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Kualitas Hidup Anak dengan Retardasi Mental
DOI:
https://doi.org/10.31004/obsesi.v6i4.2086Keywords:
anak, disabilitas intelektual, kualitas hidup, retardasi mentalAbstract
Anak retardasi mental merupakan penyandang disabilitas cukup tinggi di Indonesia. Anak mengalami penurunan intelektual, gangguan adaptasi sosial, keterbatasan aktifitas dan partisipasi. Penelitian bertujuan mengidentifikasi kualitas hidup anak retardasi mental di SLB C Sumbersari Bandung. Penelitian menggunakan rancangan deskriptif kuantitatif. Populasi terdiri dari orang tua atau pemberi asuhan utama anak retardasi mental. Pengambilan sampel menggunakan total sampling sehingga mendapatkan 81 responden. Alat ukur menggunakan PedsQLTM 4.0 Proxy Report versi Bahasa Indonesia, meliputi penilaian fungsi fisik, emosional, sosial, dan sekolah. Data dianalisis menggunakan The PedsQLTM Scoring Algorithm. Hasil penelitian menunjukkan 55,6% anak memiliki kualitas hidup buruk pada setiap fungsi kualitas hidup dan 44,4% anak memiliki kualitas hidup baik. Keterbatasan yang dimiliki anak menghambat anak mencapai kesejahteraan dan kualitas hidup yang baik. Sehingga dibutuhkan berbagai upaya untuk meningkatkan kualitas hidup anak, diantaranya dengan program olahraga terstruktur, melatih anak mengendalikan marah, melatih anak berinteraksi sosial, dan menyusun kurikulum serta program kesehatan sesuai kebutuhan anak
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References
Ageranioti-bélanger, S., Brunet, S., Anjou, G. D., & Tellier, G. (2012). Behaviour disorders in children with an intellectual disability. Pediatric Child Health, 17(2), 84-88.
https://doi.org/10.1093/pch/17.2.84
Ahn, B. C., Engelhardt, K., & Joung, H. (2010). Income-related health inequalities in Korea. Asia-Pacific Journal of Public Health, 22(1), 32-41. https://doi.org/10.1177/1010539509351184
Arfandi, Z., Susilo, E., & Widodo, G. G. (2014). Hubungan antara dukungan sosial keluarga dengan kemampuan perawatan diri pada anak retardasi mental di slb negeri ungaran, 26.
Association, A. P. (2005). Diagnostic and Statistical Manual of Mental Disorder (4th ed.). Washington, DC.
Bartlo, P., & Klein, P. J. (2011). Physical Activity Benefits and Needs in Adults With Intellectual Disabilities : Systematic Review of the Literature, 116(3), 220-232. https://doi.org/10.1352/1944-7558-116.3.220
Basgul, S. S., Uneri, O. S., & Cakın-memik, N. (2011). Parents ' perception of the quality of life of children with intellectual disabilities. The Turkish Journal of Pediatric, 53, 541-546.
Billstedt, E., Gillberg, I. C., & Gillberg, C. (2007). Autism in adults : symptom patterns and early childhood predictors . Use of the DISCO in a community sample followed from childhood. Journal of Child Psychology and Psychiatry, 48(11), 1102-1110. https://doi.org/10.1111/j.1469-7610.2007.01774.x
Bishop-Fitzpatrick, L., Mazefsky, C. A., Minshew, N. J., & Eack, S. M. (2015). The relationship between stress and social functioning in adults with autism spectrum disorder and without intellectual disability. Autism Research, 8(2), 164-173. https://doi.org/10.1002/aur.1433
Bulan, S. (2009). Faktor yang Berhubungan dengan Kualitas Hidup Anak Thalassemia Beta Mayor.
