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Research Articles

Caregiver strain and its predictors among parents of autistic children: a cross-sectional study

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References

  • Abdollahpour, I., Noroozian, M., Nedjat, S., & Majdzadeh, R. (2012). Caregiver burden and its determinants among the family members of patients with dementia in Iran. International Journal of Preventive Medicine, 3(8), 544–551.
  • Akhter, M., Ashraf, M., Ali, A., Rizwan, I., & Rehman, R. (2018). Integration of therapies in autistic children; a survey based in Karachi, Pakistan. Journal of the Pakistan Medical Association, 68(10), 1508–1512.
  • Ayuda-Pascual, R., Llorente-Comi, M., Martos-Perez, J., Rodriguez-Bausa, L., & Olmo-Remesal, L. (2012). Medidas de estrés e impacto familiar en padres de niños con trastornos del espectro autista antes y después de su participación en un programa de formación. Revista de Neurología, 54(Suppl. 1), S73–S80. https://doi.org/10.33588/rn.54S01.2011713
  • Bahareh, A. & Adib, H. M. (2019). Caregiver Burden and Its Associated Factors in Caregivers of Children and Adolescents with Chronic Conditions. International Journal of Community Based Nursing and Midwifery, 7(4), 258–269. https://doi.org/10.30476/IJCBNM.2019.73893.0
  • Bearss, K. P. D., Johnson, C., Smith, T., & Scahill, L. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder. Journal of the American Medical Association, 313(15), 1524–1533. https://doi.org/10.1001/jama.2015.3150
  • Bickman, L., Riemer, M., Lambert, E. W., Kelley, S. D., Breda, C., Dew, S. E. et al. (2007). Manual of the Peabody Treatment Progress Battery. Vanderbilt University.
  • Bozkurt, G., Uysal, G., & Duzkaya, D.S. (2019) Examination of care burden and stress coping styles of parents of children with autism spectrum disorder. Journal of Paediatric Nursing, 47, 142–147. https://doi.org/10.1016/j.pedn.2019.05.005.
  • Bradshaw, J., Gillespie, S., McCracken, C., King, B. H., McCracken, J. T., Johnson, C. R. et al. (2021). Predictors of caregiver strain for parents of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 51, 11. https://doi.org/10.1007/s10803-020-04625-x
  • Brannan, A. M., Heflinger, C. A., & Bickman, L. (1997). The Caregiver Strain Questionnaire: Measuring the impact on the family of living with a child with serious emotional disturbance. Journal of Emotional and Behavioral Disorders, 5(4), 212–222. doi: 10.1177/106342669700500404
  • Cohrs, A. C., & Leslie, D. L. (2017). Depression in parents of children diagnosed with autism spectrum disorder: A claims-based analysis. Journal of Autism and Developmental Disorders, 47(5), 1416–1422. https://doi.org/10.1007/s10803-017-3063-y
  • Deb, S., Retzer, A., Roy, M., Acharya, R., Limbu, B., & Roy, A. (2020). The effectiveness of parent training for children with autism spectrum disorder: A systematic review and meta-analyses. BMC Psychiatry, 20(583), 24. https://doi.org/10.1186/s12888-020-02973-7
  • Durán-Pacheco, G., Silkey, M., Johnson, M., Liu, C., Clinch, S., Law, K., & Loss, G. (2023). Effect of children’s autism spectrum disorder severity on family strain and sleep quality: A cross-sectional online survey in the U.S. Journal of Autism and Developmental Disorders, 53, 1795–1808. https://doi.org/10.1007/s10803-022-05457-7
  • Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munson, J. (2013). Parentingrelated stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain & Development, 35(2), 133–138. https://doi.org/10.1016/j.braindev.2012.10.004
  • Firth, I., & Dryer, R. (2013). The predictors of distress in parents of children with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 38(2), 163–171. https://doi.org/10.3109/13668250.2013.773964
  • Hedley, D., Uljarević, M., Wilmot, M., Richdale, A., & Dissanayake, C. (2018). Understanding depression and thoughts of self-harm in autism: A potential mechanism involving loneliness. Research in Autism Spectrum Disorders, 46, 1–7. doi: 10.1016/j.rasd.2017.11.003
  • Hirota, T., & King, B. H. (2023). Autism spectrum disorder: A review. Journal of the American Medical Association, 329(2), 157–168. https://doi.org/10.1001/jama.2022.23661
  • Hoefman, R., Payakachat, N., van Exel, J., Kuhlthau, K., Kovacs, E., Pyne, J., & Tilford, J. M. (2014). Caring for a child with autism spectrum disorder and parents’ quality of life: Application of the CarerQol. Journal of Autism and Developmental Disorders, 44(8), 1933–1945. https://doi.org/10.1007/s10803-014-2066-1
