Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain
Kathryn A. Birnie, Tieghan Killackey, Gillian Backlinp, Frank Gavinp, Christine Harrisp, Isabel Jordanp, Laesa Kimp, Justina Marianayagamp, Jenna Swidrovichp, Corinne Lalonde, Lanre Tunji-Ajayi, Tim Oberlander, Melanie Kirby-Allen, Simon Lambert, Hal Siden, Jaris Swidrovich, Melanie Noel, Chitra Lalloo and Jennifer Stinson
Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.
The COVID-19 pandemic necessitated a rapid and wide-scale pivot to virtual care across all areas of health, including for youth living with chronic pain (Bokolo 2020; D'Alessandro et al. 2020; Eccleston et al. 2020). Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada (Birnie et al. 2019), and the COVID-19 pandemic has exacerbated these concerns with the closure of clinics and therapies (Cohen et al. 2020; Eccleston et al. 2020; Killackey et al. 2021; Shanthanna et al. 2020). Early treatment of pain in youth is critical to prevent persisting pain, mental health and substance use issues into adulthood (Groenewald et al. 2019; Kashikar-Zuck et al. 2014; Murray et al. 2019; Walker et al. 2010, 2012), and the COVID-19 pandemic has only reinforced that necessity. In 2020, members of our team received a Canadian Institutes of Health Research (CIHR) rapid COVID-19 Knowledge Synthesis Grant to review existing scientific literature to identify recommendations for best practices for virtual care for youth with chronic pain and their families (Birnie et al. 2021a). The 16 scientific articles included in our scoping review highlighted a range of recommendations related to leveraging and implementing virtual care, selecting best virtual care platforms and identifying limitations and considerations for remaining research priorities for pediatric chronic pain. These articles also underscore the immense potential for harnessing virtual care to address this growing population. These themes were summarized in a one-page infographic available in English and in French (https://partneringforpain.com/) (Birnie et al. 2021a). This review was intended to guide healthcare professionals and decision makers in evidence-informed practice and policy.
However, in undertaking this scoping review, our team recognized the omission of diverse populations or population groups in the included studies that identified best practices for virtual care for youth with chronic pain. In general, pain services and research disproportionately exclude individuals who are marginalized, such as people who are Indigenous, Black or Persons of Colour, or people who cannot communicate verbally, among others, despite being vulnerable to a higher prevalence of chronic pain and less likely to be able to access virtual care (e.g., poorer Internet access; Craig et al. 2019; Crawford and Serhal 2020; Latimer et al. 2018). According to the International Association for the Study of Pain, populations can be considered vulnerable due to (i) physical, psychological and/or verbal impairments, (ii) social circumstances or (iii) shortcomings in healthcare and are at risk of being under-assessed and undertreated for pain (IASP n.d.). It is imperative that recommendations for virtual care include the perspectives of diverse and vulnerable pain populations that are underrepresented in existing clinical care and scientific literature. Evidence-based and emerging virtual treatments exist for pediatric pain generally (Birnie et al. 2021b), but implementation and access are sparse.
Project Objectives and Overview
The aim of our project was to engage with diverse youth with chronic pain and their families to ensure that recommendations for best practices for virtual care are inclusive and equitable. We engaged Black youth with sickle cell disease, Indigenous youth (including all of First Nations [status and non-status], Métis and Inuit) and youth with complex medical needs (including youth with brain-based developmental disabilities), their parents/caregivers and healthcare professionals in collaborative dialogue regarding recommendations for virtual care for chronic pain identified in our original scoping review (Birnie et al. 2021a). These populations were specifically selected because they are susceptible to inequities in pain care (Craig et al. 2019) and healthcare access (Kuo et al. 2014), experience stigmatization (Jenerette and Brewer 2010; Wakefield et al. 2017) and systemic barriers (i.e., systemic racism; Anastas et al. 2020; Latimer et al. 2018; Wylie et al. 2019) or may be impacted by socio-economic factors that further exacerbate existing inequities (Ambrose 2020), all of which can ultimately impact virtual care delivery. Virtual care is here to stay, and we must ensure that it meets the needs of diverse youth and their families. Creating space for patient and family voices to direct decisions regarding virtual care best practices in Canada is both timely, given the COVID-19 pandemic, and long overdue, given their integral role as partners in virtual care.
