Background: Systematic reviews summarize and evaluate relevant studies to contribute to evidence-based practice. Internationally, researchers have reached a consensus that the active involvement of the public leads to better research. Despite this agreement, there are many reviews of research concerning healthcare interventions intended to promote the care of people living with dementia and those from their social network (e.g., close contacts, both family and non-family members) primarily involve only healthcare professionals and other experts. Due to the lack of a dementia-sensitive framework to actively involve people living with dementia and those from their social network, and healthcare professionals as co-researchers in systematic reviews, it is important to develop a framework to inform practice.
Methods: For this framework development process, we will recruit four people living with dementia and a total of four people from their social network, and three healthcare professionals working in acute or long-term care settings. We will conduct regular meetings with these groups of the public and healthcare professionals to include them in all stages of the systematic review. We will also identify and develop methods necessary to ensure meaningful involvement. The results will be documented and analyzed for the development of a framework. For the planning and preparation for these meetings, as well as the conduct of the meetings themselves, we will be guided by the principles of the INVOLVE approach. In addition, the ACTIVE framework will be used to guide the degree of involvement and the stage in the review process.
Discussion: We assume that our transparent approach to the development of a framework to support the active involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews will serve as an impetus for and provide guidance to other researchers with the goal of increasing researchers' focus on this topic and facilitating systematic reviews that apply participatory approaches.
Trial registration: Trial registration is unnecessary as no intervention study will be conducted.
Keywords: Collaboration; Dementia; Framework; Participatory research; Public.
Systematic reviews summarize and evaluate studies on a particular topic. They provide information, for example, regarding whether an intervention is beneficial. This type of review is particularly important for healthcare professionals because they can use the results of the review to guide their actions. There is a growing awareness that the public, including people living with dementia and those from their social network (e.g., relatives, friends), need to be actively involved in the process of preparing these reviews when they are concerned with the topic of the reviews. Despite this consensus, it is often the case that only healthcare professionals are involved in such reviews. At present, no framework for the active involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews has been developed. Therefore, we will develop such a framework together in collaboration with a range of members of the public and healthcare professionals. For this purpose, in addition to healthcare professionals, we will involve people living with dementia and those from their social network. Over the course of several meetings, we will engage in discussion with them and identify the stages of the process of conducting a systematic review in which their involvement as members of the researcher team is meaningful. We will furthermore identify the requirements associated with such an active involvement. A written report of these discussions will be produced in collaboration with the group. This will contribute towards the development of a framework for other researchers. The framework will later be made available to the public free of charge to increase awareness of this topic and to contribute towards more frequent, well-organised and meaningful involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews.
© 2023. The Author(s).