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Experiences of Mothers with Disabled Children During the COVID-19 Pandemic

Year 2023, Volume: 24 Issue: 1, 75 - 93, 01.03.2023
https://doi.org/10.21565/ozelegitimdergisi.933981

Abstract

Introduction: During the COVID-19 pandemic, conditions such as the limitation of resources and the difficulty of access led to disabled individuals and their families to become more vulnerable to the risks posed by the pandemic. Understanding the experiences, difficulties, and needs of individuals with disabilities and their families during the pandemic, as well as evaluating the effects of the crisis, are essential in creating interventions to mitigate these difficulties. This study has aimed to examine the experiences of mothers, who have the burden of care in families with disabled children, during the COVID-19 pandemic.
Method: In the study, semi-structured interviews were conducted with mothers of children with disabilities (n = 14) using the phenomenological method, which is one of the qualitative research methods. In the data analysis, Miles and Huberman model was followed, and the codes and categories reflecting the investigated phenomenon were determined by using continuous comparison and phenomenological reduction methods.
Findings: According to the results of the study, the difficulties of the mothers' lives increased during the pandemic, and the perception of restrictions resulting from the measures against the pandemic, as well as the inadequacy of access to services, led to increased concern among mothers. The limited support for children with disabilities and their families, as well as their inability to meet their needs with their resources, caused mothers to feel exhausted. In addition to the difficulties they experienced, mothers stated that they had positive experiences as well, since they could spend more productive time with their family members, use digital resources, and feel stronger at the end of the process.
Discussion: Compelling experiences such as anxiety, feelings of inadequacy, fatigue, and restraint among mothers with disabled children show that these mothers are among the vulnerable individuals adversely affected by the COVID-19 pandemic. Although the pandemic period was challenging, mothers gained resilience in coping with the difficulties and adapted to the situation.
Conclusion and Suggestions: Based on the experiences of families with disabled members for possible future pandemics, services should be provided to facilitate family crisis management, education, advocacy, psychosocial counseling, and empowerment-based studies.

