Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
| العنوان: | Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism |
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| المؤلفون: | Melanie Napier, Beth K. Potter, Andrew Mantulak, Asuri N. Prasad, Chitra Prasad, Akshya Vasudev, Srinitya Gannavarapu, Prashanth Rajasekar |
| المصدر: | Molecular Genetics and Metabolism Reports Molecular Genetics and Metabolism Reports, Vol 25, Iss, Pp 100654-(2020) Paediatrics Publications |
| بيانات النشر: | Elsevier, 2020. |
| سنة النشر: | 2020 |
| مصطلحات موضوعية: | Spousal relationships, media_common.quotation_subject, Disease, Inborn errors of metabolism, Interview guide, Pediatrics, 03 medical and health sciences, 0302 clinical medicine, Endocrinology, Genetics, Parental experiences, Molecular Biology, lcsh:QH301-705.5, media_common, 0303 health sciences, lcsh:R5-920, Health professionals, 030305 genetics & heredity, Stressor, Qualitative descriptive, Ambiguity, lcsh:Biology (General), Psychology, lcsh:Medicine (General), Psychosocial, 030217 neurology & neurosurgery, Clinical psychology, Research Paper, Psychosocial stressors |
| الوصف: | Parents of children with inborn errors of metabolism (IEM) face numerous psychosocial challenges. An increased understanding and awareness of these stressors can ensure better overall outcomes for the entire family. We conducted semi-structured, in-person interviews with ten parents to identify psychosocial stressors, strategies, and supports they utilized to overcome their challenges. Our interview guide was designed to elicit familial experiences during the pre- and post-diagnosis periods. The themes and sub-themes were identified through qualitative descriptive textual analysis of audio-recorded transcripts. Major themes identified include ambiguity of illness, changing family and spousal dynamics, and navigating the healthcare system. Sub-themes revolved around disease effects, psychological stressors, health systems, support, and facing the disease. Healthcare professionals have an opportunity to minimize the impact of negative emotional outcomes by assisting families as they navigate the experience of having a child with an IEM. Our findings can be used to develop and continue a more well-rounded, family-oriented framework for IEM management. |
| وصف الملف: | application/pdf |
| اللغة: | English |
| تدمد: | 2214-4269 |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::7b5d111254e43f729a24d94fde0fc6e4 http://europepmc.org/articles/PMC7536737 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....7b5d111254e43f729a24d94fde0fc6e4 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 22144269 |
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