Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Dec;15(1):1725362.
doi: 10.1080/17482631.2020.1725362.

Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders

Genevieve Currie  1 , Joanna Szabo  1
Affiliations

Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders

Genevieve Currie et al. Int J Qual Stud Health Well-being. 2020 Dec.

Abstract

Purpose: The experiences of parents caring for the complex care needs of children with rare neurodevelopmental disorders are not well understood. Parents struggle to meet their children's medical, behavioural, and social needs within and across health, social, and family systems. The purpose of this study was to explore the parents' experience of caring for medical and social care needs for children with rare neurodevelopmental disorders.Methods: Hermeneutic phenomenology was used for the data analysis. Fifteen parents participated in semi-structured interviews.Results: Interpretive analysis revealed four insights: (a) difference in children's behaviours and disease manifestations led to misunderstanding and vulnerability within social domains, (b) social taboo and stigma were experienced with rarity, (c) fragmented disconnected care from health and social systems impacted families, and (d) incomprehension from friends and family occurs when managing daily care.Conclusion: New interpretations and increased understanding of parents' experiences are required in supporting parents caring for children with complex needs. Understanding parents' experiences could reduce social isolation and exclusion, and mitigate appropriate and supportive practices and services within and across medical, social, and family systems.

Keywords: Children; caregivers; chronic disease; experience of healthcare; healthcare; neurodevelopmental disorders; parents; rare disease.

PubMed Disclaimer

Conflict of interest statement

No potential conflict of interest was reported by the authors.

References

    1. Antonelli, R. C., Browning, D. M., Hackett-Hunter, P., McAllister, J. W., & Risko, W. (2012). Pediatric care coordination curriculum. Retrieved from http://resourcehub.practiceinnovationco.org/wp-content/uploads/2016/12/P...
    1. Arim, R. G., Miller, A. R., Guèvremont, A., Lach, L. M., Brehaut, J. C., & Kohen, D. E. (2017). Children with neurodevelopmental disorders and disabilities: A population‐based study of healthcare service utilization using administrative data. Developmental Medicine & Child Neurology, 59, 1284–10. - PubMed
    1. Austin, H., & Carpenter, L. (2008). Troubled, troublesome, troubling mothers: The dilemma of difference in women’s personal motherhood narratives. Narrative Inquiry, 18, 378–392.
    1. Barnert, E. S., Coller, R. J., Nelson, B. B., Thompson, L. R., Chan, V., Padilla, C., … Chung, P. J. (2017). Experts’ perspectives toward a population health approach for children with medical complexity. Academic Pediatrics, 17, 672–677. - PMC - PubMed
    1. Baumbusch, J., Mayer, S., & Sloan-Yip, I. (2018). Alone in a crowd? Parents of children with rare diseases’ experiences of navigating the healthcare system. Journal of Genetic Counseling, 28, 80–90. - PubMed