Carmeli, E., & Imam, B. (2014). Health promotion and disease prevention strategies in older adults with intellectual and developmental disabilities. Forintiers and Public Health, 2(31), 167. https://doi.org/10.3389/fpubh.2014.00031
Center for Disease Control and Prevention. (2009). HRQOL Concepts. Retrieved February 2, 2019, from https://www.cdc.gov/hrqol/concept.htm
Chen, T., & Li, L. (2009). Influence of health-related quality of life on health service utilization in addition to socio-demographic and morbidity variables among primary care patients in China. International Journal of Public Health, 54(5), 325-332. https://doi.org/10.1007/s00038-009-0057-3
Dewi, N., & Mu'in, M. (2015). Kualitas Hidup Orang tua dengan Anak Developmental Disability. Keperawatan Komunitas, 3(1), 37-42. Retrieved from eprints.undip.ac.id/47396/
Elbasan, B., Duzgun, I., & Oskay, D. (2013). Is There any Difference in Health Related Quality of Life, Self Care and Social Function in Children with Different Disabilities Living in Turkey? Iranian Journal of Pediatrics, 23(3), 281-288. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/23795250
Emerson, E., Hatton, C., Baines, S., & Robertson, J. (2016). The physical health of British adults with intellectual disability : cross sectional study. International Journal for Equity in Health, 15-17. https://doi.org/10.1186/s12939-016-0296-x
Eriksson, L., Welander, J., & Granlund, M. (2007). Participation in everyday school activities for children with and without disabilities. Journal of Developmental and Physical Disabilities, 19(5), 485-502. https://doi.org/10.1007/s10882-007-9065-5
Falkmer, M., Granlund, M., & Nilholm, C. (2012). From my perspective - Perceived participation in mainstream schools in students with autism spectrum conditions. Development Neurorehabilitation, 15(June), 191-201. https://doi.org/10.3109/17518423.2012.671382
Foley, K., Dyke, P., Girdler, S., Bourke, J., & Leonard, H. (2012). Young adults with intellectual disability transitioning from school to post-school : A literature review framed within the ICF. Disability & Rehabilitation, 34(January), 1747-1764. https://doi.org/10.3109/09638288.2012.660603
Frey, G. C. (2004). Comparison of Physical Activity Levels Between Adults With and Without Mental Retardation. Journal of Physical Activity and Health, 1, 235-245.
https://doi.org/10.1123/jpah.1.3.235
Ghane, G., Farahani, M. A., Seyedfatemi, N., & Haghani, H. (2017). The effect of supportive educative program on the quality of life in family caregivers of hemodialysis patients. Journal of Education and Health Promotion, 1-9. https://doi.org/10.4103/jehp.jehp_78_16
Ghosh, D., & Datta K, T. (2012). Functional improvement and social participation through sports activity for children with mental retardation: a field study from a developing nation. Prosthetics and Orthitics International, 36(3), 339-347. https://doi.org/10.1177/0309364612451206
Goleman, D. (2006). Social intelligence : the new science of human relationships. Bantam Books. Retrieved from https://books.google.co.id/books?id=mEKCDGXHVmMC&hl=id
Guralnick, M. J., Connor, R. T., & Johnson, L. C. (2009). Home-Based Peer Social Networks of Young Children With Down Syndrome : A Developmental Perspective. AJIDD, 114(5), 340-355. https://doi.org/10.1352/1944-7558-114.5.340
Hartley, S. L., & Maclean, W. E. (2005). Perceptions of Stress and Coping Strategies Among Adults With Mild Mental Retardation : Insight Into Psychological Distress. American Journal on Mental Retardation, 110(4), 285-297.
https://doi.org/10.1352/0895-8017(2005)110[285:POSACS]2.0.CO;2
Howie, E. K., S, B., Barnes, T. L., H, M. P., Mcdermott, S., Ph, D., … D, M. (2012). Availability of physical activity resources in the environment for adults with intellectual disabilities. Disability and Health Journal, 5(1), 41-48. https://doi.org/10.1016/j.dhjo.2011.09.004
Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212-229.
https://doi.org/10.1111/j.1469-7610.2004.00215.x
Jha, P., Nugent, R., Verguet, S., Bloom, D., & Hum, R. (2012). Chronic disease. Global Problems Smart Solutions: Costs and Benefits, 16(1), 137-169. https://doi.org/10.1017/CBO9781139600484.005
Kaplan, S., & Berman, M. G. (2013). Perspectives on Psychological Science. Association for Phsychological Science, 5(1), 43-57. https://doi.org/10.1177/1745691609356784
Kavale, K. A., & Mostert, M. P. (2014). Social Skills Intervention for Learning Disabilities Individual With Learning Disabilities. Sage Publications, 27(1), 31-43.
https://doi.org/10.2307/1593630
Kemenkes. (2009). Anak dengan tunagrahita perlu pendekatan khusus, 1-2. Retrieved from http://www.depkes.go.id/pdf.php?id=460
Khresna Dewi, V. (2017). Hubungan Pola Asuh Orangtua dengan Tingkat Kemandirian Anak Retardasi Mental Ringan, 21-25.
