Equity, Diversity, and Inclusion

EDI context in Sleep Research

Historically, sleep and biological rhythm research has overlooked several groups that may be particularly affected.(1) Indeed, most studies have included participants from majority groups, primarily white individuals of European descent, and have very rarely considered the effects of age, sex, racialized identity, socio-economic status, gonadal hormones, gender identity, sexual orientation, etc.(2,3,4) Vulnerable groups—such as racialized groups, sexual and gender minorities, Indigenous communities, migrants, as well as older adults or individuals of lower socio-economic status—face additional barriers to sleep health,(5,6,7,8) e.g., stigma and discrimination,(9,10) communication challenges within the healthcare system, housing that is too hot in summer or too cold in winter, noisy environments, shared bedrooms with several people or, conversely, living alone or in long-term care facilities, and stress related to food insecurity.(10,11,12,13,14) Studies have highlighted concerning inequities in access to quality sleep, which will be exacerbated by climate change.(15) Such inequities also shape access to healthcare more broadly, particularly for First Nations, Inuit, Métis, and other racialized populations.(16,17) Sleep habits and the importance placed on sleep are also influenced by cultural and social norms. For example, co-sleeping or room-sharing with infants, as well as the practice of taking an afternoon nap in adulthood, are encouraged in some cultures and discouraged in others. (18,19) This underscores the need to conduct research to design and evaluate culturally sensitive sleep health programs. Finally, sleep disorders can represent a chronic condition and a form of disability, often invisible. Some individuals with severe sleep disorders, such as narcolepsy, report experiencing academic and professional difficulties, even leading to job loss.(20,21) It is therefore relevant to also consider them as a vulnerable group and to take their lived experiences into account to better guide interventions.(22)

Objectives of the Network

The Sleep Network seeks to foster innovation so that research and knowledge mobilization are inclusive, representative of the diversity of people in Québec and beyond, and responsive to the inequities faced by minorities, Indigenous communities, disadvantaged populations, and individuals with sleep disorders. More specifically, the Sleep Network aims to:

1. Create an inclusive, diverse, and equitable research ecosystem, where all members of the scientific community can feel welcomed and supported, regardless of their background, gender identity, sexual orientation, socio-economic status, etc. Governance is structured with the objective of gender parity and diversity in career stages, ethnocultural origins, 2SLGBTQ+ representation, and disability status.
2. Ensure equity in opportunities to learn, receive support, and contribute to sleep research.
3. Support and develop projects that integrate EDI principles.
4. Promote equity in knowledge mobilization so that all members of the population have access to sleep-related knowledge.
5. Acknowledge the lived experiences of people with sleep and circadian rhythm disorders in academic and professional contexts.

Consideration of EDI Criteria in Research According to FRQ

For more information on EDI criteria in research as defined by the Fonds de recherche du Québec (FRQ), as well as the actions they have implemented, click here.

Example of EDI Integration in Sleep Research:

• Training offered in remote regions (e.g., hybrid format) and accessible to all groups (low-cost or free);
• Consideration of the effects of gender, sex, sexual orientation, ethnic background, gonadal hormones, etc., when these characteristics are relevant;
• Development of technologies to increase access to diagnosis (e.g., low-cost ambulatory devices);
• Validation of technologies among minority or marginalized populations.

