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

Prashanth Rajasekar¹, Srinitya Gannavarapu², Melanie Napier¹, Asuri N Prasad^{3

4

5}, Akshya Vasudev⁶, Andrew Mantulak⁷, Beth K Potter⁸, Chitra Prasad^{1

3

4}

Affiliations

¹ Department of Medical Genetics, London Health Sciences Centre, London, ON, Canada.
² Department of Pathology and Laboratory Medicine, Western University, London, ON, Canada.
³ Department of Pediatrics, London Health Sciences Centre, London, ON, Canada.
⁴ Children's Health Research Institute, London, ON, Canada.
⁵ Division of Pediatric Neurology, Faculty of Medicine, Western University, London, ON, Canada.
⁶ Department of Psychiatry, London Health Sciences Centre, London, ON, Canada.
⁷ School of Social Work, King's University College at the University of Western Ontario, London, ON, Canada.
⁸ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.

PMID: 33042776
PMCID: PMC7536737
DOI: 10.1016/j.ymgmr.2020.100654

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

Prashanth Rajasekar et al. Mol Genet Metab Rep. 2020.

. 2020 Oct 5:25:100654.

doi: 10.1016/j.ymgmr.2020.100654. eCollection 2020 Dec.

Authors

Prashanth Rajasekar¹, Srinitya Gannavarapu², Melanie Napier¹, Asuri N Prasad^{3

4

5}, Akshya Vasudev⁶, Andrew Mantulak⁷, Beth K Potter⁸, Chitra Prasad^{1

3

4}

Affiliations

¹ Department of Medical Genetics, London Health Sciences Centre, London, ON, Canada.
² Department of Pathology and Laboratory Medicine, Western University, London, ON, Canada.
³ Department of Pediatrics, London Health Sciences Centre, London, ON, Canada.
⁴ Children's Health Research Institute, London, ON, Canada.
⁵ Division of Pediatric Neurology, Faculty of Medicine, Western University, London, ON, Canada.
⁶ Department of Psychiatry, London Health Sciences Centre, London, ON, Canada.
⁷ School of Social Work, King's University College at the University of Western Ontario, London, ON, Canada.
⁸ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.

PMID: 33042776
PMCID: PMC7536737
DOI: 10.1016/j.ymgmr.2020.100654

Abstract

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.

Keywords: Inborn errors of metabolism; Parental experiences; Psychosocial stressors; Spousal relationships.

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Conflict of interest statement

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.

References

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

References

LinkOut - more resources

Full Text Sources