Social participation when aging with an early-onset neurological disability: Protocol for a descriptive qualitative research. (Preprint)

BACKGROUND Due to improvements in healthcare and rehabilitation, as well as better social conditions, individuals living with traumatic brain injury (TBI), multiple sclerosis (MS), or spinal cord injury (SCI) are living longer. It is therefore necessary to ensure the presence of social and health services adapted to the realities and specific needs of these populations aging with disabilities. Social participation is a key determinant of active aging and health. However, there is limited evidence regarding the social participation of these aging populations. To support the development of more inclusive approaches promoting the health of older adults, it is essential to better understand the diversity of social participation experiences among individuals aging with neurological disabilities. OBJECTIVE 1) Explore how social participation is experienced by individuals aging with TBI, MS, or SCI; 2) Document the barriers and facilitators to their social participation; 3) Explore avenues for interventions supporting their social participation. METHODS This descriptive qualitative research is part of a larger action research project conducted in partnership with individuals aging with disabilities, researchers, and community organizations providing services to these populations who sit on the project's steering committee. Individuals aged 50 or older living with TBI (n=8), MS (n=8), or SCI (n=8) will participate in a semi-structured interview. The interviews will be transcribed verbatim, and the accuracy of the transcripts will be ensured through peer validation. Qualitative data will be analyzed using a mixed approach in alignment with the Framework methods. The use of the Human Development Model – Disability Creation Process (HDM-DCP) conceptual model will be used for deductive analysis. The coding tree will combine significant themes arising from the interview's inductive part and the themes from the HDM-DCP. Also, 12,5% of the analysis will be tested for stringency (i.e., double-blind & inter-rater reliability exercise). RESULTS The study will provide insights into the diversity of social participation experiences of these populations as well as the influence of individual characteristics and environmental resources on their social participation. CONCLUSIONS This project will lay the groundwork for the co-development of health promotion programs aimed at supporting the social participation of individuals aging with neurological disabilities. This study will also help to identify the resources and strengths that support social participation for these populations, as well as the systemic barriers that need to be addressed this.