Coping and quality of life of parents of children with achondroplasia—a narrative review
BackgroundCaring for individuals with a chronic disease imposes a substantial burden on parents, significantly impacting their quality of life. For parents of children with achondroplasia, caregiving has notable implications for coping mechanisms and overall wellbeing. This review summarizes finding...
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Frontiers Media S.A.
2025-05-01
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fmed.2025.1500389/full |
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| author | Adekunle Adedeji Adekunle Adedeji Stefanie Witt Stefanie Witt Florian Innig Inês Alves Chiara Provasi Marco Sessa Klaus Mohnike Klaus Mohnike Julia Quitmann Julia Quitmann |
| author_facet | Adekunle Adedeji Adekunle Adedeji Stefanie Witt Stefanie Witt Florian Innig Inês Alves Chiara Provasi Marco Sessa Klaus Mohnike Klaus Mohnike Julia Quitmann Julia Quitmann |
| author_sort | Adekunle Adedeji |
| collection | DOAJ |
| description | BackgroundCaring for individuals with a chronic disease imposes a substantial burden on parents, significantly impacting their quality of life. For parents of children with achondroplasia, caregiving has notable implications for coping mechanisms and overall wellbeing. This review summarizes findings on these parents’ coping strategies and quality of life.MethodsA narrative approach was employed to synthesize research on parental outcomes related to caring for a child with achondroplasia. The PRISMA chart flow was utilized to present the article screening strategy and results, following established guidelines for systematic reviews.ResultsThe review reveals a scarcity of studies examining the impact of caring for a child with achondroplasia on parental outcomes, with only two studies meeting the inclusion criteria. These studies suggest that having a child with achondroplasia significantly affects parental coping and quality of life, indicating substantial emotional and social implications. Additionally, no specific tools or measures to assess outcomes for these parents, highlighting a significant gap in research and resources.ConclusionThe parental experience of caring for a child with achondroplasia involves significant emotional and social challenges. Stressors from emotional distress, social isolation, altered family dynamics, and demanding healthcare interactions underscore the need for robust support systems. Addressing the research gaps requires developing and validating specific measures to assess the outcomes for parents of children with achondroplasia accurately. This will encourage further research and guide the development and evaluation of interventions to improve the coping and QoL of parents of children with achondroplasia. |
| format | Article |
| id | doaj-art-07947e3f35404727bbfc98bb50299523 |
| institution | DOAJ |
| issn | 2296-858X |
| language | English |
| publishDate | 2025-05-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Medicine |
| spelling | doaj-art-07947e3f35404727bbfc98bb502995232025-08-20T03:05:53ZengFrontiers Media S.A.Frontiers in Medicine2296-858X2025-05-011210.3389/fmed.2025.15003891500389Coping and quality of life of parents of children with achondroplasia—a narrative reviewAdekunle Adedeji0Adekunle Adedeji1Stefanie Witt2Stefanie Witt3Florian Innig4Inês Alves5Chiara Provasi6Marco Sessa7Klaus Mohnike8Klaus Mohnike9Julia Quitmann10Julia Quitmann11Department of Social Work, Hamburg University of Applied Sciences, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center, Hamburg-Eppendorf, Hamburg, GermanyDepartment of Social Work, Hamburg University of Applied Sciences, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center, Hamburg-Eppendorf, Hamburg, GermanyFederal Association for People of Short Stature and their Families (Bundesverband Kleinwüchsige Menschen und ihre Familien e.V.), BKMF, Bremen, GermanyNational Patient Organization for Skeletal Dysplasias – ANDO, School of Health and Human Development, University of Évora - CHRC, Évora, PortugalItalian Association on Achondroplasia (Associazione per l’Informazione e lo studio dell’acondroplasia) AISAC, Milan, ItalyItalian Association on Achondroplasia (Associazione per l’Informazione e lo studio dell’acondroplasia) AISAC, Milan, ItalyFederal Association for People of Short Stature and their Families (Bundesverband Kleinwüchsige Menschen und ihre Familien e.V.), BKMF, Bremen, GermanyChildren’s Hospital, Otto-von-Guericke-University, Magdeburg, GermanyDepartment of Social Work, Hamburg University of Applied Sciences, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center, Hamburg-Eppendorf, Hamburg, GermanyBackgroundCaring for individuals with a chronic disease imposes a substantial burden on parents, significantly impacting their quality of life. For parents of children with achondroplasia, caregiving has notable implications for coping mechanisms and overall wellbeing. This review summarizes findings on these parents’ coping strategies and quality of life.MethodsA narrative approach was employed to synthesize research on parental outcomes related to caring for a child with achondroplasia. The PRISMA chart flow was utilized to present the article screening strategy and results, following established guidelines for systematic reviews.ResultsThe review reveals a scarcity of studies examining the impact of caring for a child with achondroplasia on parental outcomes, with only two studies meeting the inclusion criteria. These studies suggest that having a child with achondroplasia significantly affects parental coping and quality of life, indicating substantial emotional and social implications. Additionally, no specific tools or measures to assess outcomes for these parents, highlighting a significant gap in research and resources.ConclusionThe parental experience of caring for a child with achondroplasia involves significant emotional and social challenges. Stressors from emotional distress, social isolation, altered family dynamics, and demanding healthcare interactions underscore the need for robust support systems. Addressing the research gaps requires developing and validating specific measures to assess the outcomes for parents of children with achondroplasia accurately. This will encourage further research and guide the development and evaluation of interventions to improve the coping and QoL of parents of children with achondroplasia.https://www.frontiersin.org/articles/10.3389/fmed.2025.1500389/fullPROMspatient reportproxy reportquality of lifeparents of pediatric patientsachondroplasia |
| spellingShingle | Adekunle Adedeji Adekunle Adedeji Stefanie Witt Stefanie Witt Florian Innig Inês Alves Chiara Provasi Marco Sessa Klaus Mohnike Klaus Mohnike Julia Quitmann Julia Quitmann Coping and quality of life of parents of children with achondroplasia—a narrative review Frontiers in Medicine PROMs patient report proxy report quality of life parents of pediatric patients achondroplasia |
| title | Coping and quality of life of parents of children with achondroplasia—a narrative review |
| title_full | Coping and quality of life of parents of children with achondroplasia—a narrative review |
| title_fullStr | Coping and quality of life of parents of children with achondroplasia—a narrative review |
| title_full_unstemmed | Coping and quality of life of parents of children with achondroplasia—a narrative review |
| title_short | Coping and quality of life of parents of children with achondroplasia—a narrative review |
| title_sort | coping and quality of life of parents of children with achondroplasia a narrative review |
| topic | PROMs patient report proxy report quality of life parents of pediatric patients achondroplasia |
| url | https://www.frontiersin.org/articles/10.3389/fmed.2025.1500389/full |
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