Challenges experienced by mothers of children with cerebral palsy during the movement control order (lockdown) in Malaysia: A qualitative study
DOI:
https://doi.org/10.24200/jonus.vol8iss1pp246-269Abstract
Background and Purpose: Following the global coronavirus (COVID-19) outbreak and the recent spike in COVID-19 cases in Malaysia, the Malaysian government imposed a Movement Control Order (MCO) on 16 March 2020 to curb the outbreak. Consequently, all non-essential activities were suspended, and operations shifted entirely to a work-from-home basis as schools were temporarily closed and citizens were urged to stay home. Despite numerous studies examining the negative impacts of MCO on various sectors, limited attention has been given to its potential effects on vulnerable populations, including parents of children with special needs, such as those with cerebral palsy (CP). The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for children with CP during the MCO.
Methodology: This study was designed as qualitative research. Twenty-six participants were selected through a purposive sampling method for in-depth interviews. The participants were parents who were members of the Cerebral Palsy Support Group in Terengganu, Malaysia. The interview responses were thematically analyzed using a content analysis method.
Findings: Four main themes emerged from the thematic analysis: emotional distress, worry over the postponement of therapy and medical consultation, burnout due to working from home, and the conditions of the CP children themselves. The findings indicated that both working mothers and housewives experienced depression and deterioration in physical health and psychosocial emotions.
Contributions: Interventions in the form of financial aid, guidance for self-therapy at home for children with CP, and emotional support are urgently needed to ensure mothers and their CP children maintain their quality of life despite the MCO.
Keywords: Movement control order, challenges, parents, cerebral palsy, financial distress, emotional distress.
References
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https://www.bharian.com.my/berita/nasional/2021/05/813664/kes-keganasan-rumah-tangga-meningkat-sepanjang-pkp
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how to reduce it: Rapid review of the evidence. The Lancet, 395(10227), P912-920.
Cankurtaran, D., Tezel, N., Yildiz, S. Y., Celik, G., & Akyuz, E. U. (2021). Evaluation of the effects of the COVID-19 pandemic on children with cerebral
palsy, caregivers’ quality of life, and caregivers' fear of COVID-19 with telemedicine. Irish Journal of Medical Science, 190(4), 1473-1480.
Chen, L., Li, W., He, J., Wu, L., Yan, Z., & Tang, W. (2012). Mental health, duration of unemployment, and coping strategy: A cross-sectional study of
unemployed migrant workers in Eastern China during the economic crisis. BMC Public Health, 12(597), 1-12.
Clark, S., McGrane, A., Boyle, N., Joksimovic, N., Burke, L., Rock, N., & O’Sullivan, K. (2021). “You’re a teacher you’re a mother, you’re a worker”: Gender
inequality during COVID‐19 in Ireland. Gender, Work & Organization, 28(4), 1352-1362.
Dagnino, P., Anguita, V., Escobar, K., & Cifuentes, S. (2020). Psychological effects of social isolation due to quarantine in Chile: An exploratory study.
Frontiers in Psychiatry, 11(591142), 1-13.
Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K., & Davern, M. (2010). The impact of caring for a child with cerebral palsy: Quality of life for mothers
and fathers. Child: Care, Health and Development, 36(1), 63-73.
Department of Statistics Malaysia. (2020). Report of special survey on effects of COVID-19 on economy and individual (Round 1).
https://www.dosm.gov.my/v1/index.php?r=column/cone&menu_id=d3pnMXZ4ZHJjUnpnYjNyUnJhek83dz09.
Dhiman, S., Sahu, P. K., Reed, W. R., Ganesh, G. S., Goyal, R. K., & Jain, S. (2020). Impact of COVID-19 outbreak on mental health and perceived strain
among caregivers tending children with special needs. Research in Developmental Disabilities, 107(1), 103790.
Dogbe, J. A., Kyeremateng, J. D., Opoku, M. P., Nketsia, W., & Hammond, C. (2019). ‘There is family tension, but they understand…’: Familial and sibling
relationships following the diagnosis of Cerebral Palsy in children in Ghana. International Journal of Developmental Disabilities, 68(1), 35-46.
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attention-to-women-s-needs
Fabeil, N. F., Pazim, K. H., & Langgat, J. (2020). The impact of COVID-19 pandemic crisis on micro-enterprises: Entrepreneurs’ perspective on business
continuity and recovery strategy. Journal of Economics and Business, 3(2), 837-844.