King, M., Shields, N., Imms, C., Black, M., & Ardern, C. (2013). Research in Developmental Disabilities Participation of children with intellectual disability compared with typically developing children. Research in Developmental Disabilities, 34(5), 1854-1862. https://doi.org/10.1016/j.ridd.2013.02.029
Kocic, M., Bojic, I., & Aleksandrovic, M. (2017). Physical Activity in Adolescent with Mental Retardation : Is Adapted Basketball Training Adequate Stimulus to Improve Cardiorespiratory Fitness and Sport Skills Performance ? Acta Facultatis Medicae Naissensis, 34(2), 159-168. https://doi.org/10.1515/afmnai-2017-0018
Kodang, R. (2015). Pola Asuh Orang tua terhadap Anak Tuna Grahita di Nanga Bulik Kabupaten Lamandau Provinsi Kalimantan Tengah. Jurnal Pendidikan Dasar, 6(1), 79. https://doi.org/10.21009/JPD.061.08
Kose, S., Erermis, S., Ozturk, O., Ozbaran, B., & Demiral, N. (2013). Research in Autism Spectrum Disorders Health Related Quality of Life in children with Autism Spectrum Disorders : The clinical and demographic related factors in Turkey. Research in Autism Spectrum Disorders, 7(2), 213-220. https://doi.org/10.1016/j.rasd.2012.09.009
Kuhlthau, K., Orlich, F., Hall, T. A., Sikora, D., Kovacs, E. A., Delahaye, J., & Clemons, T. E. (2010). Health-Related Quality of Life in Children with Autism Spectrum Disorders : Results from the Autism Treatment Network. Journal of Autism Disorder, 40, 721-729. https://doi.org/10.1007/s10803-009-0921-2
Levine, T. P., Sheinkopf, S. J., Pescosolido, M., Rodino, A., Elia, G., & Lester, B. (2011). Physiologic Arousal to Social Stress in Children with Autism Spectrum Disorders: A Pilot Study. https://doi.org/10.1016/j.rasd.2011.04.003
Lombardi, M., Croce, L., Claes, C., Vandevelde, S., & Robert, L. (2016). Factors predicting quality of life for people with intellectual disability : Results from the ANFFAS study in Italy, 8250(February 2017). https://doi.org/10.3109/13668250.2016.1223281
Mapi Trust Organization. (2018). Scaling and Scoring of The Pedriatic Quality of Life Inventory TM (PedsQLTM), (May 2017).
Matheson, E. (2005). Emotional Understanding in Aggressive and Nonaggressive Individuals With Mild or Moderate Mental Retardation. American Journal on Mental Retardation, 110(1), 57-67. https://doi.org/10.1352/0895-8017(2005)110<57:EUIAAN>2.0.CO;2
Murphy, K., Cooney, A., Shea, E. O., & Casey, D. (2009). Determinants of quality of life for older people living with a disability in the community. Journal of Advanced Nursing, 65(3), 606-615. https://doi.org/10.1111/j.1365-2648.2008.04929.x
Muttaqin, A. (2008). Pengantar Asuhan Keperawatan dengan Klien Gangguan Sitem Persyarafan. Jakarta: Salemba Medika.
Nani, D., Ekowati, W., & Permana, R. (2010). Pengaruh Dukungan Sosial terhadap Kemampuan Sosialisasi Anak Berkebutuhan Khusus.
Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder. Pediatrics.Aappublications.Org, 1042-1049. https://doi.org/10.1542/peds.2011-2864
Natasha Marrus, L. H. (2018). Intellectual Disability and Language Disorder. HHS Public Access, 26(3), 539-554. https://doi.org/10.1016/j.chc.2017.03.001
Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self-determination , social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51(11), 850-865. https://doi.org/10.1111/j.1365-2788.2006.00939.x
Proctor, D. N., Singh, M. A. F., Minson, C. T., Nigg, C. R., Salem, G. J., & Skinner, J. S. (2009). Exercise and Physical Activity for Older Adults. American College of Sport Medicine, 1510-1530. https://doi.org/10.1249/MSS.0b013e3181a0c95c
Reichow, B., Servili, C., Yasamy, M. T., Barbui, C., & Saxena, S. (2013). Non-Specialist Psychosocial Interventions for Children and Adolescents with Intellectual Disability or Lower-Functioning Autism Spectrum Disorders : A Systematic Review. PLOS Medicine, 10(12). https://doi.org/10.1371/journal.pmed.1001572
Renty, J. O. (2006). Quality of life in high-functioning adults with. Sage Publications, 10(5), 511-524. https://doi.org/10.1177/1362361306066604
Riskesdas. (2018). HASIL UTAMA RISKESDAS 2018. Retrieved from http://www.depkes.go.id/resources/download/info-terkini/hasil-riskesdas-2018.pdf
Rojahn, J. (2014). Emotion Specificity in Mental Retardation. American Journal on Mental RetardationMental Retardation, 99(5), 477-486.
