Impact of COVID-19 outbreak on mental health and perceived strain among caregivers tending children with special needs

Sapna Dhiman, Pradeep Kumar Sahu, William R Reed, G Shankar Ganesh, Ramesh K Goyal, Shilpa Jain, Sapna Dhiman, Pradeep Kumar Sahu, William R Reed, G Shankar Ganesh, Ramesh K Goyal, Shilpa Jain

Abstract

Background: While COVID-19 outbreak has had adverse psychological effects in children with special needs, the mental state and burden on their caregivers during this pandemic has yet to be reported.

Aims: The objectives of this study were to describe the mental health status and the change in perceived strain among caregivers during the COVID-19 outbreak.

Methods and procedures: Two hundred sixty four caregivers completed an online survey that assessed demographics, use and perspective on tele-rehabilitation, homecare therapy, caregiver's strain and mental health.

Outcomes and results: The prevalence of depression, anxiety and stress symptoms were found to be 62.5 %, 20.5 % and 36.4 % respectively. A significant difference in caregiver strain (p < 0.001, effect size = 0.93) was observed during the outbreak compared to levels pre-outbreak (pre-outbreak strain was measured retrospectively). Caregivers not using tele-rehabilitation along with a perception of it being a poor medium for rehabilitation were at greater risks for poor mental health whereas a negative perception on homecare therapy were strongly associated with higher psychological symptoms and strain.

Conclusions and implications: This study identified a high prevalence of depression and significant change in strain displayed by caregivers during the COVID-19 outbreak. We identified several factors associated with poor mental health and perceived strain that can be used to help safeguard caregivers.

Keywords: COVID-19; Caregiver strain; Children with special needs; Mental health; Telerehabilitation.

Conflict of interest statement

The authors report no declarations of interest.

Copyright © 2020 Elsevier Ltd. All rights reserved.

Figures

Fig. 1
Fig. 1
Graph showing prevalence of depression, anxiety and stress symptoms with levels of severity among caregivers tending children with special needs (n = 264).
Fig. 2
Fig. 2
Graph showing mean change in CSI score before the outbreak (retrospectively reported) to during the outbreak.
https://www.ncbi.nlm.nih.gov/pmc/articles/instance/7538124/bin/fx1_lrg.jpg

