Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review
Rare Diseases (RDs) in adolescents are characterized by low frequency and clinical heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as well as costly and specialized treatments. Comprehending patients’ and parents’ needs through a mixed systematic review is essenti...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-08-01
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| Series: | Pediatric Reports |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2036-7503/15/3/43 |
| _version_ | 1797578086335643648 |
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| author | Pelagia Tsitsani Georgios Katsaras Elpidoforos S. Soteriades |
| author_facet | Pelagia Tsitsani Georgios Katsaras Elpidoforos S. Soteriades |
| author_sort | Pelagia Tsitsani |
| collection | DOAJ |
| description | Rare Diseases (RDs) in adolescents are characterized by low frequency and clinical heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as well as costly and specialized treatments. Comprehending patients’ and parents’ needs through a mixed systematic review is essential for healthcare system planning. This mixed systematic review explored barriers to and facilitators of effective care for adolescents with RDs as perceived by patients and their parents. Three databases (2008–2023) were searched and twenty-five articles were selected and critically appraised with the Mixed Methods Appraisal Tool (MMAT; version 2018). The review followed a convergent integrated approach for data extraction according to Joanna Briggs Institute’s (JBI) mixed method systematic review (MMSR) methodology. Subsequent reflexive thematic analysis categorized the barriers and facilitators into five levels (intrapersonal, interpersonal, institutional, community and public policy) following the conceptual framework of the socio-ecological model for healthcare promotion. Barriers on the institutional and public policy level stood out as the most frequently reported, resulting in unmet care needs and frustrating family dynamics. National and regional healthcare policies are rarely actually linked to pragmatic intervention programs with a measurable impact on patients’ welfare. Targeted strategies involving primary care infrastructure and personnel for better coordination and management of the disease are discussed. |
| first_indexed | 2024-03-10T22:17:31Z |
| format | Article |
| id | doaj.art-386dc3ee471a456f8d91d748613f64b8 |
| institution | Directory Open Access Journal |
| issn | 2036-7503 |
| language | English |
| last_indexed | 2024-03-10T22:17:31Z |
| publishDate | 2023-08-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Pediatric Reports |
| spelling | doaj.art-386dc3ee471a456f8d91d748613f64b82023-11-19T12:23:34ZengMDPI AGPediatric Reports2036-75032023-08-0115346248210.3390/pediatric15030043Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic ReviewPelagia Tsitsani0Georgios Katsaras1Elpidoforos S. Soteriades2Healthcare Management Program, School of Economics and Management, Open University of Cyprus, 2220 Nicosia, CyprusPaediatric Department, General Hospital of Pella—Hospital Unit of Edessa, 58200 Edessa, GreeceHealthcare Management Program, School of Economics and Management, Open University of Cyprus, 2220 Nicosia, CyprusRare Diseases (RDs) in adolescents are characterized by low frequency and clinical heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as well as costly and specialized treatments. Comprehending patients’ and parents’ needs through a mixed systematic review is essential for healthcare system planning. This mixed systematic review explored barriers to and facilitators of effective care for adolescents with RDs as perceived by patients and their parents. Three databases (2008–2023) were searched and twenty-five articles were selected and critically appraised with the Mixed Methods Appraisal Tool (MMAT; version 2018). The review followed a convergent integrated approach for data extraction according to Joanna Briggs Institute’s (JBI) mixed method systematic review (MMSR) methodology. Subsequent reflexive thematic analysis categorized the barriers and facilitators into five levels (intrapersonal, interpersonal, institutional, community and public policy) following the conceptual framework of the socio-ecological model for healthcare promotion. Barriers on the institutional and public policy level stood out as the most frequently reported, resulting in unmet care needs and frustrating family dynamics. National and regional healthcare policies are rarely actually linked to pragmatic intervention programs with a measurable impact on patients’ welfare. Targeted strategies involving primary care infrastructure and personnel for better coordination and management of the disease are discussed.https://www.mdpi.com/2036-7503/15/3/43Rare Diseases (RDs)adolescentshealthcare provisionmixed systematic review |
| spellingShingle | Pelagia Tsitsani Georgios Katsaras Elpidoforos S. Soteriades Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review Pediatric Reports Rare Diseases (RDs) adolescents healthcare provision mixed systematic review |
| title | Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review |
| title_full | Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review |
| title_fullStr | Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review |
| title_full_unstemmed | Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review |
| title_short | Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review |
| title_sort | barriers to and facilitators of providing care for adolescents suffering from rare diseases a mixed systematic review |
| topic | Rare Diseases (RDs) adolescents healthcare provision mixed systematic review |
| url | https://www.mdpi.com/2036-7503/15/3/43 |
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