Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study
Introduction Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on pat...
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BMJ Publishing Group
2022-06-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/6/e059689.full |
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| author | Maria-Jose Santana Gina Dimitropoulos Suneeta Monga Isabelle J Gagnon Bruce Wright Jananee Rasiah Katrina Hurley Antonia Stang Amanda Newton Stephen Freedman Jennifer Thull-Freedman Kassi Prisnie Yazid N Al Hamarneh Ellen Louise Lipman Yaron Finkelstein Robert Porter Mohamed Eltorki Lee Macdonald Gareth Hopkin Matthew Prebeg Margaret Steele Ahmed Mater Laurence Katz Brian Greenfield Laurie Plotnick |
| author_facet | Maria-Jose Santana Gina Dimitropoulos Suneeta Monga Isabelle J Gagnon Bruce Wright Jananee Rasiah Katrina Hurley Antonia Stang Amanda Newton Stephen Freedman Jennifer Thull-Freedman Kassi Prisnie Yazid N Al Hamarneh Ellen Louise Lipman Yaron Finkelstein Robert Porter Mohamed Eltorki Lee Macdonald Gareth Hopkin Matthew Prebeg Margaret Steele Ahmed Mater Laurence Katz Brian Greenfield Laurie Plotnick |
| author_sort | Maria-Jose Santana |
| collection | DOAJ |
| description | Introduction Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on patient engagement during the planning and conduct of clinical trials due to the potential for ethical and methodological benefits. As patient engagement in clinical trials increases, there is a need to evaluate the approaches of these activities to contribute evidence on what is most appropriate and successful. The purpose of this study is to evaluate patient engagement processes and the activities of patient partners during and after a paediatric mental healthcare trial.Methods and analysis Using a mixed-methods study design, we will evaluate patient partners’ engagement activities across set time-points during the trial and after trial completion. In this study, the term ‘patient partner’ is inclusive of two groups of people with lived experience: (1) caregivers (parents, formal/informal caregivers and family), and (2) youth (aged 15–24 years). Engagement will be evaluated using the participant and project questionnaires of the Public and Patient Engagement Evaluation Tool (PPEET), followed sequentially by semi-structured interviews. Quantitative data from the PPEET questionnaire will be analysed and reported using descriptive statistics. Data from open-ended questions from the PPEET questionnaires and semi-structured interviews will be analysed using thematic analysis.Ethics and dissemination Approval from Athabasca University Research Ethics Board will be obtained for this project. Findings will be disseminated at both academic and public venues whether in-person or online, and using platforms that are caregiver and youth friendly.Trial registration number NCT04902391. |
| format | Article |
| id | doaj-art-888dd543acd74065b3ffed763f2368fa |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-06-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-888dd543acd74065b3ffed763f2368fa2025-01-24T20:20:14ZengBMJ Publishing GroupBMJ Open2044-60552022-06-0112610.1136/bmjopen-2021-059689Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method studyMaria-Jose Santana0Gina Dimitropoulos1Suneeta Monga2Isabelle J Gagnon3Bruce Wright4Jananee Rasiah5Katrina Hurley6Antonia Stang7Amanda Newton8Stephen Freedman9Jennifer Thull-Freedman10Kassi Prisnie11Yazid N Al Hamarneh12Ellen Louise Lipman13Yaron Finkelstein14Robert Porter15Mohamed Eltorki16Lee Macdonald17Gareth Hopkin18Matthew Prebeg19Margaret Steele20Ahmed Mater21Laurence Katz22Brian Greenfield23Laurie Plotnick24Patient Engagement Team, Alberta Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit, Calgary, Alberta, Canada9 Integrated Knowledge Translation Panel Member, Toronto, Ontario, CanadaDepartment of Psychiatry, The Hospital for Sick Children, Toronto, Ontario, CanadaDivision of Pediatric Emergency Medicine, McGill University Health Centre, Montreal Children’s Hospital, Montreal, Quebec, CanadaStollery Children`s Hospital, Alberta Health Services, Edmonton, Alberta, CanadaFaculty of Nursing and College of Health Sciences, University of Alberta, Edmonton, Alberta, CanadaEmergency Medicine Deparment, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, CanadaPediatrics, Emergency Medicine, and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, CanadaCollege of Health Sciences, University of Alberta, Edmonton, Alberta, CanadapediatricianDepartments of Pediatrics and Emergency Medicine, Alberta Children’s Hospital, Calgary, Alberta, CanadaDepartment of Pediatrics, University of Calgary Cumming School of Medicine, Calgary, Alberta, CanadaEPICORE Centre, University of Alberta, Edmonton, Alberta, CanadaDepartment of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada9 Division of Emergency Medicine, The Hospital for Sick Children, Toronto, Ontario, CanadaDepartment of Pediatrics, Faculty of Medicine, Memorial University of Newfoundland, St. John`s, Newfoundland, CanadaDepartment of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, CanadaPlanning and Performance, Alberta Health Services, Calgary, Alberta, CanadaInstitute of Health Economics, Edmonton, Alberta, CanadaCentre for Addiction and Mental Health, Toronto, Ontario, CanadaDiscipline of Psychiatry, Faculty of Medicine, Memorial University of Newfoundland, St. John`s, Newfoundland, CanadaPediatrics, University of Saskatchewan, Saskatoon, Saskatchewan, CanadaDepartment of Psychiatry, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, CanadaPsychiatry, McGill University, Montreal, Quebec, CanadaPediatrics, McGill University, Montreal, Quebec, CanadaIntroduction Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on patient engagement during the planning and conduct of clinical trials due to the potential for ethical and methodological benefits. As patient engagement in clinical trials increases, there is a need to evaluate the approaches of these activities to contribute evidence on what is most appropriate and successful. The purpose of this study is to evaluate patient engagement processes and the activities of patient partners during and after a paediatric mental healthcare trial.Methods and analysis Using a mixed-methods study design, we will evaluate patient partners’ engagement activities across set time-points during the trial and after trial completion. In this study, the term ‘patient partner’ is inclusive of two groups of people with lived experience: (1) caregivers (parents, formal/informal caregivers and family), and (2) youth (aged 15–24 years). Engagement will be evaluated using the participant and project questionnaires of the Public and Patient Engagement Evaluation Tool (PPEET), followed sequentially by semi-structured interviews. Quantitative data from the PPEET questionnaire will be analysed and reported using descriptive statistics. Data from open-ended questions from the PPEET questionnaires and semi-structured interviews will be analysed using thematic analysis.Ethics and dissemination Approval from Athabasca University Research Ethics Board will be obtained for this project. Findings will be disseminated at both academic and public venues whether in-person or online, and using platforms that are caregiver and youth friendly.Trial registration number NCT04902391.https://bmjopen.bmj.com/content/12/6/e059689.full |
| spellingShingle | Maria-Jose Santana Gina Dimitropoulos Suneeta Monga Isabelle J Gagnon Bruce Wright Jananee Rasiah Katrina Hurley Antonia Stang Amanda Newton Stephen Freedman Jennifer Thull-Freedman Kassi Prisnie Yazid N Al Hamarneh Ellen Louise Lipman Yaron Finkelstein Robert Porter Mohamed Eltorki Lee Macdonald Gareth Hopkin Matthew Prebeg Margaret Steele Ahmed Mater Laurence Katz Brian Greenfield Laurie Plotnick Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study BMJ Open |
| title | Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study |
| title_full | Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study |
| title_fullStr | Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study |
| title_full_unstemmed | Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study |
| title_short | Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study |
| title_sort | evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial protocol for a mixed method study |
| url | https://bmjopen.bmj.com/content/12/6/e059689.full |
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