Mothers as Caregivers of Children with Hydrocephalus: Struggles in Poverty and Compassion
Downloads
Hydrocephalus is a heterogeneous and complex condition in terms of its pathogenesis, symptoms and
psychological implications for the sufferers and their families. Having a child with hydrocephalus in the
midst of low economic conditions is a complex journey for a caregiver. This qualitative research with a
phenomenological approach focused on the subjective or psychological experience of mothers as the
primary caregiver for children with hydrocephalus. From a social foundation engaged in support for
hydrocephalus, two participants were recruited with low socioeconomic status and were able to
articulate their subjective experiences from the moment they discovered their child had hydrocephalus
to their daily involvement in providing care within economic constraints. Results showed that in order
to survive and accept reality, the two participants and their respective husband must experience not
only personal, but also communal or social emotional struggles So far, they had been able to maintain
care for their child with hydrocephalus owing to social support from fellow parents and family.
Amelasasih, P. (2018). Resiliensi Orangtua yang Mempunyai Anak Berkebutuhan Khusus. 11(2), 72–81. https://doi.org/10.30587/psikosains.v11i2.638
Apriyanto, Agung, R. P., & Sari, F. (2016). Hidrosefalus Pada Anak. JAMBI MEDICAL JOURNAL "Jurnal Kedokteran Dan Kesehatan,” 1(1), 61–67. https://doi.org/10.22437/jmj.v1i1.2690
Chaplin, J., Schweitzer, R., & Perkoulidis, S. (2005). Experiences of Prenatal Diagnosis of Spina Bifida or Hydrocephalus in Parents Who Decide to Continue with Their Pregnancy. Journal of Genetic Counseling, 14(2), 151–162. https://doi.org/10.1007/s10897-005-0488-9
Coffey, J. S. (2006). Parenting a child with chronic illness: A metasynthesis. Pediatric Nursing, 32(1), 51–59.
Dutta, O., Tan-Ho, G., Choo, P. Y., & Ho, A. H. Y. (2019). Lived experience of a child's chronic illness and death: A qualitative systematic review of the parental bereavement trajectory. Death Studies, 43(9), 547–561. https://doi.org/10.1080/07481187.2018.1503621
Ellya. (2016, March 13). Inovasi Anak Bangsa untuk Terapi Hidrosefalus dengan VP Shunt [News outlet]. Berita Jateng. http://beritajateng.net/inovasi-anak-bangsa-untuk-terapi-hidrosefalus-dengan-vp-shunt/
Erickson, K., Baron, I. S., & Fantie, B. D. (2001). Neuropsychological Functioning in Early Hydrocephalus: Review From a Developmental Perspective. Child Neuropsychology, 7(4), 199–229. https://doi.org/10.1076/chin.7.4.199.8737
Gürol, A., Erdem, Y., & Taşbaşi, F. Y. (2015). The Experienced Problems of Mothers Having Children with Hydrocephalus: A Qualitative Study. International Journal of Caring Sciences, 8(2), 435–442.
Hart, R., & McMahon, C. A. (2006). Mood state and psychological adjustment to pregnancy. Archives of Women's Mental Health, 9(6), 329–337. https://doi.org/10.1007/s00737-006-0141-0
Kahle, K. T., Kulkarni, A. V., Limbrick, D. D., & Warf, B. C. (2016). Hydrocephalus in children. The Lancet, 387(10020), 788–799. https://doi.org/10.1016/S0140-6736(15)60694-8
Kalyvas, A. V., Kalamatianos, T., Pantazi, M., Lianos, G. D., Stranjalis, G., & Alexiou, G. A. (2016). Maternal environmental risk factors for congenital hydrocephalus: A systematic review. Neurosurgical Focus, 41(5), E3. https://doi.org/10.3171/2016.8.FOCUS16280
Kandel, I., & Merrick, J. (2007). The Child With a Disability: Parental Acceptance, Management and Coping. The Scientific World JOURNAL, 7, 1799–1809. https://doi.org/10.1100/tsw.2007.265
Kirk, E. A., White, C., & Freeman, S. (1992). Effects of a Nursing Education Intervention on Parentsʼ Knowledge of Hydrocephalus and Shunts: Journal of Neuroscience Nursing, 24(2), 99–103. https://doi.org/10.1097/01376517-199204000-00009
Kulkarni, A. V. (2007). Assessment of mother and father concern in childhood hydrocephalus. Quality of Life Research, 16(9), 1501–1509. https://doi.org/10.1007/s11136-007-9258-5
Kulkarni, A. V., Cochrane, D. D., McNeely, P. D., & Shams, I. (2008). Medical, Social, and Economic Factors Associated with Health-Related Quality of Life in Canadian Children with Hydrocephalus. The Journal of Pediatrics, 153(5), 689–695. https://doi.org/10.1016/j.jpeds.2008.04.068
Langer, M., & Ringler, M. (1989). Prospective Counselling after Prenatal Diagnosis of Fetal Malformations: Interventions and Parental Reactlons. Acta Obstetricia et Gynecologica Scandinavica, 68(4), 323–329. https://doi.org/10.3109/00016348909028667
Larson, E. (1998). Reframing the meaning of disability to families: The embrace of paradox. Social Science & Medicine, 47(7), 865–875. https://doi.org/10.1016/S0277-9536(98)00113-0
Maharani, W. O., & Margaretha. (2014). Stress dan Coping Stress Ibu yang Memiliki Anak dengan Kelainan Hydrocephalus. Jurnal Psikologi Klinis dan Kesehatan Mental, 3(2), 67–71.
