2022
DOI: 10.1186/s12904-022-00964-x
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Meeting ethical challenges with authenticity when engaging patients and families in end-of-life and palliative care research: a qualitative study

Abstract: Background Delivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement is not only an ethical obligation, it also raises ethical challenges of its own. We conducted a qualitative study to understand ethical challenges and potential solutio… Show more

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Cited by 9 publications
(14 citation statements)
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“…It is noteworthy to highlight the challenges faced by service users with cognitive impairments or high-risk health conditions [ 46 ] noted in this review. Acknowledging the difficulties in engaging specific service user populations in the co-design process, several researchers have provided frameworks and recommendations to mitigate these challenges [ 56 , 57 , 58 , 59 ]. Although not all service users are willing or able to be involved in their own care, it is essential that service providers (i.e., healthcare workers) do not act as gatekeepers of the process.…”
Section: Discussionmentioning
confidence: 99%
“…It is noteworthy to highlight the challenges faced by service users with cognitive impairments or high-risk health conditions [ 46 ] noted in this review. Acknowledging the difficulties in engaging specific service user populations in the co-design process, several researchers have provided frameworks and recommendations to mitigate these challenges [ 56 , 57 , 58 , 59 ]. Although not all service users are willing or able to be involved in their own care, it is essential that service providers (i.e., healthcare workers) do not act as gatekeepers of the process.…”
Section: Discussionmentioning
confidence: 99%
“…Sailing the palliative waters, it is easy to feel out of our professional comfort zone: drug trials were never designed to include the palliative patients, and studies evaluating the effectiveness or safety of any drug or intervention are often inconclusive when applied to the palliative context. Research methodologies and evidence-collection principles in palliative medicine differ significantly to the traditional, quantitative, multi-arm, double-blind approach of the evidence-based medicine that we are so used to [ 20 , 21 , 22 , 23 , 24 ].…”
Section: Add Life To Days and Not Days To Lifementioning
confidence: 99%
“…This occurs through change in physician attitudes towards the intervention, particularly when there is no specific limitation to implementing the change due to ethical considerations. This is best highlighted for patients receiving a palliative care intervention as it is unethical to limit a physicians' ability to refer patients to palliative care services that they believe could be of benefit [133]. Thus, cluster-based trial designs, where the level of the intervention is randomised at the level of the facility is considered the gold standard for implementational trials in the palliative care space (figure 1.)…”
Section: Study Designs For Implementation Of Palliative and Supportiv...mentioning
confidence: 99%
“…This is best highlighted for patients receiving a palliative care intervention as it is unethical to limit a physicians' ability to refer patients to palliative care services that they believe could be of benefit. 125 Thus, cluster-based trial designs, where the level of the intervention is randomized at the level of the facility, are considered the gold standard for implementational trials in the palliative care space ( Fig. 1 ).…”
Section: Study Designs For Implementation Of Palliative and Supportiv...mentioning
confidence: 99%