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Parents' perception of health care services for girls with Rett syndrome.

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Title: Parents' perception of health care services for girls with Rett syndrome.
Authors: Rodocanachi Roidi, Marina Luisa, Grange, Francesca, Cozzi, Francesca, Pari, Elisa, Toshimori, Kumiko, Ripamonti, Enrico
Source: Child: Care, Health & Development. May2019, Vol. 45 Issue 3, p417-422. 6p. 3 Charts.
Subjects: Rett syndrome, Attitude (Psychology), Customer satisfaction, Epilepsy, Movement disorders, Parents of children with disabilities, Sensory perception, Questionnaires, Scoliosis, Therapeutics, Walking, Psychosocial factors, Fathers' attitudes, Attitudes of mothers
Abstract: Background: Rett syndrome (RTT) is a severe neurodevelopmental disorder, implying impairment and disability across several domains. Method: We investigated parents' perception of the caregiving process in a sample of 55 mothers and fathers of girls with RTT using the MPOC‐20 questionnaire. The association of parents' satisfaction with clinical variables has also been explored. Results: We obtained intermediate levels of satisfaction on the MPOC‐20 Coordinated and Comprehensive Care and Respectful and Supportive Care scales. The performance was lower on the scales Providing General Information and Providing Specific Information. Mothers' assessment was not associated with clinical variables such as walking disability, presence of scoliosis, or epilepsy. For children with greater degree of walking impairment, fathers expressed the need of having more information available. Conclusions: Although parents seemed satisfied of the caregiving process, clinicians should put more emphasis on their need of receiving general and specific information on RTT along the entire rehabilitation program. [ABSTRACT FROM AUTHOR]
Copyright of Child: Care, Health & Development is the property of Wiley-Blackwell 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: Parents' perception of health care services for girls with Rett syndrome.
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  Data: <searchLink fieldCode="AR" term="%22Rodocanachi+Roidi%2C+Marina+Luisa%22">Rodocanachi Roidi, Marina Luisa</searchLink><br /><searchLink fieldCode="AR" term="%22Grange%2C+Francesca%22">Grange, Francesca</searchLink><br /><searchLink fieldCode="AR" term="%22Cozzi%2C+Francesca%22">Cozzi, Francesca</searchLink><br /><searchLink fieldCode="AR" term="%22Pari%2C+Elisa%22">Pari, Elisa</searchLink><br /><searchLink fieldCode="AR" term="%22Toshimori%2C+Kumiko%22">Toshimori, Kumiko</searchLink><br /><searchLink fieldCode="AR" term="%22Ripamonti%2C+Enrico%22">Ripamonti, Enrico</searchLink>
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  Data: <searchLink fieldCode="JN" term="%22Child%3A+Care%2C+Health+%26+Development%22">Child: Care, Health & Development</searchLink>. May2019, Vol. 45 Issue 3, p417-422. 6p. 3 Charts.
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  Data: <searchLink fieldCode="DE" term="%22Rett+syndrome%22">Rett syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Attitude+%28Psychology%29%22">Attitude (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Customer+satisfaction%22">Customer satisfaction</searchLink><br /><searchLink fieldCode="DE" term="%22Epilepsy%22">Epilepsy</searchLink><br /><searchLink fieldCode="DE" term="%22Movement+disorders%22">Movement disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Parents+of+children+with+disabilities%22">Parents of children with disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Sensory+perception%22">Sensory perception</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Scoliosis%22">Scoliosis</searchLink><br /><searchLink fieldCode="DE" term="%22Therapeutics%22">Therapeutics</searchLink><br /><searchLink fieldCode="DE" term="%22Walking%22">Walking</searchLink><br /><searchLink fieldCode="DE" term="%22Psychosocial+factors%22">Psychosocial factors</searchLink><br /><searchLink fieldCode="DE" term="%22Fathers'+attitudes%22">Fathers' attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes+of+mothers%22">Attitudes of mothers</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Rett syndrome (RTT) is a severe neurodevelopmental disorder, implying impairment and disability across several domains. Method: We investigated parents' perception of the caregiving process in a sample of 55 mothers and fathers of girls with RTT using the MPOC‐20 questionnaire. The association of parents' satisfaction with clinical variables has also been explored. Results: We obtained intermediate levels of satisfaction on the MPOC‐20 Coordinated and Comprehensive Care and Respectful and Supportive Care scales. The performance was lower on the scales Providing General Information and Providing Specific Information. Mothers' assessment was not associated with clinical variables such as walking disability, presence of scoliosis, or epilepsy. For children with greater degree of walking impairment, fathers expressed the need of having more information available. Conclusions: Although parents seemed satisfied of the caregiving process, clinicians should put more emphasis on their need of receiving general and specific information on RTT along the entire rehabilitation program. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>Copyright of Child: Care, Health & Development is the property of Wiley-Blackwell 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:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/cch.12660
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 6
        StartPage: 417
    Subjects:
      – SubjectFull: Rett syndrome
        Type: general
      – SubjectFull: Attitude (Psychology)
        Type: general
      – SubjectFull: Customer satisfaction
        Type: general
      – SubjectFull: Epilepsy
        Type: general
      – SubjectFull: Movement disorders
        Type: general
      – SubjectFull: Parents of children with disabilities
        Type: general
      – SubjectFull: Sensory perception
        Type: general
      – SubjectFull: Questionnaires
        Type: general
      – SubjectFull: Scoliosis
        Type: general
      – SubjectFull: Therapeutics
        Type: general
      – SubjectFull: Walking
        Type: general
      – SubjectFull: Psychosocial factors
        Type: general
      – SubjectFull: Fathers' attitudes
        Type: general
      – SubjectFull: Attitudes of mothers
        Type: general
    Titles:
      – TitleFull: Parents' perception of health care services for girls with Rett syndrome.
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            NameFull: Rodocanachi Roidi, Marina Luisa
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            NameFull: Grange, Francesca
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            NameFull: Cozzi, Francesca
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            NameFull: Pari, Elisa
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            NameFull: Toshimori, Kumiko
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            NameFull: Ripamonti, Enrico
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          Dates:
            – D: 01
              M: 05
              Text: May2019
              Type: published
              Y: 2019
          Identifiers:
            – Type: issn-print
              Value: 03051862
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              Value: 45
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            – TitleFull: Child: Care, Health & Development
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