{"id":1656,"date":"2024-08-07T14:11:05","date_gmt":"2024-08-07T14:11:05","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/toulany\/?p=1656"},"modified":"2024-12-11T17:44:40","modified_gmt":"2024-12-11T17:44:40","slug":"youth-and-family-specific-engagement-in-research","status":"publish","type":"post","link":"https:\/\/lab.research.sickkids.ca\/toulany\/youth-and-family-specific-engagement-in-research\/","title":{"rendered":"Youth and Family Specific Engagement in Research"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1216.8px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-blend:overlay;--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><strong>Title:<\/strong> Yo<span style=\"text-decoration: underline\"><strong>u<\/strong><\/span>th a<span style=\"text-decoration: underline\"><strong>n<\/strong><\/span>d Fam<span style=\"text-decoration: underline\"><strong>i<\/strong><\/span>ly Specific Engagemen<span style=\"text-decoration: underline\"><strong>t<\/strong><\/span> in R<span style=\"text-decoration: underline\"><strong>e<\/strong><\/span>search (UNITE): A Framework Development Project<\/p>\n<p><strong>Funder: <\/strong><a href=\"https:\/\/can01.safelinks.protection.outlook.com\/?url=https%3A%2F%2Fwebapps.cihr-irsc.gc.ca%2Fdecisions%2Fp%2Fproject_details.html%3FapplId%3D495372%26lang%3Den&amp;data=05%7C02%7Cnaba.khan%40sickkids.ca%7C1792003cc4b542914f6d08dcb6e7b23e%7C3961553ff47e49eb9f6ccf8518914e9a%7C0%7C0%7C638586353439867105%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&amp;sdata=Zi%2BDNk9JO58AGsHGfaSxn0R2pmEdStIKetPYUWdshOM%3D&amp;reserved=0\" target=\"_blank\" rel=\"noopener noreferrer\">Canadian <\/a><a href=\"https:\/\/can01.safelinks.protection.outlook.com\/?url=https%3A%2F%2Fwebapps.cihr-irsc.gc.ca%2Fdecisions%2Fp%2Fproject_details.html%3FapplId%3D495372%26lang%3Den&amp;data=05%7C02%7Cnaba.khan%40sickkids.ca%7C1792003cc4b542914f6d08dcb6e7b23e%7C3961553ff47e49eb9f6ccf8518914e9a%7C0%7C0%7C638586353439867105%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&amp;sdata=Zi%2BDNk9JO58AGsHGfaSxn0R2pmEdStIKetPYUWdshOM%3D&amp;reserved=0\" target=\"_blank\" rel=\"noopener noreferrer\">Institutes<\/a><a href=\"https:\/\/can01.safelinks.protection.outlook.com\/?url=https%3A%2F%2Fwebapps.cihr-irsc.gc.ca%2Fdecisions%2Fp%2Fproject_details.html%3FapplId%3D495372%26lang%3Den&amp;data=05%7C02%7Cnaba.khan%40sickkids.ca%7C1792003cc4b542914f6d08dcb6e7b23e%7C3961553ff47e49eb9f6ccf8518914e9a%7C0%7C0%7C638586353439867105%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&amp;sdata=Zi%2BDNk9JO58AGsHGfaSxn0R2pmEdStIKetPYUWdshOM%3D&amp;reserved=0\" target=\"_blank\" rel=\"noopener noreferrer\"> of Health Research (CIHR)<\/a><\/p>\n<p><strong>Role: <\/strong><span style=\"color: var(--awb-text-color);font-family: var(--awb-text-font-family);font-size: var(--awb-font-size);font-style: var(--awb-text-font-style);font-weight: var(--awb-text-font-weight);letter-spacing: var(--awb-letter-spacing);text-align: var(--awb-content-alignment);text-transform: var(--awb-text-transform);background-color: var(--awb-bg-color-hover)\">Nominated Principal Investigator: Munce, Sarah; Co-Principal Investigators: <\/span><span style=\"color: var(--awb-text-color);font-family: var(--awb-text-font-family);font-size: var(--awb-font-size);font-style: var(--awb-text-font-style);letter-spacing: var(--awb-letter-spacing);text-align: var(--awb-content-alignment);text-transform: var(--awb-text-transform);background-color: var(--awb-bg-color-hover)\"><b>Toulany, Alene<\/b><\/span><span style=\"color: var(--awb-text-color);font-family: var(--awb-text-font-family);font-size: var(--awb-font-size);font-style: var(--awb-text-font-style);font-weight: var(--awb-text-font-weight);letter-spacing: var(--awb-letter-spacing);text-align: var(--awb-content-alignment);text-transform: var(--awb-text-transform);background-color: var(--awb-bg-color-hover)\">; <\/span><span style=\"color: var(--awb-text-color);font-family: var(--awb-text-font-family);font-size: var(--awb-font-size);font-style: var(--awb-text-font-style);font-weight: var(--awb-text-font-weight);letter-spacing: var(--awb-letter-spacing);text-align: var(--awb-content-alignment);text-transform: var(--awb-text-transform);background-color: var(--awb-bg-color-hover)\">Jarrett, Clementine;<\/span><span style=\"color: var(--awb-text-color);font-family: var(--awb-text-font-family);font-size: var(--awb-font-size);font-style: var(--awb-text-font-style);font-weight: var(--awb-text-font-weight);letter-spacing: var(--awb-letter-spacing);text-align: var(--awb-content-alignment);text-transform: var(--awb-text-transform);background-color: var(--awb-bg-color-hover)\"> Co-Investigators: Allemang, Brooke; Bailey, Katherine; Biddiss, Elaine A; Buchanan, Francine; Cross, Andrea; Cunningham, Jessie; Dimitropoulos, Gina; Kastner, Monika; Killackey, Tieghan; Kokorelias, Kristina M; Micsinszki, Samantha; Niles, Chavon.<\/span><\/p>\n<p><strong>Study summary: <\/strong><span style=\"color: var(--awb-text-color);font-family: var(--awb-text-font-family);font-size: var(--awb-font-size);font-style: var(--awb-text-font-style);font-weight: var(--awb-text-font-weight);letter-spacing: var(--awb-letter-spacing);text-align: var(--awb-content-alignment);text-transform: var(--awb-text-transform);background-color: var(--awb-bg-color-hover)\">Patients are essential partners in health research, as their lived experiences and knowledge can enhance the quality, relevance, and impact of research. While patient engagement benefits patient partners, researchers, and research projects, it also presents challenges and risks, including tokenism, power imbalances, lack of accessible and patient-friendly training, and insufficient tools for equitable engagement. To address these issues, patient engagement frameworks have been developed. Although these frameworks have improved patient engagement in health research, they are less effective for youth and family-specific engagement. This study will lay the groundwork for developing a youth and family-specific engagement framework (UNITE) and, subsequently, a tool to measure meaningful engagement in research for youth and families.<\/span><\/p>\n<\/div><div class=\"fusion-content-boxes content-boxes columns row fusion-columns-1 fusion-columns-total-0 fusion-content-boxes-1 content-boxes-icon-on-side content-left\" style=\"--awb-hover-accent-color:var(--awb-color4);--awb-circle-hover-accent-color:var(--awb-color4);--awb-item-margin-bottom:40px;\" data-animationOffset=\"top-into-view\"><div class=\"fusion-clearfix\"><\/div><\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":456,"featured_media":1659,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[21],"tags":[],"class_list":["post-1656","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-current"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.0 (Yoast SEO v27.0) - 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