Experience Of Mothers With Chronically Disabled Children In Remote Areas

  • Erna Setijaningrum
  • Siti Mas’udah
Palabras clave: experience of mothers, children, disabilities, remote areas, over- coming problems


This study aimed to find out how the experience of the mothers with chronical- ly disabled children in remote areas finding ways to overcome their problems. This study employed a qualitative method. The results of this study showed that mothers with chronically disabled children felt stressed, were considered a family disgrace, and experienced discrimination from the community. They tried to find a way to solve their problems by actively participating in the rou- tine activities carried out by their communities. They received a lot of benefits from the activities. They felt more confident, received a lot of information re- garding the care of children with chronic disabilities, were optimistic, empow- ered, patient and accepted the situation.

Biografía del autor/a

Erna Setijaningrum
Department of Public Administration, Faculty of Social and Political Scienc- es, Universitas Airlangga, Surabaya, Indonesia
Siti Mas’udah
Department of Sociology, Faculty of Social and Political Sciences, Universi- tas Airlangga, Surabaya, Indonesia


ADAMS, E. F., LEE, A. J., PRITCHARD, C. W., & WHITE, R. J. 2009. “What Stop Us from Healing the Healers: A Survey of Help-Seek- ing Behaviour, Stigmatisation and Depression within the Medical Profession”. International Journal of Social Psychiatry. Vol. 56, No 4: 359-370.

ANGGORODI, R. 2009. “Dukun Bayi dalam Persalinan oleh Mas- yarakat Indonesia”. Makara. Vol. 13, No 1: 9-14.

BUMIN, G., GÜNAL, A., & TÜKEL, S. 2008. “Anxiety, depression and quality of life in mothers of disabled children”. S.D.Ü. Týp Fakul- tesi Dergisi. Vol. 15, No 1: 6-11.

BRESLAU, N., STARUCH, K., & MORTIMER, E. A. 1982. “Psycho- logical Distress in Mothers of Disabled Children”. Am J Dis Child. Vol. 136, No 8: 682-686.

CHASANAH, S. U. 2015. “Peran Petugas Kesehatan Masyarakat da- lam Upaya Penurunan Angka Kematian Ibu Pasca MDGs 2015”. Jur- nal Kesehatan Masyarakat Andalas. Vol. 9, No 2: 73-79.

DDYKENS, E. M., FISHER, M. H., TAYLOR, J. L., LAMBERT, W., & MIODRAG, N. 2014. “Reducing distress in Mother of Children with autism and other disabilities: A randomized trial”. Pediatrics. Vol. 134, No 2: 454-463.

DEW, A., BULKELEY, K., VEITCH, C., BUNDY, A., GALLEGO, G., LINCOLN, M., BRENTNALL, J., & GRIFFITHS, S. 2012. “Address- ing the barriers to accessing therapy services in rural and terpencil areas”. Disability and Rehabilitation. Vol. 35, No 18: 1564–1570.

DUMAS, J. E., WOLF, L. C., FISMAN, S. N., & CULLIGAN, A. 2015. “Parenting Stress, Child Behavior Problems, and Dysphoria in Par- ents of Children with Autism, Down Syndrome, Behavior Disorders, and Normal Development. Exceptionality”. A Special Education Journal. Vol. 22, No 2: 97-110.

EINFELD, S.L., STANCLIFFE, R.J., GRAY, K.M., SOFRONOFF, K., RICE, L., EMERSON, E., & YASAMY, M.T. 2012. “Interventions Provided by Parents for Children with Intellectual Disabilities in Low and Middle Income Countries”. Journal of Applied Research in Intellectual Disabilities. Vol. 25, No 2: 135-142.

EITHAN, M.H., AMAN, H., & ROBERT, A. 2010. Mood Problems of Mothers with disabled childern in Saudi Arabia: A Preliminary Prospective Study. Saudi Medical Journal. Vol. 31, No 10: 1161-1165. ELFORD, L. M. 2015. “Mothers’ Lived Experience of Parenting an Infant/Young Child with Special Needs in a Rural Context”. Electron- ic Thesis and Dissertation Repository. https://ir.lib.uwo.ca/etd/2688 ERGUN, S., & ERTEM, G. 2012. “Difficulties of mothers living with mentally disabled children”. Journal of the Pakistan Mediacal Asso- ciation. Vol. 62, No 8: 776-780.

FAHMY, M.I. 2017. “Hubungan antara Parenting Self Efficacy den- gan Psychological Well Being Ibu yang Memiliki Anak dengan Dis- abilitas Intelektual”. Thesis: Universitas Muhammadiyah Malang. Indonesia.

FRANKENBERG, E. 1995. “The Effects of Access to Health Care on Infant Mortality in Indonesia”. Health Transition Review. Vol. 5, No 2: 143-163.