  • Hossain, M. D., Ahmed, H. U., Jalal Uddin, M. M., Chowdhury, W. A., Iqbal, M. S., Kabir, R. I. et al. (2017). Autism spectrum disorders (ASD) in South Asia: A systematic review. BMC Psychiatry, 17(1), 281. https://doi.org/10.1186/s12888-017-1440-x
  • Iadarola, S., Levato, L., Harrison, B., Smith, T., Lecavalier, L., Johnson, C. et al. (2018). Teaching parents behavioral strategies for autism spectrum disorder (ASD): Effects on stress, strain, and competence. Journal of Autism and Developmental Disorders, 48(4), 1031–1040. https://doi.org/10.1007/s10803-017-3339-2
  • Iftikhar, N., & Butt, A. K. (2013). Psychological well-being and parental concern of children with autism. Journal of the Riphah College of Rehabilitation Sciences, 1(1), 21–2007. https://journals.riphah.edu.pk/index.php/jrcrs/article/view/403
  • Ilias, K., Cornish, K., Kummar, A. S., Park, M. S., & Golden, K. J. (2018). Parenting stress and resilience in parents of children with autism spectrum disorder (ASD) in Southeast Asia: A systematic review. Frontiers in Psychology, 9, 280. https://doi.org/10.3389/fpsyg.2018.00280
  • Kamal, A. K., Itrat, A., Naqvi, I., Khan, M., Channa, R., Khatri, I., & Wasay, M. (2010). Ischaemic stroke care: Official guidelines from the Pakistan Society of Neurology. Pakistan Journal of Neurological Sciences, 5(1), 38–43.
  • Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6
  • Kazdin, A. E. (2012). Autism spectrum disorder. In A. E. Kazdin (Ed.), Encyclopedia of Psychology (pp. 250–264). American Psychological Association.
  • Khalid, W., Rozi, S., Ali, T. S., Azam, I., Mullen, M. T., Illyas, S. et al. (2016). Quality of life after stroke in Pakistan. BMC Neurology, 16(1), 250. https://doi.org/10.1186/s12883-016-0774-1
  • Khanna, R., Madhavan, S. S., Smith, M. J., Tworek, C., Patrick, J. H., & Becker-Cottrill, B. (2012). Psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. Autism, 16(2), 179–199. https://doi.org/10.1177/1362361311406143
  • Kirby, A. V., White, T. J., & Baranek, G. T. (2015). Caregiver strain and sensory features in children with autism spectrum disorder and other developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 120(1), 32–45. https://doi.org/10.1352/1944-7558-120.1.32
  • Kogan, M., & Van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6), 1149–1158. https://doi.org/10.1542/peds.2008-1057
  • Lerthattasilp, T., Charernboon, T., Chunsuwan, I., & Siriumpunkul, P. (2015). Depression and burden among caregivers of children with autistic spectrum disorder. Journal of the Medical Association of Thailand, 98(Suppl. 2), S45–S52. http://www.ncbi.nlm.nih.gov/pubmed/26211103
  • Limpawattana, P., Theeranut, A., Chindaprasirt, J., Sawanyawisuth, K., & Pimporm, J. (2013). Caregivers burden of older adults with chronic illnesses in the community: A cross-sectional study. Journal of Community Health, 38(1), 40–45. https://doi.org/10.1007/s10900-012-9576-6
  • Maridal, H. K., Bjørgaas, H. M., Hagen, K., Jonsbu, E., Mahat, P., Malakar, S., & Dørheim, S. (2021). Psychological distress among caregivers of children with neurodevelopmental disorders in Nepal. International Journal of Environmental Research and Public Health, 18(5), 2460. https://doi.org/10.3390/ijerph18052460
  • McKenzie, K., Forsyth, K., O’Hare, A., McClure, I., Rutherford, M., Murray, A., & Irvine, L. (2015). Factors influencing waiting times for diagnosis of autism spectrum disorder in children and adults. Research in Developmental Disabilities, 45, 300–306. https://doi.org/10.1016/j.ridd.2015.07.033
  • McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M., & Begeer, S. (2014a). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism, 18(5), 502–510. https://doi.org/10.1177/1362361313485163
  • McStay, R. L., Trembath, D., & Dissanayake, C. (2014b). Maternal stress and family quality of life in response to raising a child with autism: From preschool to adolescence. Research in Developmental Disabilities, 35(11), 3119–3130. https://doi.org/10.1016/j.ridd.2014.07.043
  • Meltzer, H., Ford, T., Goodman, R., & Vostanis, P. (2011). The burden of caring for children with emotional or conduct disorders. International Journal of Family Medicine, 2011, Article 801203. https://doi.org/10.1155/2011/801203