Knowledge Translation Goals and Activities
With support through an EMPOWER (Engaging Multi-stakeholders for Patient Oriented-research Wider Effects and Reach) award from the Ontario SPOR (Strategy for Patient-Oriented Research) SUPPORT Unit (OSSU), our team set three primary knowledge translation goals:
- to facilitate collaborative dialogue regarding recommendations for virtual care for diverse chronic pain populations – specifically Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs – and their families;
- to engage diverse stakeholders and rights holders in contributing to recommendations for virtual care best practices in pediatric chronic pain; and
- to share findings related to identified recommendations for virtual care with relevant stakeholder and rights holder groups and explore how these recommendations may be tailored to best address the needs of diverse chronic pain populations.
Knowledge translation goals were achieved through co-facilitation of virtual interactive round-table discussions and engagement conducted separately with each group (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs, including youth with a brain-based developmental disability) and stakeholder or Indigenous rights holder type (youth, parents/caregivers). Each session was tailored based on conversations with relevant patient partners and partner organizations, with some conducted in groups and others via individual interviews.
Patient Partner Roles
Our team used the term "patient partner" according to the CIHR definition to refer to individuals with personal experience of a health issue (i.e., chronic pain during childhood) and informal caregivers, including family and friends (CIHR 2018). Our team included nine patient partners with lived experience relevant to one of the three population groups of interest, as well as pediatric pain researchers, healthcare professionals and partner organization collaborators (Complex Care for Kids Ontario [CCKO], CHILD-BRIGHT Network – National Youth Advisory Panel [NYAP], Sickle Cell Awareness Group of Ontario [SCAGO], Network Environments for Indigenous Health Research [NEIHR] National Coordinating Centre and Solutions for Kids in Pain [SKIP]).
Patient partners were included as equal members of the research team, and partnership was sustained through regular virtual meetings and e-mail communication altogether, and separate communication was maintained for each population group of interest as well. This structure enabled continuity as well as flexibility for each population group to design and carry out engagement in ways that increased accessibility and equity for patient partners and community members. Interactive round-table discussions were co-designed for each population group in collaboration with patient partners and relevant partner organizations. Patient partners were centrally involved in facilitating all the round-table discussion sessions, including how engagement created a safe space for open dialogue and selecting questions for session evaluation. At each interactive round-table discussion, research and health professional team members were also present to provide a brief overview of the previously completed scoping review (Birnie et al. 2021a). Patient partners also contributed to synthesis and presentation of what we learned, including infographics and co-presentation of project findings.
The team's collaborative approach was reflected by a parent/caregiver patient partner:
Among the many things I appreciated was that we – the three parents – had quite a bit of choice about how and how much we would be involved … More importantly, we were encouraged to provide suggestions about every aspect of the sessions and saw all of them taken up and applied. For instance, we recommended that there be two sessions rather than one (with the same group of participants), since that would give participants a chance to reflect over the course of a week on what they had heard and said and perhaps make it easier for the less-quick-to-speak parents to contribute more to the discussion. We also provided suggestions on the recruiting materials, the land acknowledgement, the "ice-breaker" and the questions or prompts themselves. And the "wrap-up" session was a chance not only to review the process but to add our own further thoughts.
Feedback from patient partners reflected the team's success in achieving meaningful, inclusive, accessible and collaborative partnership. As shared by a youth patient partner:
First and foremost, I would like to thank the team for allowing me to partake in this project through co-facilitating and sharing my story along with the other youth. I was impressed by their eagerness to learn from me and each other participant about their experiences. Their genuine interest in creating a fruitful and accessible discussion for all made this process comfortable and enjoyable from start to finish. I really appreciated that accessibility was always prioritized. They thought of everything, from time zones to content format. The team was very approachable and a pleasure to work with.
Interactive round-table discussions were held via Zoom from November 2020 to January 2021. In total, 11 Black youth with sickle cell disease and seven parents/caregivers, two Indigenous youth with chronic pain and one parent/caregiver, and three youth with complex medical needs and four parents/caregivers were engaged.
