Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism

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 psyc...

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Main Authors:	Prashanth Rajasekar, Srinitya Gannavarapu, Melanie Napier, Asuri N. Prasad, Akshya Vasudev, Andrew Mantulak, Beth K. Potter, Chitra Prasad
Format:	Article
Language:	English
Published:	Elsevier 2020-12-01
Series:	Molecular Genetics and Metabolism Reports
Subjects:	Parental experiences Spousal relationships Inborn errors of metabolism Psychosocial stressors
Online Access:	http://www.sciencedirect.com/science/article/pii/S2214426920301002

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spelling	doaj-41c949a39deb40ee8fd9e6c3de716c332020-12-19T05:07:16ZengElsevierMolecular Genetics and Metabolism Reports2214-42692020-12-0125100654Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolismPrashanth Rajasekar0Srinitya Gannavarapu1Melanie Napier2Asuri N. Prasad3Akshya Vasudev4Andrew Mantulak5Beth K. Potter6Chitra Prasad7Department of Medical Genetics, London Health Sciences Centre, London, ON, CanadaDepartment of Pathology and Laboratory Medicine, Western University, London, ON, CanadaDepartment of Medical Genetics, London Health Sciences Centre, London, ON, CanadaDepartment of Pediatrics, London Health Sciences Centre, London, ON, Canada; Children's Health Research Institute, London, ON, Canada; Division of Pediatric Neurology, Faculty of Medicine, Western University, London, ON, CanadaDepartment of Psychiatry, London Health Sciences Centre, London, ON, CanadaSchool of Social Work, King's University College at the University of Western Ontario, London, ON, CanadaSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, CanadaDepartment of Medical Genetics, London Health Sciences Centre, London, ON, Canada; Department of Pediatrics, London Health Sciences Centre, London, ON, Canada; Children's Health Research Institute, London, ON, Canada; Corresponding author at: Genetics, Metabolism, and Pediatrics, 800 Commissioners Road East, London, ON N6C 2V5, Canada.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.http://www.sciencedirect.com/science/article/pii/S2214426920301002Parental experiencesSpousal relationshipsInborn errors of metabolismPsychosocial stressors
collection	DOAJ
language	English
format	Article
sources	DOAJ
author	Prashanth Rajasekar Srinitya Gannavarapu Melanie Napier Asuri N. Prasad Akshya Vasudev Andrew Mantulak Beth K. Potter Chitra Prasad
spellingShingle	Prashanth Rajasekar Srinitya Gannavarapu Melanie Napier Asuri N. Prasad Akshya Vasudev Andrew Mantulak Beth K. Potter Chitra Prasad Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism Molecular Genetics and Metabolism Reports Parental experiences Spousal relationships Inborn errors of metabolism Psychosocial stressors
author_facet	Prashanth Rajasekar Srinitya Gannavarapu Melanie Napier Asuri N. Prasad Akshya Vasudev Andrew Mantulak Beth K. Potter Chitra Prasad
author_sort	Prashanth Rajasekar
title	Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
title_short	Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
title_full	Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
title_fullStr	Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
title_full_unstemmed	Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
title_sort	parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
publisher	Elsevier
series	Molecular Genetics and Metabolism Reports
issn	2214-4269
publishDate	2020-12-01
description	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.
topic	Parental experiences Spousal relationships Inborn errors of metabolism Psychosocial stressors
url	http://www.sciencedirect.com/science/article/pii/S2214426920301002
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Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism

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