Challenges of Parents of Children with Special Needs in the New Normal
Renj BG Borro | Emma Ceballo
Discipline: Education
Abstract:
The study focused on the challenges, coping strategies and significant insights of parents of children
with special needs during the pandemic. The study utilized a qualitative research method and
phenomenological approach. Snowball sampling technique was used to reach out the six (6) female
parents of children with special needs residing in General Santos City. Using thematic analysis, the
result of the study shows that the parents of children with special needs experienced different
challenges during the pandemic. The parents experienced increased in caregiving responsibilities
towards their children, difficulty with limited to no virtual learning, social isolation and financial
strain. Moreover, building a support network, creating a structured activities and routine for their
children, as well as optimism and acceptance were the coping strategies used by the parents in facing
their challenges during the pandemic. Also, the significant insights of the parents during the pandemic
were realizing the importance of acceptance and flexibility and the need for community, as well as
patience and understanding. Determining the challenges, coping strategies and insights of the parents
of children with special needs will be beneficial for themselves and to other parents as well in order to
develop effective parenting strategies towards their children.
References:
- Alhuzimi, T. (2021). Stress and emotional wellbeing of parents due to change in routine for children with Autism Spectrum Disorder (ASD) at home during COVID-19 pandemic in Saudi Arabia. Research in Developmental Disabilities, 108, 103822.
- Althiabi, Y. (2021). Attitude, anxiety and perceived mental health care needs among parents of children with Autism Spectrum Disorder (ASD) in Saudi Arabia during COVID-19 pandemic. Research in Developmental Disabilities, 111, 103873.
- Ameis, S. H., Lai, M. C., Mulsant, B. H., & Szatmari, P. (2020). Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism, 11(1), 61. https://doi.org/10.1186/s13229-020-00365-y
- Antonio, J. (2021, April 8). Of challenges and hope: Living in the autism spectrum during the pandemic. ABS. https://news.abs-cbn.com/life/04/08/21/of-challenges-and-hope-living-in-the-autism-spectrum-during-the-pandemic
- Arif, A., Ashraf, F., & Nusrat, A. (2021). Stress and coping strategies in parents of children with special needs. Labour, 32, 20.
- Asbury K, Fox L, Deniz E, Code A, Toseeb U. How is covid-19 affecting the mental health of children with special educational needs and disabilities and their families? J Aut Dev Disord. (2021) 51:1772–80. doi: 10.1007/s10803-02004577-2
- Autism Speaks. (2020, March 20). How to cope with disrupted family routines during COVID-19.. https://www.autismspeaks.org/news/how-cope-disrupted-family-routines-during-covid-19
- Bekhet, A. K., Johnson, N. L., & Zauszniewski, J. A. (2012). Resilience in family members of persons with autism spectrum disorder: A review of the literature. Issues in mental health nursing, 33(10), 650-656.
- Biggs, A., Brough, P., & Drummond, S. (2017). Lazarus and Folkman's psychological stress and coping theory. In C. L. Cooper & J. C. Quick (Eds.), The handbook of stress and health: A guide to research and practice (pp. 351–364). Wiley Blackwell. doi.org/10.1002/9781118993811.ch21 bin
- 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. Lancet, 395(10227), 912–920. https://doi.org/10.1016/S0140-6736(20)30460-8
- Brown, S. M., Doom, J. R., Lechuga-Pena, S., Watamura, S. E., & Koppels, T. (2020). Stress and parenting during the global COVID-19 pandemic. Child Abuse & Neglect, 110(Pt 2), 104699. https://doi.org/10.1016/j.chiabu.2020.104699
- Busetto, L., Wick, W., & Gumbinger, C. (2020). How to use and assess qualitative research methods. Neurological Research and practice, 2, 1-10.
- Cacioppo, M., Bouvier, S., Bailly, R., Houx, L., Lempereur, M., Mensah-Gourmel, J., ... & ECHO Group. (2020). Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey. Annals of physical and rehabilitation medicine.
- Cahapay, M. B. (2020). How Filipino parents home educate their children with autism during COVID-19 period. International Journal of Developmental Disabilities, 14.
- Chaturvedi, S. K. Covid-19, Coronavirus and Mental Health Rehabilitation at Times of Crisis. Journal of Psychosocial Rehabilitation and Mental Health, 1.
- Chu, Shin Ying, Siti Nor Syamim Aqila binti Mohd Normal, Grace E. McConnell, Joo Siang Tan, and Susheel Kaur Dhillon Joginder Singh. "Challenges faced by parents of children with autism spectrum disorder in Malaysia." Speech, Language and Hearing 23, no. 4 (2020): 221-231.