Flick, U. (2009). An introduction to qualitative research (4th ed.). Sage Publications.
Foo, L. P., Chin, M. Y., Tan, K. L., & Phuah, K. T. (2020). The impact of COVID-19 on tourism industry in Malaysia. Current Issues in Tourism, 24(19), 1-5.
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Garip, Y., Ozel, S., Tuncer, O. B., Kilinc, G., Seckin, F., & Arasil, T. (2017). Fatigue in the mothers of children with Cerebral Palsy. Disability and
Rehabilitation, 39(8), 757-762.
Goldsmith, A. H., Veum, J. R., & Darity Jr, W. (1996). The psychological impact of unemployment and joblessness. The Journal of Socio-Economics, 25(3),
333-358.
Goldsmith, A. H., Veum, J. R., & Darity Jr, W. (1997). Unemployment, joblessness, psychological well-being and self-esteem: Theory and evidence. The
Journal of Socio-Economics, 26(2), 133-158.
Gorlick, A. (2020, March 30). The productivity pitfalls of working from home in the age of COVID-19. Standford.edu.
https://news.stanford.edu/2020/03/30/productivity-pitfalls-working-home-age-COVID-19/
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Organe officiel de la Societe francaise de pediatrie, 18(2), 204-214.
Hashim, R., Bakar, A., Noh, I., & Mahyudin, H. A. (2020). Employees’ job satisfaction and performance through working from home during the
pandemic lockdown. Environment-Behavior Proceedings Journal, 5(15), 461-467.
Hoh, K. S. (2020, April 24). MEF: 2 million Malaysians may lose jobs. The Sun Daily. https://www.thesundaily.my/COVID-19/mef-2-million-malaysians-
may-lose-jobs-JG2329795.
Ismail, M. H. (2020, December 29). Kes perceraian di Malaysia rekodkan peningkatan luar biasa. Sinar Harian Online.
https://www.sinarharian.com.my/article/116749/BERITA/Nasional/Kes-perceraian-di- Malaysia-rekodkan-peningkatan-luar-biasa
Kamel, H. (2020, March 26). MCO may have profound psychological effects. The Malaysia Reserve. https://themalaysianreserve.com/2020/03/26/mco-
may-have-profound-psychological-effects/
Karim, W., Haque, A., Anis, Z., & Ulfy, M. A. (2020). The movement control order (MCO) for COVID-19 crisis and its impact on tourism and hospitality
sector in Malaysia. International Tourism and Hospitality Journal, 3(2), 1-7.
Khayatzadeh, M. M., Rostami, H. R., Amirsalari, S., & Karimloo, M. (2013). Investigation of quality of life in mothers of children with Cerebral Palsy in
Iran: Association with socio-economic status, marital satisfaction and fatigue. Disability and Rehabilitation, 35(10), 803-808.
Khaiyom, J. H. A. (2020). Managing mental health in pandemic COVID-19 and movement control order. The Malaysian Journal of Medical Sciences,
27(4), 147-153.
Leonard, B., Brust, J. D., & Sapienza, J. J. (1992). Financial and time costs to parents of severely disabled children. Public Health Reports, 107(3), 302–
312.
Lewis, S., Kagan, C., Heaton, P., & Cranshaw, M. (1999). Economic and psychological benefits from employment: The experiences and perspectives of
mothers of disabled children. Disability & Society, 14(4), 561-575.
Mahoney, J., & Goerts, G. (2006). A tale of two cultures: Contrasting quantitative and qualitative research. Political Analysis, 14(1), 227–249.
Omar, A. R. C., Ishak, S., & Jusoh, M. A. (2020). The impact of COVID-19 Movement Control Order on SMEs’ businesses and survival strategies.
Geografia-Malaysian Journal of Society and Space, 16(2), 139-150.
Park, E. Y., & Nam, S. J. (2019). Time burden of caring and depression among parents of individuals with cerebral palsy. Disability and Rehabilitation,
41(13), 1508-1513.
PMO. (2020). PRIHATIN economic stimulus package. https://www.pmo.gov.my/prihatin-economic-stimulus-package/
Rahman, S. (2021, July 8). Malaysia’s white flag movement: Symbol of hope and helping each other. Channel News Asia.
https://www.channelnewsasia.com/commentary/ commentary-malaysias-white-flag-movement-symbol-hope-and-helping-each-other-2030226.
Ritchie, J., Spencer, L., & O’Connor, W. (2003). Carrying out qualitative analysis. In J. Ritchie & J. Lewis (Eds.), Qualitative research practice: A guide for
social science students and researchers (pp. 219–262). Sage Publications.
