PARENTAL AWARENESS AND DELAYS IN SEEKING SURGICAL CARE FOR PEDIATRIC CONGENITAL ANOMALIES
Main Article Content
Keywords
Congenital anomalies, Parental awareness, delayed surgical care, Pediatric health, Healthcare accessibility
Abstract
Background: Congenital anomalies are one of the foremost reasons for neonatal deaths and childhood illnesses, especially in LMICs. Such outcomes can be reduced by timely surgical intervention, but that is not always followed and is dependent on the parents’ knowledge and availability of healthcare systems.
Objective: This study was aimed to assess the level of parental knowledge and establish possible causes of early presentation of children with congenital anomalies and delayed referrals for surgical intervention.
Methods: This cross-sectional study was conducted for about 6 months from May, 2011 to Oct, 2011 in the Department of Paediatric Surgery, Khalifa Gulnawaz Teaching Hospital, Bannu Medical College, Bannu, Pakistan on 384 parents or caregivers of children with congenital anomalies. Information was gathered via administering of structured questionnaires focusing on demographic characteristics, knowledge, access to healthcare, and possible causes of delay. Chi-square tests were conducted to determine whether there was a relationship between delays and possible factors.
Results: As for the awareness of the condition, 59.9% of parents reported that they knew about it, while only 65.1% had information about the treatment. However, 21.9% of families were not able to seek surgical care within over six months from the diagnosis. The other reasons for delays were absence of knowledge regarding the surgery (40.1%), fear on Surge (26.0%), structural deficit like longer waiting time (26.0%) and poor access to specialized personnel (21.9%). It was also established that delays were higher for families with low education and for those in rural settings.
Conclusion: The implication for public health practice, therefore, lies in the imperative to increase parental assurance in surgical procedures along with increased healthcare access and operating efficiency. Overcoming these barriers can greatly minimise gaps and enhance the quality of life of patients with congenital anomalies in developing areas.
Objective: This study was aimed to assess the level of parental knowledge and establish possible causes of early presentation of children with congenital anomalies and delayed referrals for surgical intervention.
Methods: This cross-sectional study was conducted for about 6 months from May, 2011 to Oct, 2011 in the Department of Paediatric Surgery, Khalifa Gulnawaz Teaching Hospital, Bannu Medical College, Bannu, Pakistan on 384 parents or caregivers of children with congenital anomalies. Information was gathered via administering of structured questionnaires focusing on demographic characteristics, knowledge, access to healthcare, and possible causes of delay. Chi-square tests were conducted to determine whether there was a relationship between delays and possible factors.
Results: As for the awareness of the condition, 59.9% of parents reported that they knew about it, while only 65.1% had information about the treatment. However, 21.9% of families were not able to seek surgical care within over six months from the diagnosis. The other reasons for delays were absence of knowledge regarding the surgery (40.1%), fear on Surge (26.0%), structural deficit like longer waiting time (26.0%) and poor access to specialized personnel (21.9%). It was also established that delays were higher for families with low education and for those in rural settings.
Conclusion: The implication for public health practice, therefore, lies in the imperative to increase parental assurance in surgical procedures along with increased healthcare access and operating efficiency. Overcoming these barriers can greatly minimise gaps and enhance the quality of life of patients with congenital anomalies in developing areas.
References
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12. Williams IA, Shaw R, Kleinman CS, Gersony WM, Prakash A, Levasseur SM, et al. Parental understanding of neonatal congenital heart disease. Pediatric cardiology. 2008;29:1059-65.
13. Hamid C, Holland A, Martin H. Long-term outcome of anorectal malformations: the patient perspective. Pediatric surgery international. 2007;23:97-102.
14. Botto LD, May K, Fernhoff PM, Correa A, Coleman K, Rasmussen SA, et al. A population-based study of the 22q11. 2 deletion: phenotype, incidence, and contribution to major birth defects in the population. Pediatrics. 2003;112(1):101-7.
15. Gustavson KH. Prevalence and aetiology of congenital birth defects, infant mortality and mental retardation in Lahore, Pakistan: a prospective cohort study. Acta Paediatrica. 2005;94(6):769-74.
16. Elahi MM, Jackson IT, Elahi O, Khan AH, Mubarak F, Tariq GB, et al. Epidemiology of cleft lip and cleft palate in Pakistan. Plastic and reconstructive surgery. 2004;113(6):1548-55.
17. Masood AF, Turner LA, Baxter A. Causal attributions and parental attitudes toward children with disabilities in the United States and Pakistan. Exceptional Children. 2007;73(4):475-87.
18. Hewison J, Green JM, Ahmed S, Cuckle HS, Hirst J, Hucknall C, et al. Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK. Prenatal Diagnosis: Published in Affiliation With the International Society for Prenatal Diagnosis. 2007;27(5):419-30.
19. Fatema N, Chowdhury R, Chowdhury L. Incidence of congenital heart disease among hospital live birth in a tertiary hospital of Bangladesh. Cardiovascular Journal. 2008;1(1):14-20.
20. Del Rossi C, Fontechiari S, Casolari E, Fainardi V, Caravaggi F, Lombardi L. Treatment of congenital anomalies in a missionary hospital in Bangladesh: results of 17 paediatric surgical missions. Acta Bio Med. 2008;79:260-3.
