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

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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
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  Data: 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]
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  Data: <i>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.</i> (Copyright applies to all Abstracts.)
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RecordInfo BibRecord:
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      – Type: doi
        Value: 10.1080/15325024.2022.2114656
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      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 12
        StartPage: 472
    Subjects:
      – SubjectFull: Friendship
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Children of parents with disabilities
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Attitudes toward illness
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Amyotrophic lateral sclerosis
        Type: general
      – SubjectFull: Psychosocial factors
        Type: general
      – SubjectFull: Quality of life
        Type: general
      – SubjectFull: Descriptive statistics
        Type: general
      – SubjectFull: Loneliness
        Type: general
      – SubjectFull: Parent-child relationships
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: Rare diseases
        Type: general
      – SubjectFull: Psychological resilience
        Type: general
      – SubjectFull: Italy
        Type: general
    Titles:
      – TitleFull: Amyotrophic Lateral Sclerosis (ALS) Impact on Minors' Life: A Qualitative Study with Children of ALS Patients in Italy.
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            NameFull: Testoni, Ines
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            NameFull: Palazzo, Lorenza
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            NameFull: Pamini, Sonia
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            NameFull: Ferizoviku, Jenny
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            NameFull: Boros, Amedeo
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            NameFull: Calvo, Vincenzo
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          Dates:
            – D: 01
              M: 07
              Text: 2023
              Type: published
              Y: 2023
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              Value: 15325024
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              Value: 28
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            – TitleFull: Journal of Loss & Trauma
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