Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents
This qualitative systematic review aims to get a better understanding of what it means to live with a rare congenital craniofacial condition according to patients and their parents. Eight patient representatives provided input to this study. After a systematic search, 1,291 studies were screened an...
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| Language: | English |
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Medical Journals Sweden
2025-02-01
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| Series: | Journal of Plastic Surgery and Hand Surgery |
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| Online Access: | https://medicaljournalssweden.se/JPHS/article/view/42953 |
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| author | Mariët Faasse Hester M. van de Bovenkamp Karolijn Dulfer Virginie Kauffman Ivana Marinac Veronica Leonardi Gareth Davies Philippe Pakter Jana Angelova Karen Wilkinson-Bell Lars Kölby Marizela Kljajić |
| author_facet | Mariët Faasse Hester M. van de Bovenkamp Karolijn Dulfer Virginie Kauffman Ivana Marinac Veronica Leonardi Gareth Davies Philippe Pakter Jana Angelova Karen Wilkinson-Bell Lars Kölby Marizela Kljajić |
| author_sort | Mariët Faasse |
| collection | DOAJ |
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This qualitative systematic review aims to get a better understanding of what it means to live with a rare congenital craniofacial condition according to patients and their parents. Eight patient representatives provided input to this study. After a systematic search, 1,291 studies were screened and 32 qualitative and mixed methods articles (> 691 participants) were included. ENhancing Transparency in REporting the synthesis of Qualitative research (ENTREQ), Cochrane, and COnsolidated criteria for REporting Qualitative research (COREQ) checklists were used for reporting qualitative evidence synthesis and assessment of reporting of included studies. Studies predominantly included parents’ perspectives and used mixed samples of diagnosis and sometimes combined the parent and patient perspectives. The results sections of the articles were analyzed inductively using Thematic Synthesis (i.e. line-by-line coding, generating descriptive and analytical themes). Five analytical themes were identified that describe experiences and perspectives: (1) Healthcare experiences, (2) Raising and Growing up, (3) Development of character, (4) Physical impact of the condition, and (5) Social experiences. Underlying themes illustrate that the different aspects throughout life are intertwined, that relationships in all different domains play an important role in shaping perspectives, and that experiences may change over time. Furthermore, it demonstrates that living with a craniofacial condition and undergoing treatment is multifaceted and that the perspectives of patients and parents may differ. In conclusion, well-being and quality of life of patients and their parents are dependent on many different aspects, and surgeons and other healthcare professionals should tailor their skills, expertise, and support to individual-specific needs besides medical indications and move beyond surgical excellence.
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| format | Article |
| id | doaj-art-d5dd362357754e3b82b96c7b71e80899 |
| institution | Kabale University |
| issn | 2000-6764 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | Medical Journals Sweden |
| record_format | Article |
| series | Journal of Plastic Surgery and Hand Surgery |
| spelling | doaj-art-d5dd362357754e3b82b96c7b71e808992025-08-25T11:16:01ZengMedical Journals SwedenJournal of Plastic Surgery and Hand Surgery2000-67642025-02-0160110.2340/jphs.v60.42953Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parentsMariët Faasse0Hester M. van de Bovenkamp1Karolijn Dulfer2Virginie Kauffman3Ivana Marinac4Veronica Leonardi5Gareth Davies6Philippe Pakter7Jana Angelova8Karen Wilkinson-Bell9Lars Kölby10Marizela Kljajić11Dutch National Patient and Parents Society for congenital craniofacial conditions, Landelijke Patienten- en Oudervereniging voor Schedel- en/of Aangezichtsaandoeningen, (LAPOSA), ePAG ERN CRANIO, the Netherlands; Erasmus School of Health Policy and Management, Health Care Governance, Erasmus University, Rotterdam, the NetherlandsErasmus School of Health Policy and Management, Health Care Governance, Erasmus University, Rotterdam, the NetherlandsIntensive Care Unit, Department of Paediatrics and Paediatric Surgery, Erasmus Medical Centre, Sophia Children’s Hospital, Rotterdam, the NetherlandsPatient and Parent Society for syndromic craniosynostosis, Les P’tits Courageaux, ePAG ERN CRANIO, FranceRare Disease Croatia, Hrvatski Savez za rijetke bolesti, ePAG ERN CRANIO, CroatiaPatient and Parent Craniosynostosis Society, Associazione Craniostenosi AICRA, ePAG ERN CRANIO, ItalyEuropean Cleft Organisation, ePAG ERN CRANIO, the NetherlandsPierre Robin Europe, ePAG ERN CRANIO, SwitzerlandPatient Society for cleft lip and palate, Association ALA, ePAG ERN CRANIO, BulgariaHeadlines Craniofacial Support, ePAG ERN CRANIO, United KingdomPlastic Surgery, Sahlgrenska University Hospital, member ERN CRANIO, Göteborg, SwedenPlastic Surgery, Sahlgrenska University Hospital, member ERN CRANIO, Göteborg, Sweden This qualitative systematic review aims to get a better understanding of what it means to live with a rare congenital craniofacial condition according to patients and their parents. Eight patient representatives provided input to this study. After a systematic search, 1,291 studies were screened and 32 qualitative and mixed methods articles (> 691 participants) were included. ENhancing Transparency in REporting the synthesis of Qualitative research (ENTREQ), Cochrane, and COnsolidated criteria for REporting Qualitative research (COREQ) checklists were used for reporting qualitative evidence synthesis and assessment of reporting of included studies. Studies predominantly included parents’ perspectives and used mixed samples of diagnosis and sometimes combined the parent and patient perspectives. The results sections of the articles were analyzed inductively using Thematic Synthesis (i.e. line-by-line coding, generating descriptive and analytical themes). Five analytical themes were identified that describe experiences and perspectives: (1) Healthcare experiences, (2) Raising and Growing up, (3) Development of character, (4) Physical impact of the condition, and (5) Social experiences. Underlying themes illustrate that the different aspects throughout life are intertwined, that relationships in all different domains play an important role in shaping perspectives, and that experiences may change over time. Furthermore, it demonstrates that living with a craniofacial condition and undergoing treatment is multifaceted and that the perspectives of patients and parents may differ. In conclusion, well-being and quality of life of patients and their parents are dependent on many different aspects, and surgeons and other healthcare professionals should tailor their skills, expertise, and support to individual-specific needs besides medical indications and move beyond surgical excellence. https://medicaljournalssweden.se/JPHS/article/view/42953Patient experienceparent-child relationscraniofacial abnormalitiescraniosynostosiscraniofacial microsomiamicrotia |
| spellingShingle | Mariët Faasse Hester M. van de Bovenkamp Karolijn Dulfer Virginie Kauffman Ivana Marinac Veronica Leonardi Gareth Davies Philippe Pakter Jana Angelova Karen Wilkinson-Bell Lars Kölby Marizela Kljajić Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents Journal of Plastic Surgery and Hand Surgery Patient experience parent-child relations craniofacial abnormalities craniosynostosis craniofacial microsomia microtia |
| title | Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents |
| title_full | Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents |
| title_fullStr | Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents |
| title_full_unstemmed | Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents |
| title_short | Moving beyond surgical excellence: a qualitative systematic review into the perspectives and experiences of children, adolescents, and adults living with a rare congenital craniofacial condition and their parents |
| title_sort | moving beyond surgical excellence a qualitative systematic review into the perspectives and experiences of children adolescents and adults living with a rare congenital craniofacial condition and their parents |
| topic | Patient experience parent-child relations craniofacial abnormalities craniosynostosis craniofacial microsomia microtia |
| url | https://medicaljournalssweden.se/JPHS/article/view/42953 |
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