Implementation guide to support participation among people living with neurocognitive disorders: participatory action research in community, residential and clinical settings

Background: Neurocognitive disorders (NCDs) cause a decrease in social participation. Although cognitive strategies based on preserved capabilities (errorless learning, spaced retrieval, motor encoding, and fading) have been shown to be effective in supporting learning and maintaining participation, it is difficult for practitioners to implement them in a way that is tailored to the specific context.

 

Approach: This interdisciplinary and intersectoral participatory action research project carried out in Quebec (Canada) aimed to co-develop a strategy and tools for implementing cognitive strategies with practitioners. It used a sequential mixed developmental approach based on the Knowledge to Action model (Graham et al., 2006) and Consolidated Framework for Implementation Research (Damchroder et al., 2022). This approach allows for continuous adjustment. Eight focus groups were used to document facilitators, barriers, and potential solutions at two and six months.

 

A log of bi-monthly meetings with partners and communications with managers documented the process, adjustments, and influencing factors. Ten individual interviews provided a deeper understanding of these factors and suggested possible solutions, which were validated in the focus groups. A 10-point Likert scale questionnaire on knowledge acquired and perceived competence was completed (n=21) before and after the tools were used. Transcripts of interviews, focus groups, and logbooks were analyzed using thematic analysis as described by Miles et al. (2020).

 

Results: A guide for implementing cognitive strategies was co-developed with partner organizations. It is based on a co-developed toolkit that draws on factors related to the cognitive strategies themselves, internal and external contexts, and individuals. Facilitators such as the perceived relevance of cognitive strategies and suggested examples of applications, the presence of a leader, motivation following the first use of strategies, regular follow-ups for sharing examples of utilization, hope inspired at the onset of the disease by promotion of values of autonomy and dignity are part of a short initial presentation and popularized and entertaining video clips.

 

Possible solutions have been identified for each of the obstacles identified (e.g., difficulty identifying the exact routine in which cognitive strategies that promote learning are integrated, beliefs that it is impossible to learn with a NCD, staff turnover). These potential solutions include operationalization sheets for situations frequently encountered in the field, a four-question tool to support situation analysis, short testimonials from people who have used cognitive strategies, an infographic on the benefits for caregivers, simplified posters of the learning sequence to be displayed on walls, and a bi-monthly community of practice.

 

An implementation model has been developed that includes raising awareness, training, communication mechanisms and the community of practice. The tools and model will be presented. Caregivers who benefited from the training, including the co-developed tools, increased their knowledge (+2.82/10; p<0.05) and their sense of competence (+3.18/10; p<0.05).

 

Implication Despite some obstacles identified, this participatory action research demonstrates the feasibility of implementing cognitive strategies in real-life settings to support the social participation of people living with TNC, building on their preserved abilities so that they can continue to contribute to society.