Romero, M., Vivas-Consuelo, D., & Alvis-Guzman, N. (2013). Is Health Related Quality of Life (HRQoL) a valid indicator for health systems evaluation? SpringerPlus, 2(1), 1-7. https://doi.org/10.1186/2193-1801-2-664
Rubbyana, U. (2012). Hubungan antara Strategi Koping dengan Kualitas Hidup pada Penderita Skizofrenia Remisi Simptom. Jurnal Psikologi Klinis Dan Kesehatan Mental, 1(02), 59-66.
Sanavi, F. S., Baghbanian, A., Shovey, M. F., & Ansari-moghaddam, A. (2013). A study on family communication pattern and parenting styles with quality of life in adolescent. Undefined. Retrieved from https://www.semanticscholar.org/paper/A-study-on-family-communication-pattern-and-styles-Sanavi-Baghbanian/7ac1fdf813673092b0d0ce0402b0af6b3963a6be
Sari, O. A., & Santy, W. H. (2017). Hubungan Dukungan Keluarga dengan Tingkat Kemandirian Personal Hygiene Anak Tunagrahita di SLB Tunas Mulya. Jurnal Ilmiah Kesehatan, 10(2), 164-171. https://doi.org/10.33086/jhs.v10i2.126
Shattuck, P. T., Mailick, Æ. M., Greenberg, J. S., & Orsmond, Æ. G. I. (2007). Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder. J Autism Dev Disord, 37, 1735-1747. https://doi.org/10.1007/s10803-006-0307-7
Shields, N., Taylor, N. F., Dodd, K. J., N, A. S., Nf, T., & Ky, D. (2008). Effects of a Community-Based Progressive Resistance Training Program on Muscle Performance and Physical Function in Adults With Down Syndrome : A Randomized Controlled Trial, 89(July), 1215-1220. https://doi.org/10.1016/j.apmr.2007.11.056
Sibitz, I., Amering, M., Unger, A., Seyringer, M. E., Bachmann, A., Schrank, B., … Woppmann, A. (2011). The impact of the social network, stigma and empowerment on the quality of life in patients with schizophrenia. European Psychiatry, 26(1), 28-33. https://doi.org/10.1016/j.eurpsy.2010.08.010
Silva, D., Cohen, A., Eaton, J., Radtke, B., George, C., Victor Manuel, B., … Patel, V. (2011). Three models of community mental health services In low-income countries. https://doi.org/10.1186/1752-4458-5-3
Siperstein, G. N., Glick, G. C., & Parker, R. C. (2009). Social Inclusion of Children With Intellectual Disabilities in a Recreational Setting. Intellectual and Developmental Disabilities, 47(2), 97-107. https://doi.org/10.1352/1934-9556-47.2.97
Solmi, F., Melnychuk, M., & Morris, S. (2018). The cost of mental and physical health disability in childhood and adolescence to families in the UK : findings from a repeated cross-sectional survey using propensity score matching. BMJ, 1-10. https://doi.org/10.1136/bmjopen-2017-018729
St, M. C., Pickles, A., Durkin, K., & Conti-ramsden, G. (2011). A longitudinal study of behavioral , emotional and social difficulties in individuals with a history of specific language impairment ( SLI ). Journal of Communication Disorders, 44(2), 186-199. https://doi.org/10.1016/j.jcomdis.2010.09.004
Stanish, H. I., Temple, V. A., & Frey, G. C. (2006). Health-promoting physical activity of adults with mental retardation. Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 13-21. https://doi.org/10.1002/mrdd.20090
Sumiatin, T. (2014). Stimulasi pengajaran dengan media gambar terhadap prestasi belajar anak retardasi mental. Keperawatan, 5(1), 92-107.
SUPAS. (2015). Profil Penduduk Indonesia Hasil SUPAS 2015. Retrieved February 1, 2019, from https://www.bps.go.id/publication.