References

  • American Association of People with Disabilities. (2020, April 17). Over 400 organizations urge Department of Health and Human Services to issue guidance to prohibit discrimination during medical rationing. https://www.aapd.com/press-releases/civil-rights-letter-covid-medical-rationing/?fbclid=IwAR0uKHogSaq8zknb-gVKL9-oplHXyX1a1lGpyx306WHpr0ZQWoxSk2C1oM
  • BM (2018). Disability and development report: Realizing the sustainable development goals by, for and with persons with disabilities. Department of Economic and Social Affairs, United Nations, New York.
  • Carr, E. C., & Worth, A. (2001). The use of the telephone interview for research. NT research, 6(1), 511-524.
  • Cohen, A., & Mosek, A. (2019). “Power together”: Professionals and parents of children with disabilities creating productive partnerships. Child & Family Social Work, 24(4), 565-573.
  • Courtney, E., Kiernan, G., Guerin, S., Ryan, K., & McQuillan, R. (2018). Mothers' perspectives of the experience and impact of caring for their child with a life‐limiting neurodevelopmental disability. Child: care, health and development, 44(5), 704-710.
  • Çarpar, M. C. (2020). Sosyolojide iki temel niteliksel desen: Fenomenolojik ve etnografik araştırma. The Journal of Social Science, 4(8), 689-704.
  • Demirbilek, M. (2013). Zihinsel engelli bireylerin ve ailelerinin gereksinimleri. Turkish Journal of Family Medicine and Primary Care, 7(3), 58-64.
  • DSÖ (2002). Towards a Common Language for Functioning, Disability and Health ICF. The international classification of functioning, disability and health. https://www.who.int/classifications/icf/icfbeginnersguide.pdf
  • DSÖ (2020). Disability and Heatlh. https://www.who.int/news-room/fact-sheets/detail/disability-and-health
  • Engelli ve Yaşlı Hizmetleri Genel Müdürlüğü (2020). Yayın/ Kaynak. https://www.ailevecalisma.gov.tr/eyhgm/yayin-kaynak/
  • Eskytė, I., Lawson, A., Orchard, M., & Andrews, E. (2020). Out on the streets–crisis, opportunity and disabled people in the era of Covid-19: reflections from the UK. Alter, 14(4), 329-336.
  • Ferguson, N., Laydon, D., Nedjati Gilani, G., Imai, N., Ainslie, K., Baguelin, M., & Dighe, A. (2020). Report 9: Impact of non-pharmaceutical interventions (NPIs) to reduce COVID19 mortality and healthcare demand. Imperial College of London. Retrieved from https://www.imperial.ac.uk/media/imperial-college/medicine/sph/ide/gidafellowships/Imperial-College-COVID19-NPI-modelling-16-03-2020.pdf
  • Gilson, K. M., Johnson, S., Davis, E., Brunton, S., Swift, E., Reddihough, D., & Williams, K. (2018). Supporting the mental health of mothers of children with a disability: Health professional perceptions of need, role, and challenges. Child: care, health and development, 44(5), 721-729.
  • Goggin, G., & Ellis, K. (2020). Disability, communication, and life itself in the COVID-19 pandemic. Health Sociology Review, 29(2), 168-176.
  • Grossman, B. R., & Magaña, S. (2016). Introduction to the special issue: Family support of persons with disabilities across the life course, Journal of Family Social Work, 19:4, 237-251.
  • Inan Budak, M., Küçük, L., & Civelek, H. Y. (2018). Life Experiences of Mothers of Children with an Intellectual Disability: A Qualitative Study. Journal of Mental Health Research in Intellectual Disabilities, 11(4), 301-321.
  • Jalali, M., Shahabi, S., Bagheri Lankarani, K., Kamali, M., & Mojgani, P. (2020). COVID-19 and disabled people: perspectives from Iran. Disability & Society, 35(5), 844-847.
  • Kavanagh, A., Dickinson, H., Carey, G., Llewellyn, G., Emerson, E., Disney, G., & Hatton, C. (2020). Improving health care for disabled people in COVID-19 and beyond: lessons from Australia and England. Disability and health journal, 101050. https://doi.org/10.1016/j.dhjo.2020.101050
  • Kuper, H., Banks, L. M., Bright, T., Davey, C., & Shakespeare, T. (2020). Disability-inclusive COVID-19 response: What it is, why it is important and what we can learn from the United Kingdom’s response, Wellcome Open Research 2020, 5:79 https://doi.org/10.12688/wellcomeopenres.15833.1
  • Küçük, E. E., & Alemdar, D. K. (2018). Life satisfaction and psychological status of mothers with disabled children: a descriptive study. Community mental health journal, 54(1), 102-106.
  • Lafçı, D., Öztunç, D., Alparslan, Z. (2014). Determining the difficulties that parents of mentally retarded children encounter. Gümüşhane University Journal of Health Sciences, 3, 723-735.
  • Lee, S., & Kim, J. (2020). A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic. Disability & Society, 35(9), 1514-1519.
  • Lund, E. M., & Ayers, K. B. (2020). Raising awareness of disabled lives and health care rationing during the COVID-19 pandemic. Psychological Trauma: Theory, Research, Practice, and Policy. Vol. 12, No. S1, S210–S211 ISSN: 1942-9681 http://dx.doi.org/10.1037/tra0000673
  • Lund, E. M., Forber-Pratt, A. J., Wilson, C., & Mona, L. R. (2020). The COVID-19 pandemic, stress, and trauma in the disability community: A call to action. Rehabilitation Psychology, 65(4), 313-322.
  • McConnell, D., Savage, A., Breitkreuz, R. (2014). Resilience in families raising children with disabilities and behavior problems. Research in Developmental Disabilities. 35, 833-848.
  • Moustakas, C. (1994). Phenomenological research methods. Sage publications.
  • Nixon, C. L., & Cummings, E. M. (1999). Sibling disability and children's reactivity to conflicts involving family members. Journal of Family Psychology, 13(2), 274-285.
  • Sabatello, M., Landes, S. D., & McDonald, K. E. (2020). People with disabilities in COVID-19: Fixing our priorities. The American Journal of Bioethics, 20(7), 187-190.
  • Sakellariou, D., Malfitano, A. P. S., & Rotarou, E. S. (2020). Disability inclusiveness of government responses to COVID-19 in South America: a framework analysis study. International Journal for Equity in Health, 19(1), 1-10.
  • Tétreault, S., Blais‐Michaud, S., Marier Deschênes, P., Beaupré, P., Gascon, H., Boucher, N., & Carrière, M. (2014). How to support families of children with disabilities? An exploratory study of social support services. Child & Family Social Work, 19(3), 272-281.
  • Valles, T. E., Shoenhard, H., Zinski, J., Trick, S., Porter, M. A., & Lindstrom, M. R. (2020). Networks of Necessity: Simulating Strategies for COVID-19 Mitigation among Disabled People and Their Caregivers. arXiv preprint arXiv:2101.00060.
  • Yıldırım, A., & Şimşek, H. (2003). Sosyal bilimlerde nitel araştırma yöntemleri. Seçkin yayıncılık.
  • Ziapour, A., & Khosravi, B. (2020). Lived experience of mothers of children with disabilities: A qualitative study of Iran. Journal of Public Health, 1-7.

