Amyotrophic Lateral Sclerosis (ALS) is a rare progressive neurodegenerative disease that is currently not curable and complex to manage. This qualitative study aimed to describe how ALS impacted life of minors with a parent affected by this pathology. Twenty-seven participants (16 females and 22 males; aged 7-18 years - M= 11.61; SD= 2.97) responded to a semi-structured interview. From the analysis of their answers three thematic areas were found: difficulties in understanding the changes caused by ALS, difficulties in family life, loneliness, and friendship as source of resilience. Indications are reported on possible interventions to be implemented to support these young people.

Amyotrophic Lateral Sclerosis (ALS) Impact on Minors’ Life: A Qualitative Study with Children of ALS Patients in Italy

Testoni, Ines;Palazzo, Lorenza;Boros, Amedeo;Calvo, Vincenzo
2022

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a rare progressive neurodegenerative disease that is currently not curable and complex to manage. This qualitative study aimed to describe how ALS impacted life of minors with a parent affected by this pathology. Twenty-seven participants (16 females and 22 males; aged 7-18 years - M= 11.61; SD= 2.97) responded to a semi-structured interview. From the analysis of their answers three thematic areas were found: difficulties in understanding the changes caused by ALS, difficulties in family life, loneliness, and friendship as source of resilience. Indications are reported on possible interventions to be implemented to support these young people.
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11577/3454622
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