GIBSON, C.H. 1995. “The Process of Empowerment in Mothers of Chronically Ill Children”. Journal of Advanced Nursing. Vol. 21, No 6: 1201-1210.

GIBSON, B.E., TEACHMAN, G., WRIGHT, V., FEHLINGS, D., YOUNG, N.L., & MCKEEVER, P. 2011. “Children’s and Parent’s Belief regarding the Value of Walking: Rehabilitation Implications for Children with Cerebral Palsy”. Child: Care, Health, and Develop- ment. Vol. 38, No 1: 61-69.

GINTING, F. 2014. “Perepsi Pasien Kanker Payudara terhadap Pen- gobatan Alternatif”. Thesis: Universitas Gadjah Mada.Yogjakarta.Indonesia.

GRIFFITH, G. M., HASTINGS, R.P., PETALAS, M.A., & LLOYD, T.J. 2014. “Mothers’ expressed emotion towards children with au- tism spectrum disorder and their siblings”. Journal of Intellectual Disability Research. Vol. 59, No 6: 580-587.

HANDIAN, F.I., WIDJAJANTO, P.H., & SUMARNI. (2017). “Moti- vasi, Hambatan dan Strategi Orangtua Keluarga Miskin dalam Mer- awat Anak dengan Leukemia Limfoblastik Akut (LLA)”. Jurnal Care. Vol. 5, No 1: 77-91.

HEITZMAN-POWELL, L.S., BUZHARDt, J., RUSINKO, L.C., & MILLER, T.M. 2013. “Formative Evaluation of an ABA Outreach Training Program for Parents of Children With Autism in Terpencil Areas”. Focus on Autism and Other Developmental Disabilities. Vol. 29, No 1: 23-38.

HOFFMAN, C.D., SWEENEY, D.P., HODGE, D., LOPEZ-WAG- NER, M.C., & LOONEY, L. 2009. “Parenting Stress and Closeness: Mothers of Typically Developing Children and Mothers of Children with Autism”. Focus on Autism and Other Developmental Disabili- ties. Vol. 24, No 3: 178-187.

ILIAS, K., LIAW, J.H.J., CORNISH, K., PARK, M.S.A., & GOLDEN, K.J. 2016. “Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study.” Jour- nal of Intellectual & Developmental Disability. Vol. 42, No 1: 74–89. JAFFAR, S., Leach, A., Greenwood, A.M., Jepson, A., Muller, O., Ota, M.O.C., Bojang, K., Obaro, S., & Greenwood, B.M. 1997. “Changes in Pattern of Infant and Childhood Mortality in Upper River Divi- sion, The Gambia, from 1989 to 1993”. Tropical Medicine and Inter- national Health. Vol. 2, No 1: 28-37.

JUTTING, J.P. (2014). “Do Community-based Health Insurance Schemes Improve Poor People’s Access to Health Care? Evidence from Rural Senegal”. World Development. Vol. 32, No 2: 273-288. KARINA, A.N. & WARSITO, B.E. 2012. “Pengetahuan Ibu tentang Imunisasi Dasar Balita”. Jurnal Nursing Studies. Vol. 1, No 1: 30-35. LEE, K.Y., HAN, J.W., & LEE, J.S. 2007. “Kawasaki Disease May Be A Hyperimunne Reaction of Genetically Susceptible Children to Var- iants of Normal Environmental Flora”. Medical Hypotheses. Vol. 69,No 3: 642-651.

LIU, Y., HSIAO, W.C., & EGGLESTON, K. 1999. “Equity in Health and Health Care: The Chinese Experience”. Social Science and Med- icine. Vol. 49, No 1: 1349-1356.

LUKSIC, M., JAVORNISKY, G., DIMARIO, F. J., & MD, J. 2000. “As- sessment of Stress in Mothers of Children With Severe Breath-Hold- ing Spells”. Pediatrics. Vol. 106, No 1: 1–5.

MARETTIH, A.K.E. & WAHDANI, S.R. 2017. “Melatih Kesabaran dan Wujud Rasa Syukur sebagai Makna Coping bagi Orangtua yang Memiliki Anak Autis”. Marwah: Jurnal Perempuan, Agama, dan Jender. Vol. 16, No 1: 13-31.

MCCONKEY, R. TUESDALE-KENNEDY, M., CHANG, M.Y., JAR- RAH, S., & SHUKRI, R. 2006. “The Impact on Mothers of Bringing up a Child with Intellectual Disabilities: A Cross-Cultural Study.” In- ternatinal Journal Nurse Studi. Vol. 45, No 1: 65-74.

