Burden of Parents in Children with Disability at Sekolah Luar Biasa Negeri Cileunyi
Abstract
Children with disabilities are children who have limited whether physical, intellectual, mental, sensory, and multiple disability. Children with disabilities tend to have poor quality of life due to low ability fulfilled basic needs independently. Therefore, they need special treatment from their parents and that could be the reasons of burden for parents as primary caregiver. This research aims to find the general burden of parents in disabilities children who attended Sekolah Luar Biasa (SLB) Negeri Cileunyi. This is a quantitative descriptive research with cross sectional approach. The population in this research were 158 parents (father/mother) of children with disability. The sample in this research was obtained 67 people by using convenience sampling technique. The research used Zarit Burden Interview (ZBI) as research instrument. The data have been obtained and analyzed by univariate analysis. The results will be analyzed by using frequency distribution. The result showed that 46.3% means little or no burden, 37.3% means mild to moderate burden, 14,9% means moderate to severe burden and 1,5% means severe burden. The conclusions of this research show that almost half of respondents are in the category of little or no burden. However, there were still respondents who had a severe burden, this is due to parents and children characteristics, poor self-control and lack of social support. Nurses need to provide family center care such as counseling and providing health education to parents with disabilities children and optimize existing support groups.
References
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Wuyaningsih, E. W., & Larasati, D. I. 2018. Permasalahan Kesehatan Jiwa Pengasuh Anak Cerebral Palsy (CP) Di Komunitas Keluarga Cp (KCP): Self Reporting Questionaire-20 (SRQ-20). NurseLine Journal, 3(1), 30–37.
Yun, E. 2010. A research on the how caregiving burden for the frail elder effect on caregiver’s guilt : Comparing between home-care elderly and nursing home. J Walfare Aged, 47, 289–308.
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. 1980. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist, 20(6), 649–655. [Online]. http://gerontologist.oxfordjournals.org/. Diakses 5 Desember 2017
Baik, Y., & Choi, S. 2010. Research about stress of family caregiver who supports elderly for a long-term care. J Walfare Aged Inst, 49, 215–39.
Caqueo-Urízar, A., Miranda-Castillo, C., Giráldez, S. L., Maturana, S. L. L., Pérez, M. R., & Tapia, F. M. 2014. Burden of care in families of patients with schizoprhenia. Psicothema, 26(2), 235–243.
Ekadjati, E. 1995. Kebudayaan Sunda (Suatu Pendekatan Sejarah). Jakarta: Dunia PustakaJaya.
Ezzat, O., Bayoumi, M., & Samarkandi, O. A. 2017. Quality of Life and Subjective Burden on Family Caregiver of Children with Autism, 6(1), 33–39.
Friedman, M. ., Bowden, V. ., & Jones, E. . 2010. Buku Ajar Keperawatan Keluarga Riset, Teori dan Praktik. Jakarta: EGC.
GM, D., & Suresh, V. 2017. Prevalence of Caregiver Burden of Children with Disabilities. International Journal of Informative & Futuristic, 4(8), 7238–7249.
Goudie, A., Ranbom, L., Jamieson, B., & Havercamp, S. M. 2008. Caring for Children with Disabilities in Ohio: The Impact on Families A Health Care Policy Brief from the Ohio Developmental Disabilities Council. [Online]. https://grc.osu.edu/sites/default/files/inline-files/Caring for Children with Disabilities in Ohio The Impact on Families Brief.pdf. Diakses 4 April 2018.
Grant, M., Sun, V., Fujinami, R., Sidhu, R., Otis-Green, S., Juarez, G., … Ferrell, B. (2013). Family Caregiver Burden, Skills Preparedness, and Quality of Life in Non-Small-Cell Lung Cancer. Oncol Nurs Forum, 40(4), 337–346.
Joana Briggs Institute. 2012. Caregiver burden of terminally-ill adults in the home setting. Nursing & Health Sciences, (June), 435–437.
Kementerian Kesehatan RI. 2014. Penyandang Disabilitas Pada Anak. [Online]. http://www.depkes.go.id/download.php?file=download/pusdatin/infodatin/infodatin_disabilitas.pdf. Diakses 12 Februari 2018
Koentjaraningrat. 2002. Manusia dan Kebudayaan di Indonesia. Jakarta: Djembatan.
Lin, L. 2011. Factors Associated with Caregiving Burden and Maternal Pessimism in Mothers of Adolescents with an Autism Spectrum Disorder in Taiwan, 18(1997), 96–105.
Mawardah, U., Siswati, & Hidayati, F. 2012. Relationship Between Active Coping With Parenting Stress In Mother Of Mentally Retarded Child. Jurnal Psikologi, 1, 1–14.
Miodrag N, H. R. 2011. Chronic Stress and Its Implication on Health Disabilities Among Families of Children with Intellectual and Development Disabilities. International Review of Research in Developmental Disabilities, 41, 139–144.
Nam, S., Park, E., Nam, S., & Park, E. 2017. Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea. Journal of Mental Health, 0(0), 000.