Engelli Çocuğa Sahip Annelerin COVID-19 Salgını Sürecindeki Deneyimleri

Year 2023, Volume: 24 Issue: 1, 75 - 93, 01.03.2023
https://doi.org/10.21565/ozelegitimdergisi.933981

Abstract

Giriş: COVID-19 salgını döneminde, kaynakların sınırlanması ve erişimin güçleşmesi gibi nedenler özel gereksinimli bireyler ve ailelerini salgının oluşturduğu risklere daha açık hale getirmektedir. Özel gereksinimli bireyler ve ailelerinin salgın sürecindeki deneyimlerini, yaşadıkları zorlukları ve ihtiyaçlarını anlamak ve kriz etkilerini değerlendirmek sürece uyum sağlamaları için müdahaleler oluşturmada hayati önem taşımaktadır. Bu çalışmanın amacı özel gereksinimli çocuğa sahip ailelerde bakım yükünü üstlenen annelerin COVID-19 salgını sürecindeki deneyimlerini incelemektir.
Yöntem: Çalışmada nitel araştırma yöntemlerinden fenomenolojik yöntem kullanılarak, özel gereksinimli çocukları olan annelerle (n = 14) yarı yapılandırılmış görüşmeler gerçekleştirilmiştir. Veri analizinde Miles ve Huberman modeli takip edilmiş ve sürekli karşılaştırma ve fenomenolojik indirgeme yöntemleri kullanılarak incelenen fenomeni yansıtan kod ve kategoriler ortaya çıkarılmıştır.
Bulgular: Çalışmanın sonuçlarına göre, annelerin yaşamlarının zorlukları bu süreçte artmış, salgına dönük önlemler sonucu oluşan kısıtlanma algısı ve hizmetlere erişimin yetersizliği anneler arasında kaygıların yükselmesine neden olmuştur. Özel gereksinimli çocukların ve ailelerinin destek kaynaklarının kısıtlanması ve ihtiyaçlarını kendi kaynakları ile karşılamadaki yetersizlikleri, annelerin kendilerini yorgun ve tükenmiş hissetmelerine yol açmıştır. Yaşadıkları zorlukların yanı sıra anneler bu süreçte aile bireyleriyle verimli vakit geçirebildikleri, dijital kaynakları kullandıkları ve süreç sonunda kendilerini güçlü hissettikleri yönünde görüş bildirmişlerdir.
Tartışma: Özel gereksinimli çocuğa sahip anneler arasında görülen kaygı, yetersizlik duygusu, yorgunluk, kısıtlanma gibi zorlayıcı deneyimler, bu annelerin COVID-19 salgınından olumsuz etkilenen kırılgan bireyler arasında yer aldıklarını göstermektedir. Salgın süreci zorlayıcı olsa da anneler zorluklarla başa çıkabilmede direnç kazanmış ve sürece uyum sağlamışlardır.
Sonuç ve Öneriler: Gelecekteki olası salgınlar için özel gereksinimli üyesi olan ailelerin deneyimleri temel alınarak bu bireylere yönelik bilgilendirme, savunuculuk, psikososyal danışmanlık, güçlendirme odaklı çalışmalarla birlikte ailede kriz yönetimini kolaylaştıracak hizmetler sunulmalıdır.