References

    1. Ahmed M.Z., Ahmed O., Aibao Z., Hanbin S., Siyu L., Ahmad A. Epidemic of COVID-19 in China and associated psychological problems. Asian Journal of Psychiatry. 2020;51 doi: 10.1016/j.ajp.2020.102092. Advance online publication.
    1. Alexander R., Ravi A., Barclay H., Sawhney I., Chester V., Malcolm V., Brolly K., Mukherji K., Zia A., Tharian R., Howell A., Lane T., Cooper V., Langdon P.E. Guidance for the treatment and management of COVID‐19 among people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. 2020 doi: 10.1111/jppi.12352.
    1. Al-Farsi O.A., Al-Farsi Y.M., Al-Sharbati M.M., Al-Adawi S. Stress, anxiety, and depression among parents of children with autism spectrum disorder in Oman: A case-control study. Neuropsychiatric Disease and Treatment. 2016;12:1943–1951. doi: 10.2147/NDT.S107103.
    1. Batool S.S., Khurshid S. Factors associated with stress among parents of children with autism. Journal of the College of Physicians and Surgeons--Pakistan. 2015;25(10):752–756. doi: 10.2015/JCPSP.752756.
    1. Byrne M.W., Evan E., Goshin L.S., Erlich M.D., Kim J.H., Saroyan J.M., Zeltzer L.K. Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life. Palliative & Supportive Care. 2011;9(2):137–147. doi: 10.1017/S1478951511000010.
    1. Chauhan A., Sahu J.K., Jaiswal N., Kumar K., Agarwal A., Kaur J., Singh S., Singh M. Prevalence of autism spectrum disorder in Indian children: A systematic review and meta-analysis. Neurology India. 2019;67(1):100–104. doi: 10.4103/0028-3886.253970.
    1. Chauhan A., Singh M., Jaiswal N., Agarwal A., Sahu J.K., Singh M. Prevalence of cerebral palsy in Indian children: A systematic review and meta-analysis. Indian Journal of Pediatrics. 2019;86(12):1124–1130. doi: 10.1007/s12098-019-03024-0.
    1. Chen P., Mao L., Nassis G.P., Harmer P., Ainsworth B.E., Li F. Coronavirus disease (COVID-19): The need to maintain regular physical activity while taking precautions. Journal of Sport and Health Science. 2020;9(2):103–104. doi: 10.1016/j.jshs.2020.02.001.
    1. Chew N., Lee G., Tan B., Jing M., Goh Y., Ngiam N., Yeo L., Ahmad A., Ahmed Khan F., Napolean Shanmugam G., Sharma A.K., Komalkumar R.N., Meenakshi P.V., Shah K., Patel B., Chan B., Sunny S., Chandra B., Ong J.…Sharma V.K. A multinational, multicentre study on the psychological outcomes and associated physical symptoms amongst healthcare workers during COVID-19 outbreak. Brain, Behavior, and Immunity. 2020 doi: 10.1016/j.bbi.2020.04.049. S0889-1591(20)30523-30527. Advance online publication.
    1. Dantas L.O., Barreto R., Ferreira C. Digital physical therapy in the COVID-19 pandemic. Brazilian Journal of Physical Therapy. 2020 doi: 10.1016/j.bjpt.2020.04.006. S1413-3555(20)30402-0. Advance online publication.
    1. Disabled persons in India statistical profile . 2016. Disabled persons in India statistical profile.
    1. Fazzi E., Galli J. New clinical needs and strategies for care in children with neurodisability during COVID-19. Developmental Medicine and Child Neurology. 2020;62(7):879–880. doi: 10.1111/dmcn.14557.
    1. Holshue M.L., DeBolt C., Lindquist S., Lofy K.H., Wiesman J., Bruce H., Spitters C., Ericson K., Wilkerson S., Tural A., Diaz G., Cohn A., Fox L., Patel A., Gerber S.I., Kim L., Tong S., Lu X., Lindstrom S.…Washington State 2019-nCoV Case Investigation Team First case of 2019 novel coronavirus in the United States. The New England Journal of Medicine. 2020;382(10):929–936. doi: 10.1056/NEJMoa2001191.
    1. Huang Y., Zhao N. Chinese mental health burden during the COVID-19 pandemic. Asian Journal of Psychiatry. 2020;51 doi: 10.1016/j.ajp.2020.102052. Advance online publication.
    1. Kairy D., Tousignant M., Leclerc N., Côté A.M., Levasseur M., Researchers T.T. The patient’s perspective of in-home telerehabilitation physiotherapy services following total knee arthroplasty. International Journal of Environmental Research and Public Health. 2013;10(9):3998–4011. doi: 10.3390/ijerph10093998.
    1. Khan F., Amatya B., Mannan H., Rathore F.A. Neurorehabilitation in developing countries: Challenges and the way forward. Physical Medicine and Rehabilitation International. 2015;2:1–13.
    1. Khanna M., Gowda G.S., Bagevadi V.I., Gupta A., Kulkarni K.S., Shyam R.P., Basavaraju V., Ramesh M.B., Sashidhara H.N., Manjunatha N., Channaveerachari N.K., Math S.B. Feasibility and Utility of Tele-Neurorehabilitation Service in India: Experience from a Quaternary Center. Journal of Neurosciences in Rural Practice. 2018;9(4):541–544. doi: 10.4103/jnrp.jnrp_104_18.
