Shame and Burden: Family Stigma in Caring for Shackled Individuals with Mental Disorders

Willi Holis; Atiqur Rohman; Mery Eka Yaya

doi:10.56359/gj.v5i2.541

Authors

Willi Holis Universitas Nazhatut Thullab Al Muafa Sampang
Atiqur Rohman Universitas Nazhatut Thullab Al Muafa Sampang
Mery Eka Yaya Universitas Nazhatut Thullab Al Muafa Sampang

DOI:

https://doi.org/10.56359/gj.v5i2.541

Keywords:

Emotional Burden, Mental Disorders, Family Experience

Abstract

Introduction: Mental disorders remain a significant public health concern, often leading to stigma and social discrimination, particularly for families caring for affected individuals. In some cases, shackling (physical restraint) is still practiced due to limited access to mental health services, further intensifying the burden on caregivers.

Objective: This study aims to explore the family experiences of stigma and emotional burden in providing care for shackled individuals with mental disorders.

Method: A qualitative research design with a phenomenological approach was employed. The study was conducted within the scope of the Pamekasan District Health Office, involving families of mentally ill patients as participants. Inclusion criteria included participants who had cared for restrained family members for over a year, were above 20 years old, willing to participate, and able to communicate verbally. A snowball sampling technique was used, where key informants assisted in identifying additional participants.

Results: Participants reported experiencing stigma related to their role in caring for family members with mental disorders who had been restrained. The findings highlight psychological and emotional reactions, as well as how participants navigate daily life amid societal stigma. A key subtheme, "Emotions," describes their emotional responses, which include sadness, anger, shame, and guilt—common experiences among participants.

Conclusion: This study concludes that family caregivers of individuals with mental illness face significant psychological distress due to stigma, primarily manifesting as sadness, anger, shame, and guilt. These emotional responses stem from discrimination, stereotyping, and societal labeling. Effective emotional management is crucial in helping caregivers cope and respond constructively to stigma. The findings emphasize the need for supportive interventions to enhance caregivers' emotional resilience and overall well-being.

Downloads

Download data is not yet available.

References

Abojabel H, Werner P. Exploring family stigma among caregivers of persons with Alzheimer ’ s disease : The experiences of Israeli-Arab caregivers. 2016;

Ae-ngibise KA, Christian V, Doku K, Poku K, Owusu-agyei S, Ayuurebobi K, et al. The experience of caregivers of people living with serious mental disorders: a study from rural Ghana. 2017;9716(February).

Angermeyer M.C., Schulze B. Reinforcing stereotypes: how the focus on forensic cases in news reporting may influence public attitudes towards the mentally ill. Int. J. Law Psychiatr. 2001;24(4–5):469–486. doi: 10.1016/S0277-9536(02)00028-X

Alasmee, N., and A. Hasan. 2020. “Primary Caregivers Experience of Anti‐Psychotic Medication: A Qualitative Study.” Archives of Psychiatric Nursing 34, no. 6: 520–528. https://doi.org/10.1016/j.apnu.2020.09.002.

ARMAIJN, L. (2019). Persepsi Penderita Kusta Terhadap Stigma Kusta Di Kota Ternate. Kieraha Medical Journal, 1(2), 31–37. https://doi.org/10.33387/kmj.v1i2.1705

Al‐Sawafi, A., K. Lovell, L. Renwick, and N. Husain. 2021. “Exploring the Experience of Relatives Living With Individuals Diagnosed With Schizophrenia in Oman: A Qualitative Study.” Journal of Psychiatric and Mental Health Nursing 28, no. 6: 1029–1040. https://doi.org/10.1111/jpm.12786.

Bachtiar A., Windarwati H.D., Keliat B.A., Ismail R.I., Ati N.A.L., Sulaksono A.D., et al. The fight against stigma: multilevel stigma interventions in schizophrenia patients. J. Publ. Heal. Res. 2020;9(4):1883. doi: 10.4081/jphr.2020.1883.

Catthoor K, Schrijvers D, Hutsebaut J, Feenstra D, Persoons P, De Hert M, et al. Associative stigma in family members of psychotic patients in Flanders: an exploratory study. World J Psychiatry. 2015;5(1):118–25.

Clement S, Schauman O, Graham T, Maggioni F, Evans-Lacko S, Bezborodovs N, et al. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychol Med. 2015;45(1):11–27.

Corrigan PW, Watson AC, Miller FE. Blame, shame, and contamination: The impact of mental illness and drug dependence stigma on family members. J Fam Psychol. 2006;20(2):239–46.

Darban, F., R. Mehdipour‐ Rabori, J. Farokhzadian, E. Nouhi, and S. Sabzevari. 2021. “Family Achievements in Struggling With Schizophrenia: Life Experiences in a Qualitative Content Analysis Study in Iran.” BMC Psychiatry 21, no. 1: 7. https://doi.org/10.1186/s12888‐020‐03025‐w.

