https://orcid.org/0000-0002-2325-6450
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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.
Acknowledgements
Massimo Mauro former President, Fulvia Massimelli President in Charge of AISLA Italian Association Amyotrophic Lateral Sclerosis, promoter of the research project and Gabriella Rossi coordinator of the psychological AISLA network.
Additional information
Notes on contributors
Ines Testoni
Ines Testoni, professor of social psychology and psychotherapist expert in arts therapies, is director of the Master’s Program in Death Studies & The End of Life at University of Padova. Member of technical groups related to end of life and palliative care, she is the author of about two hundred international articles, most of them indexed on the most important scientific databases. Director of European projects on palliative psychology, she has been promoting death education international programs in many countries.
Lorenza Palazzo
Lorenza Palazzo, fellow at the University of Padua, is psychotherapist and a clinical psychologist expert on family changes caused by ALS and serious illness.
Sonia Pamini
Sonia Pamini is a clinical psychologist, music-therapist, expert in the psychology of family relationships and developmental psychology.
Jenny Ferizoviku
Jenny Ferizoviku is a clinical psychologist, expert in family relationships with a patient with neurological disease.
Amedeo Boros
Amedeo Boros is an anthropologist expert in ethnographic research on death and dying.
Vincenzo Calvo
Vincenzo Calvo, professor at University of Padua, is an expert of the psychology of parental relationships.