“Understanding my ALS”. Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation

Abstract

Purpose: The aim of this study was to gain insight into experiences and reflections of persons with amyotrophic lateral sclerosis and relatives concerning the peer group rehabilitation programme “More Life – Less Illness”.

Methods: This qualitative study used the Interpretive Description methodology with Symbolic Interactionism as the analytical framework. Eighteen programme participants representing persons with amyotrophic lateral sclerosis (n = 8) and relatives (n = 10) were included. Data consisted of individual interviews and participant observation.

Results: The analysis revealed two categorical themes, “Sense of Community Building” and “Understanding my ALS”, which represented the participants’ experiences and reflections on peer group rehabilitation. Through the analysis, it became apparent that “Sense of Community Building” gave rise to an increased and personalised understanding of amyotrophic lateral sclerosis among the participants. As a part of the continuous processing of the knowledge gained, “Facing Facts” and “Retaining Normality” appeared as subthemes regarding the participants’ ability to live a less dependent and more meaningful life.

Conclusions: This study of peer group rehabilitation for persons with amyotrophic lateral sclerosis and relatives indicates that programme participation leads to positive experiences in terms of living a shared meaningful life despite severe disability. The findings may guide practice to develop longitudinal peer group rehabilitation programmes with joint inclusion of persons with amyotrophic lateral sclerosis and relatives.

Implications for Rehabilitation

• Peer group rehabilitation may facilitate an increased and personalised understanding of what it means to live with amyotrophic lateral sclerosis.

• A programme design with six months of sequential sessions enables a continuous processing of shared experiences and gained knowledge.

• Joint participation of persons with amyotrophic lateral sclerosis and their relatives supports both their internal relationship and social networking.

• Peer group rehabilitation in amyotrophic lateral sclerosis should help overcome obstacles concerning the needs of participants, accessibility, and geographical distance.

Keywords:

• Peer group
• rehabilitation
• amyotrophic lateral sclerosis
• relatives
• social support networking
• interpretive description

Acknowledgements

We thank all study participants, who generously shared their time and stories, and the involved health professionals for their kind help and support.

Disclosure statement

The authors of this article declare no conflicts of interest.

Additional information

Funding

This study was supported by the Danish Patient Organization for Neuromuscular Diseases [Muskelsvindfonden] (Denmark).