  • Nik Adib, N. A., Ibrahim, M. I., Ab Rahman, A., Bakar, R. S., Yahaya, N. A., Hussin, S., & Wan Mansor, W. N. A. (2019). Perceived stress among caregivers of children with autism spectrum disorder: A state-wide study. International Journal of Environmental Research and Public Health, 16(8), 1468. https://doi.org/10.3390/ijerph16081468
  • Oelofsen, N., & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability, 31(1), 1–12. https://doi.org/10.1080/13668250500349367
  • Pandey, S., & Sharma, C. (2018). Perceived burden in caregivers of children with autism spectrum disorder in Kathmandu valley. Journal of Nepal Health Research Council, 16(39), 184–189. https://doi.org/10.3126/jnhrc.v16i2.20308
  • Pellicano, E., Brett, S., den Houting, J., Heyworth, M., Magiati, I., Steward, R., et al. (2022). COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study. Autism, 26(4), 914–927. doi: 10.1177/13623613211035936
  • Piran, P., Khademi, Z., Tayari, N., & Mansouri, N. (2017). Caregiving burden of children with chronic diseases. Electronic Physician, 9(9), 5380–5387. https://doi.org/10.19082/5380
  • Rahbar, M. H., Ibrahim, K., & Assassi, P. (2011). Knowledge and attitude of general practitioners regarding autism in Karachi, Pakistan. Journal of Autism and Developmental Disorders, 41(4), 465–474. https://doi.org/10.1007/s10803-010-1068-x
  • Rahman, A., Divan, G., Hamdani, S. U., Vajaratkar, V., Taylor, C., Leadbitter, K., Aldred, C., Minhas, A., Cardozo, P., Emsley, R., Patel, V., & Green, J. (2016). Effectiveness of the parent-mediated intervention for children with autism spectrum disorder in south Asia in India and Pakistan (PASS): A randomised controlled trial. The Lancet. Psychiatry, 3(2), 128–136. https://doi.org/10.1016/S2215-0366(15)00388-0
  • Roper, S. O., Allred, D. W., Mandleco, B., Freeborn, D., & Dyches, T. (2014). Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children. Families, Systems & Health : The Journal of Collaborative Family Healthcare, 32(2), 241–246. https://doi.org/10.1037/fsh0000047
  • Saeed, R., Mumtaz, S., Qazi, A., Awan, U., & Akhtar, N. (2021). Autism: Current status and challenges in Pakistan. Life Sciences, 2(4), 201–201. https://doi.org/10.37185/LnS.1.1.208
  • Sabih, F., & Sajid, W. B. (2008). There is significant stress among parents having children with autism. Rawal Medical Journal, 33(2), 214–216. http://www.pakmedinet.com/13011
  • Sabzwari, S., Badini, A. M., Fatmi, Z., Jamali, T., & Shah, S. (2016). Burden and associated factors for caregivers of the elderly in a developing country. Eastern Mediterranean Health Journal, 22(6), 394–403. https://doi.org/10.26719/2016.22.6.394
  • Samadi, S. A., & McConkey, R. (2014). The impact on Iranian mothers and fathers who have children with an autism spectrum disorder. Journal of Intellectual Disability Research, 58(3), 243–254. https://doi.org/10.1111/jir.12005
  • Scahill, L., Bearss, K., Lecavalier, L., Smith, T., Swiezy, N., Aman, M. G. et al. (2016). Effect of parent training on adaptive behavior in children with autism spectrum disorder and disruptive behavior: Results of a randomized trial. Journal of the American Academy of Child and Adolescent Psychiatry, 55, 504–535. https://doi.org/10.1016/j.jaac.2016.05.001
  • Shabnam, N., Ameer, W., Aurangzeb, N., Ashraf, M. A., & Shah, S. H. (2023). Estimation of poverty bounds for Pakistan using synthetic panel data. PLoS One, 18(3), e0276673. https://doi.org/10.1371/journal.pone.0276673
  • Shivers, C. M., Krizova, K., & Lee, G. K. (2017). Types of strain among family members of individuals with autism spectrum disorder across the lifespan. Elsevier Research in Developmental Disabilities, 68, 10. https://doi.org/10.1016/j.ridd.2017.07.003
  • Wiggins, L. D., Rice, C. E., Barger, B., Soke, G. N., Lee, L. C., Moody, E., Edmondson-Pretzel, R., & Levy, S. E. (2019). DSM-5 criteria for autism spectrum disorder maximizes diagnostic sensitivity and specificity in preschool children. Social Psychiatry and Psychiatric Epidemiology, 54, 693–701. https://doi.org/10.1007/s00127-019-01674-1
  • Yıldız, M., Demir, Y., Kırcalı, A., & İncedere, A. (2021). Caregiver burden in schizophrenia and autism spectrum disorders: A comparative study. Psychiatry Investigation, 18(12), 1180–1187. https://doi.org/10.30773/pi.2021.0165
  • Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013) The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. https://doi.org/10.1007/s10803-012-1693-7

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