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Parents' perception of health care services for girls with Rett syndrome
Author(s) -
Rodocanachi Roidi Marina Luisa,
Grange Francesca,
Cozzi Francesca,
Pari Elisa,
Toshimori Kumiko,
Ripamonti Enrico
Publication year - 2019
Publication title -
child: care, health and development
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.832
H-Index - 82
eISSN - 1365-2214
pISSN - 0305-1862
DOI - 10.1111/cch.12660
Subject(s) - rett syndrome , perception , psychology , rehabilitation , neurodevelopmental disorder , clinical psychology , health care , psychiatry , medicine , developmental psychology , physical therapy , biochemistry , chemistry , neuroscience , autism , economic growth , economics , gene
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.