Tasse, M. J., Luckasson, R., & Schalock, R. L. (2016). The Relation Between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability. Intellectual and Developmental Disabilities, 54(6), 381-390. https://doi.org/10.1352/1934-9556-54.6.381
Temple, V. A. (2007). Barriers , enjoyment , and preference for physical activity among adults with intellectual disability. International Journal of REhabilitation Research, 30, 281-287. https://doi.org/10.1097/MRR.0b013e3282f144fb
Thiessen, M., Gluth, S., & Corso, R. (2013). Unstructured Played and Creative development in the Classroom. Doctoral Dissertation, Infonomic Society.
https://doi.org/10.20533/ijcdse.2042.6364.2013.0187
Thurston, S., Paul, L., Loney, P., Wong, M., & Browne, G. (2010a). The Quality of Life of a Multidiagnosis Group of Special Needs Children : The Quality of Life of a Multidiagnosis Group of Special Needs Children : Associations and Costs. International Journal of Pediatrics, (April). https://doi.org/10.1155/2010/940101
Thurston, S., Paul, L., Loney, P., Wong, M., & Browne, G. (2010b). The Quality of Life of a Multidiagnosis Group of Special Needs Children: Associations and Costs. International Journal of Pediatrics, 2010, 1-13. https://doi.org/10.1155/2010/940101
Tuegeh, J., Rompas, F., & Ransun, D. (2012). Peran Keluarga dalam Memandirikan Anak Retardasi Mental di Yayasan Pembinaan Anak Cacat Manado Tahun 2011. JUIPERDO, 1(1), 30-35.
UNICEF. (2013). Rangkuman Eksekutif: Anak Penyandang Disabilitas.
UNICEF. (2018). Introduction Disabilities. Retrieved February 1, 2019, from https://www.unicef.org/disabilities/
Varni, J. W., Burwinkle, T. M., & Lane, M. M. (2005). Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health and Quality of Life Outcomes, 3, 1-9. https://doi.org/10.1186/1477-7525-3-34
Vaz, S., Cordier, R., Falkmer, M., Ciccarelli, M., & Parsons, R. (2015). Should Schools Expect Poor Physical and Mental Health , Social Adjustment , and Participation Outcomes in Students with Disability ? PLOS One, 10(5), 1-23. https://doi.org/10.1371/journal.pone.0126630
Vos, P., Cock, P. De, Petry, K., Noortgate, W. Van Den, & Maes, B. (2010). Research in Developmental Disabilities What makes them feel like they do ? Investigating the subjective well-being in people with severe and profound disabilities. Research in Developmental Disabilities, 31, 1623-1632. https://doi.org/10.1016/j.ridd.2010.04.021
Wardani, I. Y., & Dewi, F. A. (2018). Kualitas Hidup Pasien di Persepsikan Melalui Stigma Diri. Jurnal Keperawatan Indonesia, 21(1), 17-26. https://doi.org/10.7454/jki.v21i1.485
Wehman, P., Schall, C., Carr, S., Targett, P., West, M., & Cifu, G. (2014). Transition From School to Adulthood for Youth With Autism Spectrum Disorder. Journal of Disability Policy Studies, 25(1), 30-40. https://doi.org/10.1177/1044207313518071
Whitney, D. G., Shapiro, D. N., Peterson, M. D., & Warschausky, S. A. (2018). Factors associated with depression and anxiety in children with intellectual disabilities. Journal of Intellectual Disability Research, 1-10. https://doi.org/10.1111/jir.12583
WHO. (2011). World Report on Disability. Retrieved from www.who.int/about/licensing/copyright_form/en/index.html
Winter, C. F. De, Bastiaanse, L. P., Hilgenkamp, T. I. M., Evenhuis, H. M., & Echteld, M. A. (2012). Research in Developmental Disabilities Cardiovascular risk factors ( diabetes , hypertension , hypercholesterolemia and metabolic syndrome ) in older people with intellectual disability : Results of the HA-ID study. Research in Developmental Disabilities, 33(6), 1722-1731. https://doi.org/10.1016/j.ridd.2012.04.010
Wishart, J. ., & Cebula, K. . (2007). Understanding of Facial Expressions of Emotion by Children with Intellectual Disabilities of Differing Aetiology. Journal of Intellectual Disability Research, 51(7), 551-563. Retrieved from https://doi.org/10.1111/j.1365-2788.2006.00947.x
World Health Organization. (2014). WHO | WHOQOL: Measuring Quality of Life. Health Statistics and Information Systems (WHO), 1. https://doi.org/10.1073/pnas.1706076114
Yamaki, K. (2005). Body Weight Status Among Adults With Intellectual Disability. American Assosiation on Mental Retardation, 43(1), 1-10.
https://doi.org/10.1352/0047-6765(2005)43<1:BWSAAW>2.0.CO;2
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Mediani, H. S., Hendrawati, S., & Fatimah, S. (2022). Kualitas Hidup Anak dengan Retardasi Mental. Jurnal Obsesi : Jurnal Pendidikan Anak Usia Dini, 6(4), 2626–2641. https://doi.org/10.31004/obsesi.v6i4.2086
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