Each virtual engagement session was evaluated using four questions adapted from the Patient and Public Engagement and Evaluation Tool module for one-time engagement activities (Abelson et al. 2016; Abelson and The PPEET Research-Practice Collaborative 2018). Of the 11 round-table discussion participants who completed the post-session evaluations, all agreed that they felt that their views were heard, that the goals of the sessions and questions presented were clear and that the engagement initiative was a good use of their time. All but one (91%) agreed that they were confident that the input provided through the engagement initiative would be used.
Suggestions made during the round-table discussions revealed additions or modifications to the best practices for virtual care for youth with chronic pain and their families not identified in the previous scoping review (Birnie et al. 2021a):
- Leveraging virtual care: (1) It may be an opportunity to increase positive healthcare experiences, reducing stigma, bias and discrimination in the healthcare system, thereby encouraging those in the 2SLGBTQ+ (Two-Spirit, Lesbian, Gay, Bisexual, Trans, Queer+) and BIPOC (Black, Indigenous and People of Colour) communities to access healthcare. (2) It will allow patients and families to access care in their own environment. (3) It will provide more opportunity for culturally inclusive practices (e.g., Indigenous youth may smudge in their own environments before an appointment).
- Improving implementation of virtual care: (1) Clinical environments should be arranged to support virtual care (e.g., limited distractions, private environment). (2) Appointment time and duration should be respected as much as possible by healthcare professionals, patients and families with consideration given to building trust and connection.
- Selecting best platforms for virtual care: (1) The virtual care platform should facilitate virtual medical education, teaching and demonstration for patients, families and caregivers (e.g., how to flush a line). (2) It should allow patients, families and caregivers to easily access and manage health information. (3) It should be able to accommodate care with multiple healthcare professionals in one visit.
- Identfying gaps in virtual care: (1) Solutions are required to increase equity across Canada (e.g., reliable access to the Internet and technology required for virtual care). (2) Decisions for the type of care (virtual vs. in-person) should be made in collaboration with patients and families.
These findings are being integrated into a policy brief and revised infographic (see Figures 1 and 2 for the English- and French-language versions, respectively). These are shared on our project website: www.partneringforpain.com/portfolio/virtual-care. We have previously shared a poster about our project at the CHILD-BRIGHT virtual symposium, which was co-presented by patient partners. Members of our team have also been invited to engage with national decision makers and policy makers, such as Canada Health Infoway and Health Canada, working to improve virtual care.
Key Messages and Implications
An important reflection from our team is that partnership is key to equitable, diverse and inclusive engagement, particularly when engaging with populations or population groups who are marginalized (Craig et al. 2019). Strong partnership is created when each person can contribute their unique expertise and see their expertise both used and respected. Specifically, our team worked closely to empower patient partners to co-design and lead facilitation of engagement sessions to ensure that participants felt safe and respected. Contributions from patient partners led to the expansion of round-table discussions to two sessions instead of one for each group and also resulted in more clearly worded questions to guide the conversation. Working with each partner organization was critical for effectively reaching out and engaging with each population group. There was a need to be flexible within the engagement process to meet the different needs of each population group and address emerging challenges, such as shifting from group to individual and family-based engagement with Indigenous youth with chronic pain and their families.
Our interactive round-table discussion sessions were conducted using Zoom. Virtual activities both facilitated and hindered equitable, diverse, inclusive and accessible engagement. For example, going virtual made it more possible to engage with people across the country, but it likely limited our ability to reach those with poorer access to the Internet and communities where in-person community-based engagement is valued (e.g., with Indigenous communities).
The round-table discussion sessions provided new insights to improve equity and accessibility of best practices for virtual care. Patient engagement offered an opportunity to critically expand on and refine learnings from the scientific literature, in this case on a rapidly emerging widespread need for virtual care for pain during the COVID-19 pandemic.
This work was funded by an EMPOWER Award from OSSU. It builds on work completed as part of a Knowledge Synthesis Grant: COVID-19 Rapid Research Funding Opportunity in Mental Health and Substance Use operating grant from CIHR.
