Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life
Abstract Background Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐te...
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| Format: | Article |
| Language: | English |
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Wiley
2024-02-01
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| Series: | Health Expectations |
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| Online Access: | https://doi.org/10.1111/hex.13942 |
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| author | Shirin Vellani Marie‐Lee Yous Vanessa Maradiaga Rivas Stephanie Lucchese Julia Kruizinga Tamara Sussman Julia Abelson Noori Akhtar‐Danesh Gina Bravo Kevin Brazil Rebecca Ganann Sharon Kaasalainen |
| author_facet | Shirin Vellani Marie‐Lee Yous Vanessa Maradiaga Rivas Stephanie Lucchese Julia Kruizinga Tamara Sussman Julia Abelson Noori Akhtar‐Danesh Gina Bravo Kevin Brazil Rebecca Ganann Sharon Kaasalainen |
| author_sort | Shirin Vellani |
| collection | DOAJ |
| description | Abstract Background Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. |
| format | Article |
| id | doaj-art-d6c20328f9384bdfb9cae185ea9ceab7 |
| institution | Kabale University |
| issn | 1369-6513 1369-7625 |
| language | English |
| publishDate | 2024-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj-art-d6c20328f9384bdfb9cae185ea9ceab72025-08-23T11:53:04ZengWileyHealth Expectations1369-65131369-76252024-02-01271n/an/a10.1111/hex.13942Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐lifeShirin Vellani0Marie‐Lee Yous1Vanessa Maradiaga Rivas2Stephanie Lucchese3Julia Kruizinga4Tamara Sussman5Julia Abelson6Noori Akhtar‐Danesh7Gina Bravo8Kevin Brazil9Rebecca Ganann10Sharon Kaasalainen11School of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaSchool of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaSchool of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaSchool of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaSchool of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaSchool of Social Work, Faculty of Arts McGill University Montreal Quebec CanadaDepartment of Health Research Methods, Evidence and Impact, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaSchool of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaDepartment of Community Health Sciences, Faculty of Medicine and Health Sciences Sherbrooke University Sherbrooke CanadaSchool of Nursing and Midwifery Queens University Belfast Northern Ireland UKSchool of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaSchool of Nursing, Faculty of Health Sciences McMaster University Hamilton Ontario CanadaAbstract Background Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.https://doi.org/10.1111/hex.13942dementiaend‐of‐lifeinterpretive descriptionpalliative approachpatient and public involvementreflexive thematic analysis |
| spellingShingle | Shirin Vellani Marie‐Lee Yous Vanessa Maradiaga Rivas Stephanie Lucchese Julia Kruizinga Tamara Sussman Julia Abelson Noori Akhtar‐Danesh Gina Bravo Kevin Brazil Rebecca Ganann Sharon Kaasalainen Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life Health Expectations dementia end‐of‐life interpretive description palliative approach patient and public involvement reflexive thematic analysis |
| title | Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life |
| title_full | Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life |
| title_fullStr | Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life |
| title_full_unstemmed | Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life |
| title_short | Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life |
| title_sort | patient and public involvement in international research perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end of life |
| topic | dementia end‐of‐life interpretive description palliative approach patient and public involvement reflexive thematic analysis |
| url | https://doi.org/10.1111/hex.13942 |
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