TO Impacto Da Pandemıa Nos Cuıdadores De Pessoas Com Perturbações Do Espectro Do Autısmo: uma revisão de escopo

Öz

Introduction: People with Autism Spectrum Disorders (ASD) have difficulty adapting to changes and new routines, especially in crisis situations such as a pandemic. This provides caregivers with greater responsibility and emotional stress, which can have negative consequences for their mental health. Therefore, it is crucial to create coping and mental health promotion strategies in this population. We aim to reflect on the impact of the pandemic on the mental health of caregivers of people with ASD and identify strategies that can be adopted and preventive measures. Material and Methods: a scoping review of the literature published on the topic using PubMed/MEDLINE database. Results: The results highlight the emotional stress experienced by caregivers of people with ASD during the COVID-19 pandemic. The interruption of support in health services, the closure of schools and socio-occupational support institutions and domestic demands were some of the challenges identified. The role of continuity of care for families of people with ASD during the pandemic and the need to implement flexible and timely support programs is highlighted. Telemedicine was one of the most highlighted interventions for the continuity of care and the implementation of support measures for caregivers. Conclusions: The COVID-19 pandemic has negatively affected the mental health of people with ASD and their caregivers. It is important to drive the expansion and development of support programs and adapted interventions. Multidisciplinary work is needed to overcome the challenges imposed by the pandemic, both at the current moment and in the post-pandemic period.

Anahtar Kelimeler

• Covid-19
• Autism spectrum disorder
• Autism
• caregivers
• parents
• mental health

Salgının Otizm Spektrum Bozukluğu Olan Kişilerin Bakıcıları Üzerindeki Etkisi: bir kapsam incelemesi

Öz

Introdução: Pessoas com Perturbações do Espectro do Autismo (PEA) têm dificuldade de adaptação às mudanças e novas rotinas, principalmente em situações de crise como uma pandemia. Tal proporciona maior responsabilidade e stress emocional aos cuidadores, podendo ter consequências negativas para a sua saúde mental. Portanto, é crucial criar estratégias de coping e de promoção de saúde mental nesta população. Pretende-se fazer uma reflexão sobre o impacto da pandemia na saúde mental dos cuidadores de pessoas com PEA e identificar estratégias que podem ser adotadas e medidas preventivas.Material e Método: revisão de escopo da literatura publicada sobre o tópico na base de dados PubMed/MEDLINE. Resultados: Os resultados realçam o stress emocional vivenciado pelos cuidadores de pessoas com PEA durante a pandemia da COVID-19. A interrupção do suporte nos serviços de saúde, o encerramento de escolas e de instituições de apoio socio-ocupacional e as demandas domésticas, foram alguns dos desafios identificados. Destaca-se o papel da continuidade dos cuidados para famílias de pessoas com PEA durante a pandemia e a necessidade de implementar programas de suporte flexíveis e oportunos. A telemedicina, foi das intervenções mais realçadas para a continuidade dos cuidados e implementação de medidas de apoio e suporte dos cuidadores. Conclusões: A pandemia da COVID-19 afetou negativamente a saúde mental de pessoas com PEA e dos seus cuidadores. É importante impulsionar a expansão e desenvolvimento de programas de apoio e intervenções adaptadas. É necessário trabalho multidisciplinar para ultrapassar os desafios impostos pela pandemia, tanto no momento atual, como no período pós-pandémico.

Anahtar Kelimeler

• Covid-19
• Otizm spektrum bozukluğu
• Otizm
• Bakıcılar
• Ebeveynler
• Ruh sağlığı