Reid, A., Imrie, H., Brouwer, E., Clutton, S., Evans, J., Russell, D., & Bartlett, D. (2011). “If I knew then what I know now”: Parents’ reflections on raising a
child with Cerebral Palsy. Physical & Occupational Therapy in Paediatrics, 31(2), 169-183.
Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, … Jacobsson, B. (2007). A report: The definition and classification of Cerebral
Palsy April 2006. Developmental Medicine and Child Neurology, 109(1), 8-14.
Sundarasen, S., Chinna, K., Kamaludin, K., Nurunnabi, M., Baloch, G. M., Khoshaim, H. B., ... Sukayt, A. (2020). Psychological impact of COVID-19 and
lockdown among university students in Malaysia: Implications and policy recommendations. International Journal of Environmental Research and
Public Health, 17(17), 1-13.
Terra, V. C., Cysneiros, R. M., Schwartzman, J. S., Teixeira, M. C., Arida, R. M., Cavalheiro, E. A., … Albuquerque, M. (2011). Mothers of children with
Cerebral Palsy with or without epilepsy: A quality of life perspective. Disability and Rehabilitation, 33(5), 384-388.
Theodossiou, I. (1998). The effects of low-pay and unemployment on psychological well-being: A logistic regression approach. Journal of Health
Economics, 17(1), 85-104.
UNICEF. (2020). Impact of COVID-19 on vulnerable children and families in Malaysia.
https://www.unicef.org/malaysia/media/1916/file/Impact%20of%20COVID19%20on%20Vulnerable%20Children%20&%20Families%20in%20Malaysia.
pdf
Whittingham, K., Wee, D., Sanders, M., & Boyd, R. (2011). Responding to the challenges of parenting a child with Cerebral Palsy: A focus group.
Disability and Rehabilitation, 33(17-18), 1557-1567.
Yunus, M. Y. (2021, January 31). Kes dera kanak-kanak meningkat. Sinar Harian
Online.https://www.sinarharian.com.my/article/121703/BERITA/Nasional/Kes-dera-kanak-kanak-meningkat
Zainal, H. (2020, March 19). Take care of your mental health. The Star Online. https://www.thestar.com.my/news/nation/2020/03/19/take-care-of-your-
mental-health.
Al-Kumaim, N. H., Alhazmi, A. K., Mohammed, F., Gazem, N. A., Shabbir, M. S., & Fazea, Y. (2021). Exploring the impact of the COVID-19 pandemic on
university students’ learning life: An integrated conceptual motivational model for sustainable and healthy online learning. Sustainability, 13(5), 1-20.
Ariffin, L. (2021, May 4). Kes keganasan rumahtangga meningkat sepanjang PKP. Berita Harian Online.
https://www.bharian.com.my/berita/nasional/2021/05/813664/kes-keganasan-rumah-tangga-meningkat-sepanjang-pkp
Brooks, S. K., Webster, R. K., Smith, L. E., Woodland, L., Wessely, S., Greenberg, N., & Rubin, G. J. (2020). The psychological impact of quarantine and
how to reduce it: Rapid review of the evidence. The Lancet, 395(10227), P912-920.
Cankurtaran, D., Tezel, N., Yildiz, S. Y., Celik, G., & Akyuz, E. U. (2021). Evaluation of the effects of the COVID-19 pandemic on children with cerebral
palsy, caregivers’ quality of life, and caregivers' fear of COVID-19 with telemedicine. Irish Journal of Medical Science, 190(4), 1473-1480.
Chen, L., Li, W., He, J., Wu, L., Yan, Z., & Tang, W. (2012). Mental health, duration of unemployment, and coping strategy: A cross-sectional study of
unemployed migrant workers in Eastern China during the economic crisis. BMC Public Health, 12(597), 1-12.
Clark, S., McGrane, A., Boyle, N., Joksimovic, N., Burke, L., Rock, N., & O’Sullivan, K. (2021). “You’re a teacher you’re a mother, you’re a worker”: Gender
inequality during COVID‐19 in Ireland. Gender, Work & Organization, 28(4), 1352-1362.
Dagnino, P., Anguita, V., Escobar, K., & Cifuentes, S. (2020). Psychological effects of social isolation due to quarantine in Chile: An exploratory study.
Frontiers in Psychiatry, 11(591142), 1-13.
Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K., & Davern, M. (2010). The impact of caring for a child with cerebral palsy: Quality of life for mothers
and fathers. Child: Care, Health and Development, 36(1), 63-73.
Department of Statistics Malaysia. (2020). Report of special survey on effects of COVID-19 on economy and individual (Round 1).
https://www.dosm.gov.my/v1/index.php?r=column/cone&menu_id=d3pnMXZ4ZHJjUnpnYjNyUnJhek83dz09.
Dhiman, S., Sahu, P. K., Reed, W. R., Ganesh, G. S., Goyal, R. K., & Jain, S. (2020). Impact of COVID-19 outbreak on mental health and perceived strain
among caregivers tending children with special needs. Research in Developmental Disabilities, 107(1), 103790.
Dogbe, J. A., Kyeremateng, J. D., Opoku, M. P., Nketsia, W., & Hammond, C. (2019). ‘There is family tension, but they understand…’: Familial and sibling
relationships following the diagnosis of Cerebral Palsy in children in Ghana. International Journal of Developmental Disabilities, 68(1), 35-46.
Endut, N. (2020). Malaysia’s lockdown pays little attention to women’s needs. https://asia.nikkei.com/Opinion/Malaysia-s-lockdown-pays-little-
attention-to-women-s-needs
Fabeil, N. F., Pazim, K. H., & Langgat, J. (2020). The impact of COVID-19 pandemic crisis on micro-enterprises: Entrepreneurs’ perspective on business
continuity and recovery strategy. Journal of Economics and Business, 3(2), 837-844.
Flick, U. (2009). An introduction to qualitative research (4th ed.). Sage Publications.
Foo, L. P., Chin, M. Y., Tan, K. L., & Phuah, K. T. (2020). The impact of COVID-19 on tourism industry in Malaysia. Current Issues in Tourism, 24(19), 1-5.
Ganley, R. (2002). The psychological impact of joblessness. Australian Social Policy, 3(1), 179-200.
Garip, Y., Ozel, S., Tuncer, O. B., Kilinc, G., Seckin, F., & Arasil, T. (2017). Fatigue in the mothers of children with Cerebral Palsy. Disability and
Rehabilitation, 39(8), 757-762.
Goldsmith, A. H., Veum, J. R., & Darity Jr, W. (1996). The psychological impact of unemployment and joblessness. The Journal of Socio-Economics, 25(3),
333-358.
Goldsmith, A. H., Veum, J. R., & Darity Jr, W. (1997). Unemployment, joblessness, psychological well-being and self-esteem: Theory and evidence. The
Journal of Socio-Economics, 26(2), 133-158.
Gorlick, A. (2020, March 30). The productivity pitfalls of working from home in the age of COVID-19. Standford.edu.
https://news.stanford.edu/2020/03/30/productivity-pitfalls-working-home-age-COVID-19/
Guyard, A., Fauconnier, J., Mermet, M. A., & Cans, C. (2011). Impact on parents of Cerebral Palsy in children: A literature review. Archives de pediatrie:
Organe officiel de la Societe francaise de pediatrie, 18(2), 204-214.
Hashim, R., Bakar, A., Noh, I., & Mahyudin, H. A. (2020). Employees’ job satisfaction and performance through working from home during the
pandemic lockdown. Environment-Behavior Proceedings Journal, 5(15), 461-467.
Hoh, K. S. (2020, April 24). MEF: 2 million Malaysians may lose jobs. The Sun Daily. https://www.thesundaily.my/COVID-19/mef-2-million-malaysians-
may-lose-jobs-JG2329795.
Ismail, M. H. (2020, December 29). Kes perceraian di Malaysia rekodkan peningkatan luar biasa. Sinar Harian Online.
https://www.sinarharian.com.my/article/116749/BERITA/Nasional/Kes-perceraian-di- Malaysia-rekodkan-peningkatan-luar-biasa
Kamel, H. (2020, March 26). MCO may have profound psychological effects. The Malaysia Reserve. https://themalaysianreserve.com/2020/03/26/mco-
may-have-profound-psychological-effects/
Karim, W., Haque, A., Anis, Z., & Ulfy, M. A. (2020). The movement control order (MCO) for COVID-19 crisis and its impact on tourism and hospitality
sector in Malaysia. International Tourism and Hospitality Journal, 3(2), 1-7.
Khayatzadeh, M. M., Rostami, H. R., Amirsalari, S., & Karimloo, M. (2013). Investigation of quality of life in mothers of children with Cerebral Palsy in
Iran: Association with socio-economic status, marital satisfaction and fatigue. Disability and Rehabilitation, 35(10), 803-808.