References

  • American Association of People with Disabilities. (2020, April 17). Over 400 organizations urge Department of Health and Human Services to issue guidance to prohibit discrimination during medical rationing. https://www.aapd.com/press-releases/civil-rights-letter-covid-medical-rationing/?fbclid=IwAR0uKHogSaq8zknb-gVKL9-oplHXyX1a1lGpyx306WHpr0ZQWoxSk2C1oM
  • BM (2018). Disability and development report: Realizing the sustainable development goals by, for and with persons with disabilities. Department of Economic and Social Affairs, United Nations, New York.
  • Carr, E. C., & Worth, A. (2001). The use of the telephone interview for research. NT research, 6(1), 511-524.
  • Cohen, A., & Mosek, A. (2019). “Power together”: Professionals and parents of children with disabilities creating productive partnerships. Child & Family Social Work, 24(4), 565-573.
  • Courtney, E., Kiernan, G., Guerin, S., Ryan, K., & McQuillan, R. (2018). Mothers' perspectives of the experience and impact of caring for their child with a life‐limiting neurodevelopmental disability. Child: care, health and development, 44(5), 704-710.
  • Çarpar, M. C. (2020). Sosyolojide iki temel niteliksel desen: Fenomenolojik ve etnografik araştırma. The Journal of Social Science, 4(8), 689-704.
  • Demirbilek, M. (2013). Zihinsel engelli bireylerin ve ailelerinin gereksinimleri. Turkish Journal of Family Medicine and Primary Care, 7(3), 58-64.
  • DSÖ (2002). Towards a Common Language for Functioning, Disability and Health ICF. The international classification of functioning, disability and health. https://www.who.int/classifications/icf/icfbeginnersguide.pdf
  • DSÖ (2020). Disability and Heatlh. https://www.who.int/news-room/fact-sheets/detail/disability-and-health
  • Engelli ve Yaşlı Hizmetleri Genel Müdürlüğü (2020). Yayın/ Kaynak. https://www.ailevecalisma.gov.tr/eyhgm/yayin-kaynak/
  • Eskytė, I., Lawson, A., Orchard, M., & Andrews, E. (2020). Out on the streets–crisis, opportunity and disabled people in the era of Covid-19: reflections from the UK. Alter, 14(4), 329-336.
  • Ferguson, N., Laydon, D., Nedjati Gilani, G., Imai, N., Ainslie, K., Baguelin, M., & Dighe, A. (2020). Report 9: Impact of non-pharmaceutical interventions (NPIs) to reduce COVID19 mortality and healthcare demand. Imperial College of London. Retrieved from https://www.imperial.ac.uk/media/imperial-college/medicine/sph/ide/gidafellowships/Imperial-College-COVID19-NPI-modelling-16-03-2020.pdf
  • Gilson, K. M., Johnson, S., Davis, E., Brunton, S., Swift, E., Reddihough, D., & Williams, K. (2018). Supporting the mental health of mothers of children with a disability: Health professional perceptions of need, role, and challenges. Child: care, health and development, 44(5), 721-729.
  • Goggin, G., & Ellis, K. (2020). Disability, communication, and life itself in the COVID-19 pandemic. Health Sociology Review, 29(2), 168-176.
  • Grossman, B. R., & Magaña, S. (2016). Introduction to the special issue: Family support of persons with disabilities across the life course, Journal of Family Social Work, 19:4, 237-251.
  • Inan Budak, M., Küçük, L., & Civelek, H. Y. (2018). Life Experiences of Mothers of Children with an Intellectual Disability: A Qualitative Study. Journal of Mental Health Research in Intellectual Disabilities, 11(4), 301-321.
  • Jalali, M., Shahabi, S., Bagheri Lankarani, K., Kamali, M., & Mojgani, P. (2020). COVID-19 and disabled people: perspectives from Iran. Disability & Society, 35(5), 844-847.