- Churiyah, M., Sholikhan, S., Filianti, F., & Sakdiyyah, D. A. (2020). Indonesia education readiness conducting distance learning in Covid-19 pandemic situation. International Journal of Multicultural and Multireligious Understanding, 7(6), 491-507.
- Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Zoccante, L. (2020). Psychosocial and behavioral impact of COVID-19 in autism Spectrum disorder: An online parent survey. Brain Sciences, 10(6), 341. https://doi.org/10.3390/brainsci10060341
- Conti, E., Chericoni, N., Costanzo, V., Lasala, R., Mancini, A., Prosperi, M., ... & Apicella, F. (2020). Moving Toward Telehealth Surveillance Services for Toddlers at Risk for Autism During the COVID-19 Pandemic. Frontiers in Psychiatry, 11.
- Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory into practice, 39(3), 124-130.
- Daks, J. S., Peltz, J. S., & Rogge, R. D. (2020). Psychological flexibility and inflexibility as sources of resiliency and risk during a pandemic: Modeling the cascade of COVID-19 stress on family systems with a contextual behavioral science lens. Journal of Contextual Behavioral Science, 18, 16–27. https://doi.org/10.1016/j.jcbs.2020.08.003
- Dukes, D., Van Herwegen, J., Alessandri, M., Al Nemary, F., Rad, J. A., Lavenex, P. B., ... & Samson, A. (2021). Introducing the COVID-19 crisis Special Education Needs Coping Survey.
- Eapen, V., Hiscock, H., & Williams, K. (2020). Adaptive innovations to provide services to children with developmental disabilities during the COVID‐19 pandemic. Journal of paediatrics and child health.
- Epperson, S. (2020, July 31). Special needs families face increased financial pressure in covid-19 crisis. this can help. CNBC. https://www.cnbc.com/2020/07/31/special-needs-families-face-increased-financial-pressure-in-covid-19-crisis.html
- Ersoy, K., Altin, B., Sarikaya, B. B., & Ozkardas, O. G. (2020). The comparison of impact of health anxiety on dispositional Hope and psychological well-being of mothers who have children diagnosed with autism and mothers who have Normal children, in Covid-19 pandemic. Sosyal Bilimler Araştırma Dergisi, 9(2), 117–126.
- Eshraghi, A. A., Li, C., Alessandri, M., Messinger, D. S., Eshraghi, R. S., Mittal, R., & Armstrong, F. D. (2020). COVID-19: overcoming the challenges faced by individuals with autism and their families. The Lancet Psychiatry, 7(6), 481-483.
- Feder, A., Fred-Torres, S., Southwick, S. M., & Charney, D. S. (2019). The biology of human resilience: opportunities for enhancing resilience across the life span. Biological psychiatry, 86(6), 443-453.
- Fegert, J. M., Vitiello, B., Plener, P. L., & Clemens, V. (2020). Challenges and burden of the Coronavirus 2019 (COVID-19) pandemic for child and adolescent mental health: a narrative review to highlight clinical and research needs in the acute phase and the long return to normality. Child and adolescent psychiatry and mental health, 14, 1-11.
- Furar, E., Wang, F., Durocher, J. S., Ahn, Y. A., Memis, I., Cavalcante, L., ... & Eshraghi, A. A. (2022). The impact of COVID-19 on individuals with ASD in the US: Parent perspectives on social and support concerns. Plos one, 17(8), e0270845.
- Golberstein, E., Gonzales, G., & Meara, E. (2019). How do economic downturns affect the mental health of children? Evidence from the National Health Interview Survey. Health economics, 28(8), 955–970. https://doi.org/10.1002/hec.3885
- Greenway, C. W., & Eaton‐Thomas, K. (2020). Parent experiences of home‐schooling children with special educational needs or disabilities during the coronavirus pandemic. British Journal of Special Education.
- Iacob, C. I., Avram, E., Cojocaru, D., & Podina, I. R. (2020). Resilience in familial caregivers of children with developmental disabilities: a meta-analysis. Journal of Autism and Developmental Disorders, 50(11), 4053-4068.
- Imran, N., Zeshan, M., & Pervaiz, Z. (2020). Mental health considerations for children & adolescents in COVID-19 Pandemic. Pakistan journal of medical sciences, 36(COVID19-S4), S67.
- Javed, B., Sarwer, A., Soto, E. B., & Mashwani, Z. U. R. (2020). The coronavirus (COVID‐19) pandemic's impact on mental health. The International journal of health planning and management, 35(5), 993-996.
