Amyotrophic Lateral Sclerosis (ALS) Impact on Minors' Life: A Qualitative Study with Children of ALS Patients in Italy.
Saved in:
| Title: | Amyotrophic Lateral Sclerosis (ALS) Impact on Minors' Life: A Qualitative Study with Children of ALS Patients in Italy. |
|---|---|
| Authors: | Testoni, Ines, Palazzo, Lorenza, Pamini, Sonia, Ferizoviku, Jenny, Boros, Amedeo, Calvo, Vincenzo |
| Source: | Journal of Loss & Trauma. 2023, Vol. 28 Issue 5, p472-483. 12p. |
| Subjects: | Friendship, Research methodology, Children of parents with disabilities, Interviewing, Attitudes toward illness, Qualitative research, Amyotrophic lateral sclerosis, Psychosocial factors, Quality of life, Descriptive statistics, Loneliness, Parent-child relationships, Thematic analysis, Rare diseases, Psychological resilience |
| Geographic Terms: | Italy |
| 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. [ABSTRACT FROM AUTHOR] |
| Copyright of Journal of Loss & Trauma is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
|
Full text is not displayed to guests.
Login for full access.
|
|
| 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. [ABSTRACT FROM AUTHOR] |
|---|---|
| ISSN: | 15325024 |
| DOI: | 10.1080/15325024.2022.2114656 |