  • Kavanagh, A., Dickinson, H., Carey, G., Llewellyn, G., Emerson, E., Disney, G., & Hatton, C. (2020). Improving health care for disabled people in COVID-19 and beyond: lessons from Australia and England. Disability and health journal, 101050. https://doi.org/10.1016/j.dhjo.2020.101050
  • Kuper, H., Banks, L. M., Bright, T., Davey, C., & Shakespeare, T. (2020). Disability-inclusive COVID-19 response: What it is, why it is important and what we can learn from the United Kingdom’s response, Wellcome Open Research 2020, 5:79 https://doi.org/10.12688/wellcomeopenres.15833.1
  • Küçük, E. E., & Alemdar, D. K. (2018). Life satisfaction and psychological status of mothers with disabled children: a descriptive study. Community mental health journal, 54(1), 102-106.
  • Lafçı, D., Öztunç, D., Alparslan, Z. (2014). Determining the difficulties that parents of mentally retarded children encounter. Gümüşhane University Journal of Health Sciences, 3, 723-735.
  • Lee, S., & Kim, J. (2020). A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic. Disability & Society, 35(9), 1514-1519.
  • Lund, E. M., & Ayers, K. B. (2020). Raising awareness of disabled lives and health care rationing during the COVID-19 pandemic. Psychological Trauma: Theory, Research, Practice, and Policy. Vol. 12, No. S1, S210–S211 ISSN: 1942-9681 http://dx.doi.org/10.1037/tra0000673
  • Lund, E. M., Forber-Pratt, A. J., Wilson, C., & Mona, L. R. (2020). The COVID-19 pandemic, stress, and trauma in the disability community: A call to action. Rehabilitation Psychology, 65(4), 313-322.
  • McConnell, D., Savage, A., Breitkreuz, R. (2014). Resilience in families raising children with disabilities and behavior problems. Research in Developmental Disabilities. 35, 833-848.
  • Moustakas, C. (1994). Phenomenological research methods. Sage publications.
  • Nixon, C. L., & Cummings, E. M. (1999). Sibling disability and children's reactivity to conflicts involving family members. Journal of Family Psychology, 13(2), 274-285.
  • Sabatello, M., Landes, S. D., & McDonald, K. E. (2020). People with disabilities in COVID-19: Fixing our priorities. The American Journal of Bioethics, 20(7), 187-190.
  • Sakellariou, D., Malfitano, A. P. S., & Rotarou, E. S. (2020). Disability inclusiveness of government responses to COVID-19 in South America: a framework analysis study. International Journal for Equity in Health, 19(1), 1-10.
  • Tétreault, S., Blais‐Michaud, S., Marier Deschênes, P., Beaupré, P., Gascon, H., Boucher, N., & Carrière, M. (2014). How to support families of children with disabilities? An exploratory study of social support services. Child & Family Social Work, 19(3), 272-281.
  • Valles, T. E., Shoenhard, H., Zinski, J., Trick, S., Porter, M. A., & Lindstrom, M. R. (2020). Networks of Necessity: Simulating Strategies for COVID-19 Mitigation among Disabled People and Their Caregivers. arXiv preprint arXiv:2101.00060.
  • Yıldırım, A., & Şimşek, H. (2003). Sosyal bilimlerde nitel araştırma yöntemleri. Seçkin yayıncılık.
  • Ziapour, A., & Khosravi, B. (2020). Lived experience of mothers of children with disabilities: A qualitative study of Iran. Journal of Public Health, 1-7.
There are 33 citations in total.

Details

Primary Language English
Journal Section Articles
Authors

Emine Özmete 0000-0002-9264-5660

Melike Pak 0000-0002-4391-3024

Publication Date March 1, 2023
Published in Issue Year 2023 Volume: 24 Issue: 1

Cite

APA Özmete, E., & Pak, M. (2023). Experiences of Mothers with Disabled Children During the COVID-19 Pandemic. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 24(1), 75-93. https://doi.org/10.21565/ozelegitimdergisi.933981

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