About the Author(s)
Kathryn A. Birnie, PhD RPsych, is an assistant professor in the Department of Anesthesiology, Perioperative and Pain Medicine at the University of Calgary; the Alberta Children's Hospital Research Institute; and the Hotchkiss Brain Institute. She is also the associate scientific director of SKIP. Kathryn is a clinical psychologist and lead for the Partnering For Pain patient-oriented research program in Calgary, AB, and the traditional territories of the people of the Treaty 7 Region in Southern Alberta and Métis Nation of Alberta, Region 3. She can be contacted at firstname.lastname@example.org.
Tieghan Killackey, PhD, RN, is a postdoctoral fellow at The Hospital for Sick Children in Toronto, ON. Tieghan is also a registered nurse and a postdoctoral researcher.
Gillian Backlin is a person with lived experience and is a member of NYAP, CHILD-BRIGHT Network in Vancouver, BC.
Frank Gavin, MA, is a parent partner and former director of Citizen Engagement at CHILD-BRIGHT Network in Toronto, ON.
Christine Harris, MDes, is a person with lived experience and an innovation manager at Canadian Cancer Society in Toronto, ON.
Isabel Jordan, BSc (Hons), is a person with lived experience and a parent partner in Squamish, BC.
Laesa Kim, BFA, is a parent partner in Vancouver, BC.
Justina Marianayagam, BHSc, is a person with lived experience and an MD student at the Northern Ontario School of Medicine in Thunder Bay, ON.
Jenna Swidrovich, BSN, is a member of Yellow Quill First Nation (Treaty 4) and is a woman with lived experience on Treaty 6 territory (Saskatoon, SK), which is the traditional lands of the Cree, Saulteaux, Dene, Dakota, Lakota, Nakota and Métis nations.
Corinne Lalonde, MA, is the CHILD-BRIGHT Citizen Engagement program coordinator, working with parents and youth, and is a member of the Board of Directors at Soutien Autism Support (S.Au.S), a community organization that provides leisure programs to families and youth living with autism in Montreal, QC.
Lanre Tunji-Ajayi, MSM, is the president/CEO of SCAGO in Toronto, ON.
Tim Oberlander, MD FRCPC, is a professor at the Department of Pediatrics, School of Population and Public Health, University of British Columbia, and an attending physician at the Complex Pain Service, BC Children's Hospital in Vancouver, BC.
Melanie Kirby-Allen, MD, is a staff haematologist at The Hospital for Sick Children and an associate professor at the University of Toronto in Toronto, ON.
Simon Lambert, PhD, is the executive director of the NEIHR National Coordinating Centre and an associate professor at the University of Saskatchewan in Saskatoon, SK.
Hal Siden, MD MHSc, is a clinical professor at the University of British Columbia, medical director of Canuck Place Children's Hospice and an investigator and division head of BC Children's Hospital in Vancouver, BC.
Jaris Swidrovich, BSP, PharmD, is a member of Yellow Quill First Nation (Treaty 4) and is an assistant professor in the Leslie Dan Faculty of Pharmacy at the University of Toronto in Toronto, ON.
Melanie Noel, PhD RPsych, is an associate professor and clinical psychologist at the University of Calgary, the Alberta Children's Hospital Research Institute and the Hotchkiss Brain Institute in Calgary, AB.
Chitra Lalloo, PhD, is a research associate at The Hospital for Sick Children in Toronto, ON.
Jennifer Stinson, PhD, RN, is a senior scientist at The Hospital for Sick Children and a professor at the University of Toronto in Toronto, ON.
The authors would like to acknowledge key contributions to and collaboration on the original systematic review identifying best practices for virtual care for youth with chronic pain and their families by the following individuals: Evie Jordan, Alexandra Neville, Maria Pavlova, Fiona Campbell and Diane Lorenzetti, as well as Healthcare Excellence Canada (formerly the Canadian Foundation for Healthcare Improvement). The authors also express sincere gratitude to Judy Pelly (Saulteaux Elder and Knowledge Keeper), Vina Mohabir (research assistant), CCKO, CHILD-BRIGHT Network – NYAP, SCAGO, NEIHR, SKIP, PainBC and Bright By Design for their partnership in this work.
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P = Patient partner..
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