National Alliance for Caregiving. 2010. Care for the family caregiver: A place to start. [Online]. http://www.caregiving.org/data/Emblem_CfC10_Final2.pdf. Diakses 3 Maret 2018.
Oh, H., & Lee, E. K. 2009. International Journal of Disability , Caregiver Burden and Social Support among Mothers Raising Children with Developmental Disabilities in South Korea, (February 2015), 37–41.
Prasasti, A. K. 2013. Gambaran Beban Caregiver pada Anak dengan Developmental Disabilities di Sekolah Luar Biasa ( SLB ) dengan Developmental Disabilities. Universitas Diponegoro. [Online]. http://eprints.undip.ac.id/39575/. Diakses 2 April 2018
Rahayuningsih, S. I., & Andriani, R. 2011. Gambaran Penyesuaian Diri Orang Tua Yang Memiliki Anak Berkebutuhan Khusus Di Banda Aceh. Idea Nursing Journal, 2 (3), 167–175.
Ratnawati, D. M., Husada, M. S., & Loebis, B. 2014. Relationship of Burden with Characteristic Sociodemographic Caregiver in Schizophrenic patients. Journal of Biology, Agriculture and Healthcare, 4(21), 56–59.
Savage, S., & Bailey, S. 2004. The Impact of Caregiving on Caregivers Mental Health : a Review of Literature. Australian Helath Review, 27, 394–401.
Scharf, R. J., Maphula, A., Pullen, P. C., Shrestha, R., Matherne, G. P., Roshan, R., & Koshy, B. 2017. Global Disability: Empowering Children of all Abilities. Pediatric Clinics of North America, 64(4), 769–784.
Sen, E., & Yurtsever, S. 2007. Difficulties Experienced by families with Disabled Children. Journal for Specialist in Pediatric Nursing, 12(4), 238–52.
Shyam, R., Kavitha, & Govil, D. 2014. Stress and Family Burden in Mothers of Children with Disabilities. International Journal of Interdisciplinary and Multidisciplinary Studies (IJIMS), 1(4), 152–159.
Sujito, E. 2017. Dinamika penerimaan orang tua yang memiliki anak berkebutuhan khusus. Universitas Muhammadiyah Surakarta. [Online]. http://eprints.ums.ac.id/58798/17/8. NASKAH PUBLIKASI.pdf. Diakses 3 Maret 2018
Sumekar, G. 2009. Anak Berkebutuhan Khusus Cara Membantu Mereka agar Berhasil dalam Pendidikan Inklusif. Padang: UNP Press.
UNICEF. 2013. The State of the World’s Children 2013. Children with Disabilities. UNICEF
Vlahovic, S. 2014. Health Related Quality of Life in Parents of Children with Speech and Hearing Impairment. International Journal of Pediatric Othorhinolaryngology, 78(2), 323-329
Waldman, A., O’Connor, E., & Tennekoon, G. 2007. Childhood multiple sclerosis: a review. Mental Retardation and Developmental Disabilities Research Reviews, 13(August), 313 – 320.
Wardhani, M. K., Rahayu, M. S., & Rosiana, D. 2008. Hubungan antara Personal Adjustment dengan Penerimaan terhadap Anak Berkebutuhan Khusus pada Ibu yang Memiliki Anak Berkebutuhan Khusus di RSUD X. In Seminar Nasional Penelitian dan Pengabdian Kepada Masyarakat (pp. 49–54). Bandung: UNISBA. [online]. http://proceeding.unisba.ac.id/index.php/sosial/article/view/204. Diakses 21 April 2018
WHO. 2011. World Report On Disability. Geneva: World Health Organization.
Wijesinghe, C. J., Cunningham, N., & Fonseka, P. 2015. Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka. Asia Pacific Journal of Public Health, 27(1).
Wuyaningsih, E. W., & Larasati, D. I. 2018. Permasalahan Kesehatan Jiwa Pengasuh Anak Cerebral Palsy (CP) Di Komunitas Keluarga Cp (KCP): Self Reporting Questionaire-20 (SRQ-20). NurseLine Journal, 3(1), 30–37.
Yun, E. 2010. A research on the how caregiving burden for the frail elder effect on caregiver’s guilt : Comparing between home-care elderly and nursing home. J Walfare Aged, 47, 289–308.
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. 1980. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist, 20(6), 649–655. [Online]. http://gerontologist.oxfordjournals.org/. Diakses 5 Desember 2017
Published
2019-07-04
How to Cite
DESRIYANI, Yusi; NURHIDAYAH, Ikeu; ADISTIE, Fanny.
Burden of Parents in Children with Disability at Sekolah Luar Biasa Negeri Cileunyi.
NurseLine Journal, [S.l.], v. 4, n. 1, p. 21-30, july 2019.
ISSN 2541-464X.
Available at: <https://jurnal.unej.ac.id/index.php/NLJ/article/view/8696>. Date accessed: 05 nov. 2024.
doi: https://doi.org/10.19184/nlj.v4i1.8696.
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Articles
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