A Phenomenological Study to Assess the Lived Experiences of Parents of Children with Congenital Disorders Admitted in Paediatric Health Care Settings of Selected Paediatric Hosp

Rajesh P. Joseph; Nirmal Raj E.V.; Dayanand Belagavi; Carol Christian; Bhanu Baria; Joshi Ilesh; Bhoi Ragini

doi:10.61841/zb6xhp28

Authors

Rajesh P. Joseph Associate Professor, Department of Paediatric Nursing, Sumandeep Nursing College, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat Author
Nirmal Raj E.V. Associate Professor, Department of Paediatric Nursing, Sumandeep Nursing College, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat Author
Dayanand Belagavi Assistant Professor, Department of Paediatric Nursing, Sumandeep Nursing College, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat Author
Carol Christian Undergraduate Nursing Student, Sumandeep Nursing College, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat Author
Bhanu Baria Undergraduate Nursing Student, Sumandeep Nursing College, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat Author
Joshi Ilesh Undergraduate Nursing Student, Sumandeep Nursing College, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat Author
Bhoi Ragini Undergraduate Nursing Student, Sumandeep Nursing College, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat Author

DOI:

https://doi.org/10.61841/zb6xhp28

Keywords:

Congenital Anomalies, Lived Experiences, Parents, Hospitalization

Abstract

Background: Congenital anomalies have been understood as a root cause for neonatal morbidity and mortality in recent days. Living with a congenital anomaly is a critical issue, and that might influence diverse aspects of a parent’s life. It is a burden for the parents to deal with the hospitalization and activities of daily living of the children.

Aim: The investigators aimed to illustrate the lived experiences of parents having children with congenital anomalies.

Material and Methods: A qualitative study was carried out using the phenomenological hermeneutical method to transcribe the lived experiences of the parents having children diagnosed with any form of congenital anomaly. Twenty-five mothers were identified from three pediatric hospitals by convenience sampling technique and interviewed by using an open-ended questionnaire. Each interview was audio recorded and lasted for 30 to 45 minutes. The narrated experiences were interpreted into a meaningful statement for exploration. The analysis of collected information led to the development of themes.

Results: The present study helped us to highlight the emotions, feelings, and challenges of parents dealing with children during their hospitalization. Socio-demographic characteristics showed that the majority (84%) of the parents were mothers. The interview verbatim was transcribed into seven themes for deeper understanding. (1) Emotional experiences, (2) experiences related to financial issues, (3) experiences concerned with social perspectives, (4) child-centered experiences, (5) experiences on knowledge and awareness, (6) child self-care experiences (7) experiences towards exposure to unfamiliar environments.

Conclusion: The study insists on the importance of routine assessments to be conducted by the health care providers to understand the strange experiences of parents during their child’s hospitalization. The support they receive through health care and therapeutic interpersonal relationships would promote the physical and psychological well-being of parents.

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References

[1] Cunha AC, Pereira JP, Jr, Caldeira CL, Carneiro VM. Diagnosis of congenital malformations: Impact on the mental health of pregnant women. Estud. Psicol. 2016; 33(4):601–611.

[2] Hammonds M. Linking early healthy attachment with long-term mental health. Nurs N Z. 2012;18(2):12–14

[3] JASIM, WISAM ABDULLAH, and HUSSEIN IMRAN MOUSA. "NEUROSURGICAL CONGENITAL ANOMALIES IN BASRAH SOCIODEMOGRAPHIC REVIEW." International Journal of Medicine and Pharmaceutical Science (IJMPS (8.2), Apr 2018, 33-38

[4] https://www.worldlifeexpectancy.com/india-congenital-anomalies

[5] Bhat BV, Ravikumara M. Perinatal mortality in India-Need for introspection. Indian J Matern Child Health. 1996;7:31–3.

