Hubungan Stigma Afiliasi dan Kualitas Hidup Pengasuh Anak Gangguan Spektrum Autisme
DOI:
https://doi.org/10.17977/um070v4i92024p412-429Keywords:
autism, quality of life, caregiver, affiliate stigmaAbstract
Autism spectrum disorder is a neurological and developmental disorder that affects an individual's ability to behave and perform social interaction, learning and communication. Autism spectrum disorder cases not only affect the individual but also affect family life. The quality of life of caregivers of children with autism spectrum disorders is not only faced with the level of the child's autism disorder but also the negative social attitudes of society, which in this case is affiliate stigma. This study aims to determine the relationship between affiliate stigma and the quality of life of caregivers of children with autism spectrum disorders. The research method used is a quantitative method with a correlational research design. The population of this research is the community of caregivers of autistic children in Malang City with 42 community members participating. The results of this study found that there was a significant relationship between affiliate stigma and the quality of life of caregivers of children with autism spectrum disorders and it was negatively correlated a coefficient of -0.536. This shows that the lower the level of stigmatization of belonging, the higher the level of quality of life.
Abstrak
Gangguan spektrum autisme merupakan gangguan neurologis dan perkembangan yang mempengaruhi kemampuan individu untuk berperilaku serta melakukan interaksi sosial, belajar dan komunikasi. Kasus gangguan spektrum autism tidak hanya mempengaruhi individu melainkan juga mempengaruhi kehidupan keluarga. Kualitas hidup pengasuh anak dengan gangguan spektrum autism tidak hanya dipengaruhi oleh tingkat gangguan autisme anak, tetapi juga sikap sosial negatif masyarakat yang dalam hal ini adalah stigma afiliasi. Penelitian ini bertujuan untuk mengetahui hubungan antara stigma afiliasi dan kualitas hidup pengasuh anak gangguan spektrum autisme. Metode penelitian yang digunakan adalah metode kuantitatif dengan desain penelitian korelasional. Populasi penelitian ini yakni komunitas para pengasuh anak autis di Kota Malang dengan jumlah responden yang berpartisipasi sebanyak 42 anggota komunitas. Hasil penelitian ini ditemukan terdapat hubungan yang signifikan antara stigma afiliasi dan kualitas hidup pengasuh anak gangguan spektrum autisme serta berkorelasi secara negatif dengan koefisien -0,536. Hal ini menunjukkan semakin rendah tingkat stigma afiliasi maka akan semakin tinggi tingkat kualitas hidup.
References
Alenazi, D., Hammad, S., & Mohamed, A. (2020). Effect of autism on parental quality of life in Arar city, Saudi Arabia. Journal of Family and Community Medicine, 27(1), 15–22. https://doi.org/10.4103/jfcm.JFCM_157_19
American Psychiatric Association. (2013). Neurodevelopmental disorders. Dalam american psychiatric association: diagnostic and statistical manual of mental disorders (5 ed., hlm. 50–51). American Psychiatric Association.
American Psychological Association. (2015). APA Dictionary of psychology (G. S. VandenBos, Ed.; 2 ed.). American Psychological Association.
Asahar, S. F., Malek, K. A., & Isa, M. R. (2021). Quality of life and child’s autism-specific difficulties among malaysian main caregivers: A cross-sectional study. International Journal of Environmental Research and Public Health, 18(18). https://doi.org/10.3390/ijerph18189861
Azwar, S. (2023). Penyusunan skala psikologi (3 ed.). Pustaka Pelajar.
Bolbocean, C., Andújar, F. N., McCormack, M., Suter, B., & Holder, J. L. (2022). Health-related quality of life in pediatric patients with syndromic autism and their caregivers. Journal of autism and developmental disorders, 52(3), 1334–1345. https://doi.org/10.1007/s10803-021-05030-8
Botha, M., Dibb, B., & Frost, D. M. (2022). “Autism is me”: an investigation of how autistic individuals make sense of autism and stigma. Disability and Society, 37(3), 427–453. https://doi.org/10.1080/09687599.2020.1822782
Centers for Disease Control and Prevention. (2024, Mei 25). Signs and symptoms of autism spectrum disorder. CDC.
Finnerty, A. (2020). Indonesian_WHOQOL-BREF. World Health Organization.