References

1. Alcantara C, Giorgio Cosenzo L, McCullough E, Vogt T, Falzon AL, Perez Ibarra I. Cultural adaptations of psychological interventions for prevalent sleep disorders and sleep disturbances: A systematic review of randomized controlled trials in the United States. Sleep Med Rev. Apr 2021;56:101455. doi:10.1016/j.smrv.2021.101455
2. Yan L, Silver R. Neuroendocrine underpinnings of sex differences in circadian timing systems. J Steroid Biochem Mol Biol. Jun 2016;160:118-26. doi:10.1016/j.jsbmb.2015.10.007
3. Kervezee L, Shechter A, Boivin DB. Impact of Shift Work on the Circadian Timing System and Health in Women. Sleep Med Clin. Sep 2018;13(3):295-306. doi:10.1016/j.jsmc.2018.04.003
4. Boivin DB, Shechter A, Boudreau P, Begum EA, Ng Ying-Kin NM. Diurnal and circadian variation of sleep and alertness in men vs. naturally cycling women. Proc Natl Acad Sci U S A. Sep 27 2016;113(39):10980-5. doi:10.1073/pnas.1524484113
5. Baskaran A, Marogi E, Bitar R, Attarian H, Saadi A. Improving Sleep Health Among Refugees: A Systematic Review. Neurol Clin Pract. Apr 2023;13(2):e200139. doi:10.1212/CPJ.0000000000200139
6. Johnson DA, Ohanele C, Alcantara C, Jackson CL. The Need for Social and Environmental Determinants of Health Research to Understand and Intervene on Racial/Ethnic Disparities in Obstructive Sleep Apnea. Clin Chest Med. Jun 2022;43(2):199-216. doi:10.1016/j.ccm.2022.02.002
7. Strassle PD, Wilkerson MJ, Stewart AL, et al. Impact of COVID-related Discrimination on Psychological Distress and Sleep Disturbances across Race-Ethnicity. J Racial Ethn Health Disparities. May 1 2023:1-11. doi:10.1007/s40615-023-01614-5
8. Yiallourou SR, Maguire GP, Eades S, Hamilton GS, Quach J, Carrington MJ. Sleep influences on cardio-metabolic health in Indigenous populations. Sleep Med. Jul 2019;59:78-87. doi:10.1016/j.sleep.2018.10.011
9. Nagata JM, Lee CM, Yang JH, et al. Sexual Orientation Disparities in Early Adolescent Sleep: Findings from the Adolescent Brain Cognitive Development Study. LGBT Health. Mar 21 2023;doi:10.1089/lgbt.2022.0268
10. Gibbs JJ, Fusco RA. Minority stress and sleep: How do stress perception and anxiety symptoms act as mediators for sexual minority men? Sleep Health. Apr 2023;9(2):136-143. doi:10.1016/j.sleh.2023.01.002
11. Rocque R, Leanza Y. A Systematic Review of Patients’ Experiences in Communicating with Primary Care Physicians: Intercultural Encounters and a Balance between Vulnerability and Integrity. PLoS One. 2015;10(10):e0139577. doi:10.1371/journal.pone.0139577
12. Papadopoulos D, Etindele Sosso FA. Socioeconomic status and sleep health: a narrative synthesis of 3 decades of empirical research. J Clin Sleep Med. Mar 1 2023;19(3):605-620. doi:10.5664/jcsm.10336
13. Perez LG, Siconolfi D, Troxel WM, et al. Loneliness and multiple health domains: associations among emerging adults. J Behav Med. Apr 2022;45(2):260-271. doi:10.1007/s10865-021-00267-1
14. Alhasan DM, Riley NM, Jackson Ii WB, Jackson CL. Food insecurity and sleep health by race/ethnicity in the United States. J Nutr Sci. 2023;12:e59. doi:10.1017/jns.2023.18
15. Bragazzi NL, Garbarino S, Puce L, et al. Planetary sleep medicine: Studying sleep at the individual, population, and planetary level. Front Public Health. 2022;10:1005100. doi:10.3389/fpubh.2022.1005100
16. Pandi-Perumal SR, Abumuamar AM, Spence DW, Chattu VK, Moscovitch A, BaHammam AS. Racial/Ethnic and Social Inequities in Sleep Medicine: The Tip of the Iceberg? J Natl Med Assoc. Winter 2017;109(4):279-286. doi:10.1016/j.jnma.2017.04.005
17. Marchildon GP, Beck CA, Katapally TR, Abonyi S, Dosman JA, Episkenew JA. Bifurcation of Health Policy Regimes: A Study of Sleep Apnea Care and Benefits Coverage in Saskatchewan. Healthc Policy. May 2017;12(4):69-85. Bifurcation des regimes de politiques de sante : etude des soins pour l’apnee du sommeil et des couvertures d’assurance en Saskatchewan. doi:10.12927/hcpol.2017.25097
18. Mileva-Seitz VR, Bakermans-Kranenburg MJ, Battaini C, Luijk MP. Parent-child bed-sharing: The good, the bad, and the burden of evidence. Sleep Med Rev. Apr 2017;32:4-27. doi:10.1016/j.smrv.2016.03.003
19. Glaskin K, Chenhall R. Sleep around the world. Anthropological perspectives. Culture, mind, and society (CMAS). Palgrave Macmillan; 2013:245.
20. Flores NM, Villa KF, Black J, Chervin RD, Witt EA. The Humanistic and Economic Burden of Narcolepsy. J Clin Sleep Med. Mar 2016;12(3):401-7. doi:10.5664/jcsm.5594
21. Maski K, Steinhart E, Williams D, et al. Listening to the Patient Voice in Narcolepsy: Diagnostic Delay, Disease Burden, and Treatment Efficacy. J Clin Sleep Med. Mar 15 2017;13(3):419-425. doi:10.5664/jcsm.6494
22. Janssens K, Amesz P, Nuvelstijn Y, et al. School Problems and School Support for Children with Narcolepsy: Parent, Teacher, and Child Reports. Int J Environ Res Public Health. Mar 15 2023;20(6)doi:10.3390/ijerph20065175