage in the KMb process through partnerships and an increased awareness of children’s pain.

Conclusions

Though stakeholders experience common barriers to evidence-based resources for children’s pain, their needs to address these barriers are diverse. Evidence-based resources should be tailored for stakeholders’ contexts, with diverse audiences in mind.

RÉSUMÉ

Contexte: L'engagement des parties prenantes dans les activités de mobilisation des connaissances peut combler les lacunes entre les connaissances et l'action en matiére de douleur chez les enfants, mais peut être influencé par la mesure dans laquelle les besoins des parties prenantes et les obstacles auxquelles elles font face sont abordés. Les besoins des différents groupes de parties prenantes en matiére de douleur chez les enfants n'ont pas été examinés, ce qui limite la mesure dans laquelle les efforts de mobilisation des connaissances peuvent être adaptés àchaque groupe.

Objectifs: L'objectif de l'étude était de recenser les besoins communs et particuliers, les obstacles et l'accessibilité des données probantes en matiére de douleur chez les enfants dans trois groupes de parties prenantes: les utilisateurs des connaissances (c.-à-d. les professionnels de la santé, les administrateurs, les décideurs, les enseignants), les chercheurs (y compris les stagiaires) et les patients, prestataires de soins et membres de la famille.

Méthodes: Cette étude comprenait une enquête en ligne sur l'évaluation des besoins. Les analyses comprenaient des statistiques descriptives, des analyses unidirectionnelles des variances et des tests du chi carré afin d’examiner les différences entre les groupes de parties prenantes. Les réponses ouvertes ont été analysées à l'aide d'une analyse de contenu classique.

Résultats: Au total, 711 intervenants ont répondu au sondage. Le matériel pédagogique était la ressource fondée sur des données probantes la plus utilisée par toutes les parties prenantes. Les chercheurs et patients/prestataires de soins/membres de la famille ont trouvé les ressources beaucoup moins accessibles que les utilisateurs des connaissances (P = 0,008). La connaissance des données probantes était le principal obstacle dans tous les groupes de parties prenantes (69,2 %, n = 492); cependant, chaque groupe a fait état d'un besoin de ressources spécifique à chaque partie prenante. Enfin, les parties prenantes souhaitaient avoir l’occasion de s'engager dans le processus de mobilisation des connaissances par le biais de partenariats et d’une prise de conscience accrue de la douleur chez les enfants.

Conclusions: Bien que les parties prenantes rencontrent des obstacles communs aux ressources fondées sur des données probantes en matiére de douleur chez les enfants, leurs besoins pour s'attaquer à ces obstacles sont divers. Les ressources fondées sur les données probantes devraient être adaptées aux contextes des parties prenantes, en gardant la diversità des publics à l'esprit.

Acknowledgments

We acknowledge the important contributions made to this project by Olivia Piccolo, Chad Larabie, Doug Maynard, Paula Robeson, Elise Kammerer, Aimee White, and the rest of the Solutions for Kids in Pain network.

Author Contributions

All authors meet the ICMJE requirements for authorship. NEM made substantial contributions to the conception and design, data acquisition, data analysis, and interpretation of data. CTT, KAB, and JAP made substantial contributions to the conception and design and interpretation of data. IJ, DPR, and EA made substantial contributions to the conception and design of the study. All authors were involved in drafting and revising the article. All authors read and approved the final article.

Availability of Data and Materials

The data sets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Disclosure Statement

Nicole E. MacKenzie is currently funded by Maritime SPOR Support Unit, Research Nova Scotia, Killam Trusts, and a Nova Scotia Graduate Scholarship. Christine T. Chambers currently receives funding from Canada Research Chair, the Canadian Foundation for Innovation, and the Dalhousie Medical Research Foundation and is the scientific director of Solutions for Kids in Pain (SKIP). Jennifer A. Parker does not have any conflicts of interest. Erin Aubrey is a former knowledge broker for SKIP. Isabel Jordan is a patient and caregiver partner for SKIP and co-chair of SKIP’s Patient and Caregiver Advisory Committee. Dawn P. Richards is a former co-chair of SKIP's Patient and Caregiver advisory committee, and she is also an employee of Five02Labs, Inc, which has received consulting fees from the Chronic Pain Network and CIHR's Institute of Musculoskeletal Health and Arthritis related to patient engagement work. Samina Ali is a SKIP hub lead at Stollery Children’s Hospital. Fiona Campbell is a SKIP hub lead at the Hospital for Sick Children. G. Allen Finley is a SKIP hub lead at IWK Health. Emily Gruenwoldt is the SKIP knowledge user director. Bonnie Stevens is a former SKIP hub lead at the Hospital for Sick Children. Jennifer Stinson is a SKIP hub lead at the Hospital for Sick Children. Kathryn A. Birnie is the associate scientific director for SKIP and currently receives funding from the Canadian Institutes of Health Research, the Chronic Pain Network, and the Canadian Pain Society.

Ethics Approval and Consent to Participate

This study was approved by the IWK Health Centre Research Ethics Board and the need for retrospective consent from respondents was deemed unnecessary.

Supplementary Material

Supplemental data for this article can be accessed on the publisher’s website.

Additional information

Funding

This work was supported by a CIHR Operating Grant (#Canadian Institutes of Health Research 167902) awarded to CTC. NEM is supported by awards from the Maritime SPOR Support Unit, Research Nova Scotia, Killam Trusts, and a Nova Scotia Graduate Scholarship. CTC is supported by a Canada Research Chair (Tier 1), the Canada Foundation for Innovation, and funding from the Dalhousie Medical Research Foundation. Solutions for Kids in Pain is funded by Networks of Centres of Excellence of Canada andother partners.