MEGASARI, I., & KRISTIANA, I.F. 2016. “Hubungan antara Duku- ngan Sosial Suami dengan Penerimaan Diri pada Ibu yang Memili- ki Anak Down Syndrom di Semarang”. Jurnal Empati. Vol. 5, No 4: 653-659.

MILLER, A. C., GORDON, R. M., DANIELE, R. J., & DILLER, L. 1992. “Stress, Appraisal, and Coping in Mothers of Disabled and Nondisabled Children”. Journal of Pediatric Psychology. Vol. 17, No 5: 587–605.

MONSEN, R. B. 1999. “Mothers’ experiences of living worried when parenting children with spina bifida”. Journal of Pediatric Nursing. Vol. 14, No 3: 157–163.

NORA, A.C. & WIDURI, E.L. 2011. “Komunikasi pada Ibu dan Anak dengan Depresi pada Remaja”. Humanitas. Vol. 8, No 1: 45-61. OLSSON, M. B., & WANG, P. H. 2008. “Depression in mothers and fathers of children with intellectual disability”. Journal of Intellectual Disability Research. Vol. 45, No 6: 535-543.

PASALLI, C.R., POEKOEL, V.C., & NAJOAN, X. 2016. “Sistem Pakar Diagnosa Penyakit Anak Menggunakan Metode Forward Chaining Berbasis Model”. E-Journal Teknik Informatika. Vol. 17, No 1: 1-6. PORTER, N., & LOVELAND, K.A. 2018. “An Integrative Review of Parenting Stress in Mothers of Children with Autism in Japan”. International Journal of Disability, Development and Education. Vol. 66, No 3: 249-272.

SISTIARANI, C., GAMELIA, E., & SARI, D.U.P. 2014. “Fungsi Pe- manfaatan Buku KIA terhadap Pengetahuan Kesehatan Ibu dan Anak pada Ibu”. Jurnal Kesehatan Masyarakat Nasional. Vol. 8, No 8: 353-358.

SOHAIL, M.M., MAHMOOD, Q.K., SHER, F., SAUD, M., MAS’UDAH, S., & IDA, R. 2019. “Coping through Religiosity, Spirit- uality, and Social Support among Muslim Chronic Hepatitis Patient”. Journal of Religion and Health. DOI: 10.1007/s10943-019-00909-4 SOUSA, A. C. 2011. “From Refrigerator Mothers to Warrior-Heroes: The Cultural Identity Transformation of Mothers Raising Children with Intellectual Disabilities”. Symbolic Interaction. Vol. 34, No 2: 220–243.

SRINATH REDDY, K., SHAH, B., VARGHESE, C., & RAMADOSS, A. 2005. “Responding to the Threat of Chronic Disease in India”. Lancet. Vol. 366, No 9498: 1744-1749.

STANLEY, S.L.G. 2015. “The Advocacy Efforts of African American Mothers of Children with Disabilities in Rural Special Education: Considerations for School Professionals”. Rural Special Education Quarterly. Vol. 34, No 4: 3–17.

SUHARMIATI, LAKSONO, A.G., & ASTUTI, W.D. 2013. “Review Kebijakan tentang Pelayanan Kesehatan Puskesmas di Daerah Ter- pencil Perbatasan”. Buletin Penelitian Sistem Kesehatan. Vol. 16, No 2: 109-116.

SURYAWATI, C. 2005. “Memahami Kemiskinan secara Multidi- mensional”. Jurnal Managemen Pelayanan Kesehatan. Vol. 8, No 3: 121-129.

SUYANTO, B. 2001.“Kemiskinan dan Pemberdayaan Masyarakat Miskin”. Masyarakat, Kebudayaan, dan Politik. Vol. 14, No 4: 25-42. SYAHZA, A., & SUARMAN. 2013. “Strategi Pengembangan Daerah Tertinggal dalam Upaya Percepatan Pembangunan Ekonomi Pedes- aan”. Jurnal Ekonomi Pembangunan. Vol. 14, No 1: 126-139. TRIRATNAWATI, A. 2010. “Pengobatan Tradisional, Upaya Me- maksimalkan Biaya Kesehatan Masyarakat Desa di Jawa”. Jurnal Manajemen Pelayanan Kesehatan. Vol. 13, No 2: 69-73.

WALLANDER, J. L., & VENTERS, T. L. 1995. Perceived Role Restric- tion and Adjustment of Mothers of Children with Chronic Physical Disability. Journal of Pediatric Psychology. Vol. 20, No 5: 619-632.

Cómo citar
Setijaningrum, E., & Mas’udah, S. (2019). Experience Of Mothers With Chronically Disabled Children In Remote Areas. Opción, 35, 850-873. Recuperado a partir de https://produccioncientificaluz.org/index.php/opcion/article/view/30851