Fong, V. C., Lee, B. S., & Iarocci, G. (2022). A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families. Autism, 26(2), 525–537. https://doi.org/10.1177/13623613211034067
Han, E., Scior, K., Avramides, K., & Crane, L. (2022). A systematic review on autistic people’s experiences of stigma and coping strategies. Autism Research, 15(1), 12–26. https://doi.org/10.1002/aur.2652
Han, E., Tan, M. M. J., Crane, L., & Legido-Quigley, H. (2021). A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers. Autism, 25(8), 2279–2290. https://doi.org/10.1177/13623613211016112
Hu, Y. L., Chang, C. C., Lee, C. H., Liu, C. H., Chen, Y. J., Su, J. A., Lin, C. Y., & Griffiths, M. (2023). Associations between Affiliate Stigma and Quality of Life among Caregivers of Individuals with Dementia: Mediated Roles of Caregiving Burden and Psychological Distress. Asian Journal of Social Health and Behavior, 6(2), 64–71. https://doi.org/10.4103/shb.shb_67_23
Kemenkes RI. (2022). Autisme A-Z Webinar Peringatan Hari Peduli Autisme Sedunia 2022. Kemenkes ditjen kesmas. https://kesmas.kemkes.go.id/konten/133/0/autisme-a-z-webinar-peringatan-hari-peduli- autisme-sedunia-2022#
Kliping-um. (2022). Gandeng fip um, malang autism center sukseskan program sekolah autism rakyat. Universitas negeri malang. http://kliping.um.ac.id/index.php/gandeng-fip-um-malang-autism- center-sukseskan-program-sekolah-autism-rakyat/
Kulasinghe, K., Whittingham, K., Mitchell, A. E., & Boyd, R. N. (2023). Psychological interventions targeting mental health and the mother–child relationship in autism: Systematic review and meta-analysis. Dalam Developmental Medicine and Child Neurology (Vol. 65, Nomor 3, hlm. 329–345). John Wiley and Sons Inc. https://doi.org/10.1111/dmcn.15432
Lockwood Estrin, G., Bhavnani, S., Arora, R., Gulati, S., & Divan, G. (2023). Caregiver perceptions of autism and neurodevelopmental disabilities in new delhi, india. International Journal of Environmental Research and Public Health, 20(7). https://doi.org/10.3390/ijerph20075291
Mak, W. W. S., & Cheung, R. Y. M. (2008). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 21(6), 532–545. https://doi.org/10.1111/j.1468-3148.2008.00426.x
Mak, W. W. S., & Kwok, Y. T. Y. (2010). Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Social Science & Medicine, 70(12), 2045–2051. https://doi.org/10.1016/j.socscimed.2010.02.023
Naheed, A., Islam, Md. S., Hossain, S. W., Ahmed, H. U., Uddin, M. M. J., Tofail, F., Hamadani, J. D., Hussain, A. H.
M. E., & Munir, K. (2020). Burden of major depressive disorder and quality of life among mothers of children with autism spectrum disorder in urban bangladesh. Autism Research, 13(2), 284–297. https://doi.org/10.1002/aur.2227
National Institute of Mental Health. (2022). Autism spectrum disorder. U.S. Department of Health and Human Services
National Institute of Mental Health. (2023). Autism spectrum disorder. U.S. Department of Health and Human Services. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd
Ng, C. S. M., & Ng, S. S. L. (2022). A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder. Scientific Reports, 12(1), 19550. https://doi.org/10.1038/s41598-022-23978-0
Papadopoulos, A., Tafiadis, D., Tsapara, A., Skapinakis, P., Tzoufi, M., & Siafaka, V. (2022). Validation of the Greek version of the Affiliate Stigma Scale among mothers of children with autism spectrum disorder. BJPsych Open, 8(1), e30. https://doi.org/10.1192/bjo.2021.1083
Papadopoulos, C., Lodder, A., Constantinou, G., & Randhawa, G. (2019). Systematic review of the relationship between autism stigma and informal caregiver mental health. Journal of Autism and Developmental Disorders, 49(4), 1665–1685. https://doi.org/10.1007/s10803-018-3835-z
Patra, S., & Kumar Patro, B. (2019). Affiliate stigma among parents of children with autism in eastern India. Asian Journal of Psychiatry, 44, 45–47. https://doi.org/10.1016/j.ajp.2019.07.018