Nelson, A. M. (2002). A Metasynthesis: Mothering Other-than-Normal Children. Qualitative Health Research, 12(4), 515–530. https://doi.org/10.1177/104973202129120043
Olabisi, O. O., Nasiru, I. J., & Bello, S. B. (2018). Management of Childhood Hydrocephalus in Our Centre: Parents' Knowledge, Experiences, and Expectations. GLOBAL JOURNAL FOR RESEARCH ANALYSIS, 7(4), 464–465. https://doi.org/10.36106/gjra
Oliveira, D. M. da P., Pereira, C. U., & Freitas, Z. M. da P. (2010). Conhecimento do cuidador de crianças com hidrocefalia (Knowledge of caregivers of children with hydrocephalus). Revista Brasileira de Enfermagem, 63(5), 782–785. https://doi.org/10.1590/S0034-71672010000500014
Rahmayani, D. D., Gunawan, P. I., & Utomo, B. (2017). Profil Klinis dan Faktor Risiko Hidrosefalus Komunikans dan Non Komunikans pada Anak di RSUD dr. Soetomo. Sari Pediatri, 19(1), 25. https://doi.org/10.14238/sp19.1.2017.25-31
Titapant, V., & Chuenwattana, P. (2015). Psychological effects of fetal diagnoses of non-lethal congenital anomalies on the experience of pregnant women during the remainder of their pregnancy: Effects of fetal anomalies detection. Journal of Obstetrics and Gynaecology Research, 41(1), 77–83. https://doi.org/10.1111/jog.12504
Tully, H. M., & Dobyns, W. B. (2014). Infantile hydrocephalus: A review of epidemiology, classification and causes. European Journal of Medical Genetics, 57(8), 359–368. https://doi.org/10.1016/j.ejmg.2014.06.002
Vieira, K. A., & Miranda, T. (2014). STRESS IN CAREGIVERS OF CHILDREN WITH HYDROCEPHALUS (O ESTRESSE EM CUIDADORES DE CRIANÇAS PORTADORAS DE HIDROCEFALIA). 10.
Vijesh, P. V., & Sukumaran, P. S. (2007). Stress among Mothers of Children with Cerebral Palsy Attending Special Needs. Asia Pasific Disability Rehabilitation Journal, 18(1), 76–92.
Willig, C. (2008). Introducing qualitative research in psychology: Adventures in theory and method (2nd ed). Open University Press.
Wirdhana, S. A. (2017). Proses Penerimaan dan Pengasuhan Orang Tua untuk Mempertahankan Afeksi Sayang pada Anak Hydrocephalus [Undergraduate Thesis]. Universitas Diponegoro.
Copyright (c) 2022 Bio Adha Adiputra, Aloysius Soesilo
This work is licensed under a Creative Commons Attribution 4.0 International License.
INSAN Jurnal Psikologi dan Kesehatan Mental is a periodical journal publisher with Open Access principles and Creative Commons Attribution 4.0 International (CC-BY 4.0); therefore, the copyright remains with the author.
With this license, anyone has the right to use any information and re-distribute the content of this journal for any purposes, including commercial purposes. This can be done as long as the person satisfies the following two conditions; (1) the person is obliged to provide a proper attribution by citing the original source and indicate any changes they have made; and (2) the person is strictly not allowed to make any restrictions, both legal and technological limitations, that restrict others to have the same level of distribution rights.
The manuscript copyright remains with the author; therefore, INSAN JPKM do not and will not request for copyright transfer on all published manuscripts in INSAN JPKM.
