A basic technology-aided programme for leisure and communication of persons with advanced amyotrophic lateral sclerosis: performance and social rating

Abstract

Purpose: This study assessed (a) the impact of a technology-aided programme on the leisure and communication engagement of persons with advanced amyotrophic lateral sclerosis (ALS) and (b) the opinion of rehabilitation and care personnel regarding the programme. Method: The programme’s impact was assessed with four participants who were allowed to activate leisure and communication options through basic responses (e.g. knee, finger or lip movements) and microswitches. Forty-two care and health professionals rated the programme after watching video clips of persons with ALS (three of the four involved in this study and three involved in previous studies) during and outside of the programme. Results: The programme was effective with all participants. Their mean percentages of session time with independently initiated leisure and communication engagements were zero during baseline and increased to between nearly 70 and 80 during the intervention. The care and health professionals rated the technology-aided programme as beneficial for the participants’ positive engagement and social image, fairly practical for daily contexts and interesting from a personal standpoint. Conclusions: The programme might be viewed as a viable resource for persons with advanced ALS.

Implications for Rehabilitation

• A programme characterised by versatility, simplicity and relatively low cost could be considered practically relevant for persons with ALS and their contexts.

• A programme that is effective in fostering participants’ independent leisure and communication engagement and is positively rated by care and rehabilitation personnel is more likely to be accepted and used with consistency.

• Any programme directed at persons affected by ALS needs to be adapted to the persons’ progressive deterioration, starting from the response and microswitch used for accessing the programme’s options.

Keywords:

• Amyotrophic lateral sclerosis
• communication
• leisure
• microswitches
• technology-aided programme

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.