Pecor, K., Barbayannis, G., Yang, M., Johnson, J., Materasso, S., Borda, M., Garcia, D., Garla, V., & Ming, X. (2021). Quality of life changes during the covid-19 pandemic for caregivers of children with ADHD and/or ASD. International Journal of Environmental Research and Public Health, 18(7), 3667. https://doi.org/10.3390/ijerph18073667
Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M., Alessandri, G., Lega, I., & Nardocci, F. (2018). Parental burden and its correlates in families of children with autism spectrum disorder: a multicentre study with two comparison groups. Clinical Practice & Epidemiology in Mental Health, 14(1), 143–176. https://doi.org/10.2174/1745017901814010143
Purba, F. D., Hunfeld, J. A. M., Iskandarsyah, A., Fitriana, T. S., Sadarjoen, S. S., Passchier, J., & Busschbach, J. J. V. (2018). Quality of life of the indonesian general population: test-retest reliability and population norms of the EQ-5D-5L and WHOQOL-BREF. PLOS ONE, 13(5), e0197098. https://doi.org/10.1371/journal.pone.0197098
Rukminingsih, Adnan, G., Mohammad, A., & Latief. (2020). Metode penelitian pendidikan erhaka utama yogyakarta. www.erhakautama.com
Salleh, N. S., Tang, L. Y., Jayanath, S., & Lim Abdullah, K. (2022). An explorative study of affiliate stigma, resilience, and quality of life among parents of children with autism spectrum disorder (ASD). Journal of Multidisciplinary Healthcare, Volume 15, 2053–2066. https://doi.org/10.2147/JMDH.S376869
Sampurno, M. (2022, April 2). RSSA per bulan tangani dua kasus baru autisme. Jawa Pos Radar Malang. https://radarmalang.jawapos.com/kota-malang/811083327/rssa-per-bulan-tangani-dua-kasus- baru-autisme
Shi, Y., Shao, Y., Li, H., Wang, S., Ying, J., Zhang, M., Li, Y., Xing, Z., & Sun, J. (2019). Correlates of affiliate stigma among family caregivers of people with mental illness: A systematic review and meta‐analysis. Journal of Psychiatric and Mental Health Nursing, 26(1–2), 49–61. https://doi.org/10.1111/jpm.12505
Sirgy, M. J. (2012). The psychology of quality of life (vol. 50). Springer netherlands. https://doi.org/10.1007/978-94-007-4405-9
Su, J.-A., & Chang, C.-C. (2020). Association between family caregiver burden and affiliate stigma in the families of people with dementia. International Journal of Environmental Research and Public Health, 17(8), 2772. https://doi.org/10.3390/ijerph17082772
Tekola, B., Kinfe, M., Girma, F., Hanlon, C., & Hoekstra, R. A. (2020). Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study. Social Science & Medicine, 256. https://doi.org/10.1016/j.socscimed.2020.113034
Vaarama, M., & Pieper, R. (2014). Encyclopedia of quality of life and well-being research (A. C. Michalos, Ed.). Springer Netherlands. https://doi.org/10.1007/978-94-007-0753-5
Veenhoven, R. (2014). Quality of Life (QOL), an Overview. Dalam A. C. Michalos (Ed.), Encyclopedia of Quality of Life and Well-Being Research (hlm. 5265–5266). Springer Netherlands. https://doi.org/10.1007/978-94-007-0753-5
World Health Organization. (2012). WHOQOL user manual progamme on mental health division of mental health and prevention of substance abuse world health organization.
Zhang, Y., Subramaniam, M., Lee, S. P., Abdin, E., Sagayadevan, V., Jeyagurunathan, A., Chang, S., Shafie, S. B., Fauziana, R., Rahman, B. A., Vaingankar, J. A., & Chong, S. A. (2018). Affiliate stigma and its association with quality of life among caregivers of relatives with mental illness in Singapore. Psychiatry Research, 265, 55–61. https://doi.org/10.1016/j.psychres.2018.04.044
Zhou, X., Chen, C., Yao, Y., Xia, J., Cao, L., & Qin, X. (2022). The scar that takes time to heal: A systematic review of COVID-19-related stigma targets, antecedents, and outcomes. Frontiers in Psychology, 13. https://doi.org/10.3389/fpsyg.2022.1026712
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