Date Presented 04/22/2023
Low follow up rate of infants with perinatal asphyxia leads to inefficient early intervention of these children in developing countries. The reasons for this are discovered in this study and can be applied to improve the rate of follow up and therapy
Primary Author and Speaker: Suja Angelin Chandrasekaran
Contributing Authors: Hima B John, Benjamin Jeyanth Ross, Asha Arumugam, Indira Balan, Reema Samuel
PURPOSE: Low follow up rate of infants with perinatal asphyxia leads to inefficient early intervention of these children. This will lead to developmental disabilities and delays and would worsen the condition of the disability if already present. Poor parental support and stigma may be related to disability and low follow up rate. This study aims to understand the barriers and facilitators for a neonatal follow-up program as perceived by parents of infants born with hypoxic ischemic encephalopathy (HIE).
DESIGN: This is a qualitative study design using an interpretative phenomenological approach.
METHOD: Focus group discussion, face-to-face in-depth interviews, and telephonic interviews were used for data collection in a neonatal follow up clinic of a tertiary hospital in South India. Participants include 5 fathers and 8 mothers of infants with hypoxic ischemic encephalopathy. Data were analyzed using thematic content analysis.
RESULTS: Parents of children with HIE are torn between two worlds - an atmosphere of support and one of criticism from which three main themes were identified: (i) NICU stay: distressful versus reassuring experiences, (ii) parenthood: supportive versus unsupportive environments, and (iii) neonatal follow-up: adherence versus non-adherence.
CONCLUSION: Parents of children with HIE experience socio-cultural barriers in the NICU, after discharge, and during the follow-up period. Addressing these issues in early intervention sessions starting from NICU admissions to the regular follow up visits will improve the follow up experience and therapy outcomes.
Clark, C., Maher, L., Rudy, M., Pitoniak, J., Watling, R., & Tanta, K. Facilitators and barriers to neonatal intensive care unit follow-up program attendance: A critically appraised topic. J Occup Ther Sch Early Interv. 2018 Apr 3;11(2):109–23. https://doi.org/10.1080/19411243.2018.1462585
Baraldi, E., Allodi, M. W., Smedler, A. C., Westrup, B., Löwing, K., & Ådén, U. Parents’ Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention: Ambivalence, Loneliness, and Relationship Impact. Int J Environ Res Public Health. 2020 Dec 13;17(24):E9326. https://doi.org/10.3390/ijerph17249326
Edwardraj, S., Mumtaj, K., Prasad, J. H., Kuruvilla, A., & Jacob, K. S. Perceptions about intellectual disability: A qualitative study from Vellore, South India. J Intellect Disabil Res JIDR. 2010 Aug;54(8):736–48. https://doi.org/10.1111/j.1365-2788.2010.01301.x.
Dickinson, R. (2018). Parenting a child with disabilities: The intersection of education and cultural perceptions in Southern India. Journal of Human Rights and Social Work, 3(2), 72–80. https://doi.org/10.1007/s41134-018-0053-8