Article type
Abstract
Background: Dementia is a priority public health issue. Involving people living with dementia and their caregivers is crucial for inclusive research that addresses their needs appropriately. Moreover, people have the right to be involved in the decision-making process that may affect them. Patient and public involvement (PPI) is widely encouraged to understand various insights and perspectives and to enhance the quality, relevancy, transparency, and reflexivity in a systematic review. However, there is a lack of experiences and reflections supporting stakeholder involvement in a qualitative evidence synthesis (QES).
Objectives: To share learnings of collaborating with stakeholders on a QES regarding experiences and perceptions of animal assisted intervention (AAI) for people living with dementia in community settings.
Method: A stakeholder involvement approach was used in this review. A PPI plan was sent to the Alzheimer Society of Ireland (ASI) for PPI panel recruitment before the review commenced. We implemented a PPI work plan under the guidance of the ACTIVE framework (a structure that describes how to actively involve stakeholders in a systematic review) that was tailored to people’s preferences and capacity. The perspectives of the PPI panel were garnered through sharing stories and photo elicitation approaches during meetings. The dissemination of findings was supported by the PPI panel and ASI.
Results: A man with dementia and his wife were included in the review team. They contributed to synthesis interpretation, translation, and appropriate dissemination of QES findings through two online meetings and two in-person meetings, as well as email communication. The findings were presented in a co-authored academic paper (currently under review) and a PPI facilitation workshop and will be presented as a plain language summary on the ASI website and newsletters with support from an ASI research officer, ensuring accessible evidence for people with dementia and their caregivers.
Conclusion: Stakeholder involvement in a QES is valuable and necessary. It is important to consider how best to facilitate their inclusion, such as having a flexible PPI schedule, storytelling, and dementia-friendly and plain language use.
Objectives: To share learnings of collaborating with stakeholders on a QES regarding experiences and perceptions of animal assisted intervention (AAI) for people living with dementia in community settings.
Method: A stakeholder involvement approach was used in this review. A PPI plan was sent to the Alzheimer Society of Ireland (ASI) for PPI panel recruitment before the review commenced. We implemented a PPI work plan under the guidance of the ACTIVE framework (a structure that describes how to actively involve stakeholders in a systematic review) that was tailored to people’s preferences and capacity. The perspectives of the PPI panel were garnered through sharing stories and photo elicitation approaches during meetings. The dissemination of findings was supported by the PPI panel and ASI.
Results: A man with dementia and his wife were included in the review team. They contributed to synthesis interpretation, translation, and appropriate dissemination of QES findings through two online meetings and two in-person meetings, as well as email communication. The findings were presented in a co-authored academic paper (currently under review) and a PPI facilitation workshop and will be presented as a plain language summary on the ASI website and newsletters with support from an ASI research officer, ensuring accessible evidence for people with dementia and their caregivers.
Conclusion: Stakeholder involvement in a QES is valuable and necessary. It is important to consider how best to facilitate their inclusion, such as having a flexible PPI schedule, storytelling, and dementia-friendly and plain language use.