Facing Amyotrophic Lateral Sclerosis Under Lockdown: The Experiences of Minors

Abstract

Purpose: The purpose of this study is to assess the effect of social isolation of minors with a parent or grandparent suffering from amyotrophic lateral sclerosis (ALS) and to determine whether the psychological support offered by an Italian no-profit association helped them to manage stress.

Methodology: This study followed a qualitative research design. The participants responded to in-depth interviews that were processed with inductive thematic analysis.

Findings: Five themes emerged: feedback on the psychological intervention; learning and changes after the intervention; discourses on illness and death in the family; experiences and difficulties during the lockdown and suggestions for other peers who might face the same situation.

Social Implications: Psychological support is necessary for these minors, and it helped them to manage both the stress of living with ALS and the limitations of social relationships during the pandemic. It showed the importance of authentic and honest communication about illness and death that allowed minors to manage anxiety and fear. Positive reinterpretation of these experiences by transforming them into opportunities was also revealed.

Originality: Studies on families with ALS patients are numerous, but studies on children of these patients are still rare, and no study has investigated the impact of the COVID-19 pandemic on these children. This research investigated a topic that has not been covered previously and it also provided the opportunity to know how these children, preadolescents and adolescents living in an already complex environment, have experienced lockdown and restrictions. The study also enriched the literature on this important issue.

Citation

Testoni, I., Palazzo, L., Tosatto, T., Sani, L., Rossi, G. and Ferizoviku, J. (2022), "Facing Amyotrophic Lateral Sclerosis Under Lockdown: The Experiences of Minors", Scott, C.L., Williams, H.M. and Wilder, S. (Ed.) Facing Death: Familial Responses to Illness and Death (Contemporary Perspectives in Family Research, Vol. 19), Emerald Publishing Limited, Leeds, pp. 19-36. https://doi.org/10.1108/S1530-353520220000019002