Challenges of having a child with congenital anomalies in Saudi Arabia: a qualitative exploration of mothers' experience.
children with disabilities
congenital anomalies
disability stigma
healthcare delivery
mothers of children with disabilities
parenting a child with disabilities
pre-school children
Journal
Frontiers in public health
ISSN: 2296-2565
Titre abrégé: Front Public Health
Pays: Switzerland
ID NLM: 101616579
Informations de publication
Date de publication:
2023
2023
Historique:
received:
29
11
2022
accepted:
29
03
2023
medline:
15
5
2023
pubmed:
12
5
2023
entrez:
11
5
2023
Statut:
epublish
Résumé
Congenital anomalies in children lead to morbidity, mortality, or lifelong disabilities. Mothers of children with congenital anomalies face considerable obstacles in parenting their children because of their lack of knowledge about such health conditions, lack of family support, and lack of health, rehabilitation, and social care support. In Saudi Arabia, less attention are given to researching this important issue. In this context, the purpose of the study was to explore mothers' experiences and perceptions toward children with congenital anomalies. We employed a qualitative phenomenological study design. We purposively recruited 10 mothers of children with congenital anomalies from different cities in Saudi Arabia. We interviewed the mothers with an in-depth interview guideline. The interview questions were designed to explore their perception of congenital anomalies in children and their experience of parenting and seeking health, rehabilitation, education, and social care services for children with such anomalies. Analysis of our data suggest that mothers of children with congenital anomalies face considerable challenges because of a lack of medical, rehabilitation, and social care support, lack of knowledge about these conditions and their management, lack of responsiveness of the healthcare providers, lack of support from the family and the stigma associated with such conditions. Consequently, mothers experience poor mental and social well-being. Mothers are facing considerable challenges in raising children with congenital anomalies. Regular screening for early detection of congenital anomalies, counseling support for mothers, and improving healthcare providers' responsiveness, knowledge, and skills are necessary. In addition, appropriate awareness-raising programs need to be implemented at the community level to counteract the stigma and negative attitudes of the community toward children with congenital anomalies and their families.
Sections du résumé
Background
Congenital anomalies in children lead to morbidity, mortality, or lifelong disabilities. Mothers of children with congenital anomalies face considerable obstacles in parenting their children because of their lack of knowledge about such health conditions, lack of family support, and lack of health, rehabilitation, and social care support. In Saudi Arabia, less attention are given to researching this important issue. In this context, the purpose of the study was to explore mothers' experiences and perceptions toward children with congenital anomalies.
Methods
We employed a qualitative phenomenological study design. We purposively recruited 10 mothers of children with congenital anomalies from different cities in Saudi Arabia. We interviewed the mothers with an in-depth interview guideline. The interview questions were designed to explore their perception of congenital anomalies in children and their experience of parenting and seeking health, rehabilitation, education, and social care services for children with such anomalies.
Result
Analysis of our data suggest that mothers of children with congenital anomalies face considerable challenges because of a lack of medical, rehabilitation, and social care support, lack of knowledge about these conditions and their management, lack of responsiveness of the healthcare providers, lack of support from the family and the stigma associated with such conditions. Consequently, mothers experience poor mental and social well-being.
Conclusion
Mothers are facing considerable challenges in raising children with congenital anomalies. Regular screening for early detection of congenital anomalies, counseling support for mothers, and improving healthcare providers' responsiveness, knowledge, and skills are necessary. In addition, appropriate awareness-raising programs need to be implemented at the community level to counteract the stigma and negative attitudes of the community toward children with congenital anomalies and their families.
Identifiants
pubmed: 37168071
doi: 10.3389/fpubh.2023.1111171
pmc: PMC10166135
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1111171Informations de copyright
Copyright © 2023 Alqarawi, Alhamidi, Alsadoun, Alasqah and Mahmud.
Déclaration de conflit d'intérêts
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Références
J Clin Psychol Med Settings. 2015 Mar;22(1):64-76
pubmed: 25614325
BMC Psychol. 2021 Feb 19;9(1):33
pubmed: 33608056
PLoS One. 2019 Apr 8;14(4):e0214967
pubmed: 30958858
J Clin Nurs. 2020 Sep;29(17-18):3222-3235
pubmed: 32621293
J Pediatr Surg. 2021 Mar;56(3):471-475
pubmed: 32862997
BMJ Open. 2019 Sep 5;9(9):e026351
pubmed: 31492776
J Spec Pediatr Nurs. 2017 Jul;22(3):
pubmed: 28627006
PLoS One. 2016 Mar 08;11(3):e0150760
pubmed: 26953589
Rev Lat Am Enfermagem. 2018 Nov 14;26:e3080
pubmed: 30462791
PLoS One. 2021 Nov 2;16(11):e0257846
pubmed: 34727116
Int J Community Based Nurs Midwifery. 2016 Oct;4(4):374-385
pubmed: 27713900
Eur Psychiatry. 2015 Jul;30(5):555-61
pubmed: 25618445
Rev Lat Am Enfermagem. 2009 Jul-Aug;17(4):495-500
pubmed: 19820856