Assessing the impacts of having a child with achondroplasia on parent well-being
| العنوان: | Assessing the impacts of having a child with achondroplasia on parent well-being |
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| المؤلفون: | Dorthe Viuff, Jill Gianettoni, Alden Smith, Sho Ota, Meryl Brod, Kathryn M. Pfeiffer, R Will Charlton |
| المصدر: | Quality of Life Research |
| بيانات النشر: | Springer International Publishing, 2020. |
| سنة النشر: | 2020 |
| مصطلحات موضوعية: | Adult, Male, Parents, Quality of life, medicine.medical_specialty, Work, media_common.quotation_subject, Article, Achondroplasia, Emotional well-being, 03 medical and health sciences, 0302 clinical medicine, Quality of life (healthcare), Content validity, medicine, Humans, Child, Aged, media_common, 0303 health sciences, Debriefing, Public health, 030305 genetics & heredity, Public Health, Environmental and Occupational Health, Correction, Middle Aged, Focus group, Caregivers, Child, Preschool, Patient-reported outcome measures, Well-being, Female, Worry, Psychology, 030217 neurology & neurosurgery, Clinical psychology |
| الوصف: | Purpose This study’s purpose was to develop a better understanding of the experiences of parents of children with achondroplasia and to provide qualitative evidence to support the development of a patient-reported outcome (PRO) measure of parent impacts. Methods Concept elicitation (CE) individual/focus group interviews were conducted with parents of children aged 2 to Results Thirty-six parents participated in individual/focus group CE interviews. The analysis identified parent impacts in four domains, including caretaking responsibilities, emotional well-being, family, and work, and results informed the development of the Achondroplasia Parent Experience Measure (APEM). Caretaking responsibilities included managing child’s medical care (92%), helping child with self-care (67%), advocating for child (64%), assisting child (56%), and observing/monitoring child (e.g., to ensure safety; 47%). Impacts on parents’ emotional well-being included worry about the future (75%), worry about child’s physical health (67%), safety concerns (50%), feeling stressed/overwhelmed (44%), and worry about child’s social relationships (42%). Impacts on family and work included family strain (56%), limiting/adapting family activities (42%), and missed work time (50%). CD interviews with an additional 16 parents of children with achondroplasia confirmed understanding and item relevance. Conclusion The results improve our understanding of the experiences of parents of children with achondroplasia and provide qualitative evidence to support the content validity of the APEM. A psychometric study is needed to validate the measure. |
| اللغة: | English |
| تدمد: | 1573-2649 0962-9343 |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::4245ba07ed4b11a353a198e4e935e15a http://europepmc.org/articles/PMC7847864 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....4245ba07ed4b11a353a198e4e935e15a |
| قاعدة البيانات: | OpenAIRE |
Find this article in full text from Springer Verlag. | تدمد: | 15732649 09629343 |
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