Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism.
Inborn errors of metabolism
Parental experiences
Psychosocial stressors
Spousal relationships
Journal
Molecular genetics and metabolism reports
ISSN: 2214-4269
Titre abrégé: Mol Genet Metab Rep
Pays: United States
ID NLM: 101624422
Informations de publication
Date de publication:
Dec 2020
Dec 2020
Historique:
received:
17
04
2020
revised:
14
09
2020
accepted:
19
09
2020
entrez:
12
10
2020
pubmed:
13
10
2020
medline:
13
10
2020
Statut:
epublish
Résumé
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.
Identifiants
pubmed: 33042776
doi: 10.1016/j.ymgmr.2020.100654
pii: S2214-4269(20)30100-2
pmc: PMC7536737
doi:
Types de publication
Journal Article
Langues
eng
Pagination
100654Informations de copyright
© 2020 The Authors.
Déclaration de conflit d'intérêts
All authors agree with the following responses:1.All financial support for this work has been provided through the Department of Pediatrics, London Health Sciences Center.2.There are no financial relationships with any entities to disclose.3.Please see response 1.4.No non-financial interests to disclose.5.No relevant patents or copyrights are pending.6.No authors hold any relationships and/or affiliations with any of the participants in this study.
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