Accompany caregivers to optimize learning with people living with a major neurocognitive disorder: A participatory action research

ABSTRACT

For caregivers of people living with major neurocognitive disorders (MNCD), adapting and applying methods optimizing learning (MOL) to a specific situation, based on preserved cognitive skills, can be challenging. This study aimed to 1) co-develop workshops, a web application and accompanying materials to support the operationalization of MOL; 2) better understand the factors influencing caregivers’ use of MOL, and 3) evaluate the perceived effects of the workshops. A participatory action research study was conducted in collaboration with family caregivers of people living with MNCD and healthcare and community organization workers (HCOW). Qualitative questionnaires and interviews were conducted and transcribed in verbatim. Thematic content analysis was conducted. Workshops and accompanying materials were co-developed and continuously improved based on conceptual framework and feedback from the participants. The final version of the workshops consisted of seven two-hour sessions structured around the type of cognitive deficits affecting the realization of activities. Facilitators (e.g. help to identify the person’s capabilities) and barriers (e.g. fluctuation of MNCD symptoms) for caregivers’ use of the MOL were reported. The identification of the cause of reactive behavioral expressions could be challenging for some family caregivers, reducing the use of MOL. Caregivers mentioned their increased preparedness to support and relationship with the person living with MNCD and feeling of competence for analyzing the reactive behavioral expressions and to use MOL. This participatory action research has shown that caregivers can acquire abilities to adapt and apply MOL in specific situations with people living with MNCD.

Acknowledgements

The authors want to greatly thanks the participants for their engagement in the workshops and the co-development of the web application and the accompanying material.

Authors’ contributions

CV has written the protocol, participated in data analysis, co-developed the web application and accompanying material and contributed to the writing of the article.

ND participated in data analysis and contributed to the writing of the article.

RDL contributed to the development of accompanying material and to the writing of the article.

SR contributed to the development of the web application and accompanying material and to the revision of the article.

BC participated in the development of the protocol, the of caregivers and health care professionals recruitment, the web application and the writing of the article.

JMR contributed to the development of the web application and accompanying material.

YC participated in the development of the protocol, the web application and the writing of the article.

JD participated in the development of the protocol, the web application and the writing of the article.

DG participated in the development of the protocol, the web application and the writing of the article.

VP participated in the development of the protocol, the web application and the writing of the article.

All authors read and approved the final manuscript.

Ethics approval and consent to participate

Verbal and written informed consent were obtained from all participants before their participation. This study was approved (MP-31-2-19-3211) by the Research Ethics Committee of the Centre intégré universitaire de santé et des services sociaux (CIUSSS) de l’Estrie – Centre hospitalier universitaire de Sherbrooke (CHUS).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to confidentiality issues.

Additional information

Funding

This work was supported by the Ministère de l’éducation et de l’enseignement supérieur.