2. Duguid A, Morrison S, Robertson A, Chalmers J, Youngson G, Ahmed SF, et al. The psychological impact of genital anomalies on the parents of affected children. Acta paediatrica. 2007;96(3):348-52.
3. Watson S. The principles of management of congenital anomalies of the upper limb. Archives of disease in childhood. 2000;83(1):10-7.
4. Mazer P, Gischler SJ, Koot HM, Tibboel D, Van Dijk M, Duivenvoorden HJ. Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis. Health and Quality of Life Outcomes. 2008;6:1-10.
5. Pye S, Green A. Parent education after newborn congenital heart surgery. Advances in Neonatal Care. 2003;3(3):147-56.
6. Aite L, Zaccara A, Trucchi A, Nahom A, Iacobelli B, Bagolan P. Parents’ informational needs at the birth of a baby with a surgically correctable anomaly. Pediatric Surgery International. 2006;22:267-70.
7. Cheuk D, Wong S, Choi Y, Chau A, Cheung Y. Parents’ understanding of their child’s congenital heart disease. Heart. 2004;90(4):435-9.
8. Majnemer A, Limperopoulos C, Shevell M, Rohlicek C, Rosenblatt B, Tchervenkov C. Health and well-being of children with congenital cardiac malformations, and their families, following open-heart surgery. Cardiology in the Young. 2006;16(2):157-64.
9. Tchervenkov CI, Jacobs JP, Bernier P-L, Stellin G, Kurosawa H, Mavroudis C, et al. The improvement of care for paediatric and congenital cardiac disease across the World: a challenge for the World Society for Pediatric and Congenital Heart Surgery. Cardiology in the Young. 2008;18(S2):63-9.
10. Skari H, Malt U, Bjornland K, Egeland T, Haugen G, Skreden M, et al. Prenatal diagnosis of congenital malformations and parental psychological distress—a prospective longitudinal cohort study. Prenatal Diagnosis: Published in Affiliation With the International Society for Prenatal Diagnosis. 2006;26(11):1001-9.
11. Aminoff D, La Sala E, Zaccara A. Follow-up of anorectal anomalies: the Italian parents' and patients' perspective. Journal of pediatric surgery. 2006;41(4):837-41.
12. Williams IA, Shaw R, Kleinman CS, Gersony WM, Prakash A, Levasseur SM, et al. Parental understanding of neonatal congenital heart disease. Pediatric cardiology. 2008;29:1059-65.
13. Hamid C, Holland A, Martin H. Long-term outcome of anorectal malformations: the patient perspective. Pediatric surgery international. 2007;23:97-102.
14. Botto LD, May K, Fernhoff PM, Correa A, Coleman K, Rasmussen SA, et al. A population-based study of the 22q11. 2 deletion: phenotype, incidence, and contribution to major birth defects in the population. Pediatrics. 2003;112(1):101-7.
15. Gustavson KH. Prevalence and aetiology of congenital birth defects, infant mortality and mental retardation in Lahore, Pakistan: a prospective cohort study. Acta Paediatrica. 2005;94(6):769-74.
16. Elahi MM, Jackson IT, Elahi O, Khan AH, Mubarak F, Tariq GB, et al. Epidemiology of cleft lip and cleft palate in Pakistan. Plastic and reconstructive surgery. 2004;113(6):1548-55.
17. Masood AF, Turner LA, Baxter A. Causal attributions and parental attitudes toward children with disabilities in the United States and Pakistan. Exceptional Children. 2007;73(4):475-87.
18. Hewison J, Green JM, Ahmed S, Cuckle HS, Hirst J, Hucknall C, et al. Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK. Prenatal Diagnosis: Published in Affiliation With the International Society for Prenatal Diagnosis. 2007;27(5):419-30.
19. Fatema N, Chowdhury R, Chowdhury L. Incidence of congenital heart disease among hospital live birth in a tertiary hospital of Bangladesh. Cardiovascular Journal. 2008;1(1):14-20.
20. Del Rossi C, Fontechiari S, Casolari E, Fainardi V, Caravaggi F, Lombardi L. Treatment of congenital anomalies in a missionary hospital in Bangladesh: results of 17 paediatric surgical missions. Acta Bio Med. 2008;79:260-3.
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Published
Nov 18, 2011
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Dr. Muhammad Jehangir Khan. (2011). PARENTAL AWARENESS AND DELAYS IN SEEKING SURGICAL CARE FOR PEDIATRIC CONGENITAL ANOMALIES. Journal of Population Therapeutics and Clinical Pharmacology, 18(3), 567-574. https://doi.org/10.53555/4178xa58
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Author Biography
Dr. Muhammad Jehangir Khan
Associate Professor, Department of Paediatric Surgery, Khalifa Gulnawaz Teaching Hospital, Bannu Medical College, Bannu, Pakistan.
How to Cite
Dr. Muhammad Jehangir Khan. (2011). PARENTAL AWARENESS AND DELAYS IN SEEKING SURGICAL CARE FOR PEDIATRIC CONGENITAL ANOMALIES. Journal of Population Therapeutics and Clinical Pharmacology, 18(3), 567-574. https://doi.org/10.53555/4178xa58