Khaiyom, J. H. A. (2020). Managing mental health in pandemic COVID-19 and movement control order. The Malaysian Journal of Medical Sciences,
27(4), 147-153.
Leonard, B., Brust, J. D., & Sapienza, J. J. (1992). Financial and time costs to parents of severely disabled children. Public Health Reports, 107(3), 302–
312.
Lewis, S., Kagan, C., Heaton, P., & Cranshaw, M. (1999). Economic and psychological benefits from employment: The experiences and perspectives of
mothers of disabled children. Disability & Society, 14(4), 561-575.
Mahoney, J., & Goerts, G. (2006). A tale of two cultures: Contrasting quantitative and qualitative research. Political Analysis, 14(1), 227–249.
Omar, A. R. C., Ishak, S., & Jusoh, M. A. (2020). The impact of COVID-19 Movement Control Order on SMEs’ businesses and survival strategies.
Geografia-Malaysian Journal of Society and Space, 16(2), 139-150.
Park, E. Y., & Nam, S. J. (2019). Time burden of caring and depression among parents of individuals with cerebral palsy. Disability and Rehabilitation,
41(13), 1508-1513.
PMO. (2020). PRIHATIN economic stimulus package. https://www.pmo.gov.my/prihatin-economic-stimulus-package/
Rahman, S. (2021, July 8). Malaysia’s white flag movement: Symbol of hope and helping each other. Channel News Asia.
https://www.channelnewsasia.com/commentary/ commentary-malaysias-white-flag-movement-symbol-hope-and-helping-each-other-2030226.
Ritchie, J., Spencer, L., & O’Connor, W. (2003). Carrying out qualitative analysis. In J. Ritchie & J. Lewis (Eds.), Qualitative research practice: A guide for
social science students and researchers (pp. 219–262). Sage Publications.
Reid, A., Imrie, H., Brouwer, E., Clutton, S., Evans, J., Russell, D., & Bartlett, D. (2011). “If I knew then what I know now”: Parents’ reflections on raising a
child with Cerebral Palsy. Physical & Occupational Therapy in Paediatrics, 31(2), 169-183.
Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, … Jacobsson, B. (2007). A report: The definition and classification of Cerebral
Palsy April 2006. Developmental Medicine and Child Neurology, 109(1), 8-14.
Sundarasen, S., Chinna, K., Kamaludin, K., Nurunnabi, M., Baloch, G. M., Khoshaim, H. B., ... Sukayt, A. (2020). Psychological impact of COVID-19 and
lockdown among university students in Malaysia: Implications and policy recommendations. International Journal of Environmental Research and
Public Health, 17(17), 1-13.
Terra, V. C., Cysneiros, R. M., Schwartzman, J. S., Teixeira, M. C., Arida, R. M., Cavalheiro, E. A., … Albuquerque, M. (2011). Mothers of children with
Cerebral Palsy with or without epilepsy: A quality of life perspective. Disability and Rehabilitation, 33(5), 384-388.
Theodossiou, I. (1998). The effects of low-pay and unemployment on psychological well-being: A logistic regression approach. Journal of Health
Economics, 17(1), 85-104.
UNICEF. (2020). Impact of COVID-19 on vulnerable children and families in Malaysia.
https://www.unicef.org/malaysia/media/1916/file/Impact%20of%20COVID19%20on%20Vulnerable%20Children%20&%20Families%20in%20Malaysia.
Whittingham, K., Wee, D., Sanders, M., & Boyd, R. (2011). Responding to the challenges of parenting a child with Cerebral Palsy: A focus group.
Disability and Rehabilitation, 33(17-18), 1557-1567.
Yunus, M. Y. (2021, January 31). Kes dera kanak-kanak meningkat. Sinar Harian
Online.https://www.sinarharian.com.my/article/121703/BERITA/Nasional/Kes-dera-kanak-kanak-meningkat
Zainal, H. (2020, March 19). Take care of your mental health. The Star Online. https://www.thestar.com.my/news/nation/2020/03/19/take-care-of-your-
mental-health.
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2023-01-31
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Challenges experienced by mothers of children with cerebral palsy during the movement control order (lockdown) in Malaysia: A qualitative study. (2023). Journal of Nusantara Studies (JONUS), 8(1), 246-269. https://doi.org/10.24200/jonus.vol8iss1pp246-269