Kaynakça

1. Akhani, A., Dehghani, M., Gharraee, B., & Shooshtari, M. H. (2021). Parent training intervention for autism symptoms, functional emotional development, and parental stress in children with autism disorder: A randomized clinical trial. Asian Journal of Psychiatry, 62, 102735. doi:10.1016/j.ajp.2021.102735
2. 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. doi:10.1016/j.ridd.2020.103822
3. 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. doi:10.1016/j.ridd.2021.103873
4. Bhat, A. (2021). Analysis of the SPARK study COVID-19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services. Autism Research, 14(11), 2454-2470. doi:10.1002/aur.2618
5. Chan, R. C. H., & Fung, S. C. (2021). Elevated Levels of COVID-19-Related Stress and Mental Health Problems Among Parents of Children with Developmental Disorders During the Pandemic. Journal of autism and developmental disorders, 52(3), 1314–1325. doi:10.1007/s10803-021-05004-w
6. Chen, S. D., Yu, Y., Li, X. K., Chen, S. Q., & Ren, J. (2021). Parental Self-Efficacy and Behavioral Problems in Children with Autism During COVID-19: A Moderated Mediation Model of Parenting Stress and Perceived Social Support. Psychology Research and Behavior Management, 14, 1291-1301. doi:10.2147/prbm.S327377
7. Corbett, B. A., Muscatello, R. A., Klemencic, M. E., & Schwartzman, J. M. (2021). The impact of COVID-19 on stress, anxiety, and coping in youth with and without autism and their parents. Autism Research, 14(7), 1496-1511. doi:10.1002/aur.2521
8. Corona, L. L., Stainbrook, J. A., Simcoe, K., Wagner, L., Fowler, B., Weitlauf, A. S., et al. (2021). Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery. Journal of Neurodevevelpmental Disorders, 13(1), 38. doi:10.1186/s11689-021-09387-w