[6] NEELAM, THAKUR. "AN EPIDEMIOLOGICAL STUDY OF MENTAL RETARDATION WITHOUT A COMMON GENETIC CAUSE IN THE POPULATION OF HIMACHAL PRADESH, INDIA." International Journal of Environment, Ecology, Family and Urban Studies (IJEEFUS) (7.5,) Oct 2017, 23-32

[7] Agarwal SS, Singh U, Singh PS, Singh SS, Das V, Sharma A, et al. Prevalence and spectrum of congenital malformations in a prospective study at a teaching hospital. Indian J Med Res. 1991; 94: 413–9.

[8] RADHIKA, RANI L., and S. CHANDRALINGAM. "ACOUSTIC ANALYSIS OF CRY SIGNAL TO DIFFERENTIATE HEALTHY AND CONGENITAL HEART DISORDER IN INFANTS." International Journal of Electronics and Communication Engineering (IJECE) (5.6), Oct-Nov 2016; 21-28

[9] Santos MM, Böing E, Oliveira ZA, Crepaldi MA. Prenatal diagnosis of malformations incompatible with

life: psychological implications and possibilities of intervention. Rev Psicol Saúde. 2014;6(1):64–73

[10] GIRI, RANJANA, et al. "GIANT CONGENITAL NEVUS WITH PLEXIFORM NEUROFIBROMA AND

EPITHELOID VARIANT OF MALIGNANT PERIPHERAL NERVE SHEATH TUMOR WITH

MELANOCYTIC DIFFERENTIATION A RARE CASE REPORT." International Journal of General

Medicine and Pharmacy (IJGMP (4.2), Mar 2015, 81-86)

[11] Gatford A Down syndrome: experiences of mothers from different cultures Br J Nurs. 2001 Oct 11-24;

10(18):1193-9.

[12] O'Connell O1, Meaney S2, O'Donoghue K, Anencephaly: the maternal experience of continuing with the

pregnancy. Incompatible with life but not with love Midwifery 2019 Apr; 71: 12-18.

[13] Bruce E, Lindh V, Sundin K, Support for Fathers of Children With Heart Defects, Clin Nurs Res. 2016

Jun;25(3):254-72.

[14] Bruce E, Lilja C, Sundin K, Mothers' lived experiences of support when living with young children with

congenital heart defects, J Spec Pediatr Nurs. 2014 Jan; 19(1):54-67.

[15] Montano-Soto, Tatiana, Evarista Arellano-García, and L. Camarena-Ojinaga. "Genotoxic biomonitoring

and exposure to pesticides in women laborers at maneadero valley in Baja California,

Mexico." International Journal of Applied and Natural Sciences 3.2 (2014): 89-96.

[16] Goodwin, J., Schoch, K., Shashi, V., Hooper, S. R., Morad, O., Zalevsky, M., Gothelf, D., & Campbell, L.

E. (2015). A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders.

Journal of Intellectual Disability Research: JIDR, 59(5), 474–486.

[17] Nahal MS, Axelsson ÅB, Imam A, Wigert H, Palestinian children's narratives about living with spina

bifida: Stigma, vulnerability, and social exclusion, Child Care Health Dev. 2019 Jan;45(1):54-62.

[18] Atoum, Maysoun, and Mahmoud Alhussami. "EXPLORATION OF THE MENTAL HEALTH NEEDS AND SERVICES FOR ADOLESCENTS: A QUALITATIVE STUDY." International Journal of Applied and Natural Sciences (IJANS) (7.3) Apr-May 2018; 73-88

[19] Cantwell-Bartl AM, Tibballs J Parenting a child at home with hypoplastic left heart syndrome: experiences of commitment, of stress, and of love Cardiol Young. 2017 Sep;27(7):1341-1348.

[20] Goodwin J, Swaab L, Campbell LE, She'll be able to live independently… as long as I'm around": The "lived" experience of parenting a child with 22q11.2 deletion syndrome in the transition to adulthood. J Appl Res Intellect Disabil, 2020 Jan 9.