    1. Lakhan R., Ekúndayò O.T., Shahbazi M. An estimation of the prevalence of intellectual disabilities and its association with age in rural and urban populations in India. Journal of Neurosciences in Rural Practice. 2015;6(4):523–528. doi: 10.4103/0976-3147.165392.
    1. Lee S.M., Edmonston B. Living alone among older adults in Canada and the U.S. Healthcare (Basel, Switzerland) 2019;7(2):68. doi: 10.3390/healthcare7020068.
    1. Leochico C.D.F. Adoption of telerehabilitation in a developing country before and during the COVID-19 pandemic. Annals of Physical and Rehabilitation Medicine. 2020 doi: 10.1016/j.rehab.2020.06.001. S1877-0657(20)30123-8. Advance online publication.
    1. Lillo-Navarro C., Montilla-Herrador J., Escolar-Reina P., Oliveira-Sousa S.L., García-Vidal J.A., Medina-Mirapeix F. Factors associated with parents’ adherence to different types of exercises in home programs for children with disabilities. Journal of Clinical Medicine. 2019;8(4):456. doi: 10.3390/jcm8040456.
    1. Lovibond S.H., Lovibond P.F. 2nd ed. Psychology Foundation; Sydney: 1995. Manual for the depression anxiety & stress scales.
    1. Mair F.S., Goldstein P., May C., Angus R., Shiels C., Hibbert D., O’Connor J., Boland A., Roberts C., Haycox A., Capewell S. Patient and provider perspectives on home telecare: preliminary results from a randomized controlled trial. Journal of Telemedicine and Telecare. 2005;11(Suppl. 1):95–97. doi: 10.1258/1357633054461976.
    1. Martin C.A., Papadopoulos N., Chellew T., Rinehart N.J., Sciberras E. Associations between parenting stress, parent mental health and child sleep problems for children with ADHD and ASD: Systematic review. Research in Developmental Disabilities. 2019;93 doi: 10.1016/j.ridd.2019.103463.
    1. Masulani-Mwale C., Kauye F., Gladstone M., Mathanga D. Prevalence of psychological distress among parents of children with intellectual disabilities in Malawi. BMC Psychiatry. 2018;18(1):146. doi: 10.1186/s12888-018-1731-x.
    1. Mishra K., Siddharth V. Utilization of institutional rehabilitation service in pediatric patients with disability in Southwest Rajasthan. Journal of Family Medicine and Primary Care. 2018;7(4):703–708. doi: 10.4103/jfmpc.jfmpc_260_17.
    1. Moghanibashi-Mansourieh A. Assessing the anxiety level of Iranian general population during COVID-19 outbreak. Asian Journal of Psychiatry. 2020;51 doi: 10.1016/j.ajp.2020.102076. Advance online publication.
    1. Ng F., Trauer T., Dodd S., Callaly T., Campbell S., Berk M. The validity of the 21-item version of the Depression Anxiety Stress Scales as a routine clinical outcome measure. Acta Neuropsychiatrica. 2007;19(5):304–310. doi: 10.1111/j.1601-5215.2007.00217.x.
    1. Nicola M., O’Neill N., Sohrabi C., Khan M., Agha M., Agha R. Evidence based management guideline for the COVID-19 pandemic - Review article. International Journal of Surgery (London, England) 2020;77:206–216. doi: 10.1016/j.ijsu.2020.04.001.
    1. Organization WHO . World Heatlh Organization; 2020. WHO characterizes COVID-19 as a pandemic. Published 2020. Accessed 13 March 2020.
    1. Pangalila R.F., van den Bos G.A., Stam H.J., van Exel N.J., Brouwer W.B., Roebroeck M.E. Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy. Disability and Rehabilitation. 2012;34(12):988–996. doi: 10.3109/09638288.2011.628738.
    1. Phoenix M., Jack S.M., Rosenbaum P.L., Missiuna C. A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness. Disability and Rehabilitation. 2020;42(15):2151–2160. doi: 10.1080/09638288.2018.1555618.
    1. Prakash V., Patel A.M., Hariohm K., Palisano R.J. Higher levels of caregiver strain perceived by Indian mothers of children and young adults with cerebral palsy who have limited self-mobility. Physical & Occupational Therapy in Pediatrics. 2017;37(1):64–73. doi: 10.3109/01942638.2015.1138016.
    1. Raina P., O’Donnell M., Rosenbaum P., Brehaut J., Walter S.D., Russell D., Swinton M., Zhu B., Wood E. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626–e636. doi: 10.1542/peds.2004-1689.
    1. Rajkumar R.P. COVID-19 and mental health: A review of the existing literature. Asian Journal of Psychiatry. 2020;52 doi: 10.1016/j.ajp.2020.102066. Advance online publication.
    1. Ramalingaswami V. Psychosocial effects of the 1994 plague outbreak in Surat, India. Military Medicine. 2001;166(Suppl. 12):29–30.
    1. Robinson B.C. Validation of a caregiver strain index. Journal of Gerontology. 1983;38(3):344–348. doi: 10.1093/geronj/38.3.344.
