Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review
Abstract Background The commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging patients as partners. The aim of this study is to identify the ethical...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2021-01-01
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| Series: | Research Involvement and Engagement |
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| Online Access: | https://doi.org/10.1186/s40900-021-00254-5 |
| _version_ | 1819275495485734912 |
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| author | Claire Ludwig Ian D. Graham Josee Lavoie Wendy Gifford Dawn Stacey |
| author_facet | Claire Ludwig Ian D. Graham Josee Lavoie Wendy Gifford Dawn Stacey |
| author_sort | Claire Ludwig |
| collection | DOAJ |
| description | Abstract Background The commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging patients as partners. The aim of this study is to identify the ethical considerations related to engaging frail and seriously ill (FSI) patients as partners in research. Methods We conducted a sub-analysis of a prior systematic review of 30 studies that engaged FSI patients as partners in research. Studies were included if they reported ethical considerations associated with partnering. We performed deductive content analysis, data were categorized according to Beauchamp and Childress’ Principles of Biomedical Ethics (2019): autonomy, non-maleficence, beneficence, and justice. Results Twenty-five studies were included. Common ethical considerations reported in relation to the principles were: autonomy – promoting desired level of involvement, addressing relational and intellectual power, facilitating knowledge and understanding of research; non-maleficence – protection from financial burden, physical and emotional suffering; beneficence – putting things right for others, showing value-added, and supporting patient-partners; and, justice – achieving appropriate representation, mutual respect for contributions, and distributing risks and benefits. Conclusions When partnering with FSI patients, research teams need to establish shared values and ensure processes are in place to identify and address ethical issues. Researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. Systematic review registration The protocol for the original systematic review has been registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994). |
| first_indexed | 2024-12-23T23:25:14Z |
| format | Article |
| id | doaj.art-172bc608058e49e2b4ecdf23a2b567e6 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-12-23T23:25:14Z |
| publishDate | 2021-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-172bc608058e49e2b4ecdf23a2b567e62022-12-21T17:26:14ZengBMCResearch Involvement and Engagement2056-75292021-01-017111210.1186/s40900-021-00254-5Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic reviewClaire Ludwig0Ian D. Graham1Josee Lavoie2Wendy Gifford3Dawn Stacey4University of Ottawa, Faculty of Health Sciences, School of Nursing, Roger Guindon HallUniversity of Ottawa, Faculty of Health Sciences, School of Nursing, Roger Guindon HallGeriatric Psychiatry Program, Royal Ottawa Mental Health CentreUniversity of Ottawa, Faculty of Health Sciences, School of Nursing, Roger Guindon HallUniversity of Ottawa, Faculty of Health Sciences, School of Nursing, Roger Guindon HallAbstract Background The commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging patients as partners. The aim of this study is to identify the ethical considerations related to engaging frail and seriously ill (FSI) patients as partners in research. Methods We conducted a sub-analysis of a prior systematic review of 30 studies that engaged FSI patients as partners in research. Studies were included if they reported ethical considerations associated with partnering. We performed deductive content analysis, data were categorized according to Beauchamp and Childress’ Principles of Biomedical Ethics (2019): autonomy, non-maleficence, beneficence, and justice. Results Twenty-five studies were included. Common ethical considerations reported in relation to the principles were: autonomy – promoting desired level of involvement, addressing relational and intellectual power, facilitating knowledge and understanding of research; non-maleficence – protection from financial burden, physical and emotional suffering; beneficence – putting things right for others, showing value-added, and supporting patient-partners; and, justice – achieving appropriate representation, mutual respect for contributions, and distributing risks and benefits. Conclusions When partnering with FSI patients, research teams need to establish shared values and ensure processes are in place to identify and address ethical issues. Researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. Systematic review registration The protocol for the original systematic review has been registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).https://doi.org/10.1186/s40900-021-00254-5Patient engagementPublic and patient involvementIntegrated knowledge translationEthicsResearch co-productionPatient-partners |
| spellingShingle | Claire Ludwig Ian D. Graham Josee Lavoie Wendy Gifford Dawn Stacey Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review Research Involvement and Engagement Patient engagement Public and patient involvement Integrated knowledge translation Ethics Research co-production Patient-partners |
| title | Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review |
| title_full | Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review |
| title_fullStr | Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review |
| title_full_unstemmed | Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review |
| title_short | Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review |
| title_sort | ethical considerations for engaging frail and seriously ill patients as partners in research sub analysis of a systematic review |
| topic | Patient engagement Public and patient involvement Integrated knowledge translation Ethics Research co-production Patient-partners |
| url | https://doi.org/10.1186/s40900-021-00254-5 |
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