Deshpande, S., S. Dewani, S. N. Sirkhot, and D. Veerkar. 2018. “Insights Into Psychosocial Problems of Primary Caretakers of Patients With Schizophrenia in India. Annals of Indian.” Psychiatry 2, no. 2: 130. https://doi.org/10.4103/aip.aip_25_18.

Dijkxhoorn, M. A., A. Padmakar, J. F. G. Bunders, and B. J. Regeer. 2022. “Stigma, Lost Opportunities, and Growth: Understanding Experiences of Caregivers of Persons With Mental Illness in Tamil Nadu, India.” Transcultural Psychiatry 60, no. 2: 255–271. https://doi.org/10.1177/13634615211059692.

Fung KM, Tsang HW, Chan F. Self-stigma, stages of change and psychosocial treatment adherence among Chinese people with schizophrenia: a path analysis. Soc Psychiatry Psychiatr Epidemiol. 2010;45(5):561–8.

Fitryasari, R., A. Yusuf, T. Nursalam, and H. E. Nihayati. 2018. “Family members' Perspective of Family Resilience's Risk Factors in Taking Care of Schizophrenia Patients.” International Journal of Nursing Sciences 5, no. 3: 255–261. https://doi.org/10.1016/j.ijnss.2018.06.002.

Goh, Y. S. 2024. “The Landscape of Mental Health Care Landscape in Asia: Issues and Challenges.” Jurnal Ners 19, no. 3: 273–274. https://doi.org/10.20473/jn.v19i3.62529.

Goh, Y. S., Q. Y. Ow Yong, V. C. K. Ng, et al. 2024. “Caregivers' Experiences in Helping Individuals With Severe and Enduring Mental Health Challenges Integrate Into the Community: A Qualitative Descriptive Study in Singapore.” Journal of Psychiatric and Mental Health Nursing 20: 13071. https://doi.org/10.1111/jpm.13071.

Huggett C, Birtel D, Awenat YF, Fleming P, Wilkes S, Williams S, et al. A qualitative study : experiences of stigma by people with mental health problems. 2018;1–18.

Lam CS, Tsang HWH, Corrigan PW, Lee Y-T, Angell B, Shi K, et al. Chinese lay theory and mental illness stigma: implications for research and practices. J Rehabil. 2010;76:35–40.

Lasalvia A, Zoppei S, Van Bortel T, Bonetto C, Cristofalo D, Wahlbeck K, et al. Global pattern of experienced and anticipated discrimination reported by people with major depressive disorder: a cross-sectional survey. Lancet. 2013;381(9860):55–62.

Ling Y, Wong I, Kong D, Tu L, Frasso R. “ My bitterness is deeper than the ocean ”: understanding internalized stigma from the perspectives of persons with schizophrenia and their family caregivers. Int J Ment Health Syst [Internet]. BioMed Central; 2018;1–15. Available from: https://doi.org/10.1186/s13033-018-0192-4

Linden M., Kavanagh R. Attitudes of qualified vs. student mental health nurses towards an individual diagnosed with schizophrenia. J. Adv. Nurs. 2012;68(6):1359–1368. doi: 10.1111/j.1365-2648.2011.05848.x.

Maiocco S, Shelley E, Salmond S, Jewell ST, Caldwell B, Lieggi M, et al. living with schizophrenia : a systematic review protocol. 2017;1575–84.

Mukherjee A, Lahiry S, Mukherjee A, Choudhury S, Sinha R. Study on Defense Mechanisms to Cope With cejiyStress Due to Stigma Among People Living With HIV / AIDS Reported in Eastern India : A Single Center Experience. 2017;

Paul S, Nadkarni V V. A qualitative study on family acceptance, stigma and discrimination of persons with schizophrenia in an Indian metropolis. Int Soc Work. 2017;60(1):84–99.

Phillips MR, Zhang J, Shi Q, Song Z, Ding Z, Pang S, et al. Prevalence, treatment, and associated disability of mental disorders in four provinces in China during 2001–05: an epidemiological survey. Lancet. 2009;373(9680):2041–53.

Ran MS, Zhang TM, Wong IY, Yang X, Liu CC, Liu B, et al. Internalized stigma in people with severe mental illness in rural China. Int J Soc psychiatry. 2018;64(1):9–16.

Rezayat F, Mohammadi E, Fallahi-khoshknab M, Sharifi V. Experience and the meaning of stigma in patients with schizophrenia spectrum disorders and their families: A qualitative study. Japan J Nurs Sci. 2018;

Tanaka C, Teresa M, Tuliao R, Tanaka E, Yamashita T, Matsuo H. A qualitative study on the stigma experienced by people with mental health problems and epilepsy in the Philippines. BMC Psychiatry; 2018;1–13.

Walker L. ‘There’s no pill to help you deal with the guilt and shame’: Contemporary experiences of HIV in the United Kingdom. Heal An Interdiscip J Soc Study Heal Illn Med [Internet]. 2017;(1998):136345931773943. Available from: http://journals.sagepub.com/doi/10.1177/1363459317739436

Yang LH. Application of mental illness stigma theory to Chinese societies: synthesis and new directions. Singapore Med J. 2007;48(11):977–85.