    1. Roy D., Tripathy S., Kar S.K., Sharma N., Verma S.K., Kaushal V. Study of knowledge, attitude, anxiety & perceived mental healthcare need in Indian population during COVID-19 pandemic. Asian Journal of Psychiatry. 2020;51 doi: 10.1016/j.ajp.2020.102083. Advance online publication.
    1. Sajedi F., Alizad V., Malekkhosravi G., Karimlou M., Vameghi R. Depression in mothers of children with cerebral palsy and its relation to severity and type of cerebral palsy. Acta Medica Iranica. 2010;48(4):250–254.
    1. Samanta T., Chen F., Vanneman R. Living arrangements and health of older adults in India. The Journals of Gerontology Series B Psychological Sciences and Social Sciences. 2015;70(6):937–947. doi: 10.1093/geronb/gbu164.
    1. Saxena R., Saxena S.K. Coronavirus disease 2019 (COVID-19): Epidemiology, pathogenesis, diagnosis, and therapeutics. 2020. Preparing children for pandemics; pp. 187–198.
    1. Scherer N., Verhey I., Kuper H. Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. PloS One. 2019;14(7) doi: 10.1371/journal.pone.0219888.
    1. Schiariti V. The human rights of children with disabilities during health emergencies: The challenge of COVID-19. Developmental Medicine and Child Neurology. 2020;62(6):661. doi: 10.1111/dmcn.14526.
    1. Severance E.G., Dickerson F.B., Viscidi R.P., Bossis I., Stallings C.R., Origoni A.E., Sullens A., Yolken R.H. Coronavirus immunoreactivity in individuals with a recent onset of psychotic symptoms. Schizophrenia Bulletin. 2011;37(1):101–107. doi: 10.1093/schbul/sbp052.
    1. Sharan D., Ajeesh P.S., Rameshkumar R., Manjula M. Musculoskeletal disorders in caregivers of children with cerebral palsy following a multilevel surgery. Work (Reading, Mass) 2012;41(Suppl. 1):1891–1895. doi: 10.3233/WOR-2012-0403-1891.
    1. Singer G.H. Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation. 2006;111(3):155–169. doi: 10.1352/0895-8017(2006)111[155:MOCSOD];2.
    1. Sundström G., Fransson E., Malmberg B., Davey A. Loneliness among older Europeans. European Journal of Ageing. 2009;6(4):267. doi: 10.1007/s10433-009-0134-8.
    1. Tak N.K., Mahawer B.K., Sushil C.S., Sanadhya R. Prevalence of psychiatric morbidity among parents of children with intellectual disability. Industrial Psychiatry Journal. 2018;27(2):197–200. doi: 10.4103/ipj.ipj_39_18.
    1. The Lancet child- adolescent . 2020. The lancet child- adolescent. Published online April 14, 2020.
    1. Tinderholt P., Myrhaug H., Østensjø S., Larun L., Odgaard-Jensen J., Jahnsen R. Intensive training of motor function and functional skills among young children with cerebral palsy: A systematic review and meta-analysis. BMC Pediatrics. 2014;14:292. doi: 10.1186/s12887-014-0292-5.
    1. Turk M.A., McDermott S. The COVID-19 pandemic and people with disability. Disability and Health Journal. 2020;13(3) doi: 10.1016/j.dhjo.2020.100944.
    1. Vadivelan K., Sekar P., Sruthi S.S., Gopichandran V. Burden of caregivers of children with cerebral palsy: An intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health. 2020;20(1):645. doi: 10.1186/s12889-020-08808-0.
    1. Wang C., Pan R., Wan X., Tan Y., Xu L., McIntyre R.S., Choo F.N., Tran B., Ho R., Sharma V.K., Ho C. A longitudinal study on the mental health of general population during the COVID-19 epidemic in China. Brain, Behavior, and Immunity. 2020 doi: 10.1016/j.bbi.2020.04.028. S0889-1591(20)30511-0. Advance online publication.
    1. Wang D., Hu B., Hu C., Zhu F., Liu X., Zhang J., Wang B., Xiang H., Cheng Z., Xiong Y., Zhao Y., Li Y., Wang X., Peng Z. Clinical Characteristics of 138 Hospitalized Patients With 2019 Novel Coronavirus-Infected Pneumonia in Wuhan, China. JAMA. 2020;323(11):1061–1069. doi: 10.1001/jama.2020.1585. Advance online publication.
    1. WHO . 2020. WHO coronavirus disease 2019 (COVID-19) situation report – 46. Accessed 31 May 2020.
    1. WHO definition of health 2020 , Assessed 5 August 2020.
    1. Wikipedia COVID-19 data 2020 , Assessed on 25 May 2020.
    1. Wikipedia COVID-19 lockdown 2020 , Accessed on 27 May 2020.
    1. Zhang J., Shuai L., Yu H., Wang Z., Qiu M., Lu L., Cao X., Xia W., Wang Y., Chen R. Acute stress, behavioural symptoms and mood states among school-age children with attention-deficit/hyperactive disorder during the COVID-19 outbreak. Asian Journal of Psychiatry. 2020;51 doi: 10.1016/j.ajp.2020.102077. Advance online publication.

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