- Jones, L., Gold, E., Totsika, V., Hastings, R. P., Jones, M., Griffiths, A., & Silverton, S. (2018). A mindfulness parent well-being course: Evaluation of outcomes for parents of children with autism and related disabilities recruited through special schools. European Journal of Special Needs Education, 33(1), 16-30.
- Karpman, M., Gonzalez, D., & Kenney, G. M. (2020). Parents are struggling to provide for their families during the pandemic. Washington, DC: Urban Institute.
- Kawabe, K., Hosokawa, R., Nakachi, K., Yoshino, A., Horiuchi, F., & Ueno, S. I. (2020). Making brochure of Coronavirus disease (COVID‐19) for children with autism spectrum disorder and their family members. Psychiatry and Clinical Neurosciences.
- Kemp, G., Smith, M., & Segal, J. (2023, February 23). Helping children with learning disabilities . HelpGuide.org. https://www.helpguide.org/articles/autism-learning-disabilities/helping-children-with-learning-disabilities.htm
- Kong, M., & Thompson, L. A. (2020). Considerations for Young Children and Those With Special Needs as COVID-19 Continues. JAMA pediatrics, 174(10), 10121012.
- Lestari, R., & Pratisti, W. D. (2019). Gratitude And Optimism In Parents Of Children With Autism Spectrum Disorders (ASD). South East Asia Journal Of Contemporary Business, Economics And Law, 20(6), 9-16.
- Maguire, M., & Delahunt, B. (2017). Doing a thematic analysis: A practical, step-by-step guide for learning and teaching scholars. All Ireland Journal of Higher Education, 9(3).
- Manning, J., Billian, J., Matson, J., Allen, C., & Soares, N. (2021). Perceptions of families of individuals with autism spectrum disorder during the COVID-19 crisis. Journal of autism and developmental disorders, 51(8), 2920-2928.
- Martinsone, B., & Tzivian, L. (2021). Differences in Stress and Coping During the COVID-19 Pandemic in Families With and Without Children With Developmental Disorders or Chronic Conditions. Frontiers in public health, 9, 704577. https://doi.org/10.3389/fpubh.2021.704577
- McDevitt, S. E. (2021). While quarantined: An online parent education and training model for families of children with autism in China. Research in Developmental Disabilities, 109, 103851.
- Mishra, M. R. D., & Vij, S. (2020). Challenges in Synchronous Online Education during Corona virus Pandemic in Context of Developing Countries: Parents’ Perception in Indian Urban Schools. Solid State Technology, 4685-4714.
- Morse, J. M. (1994). Designing funded qualitative research. In Denizin, N. K. & Lincoln, Y. S., Handbook of qualitative research (2nd Ed). Thousand Oaks, CA: Sage.
- Mujahid, I. (2022). Social skills and behavior autism spectrum disorder during covid-19 Pandemic. Jurnal Konseling dan Pendidikan, 10(1), 167-175.
- Munhall, P. L. (2012). A Phenomenological Method in Munhall, P. L. (Ed.), Nursing Research: A qualitative perspective (5th Ed., pp. 113-175). Ontario: Jones and Bartlett Publications.
- Mutluer, T., Doenyas, C., & Aslan Genc, H. (2020). Behavioral implications of the Covid-19 process for autism spectrum disorder, and individuals' comprehension of and reactions to the pandemic conditions. Frontiers in psychiatry, 11, 561882.
- Navas, P., Amor, A. M., Crespo, M., Wolowiec, Z., & Verdugo, M. Á. (2021). Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective. Research in Developmental Disabilities, 108, 103813.
- Neece, C., McIntyre, L. L., & Fenning, R. (2020). Examining the impact of COVID‐19 in ethnically diverse families with young children with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 64(10), 739-749.
- Northcentral University. (2023). Trustworthiness of Qualitative Data. Home - Chapter 4 - LibGuides at Northcentral University. Retrieved April 22, 2023, from https://resources.nu.edu/c.php?g=1007180
- Obbarius, N., Fischer, F., Liegl, G., Obbarius, A., & Rose, M. (2021). A modified version of the transactional stress concept according to Lazarus and Folkman was confirmed in a psychosomatic inpatient sample. Frontiers in psychology, 12, 584333.
- Ooi, Y. P., Weng, S. J., Magiati, I., Ang, R. P., Goh, T. J., Fung, D. S., & Sung, M. (2016). Factors influencing agreement between parent and child reports of anxiety symptoms among children with high-functioning autism spectrum disorders. Journal of Developmental and Physical Disabilities, 28(3), 407–424. https://doi.org/10.1007/s10882-016-9481-5
- Parenteau, C., Bent, S., Hossain, B., Chen, Y., Widjaja, F., Breard, M., & Hendren, R. (2020). the experience of parents of children with autism spectrum disorder during the COVID-19 pandemic: A qualitative analysis.