9. Dababnah, S., Kim, I., Wang, Y., & Reyes, C. (2021). Brief Report: Impact of the COVID-19 Pandemic on Asian American Families with Children with Developmental Disabilities. Journal of Developmental and Physical Disabilities, 1-14. doi:10.1007/s10882-021-09810-z
10. Degli Espinosa, F., Metko, A., Raimondi, M., Impenna, M., & Scognamiglio, E. (2020). A Model of Support for Families of Children With Autism Living in the COVID-19 Lockdown: Lessons From Italy. Behavior Analysis in Practice, 13(3), 1-9. doi:10.1007/s40617-020-00438-7
11. 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, 103790. doi:10.1016/j.ridd.2020.103790
12. Friesen, K. A., Weiss, J. A., Howe, S. J., Kerns, C. M., & McMorris, C. A. (2021). Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study. Journal of autism and developmental disorders, 1-11. doi:10.1007/s10803-021-05177-4
13. Gillespie-Smith, K., McConachie, D., Ballantyne, C., Auyeung, B., & Goodall, K. (2021). The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK. Journal of autism and developmental disorders, 1-15. doi:10.1007/s10803-021-05132-3
14. Iovino, E. A., Caemmerer, J., & Chafouleas, S. M. (2021). Psychological distress and burden among family caregivers of children with and without developmental disabilities six months into the COVID-19 pandemic. Research in Developmental Disabilities, 114, 103983. doi:10.1016/j.ridd.2021.103983
15. Kalb, L. G., Badillo-Goicoechea, E., Holingue, C., Riehm, K. E., Thrul, J., Stuart, E. A., et al. (2021). Psychological distress among caregivers raising a child with autism spectrum disorder during the COVID-19 pandemic. Autism Research, 14(10), 2183-2188. doi:10.1002/aur.2589
16. Ketcheson, L. R., & Pitchford, E. A. (2021). Promoting physical activity participation and nutrition education through a telehealth intervention for children on the autism spectrum and their caregivers. Contemporary Clinical Trials, 107, 106496. doi:10.1016/j.cct.2021.106496
17. Khan, Y. S., Khan, A. W., Tahir, M. E., Hammoudeh, S., Shamlawi, M. A., & Alabdulla, M. (2021). The impact of COVID-19 pandemic social restrictions on individuals with autism spectrum disorder and their caregivers in the Stateof Qatar: A cross-sectional study. Research in Developmental Disabilities, 119, 104090. doi:10.1016/j.ridd.2021.104090
18. Levante, A., Petrocchi, S., Bianco, F., Castelli, I., Colombi, C., Keller, R., et al. (2021). Psychological Impact of COVID-19 Outbreak on Families of Children with Autism Spectrum Disorder and Typically Developing Peers: An Online Survey. Brain Sciences, 11(6). doi:10.3390/brainsci11060808
19. Lim, T. S. H., Tan, M. Y., Aishworiya, R., Kang, Y. Q., Koh, M. Y., Shen, L., & Chong, S. C. (2021). Factors Contributing to Psychological Ill-Effects and Resilience of Caregivers of Children with Developmental Disabilities During a Nation-wide Lockdown During the COVID-19 Pandemic. Journal of autism and developmental disorders, 1-11. doi:10.1007/s10803-021-05180-9
20. Liu, G., Wang, S., Liao, J., Ou, P., Huang, L., Xie, N., et al. (2021). The Efficacy of WeChat-Based Parenting Training on the Psychological Well-being of Mothers With Children With Autism During the COVID-19 Pandemic: Quasi-Experimental Study. JMIR Mental Health, 8(2), e23917. doi:10.2196/23917
21. Lugo-Marín, J., Gisbert-Gustemps, L., Setien-Ramos, I., Español-Martín, G., Ibañez-Jimenez, P., Forner-Puntonet, M., et al. (2021). COVID-19 pandemic effects in people with Autism Spectrum Disorder and their caregivers: Evaluation of social distancing and lockdown impact on mental health and general status. Research in autism spectrum disorders, 83, 101757. doi:10.1016/j.rasd.2021.101757
22. 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. doi:10.1007/s10803-020-04760-5
23. 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. doi:10.1016/j.ridd.2020.103851
24. Pecor, K. W., Barbayannis, G., Yang, M., Johnson, J., Materasso, S., Borda, M., et al. (2021). Quality of Life Changes during the COVID-19 Pandemic for Caregivers of Children with ADHD and/or ASD. Internacional Journal Environmental Research and Public Health, 18(7). doi:10.3390/ijerph18073667
25. Polónyiová, K., Belica, I., Celušáková, H., Janšáková, K., Kopčíková, M., Szapuová, Ž., & Ostatníková, D. (2021). Comparing the impact of the first and second wave of COVID-19 lockdown on Slovak families with typically developing children and children with autism spectrum disorder. Autism. doi:10.1177/13623613211051480
26. Provenzi, L., Grumi, S., Gardani, A., Aramini, V., Dargenio, E., Naboni, C., et al. (2021). Italian parents welcomed a telehealth family-centred rehabilitation programme for children with disability during COVID-19 lockdown. Acta Paediatrica, 110(1), 194-196. doi:10.1111/apa.15636
27. Samadi, S. A., Bakhshalizadeh-Moradi, S., Khandani, F., Foladgar, M., Poursaid-Mohammad, M., & McConkey, R. (2020). Using Hybrid Telepractice for Supporting Parents of Children with ASD during the COVID-19 Lockdown: A Feasibility Study in Iran. Brain Science, 10(11). doi:10.3390/brainsci10110892
28. Tarbox, C. M., Silverman, E. A., Chastain, A. N., Little, A., Bermudez, T. L., & Tarbox, J. (2020). Taking ACTion: 18 Simple Strategies for Supporting Children With Autism During the COVID-19 Pandemic. Behavior Analysis in Practice, 14(4), 1-29. doi:10.1007/s40617-020-00448-5
29. Tokatly Latzer, I., Leitner, Y., & Karnieli-Miller, O. (2021). Core experiences of parents of children with autism during the COVID-19 pandemic lockdown. Autism, 25(4), 1047-1059. doi:10.1177/1362361320984317
30. Vallefuoco, E., Purpura, G., Gison, G., Bonifacio, A., Tagliabue, L., Broggi, F., et al. (2021). A Multidisciplinary Telerehabilitation Approach for Supporting Social Interaction in Autism Spectrum Disorder Families: An Italian Digital Platform in Response to COVID-19. Brain Science, 11(11). doi:10.3390/brainsci11111404
31. Wang, L., Li, D., Pan, S., Zhai, J., Xia, W., Sun, C., & Zou, M. (2021). The relationship between 2019-nCoV and psychological distress among parents of children with autism spectrum disorder. Global Health, 17(1), 23. doi:10.1186/s12992-021-00674-8
32. White, S. W., Stoppelbein, L., Scott, H., & Spain, D. (2021). It took a pandemic: Perspectives on impact, stress, and telehealth from caregivers of people with autism. Research in Developmental Disabilities, 113, 103938. doi:10.1016/j.ridd.2021.103938
33. Yi, Z., & Dixon, M. R. (2021). Developing and Enhancing Adherence to a Telehealth ABA Parent Training Curriculum for Caregivers of Children with Autism. Behavior Analysis in Practice, 14(1), 58-74. doi:10.1007/s40617-020-00464-5