Spinocerebellar ataxias (SCA) are a group of autosomal dominant inherited cerebellar disease characterized mainly by imbalance, motor incoordination, and dysarthria because of progressive degeneration of the cerebellum and/or its pathways. SCA type 3 (SCA3), also known as Machado-Joseph disease, is the most common form of SCA and has a high prevalence in Brazil. Patients with SCA face a progressive functional decline that compromises their quality of life. Understanding the factors that influence the adherence of individuals with SCA3 to programs of rehabilitation to improve balance is essential to adapt it to their expectations and needs. However, there is still little investigation on perceptions about both the impact of these interventions and the disease in their lives.

To explore the perceptions and experiences of patients who participated in a balance and gait intervention program.

This is a qualitative study approved by the local Ethics Committee. Initially, a pilot group of 12 participants diagnosed with SCA3 were interviewed using a semi-structured script. These participants completed 20 consecutive sessions of an exercise program for balance and gait exercises concomitant to Transcranial Direct Current Stimulation (tDCS). Based on the initial interviews, the script was improved, resulting in a final version composed of 15 questions organized into four main axes: motivation, difficulties, benefits of treatment, and expectations. Subsequently, an independent researcher conducted semi-structured interviews with 25 additional participants with SCA3 who had completed the same intervention. All interviews were transcribed and analyzed using ATLAS.ti® software.

The analysis revealed five main themes: participation experience, expectations for improvement, motivational factors, challenges faced, and perceptions during the study. Participants reported health benefits, strengthening of interpersonal bonds, and gratitude for the opportunity, despite challenges such as difficulty in performing the exercises and environmental barriers. Expectations ranged from perceived significant improvements to uncertainty about maintaining the improvements achieved. Motivation was reinforced by hope, persistence, and confidence in the treatment. In addition, participants shared perceptions about electrostimulation and suggestions for improving the intervention protocol.

The results provide a broader understanding of the positive, neutral, and negative perceptions and experiences of the participants that undergoing the intervention. Predominantly positive responses were observed regarding the experience in general, indicating that the proposed intervention was favorable in the perception of the participating individuals.

This study has the potential to help refine future programs and identify ways to reduce barriers that may lead to dropout from similar programs. It also has important application in providing valuable information about the perceptions of individuals with SCA3.