- Park, C. L., Russell, B. S., Fendrich, M., Finkelstein-Fox, L., Hutchison, M., & Becker, J. (2020). Americans' COVID-19 stress, coping, and adherence to CDC guidelines. Journal of General Internal Medicine, 35(8), 2296–2303. https://doi.org/10.1007/s11606-020-05898-9
- Pellicano, E., & Stears, M. (2020). The hidden inequalities of COVID 19. Autism, 24(6), 1309–1310. https://doi.org/10.1177/1362361320927590
- Pellicano, L., Brett, S., den Houting, J., Heyworth, M., Magiati, I., Steward, R., ... & Stears, M. (2020). The everyday experiences of autistic people and their families during COVID-19.
- Pepperell, T. A., Paynter, J., & Gilmore, L. (2018). Social support and coping strategies of parents raising a child with autism spectrum disorder. Early Child Development and Care, 188(10), 1392-1404.
- Polit, D. F., & Beck, C. T. (2010). Essentials of Nursing Research: Appraising Evidence for Nursing Practice (7th ed.). Philadelphia: Lippincott Williams and Wilkins Company.
- Rakap, S., Vural-Batik, M., Kalkan, S., Karnas, M., Sari, H. I., & Bayrakdar, U. (2022, November). The hidden (overlooked) impact of living through a pandemic: How parents of children with disabilities fared during COVID-19?. In Frontiers in Education (Vol. 7, p. 827230). Frontiers.
- Ren, J., Li, X., Chen, S., Chen, S., & Nie, Y. (2020). The Influence of Factors Such as Parenting Stress and Social Support on the State Anxiety in Parents of Special Needs Children During the COVID-19 Epidemic. Frontiers in psychology, 11, 565393. https://doi.org/10.3389/fpsyg.2020.565393
- Riegler LJ, Raj SP, Moscato EL, Narad ME, Kincaid A, Wade SL. Pilot trial of a telepsychotherapy parenting skills intervention for veteran families: implications for managing parenting stress during Covid-19. J Psychother Integr. (2020) 30:290–303. doi: 10.1037/int0000220
- Schwartzman, J. M., Millan, M. E., Uljarevic, M., & Gengoux, G. W.(2021). Resilience intervention for parents of children with autism: Findings from an RCT of the AMOR method. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-04977-y.
- Scott, P. A. (2013). Ethical Principles in Health Care Research. In Curtis E. A. & Drennan J. (Eds.), Quantitative Health Research: Issues and Methods (1st ed.). (p.77-90). Berkshire, England: Open University Press, McGraw- Hill Education.
- Shepherd, D., Landon, J., Taylor, S., & Goedeke, S. (2018). Coping and care-related stress in parents of a child with autism spectrum disorder. Anxiety, Stress, and Coping, 31(3), 277–290. https://doi.org/10.1080/10615806.2018.1442614
- Smith, M., Segal, J., & Hutman, T. (2023, June 5). Helping your child with autism thrive Smith. HelpGuide.org. https://www.helpguide.org/articles/autism-learning-disabilities/helping-your-child-with-autism-thrive.htm
- Sonnenschein, S., Stites, M., & Krasniqi, B. (2023). Factors Affecting Children’s Learning During COVID-19.
- Spinelli, M., Lionetti, F., Setti, A., & Fasolo, M. (2020). Parenting stress during the COVID-19 outbreak: Socioeconomic and environmental risk factors and implications for children emotion regulation. Family Process. https://doi.org/10.1111/famp.12601
- Stahl, N. A., & King, J. R. (2020). Expanding approaches for research: Understanding and using trustworthiness in qualitative research. Journal of Developmental Education, 44(1), 26-28.
- Ungar, M. (2015). Practitioner review: diagnosing childhood resilience–a systemic approach to the diagnosis of adaptation in adverse social and physical ecologies. Journal of child psychology and psychiatry, 56(1), 4-17.
- Van Tilburg, T. G., Steinmetz, S., Stolte, E., van der Roest, H., & de Vries, D. H. (2020). Loneliness and mental health during the COVID-19 pandemic: A study among Dutch older adults. The Journals of Gerontology: Series B.
- Vinisha, P., Raheemudheen, P. K., Gayathri, M. K., & Abhishek, M. S. (2020). Life in the Times of Covid-19: A Guide for Parents of Children with Disabilities. https://unesdoc.unesco.org/ark:/48223/pf0000373374
- Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., ... & Cooper, V. (2020). Effect of the COVID‐19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1523-1533.