PhD thesis by by Diana Schack Thoft: Involving People with Earlystage Dementia in Qualitative Research about their Lifeworld Perspectives - Development of a Participatory Research Model
The aim of the study was to develop a participatory research model drawing from qualitative research about the lifeworld perspectives of people with early-stage dementia. Twelve participants with early-stage dementia were recruited from a compensatory adult school VUK (Voksenskolen for Undervisning og Kommunikation) in Denmark. They were trained in research skills to enable them to conduct a participatory research project in collaboration with the researcher. During the study, the participants informed the research project and the participatory research model.
A combination of participant observations, interviews and focus groups were used with observations and interviews being conducted before the research skills' training to enable the researcher to plan the training and the participatory research project in accordance with the participants´ competencies and challenges. Data were analysed from a hermeneutic phenomenological perspective inspired from the work of Max Van Manen. The focus groups were used both during the training and the participatory research project and video data from these were analysed by a thematic analysis inspired by Braun and Clarke.
The participatory research model illustrates the importance of recruiting and gaining consent from people with early-stage dementia in a way which takes into consideration the needs of the participants. It can be necessary to both adjust the recruitment strategy and the consent form. In order to allow them to be involved as active research participants, it is essential to plan and establish a research project which reflects the participants´ individual cognitive challenges. To simplify the project and establish small project groups can be supportive. Also role agreements are vital. It is essential to train and support them in different ways throughout the research process and, among other strategies; it is useful to have an errorless inspired learning environment with a structure that is repeated. Furthermore, it is important to evaluate continually to ensure the most constructive process throughout and focus groups can prompt more in-depth answers by the participants. The participants also need support and structure provided by the researcher in any dissemination phase.
Furthermore, the researcher needs to invest in the interaction with the participants to establish trusting committed constructive research collaboration from the beginning. It is also important that the researcher balances the roles of being a researcher and a supporter together with being a teacher and a learner when collaborating with people with early-stage dementia. It is about balancing the power in the relationship. Furthermore, the researcher has to support the participants own peer-learning and - support together with creating a relaxed atmosphere. The participatory research model “Balanced Participation” takes these considerations into account, with the result that more people with early-stage dementia will be able to be involved in future qualitative participatory research.