Understanding Parental Guilt in Caregivers of Children with Behavioral Disorders
Keywords:
Parental Guilt, Behavioral Disorders, Caregivers, Emotional Burden, Social Stigma, Coping Strategies, Turkey, Autism, Spectrum Disorder (ASD), ADHD, Caregiver SupportAbstract
Objective: This study aims to explore the experiences of parental guilt in caregivers of children with behavioral disorders in Turkey, focusing on emotional, social, and coping dimensions.
Methods and Materials: A qualitative research design was employed, using semi-structured interviews to collect data from 27 caregivers of children with behavioral disorders. Participants were selected through purposive sampling, ensuring diversity in age, gender, and child diagnosis. Data were analyzed using thematic analysis, and NVivo software was used to organize and identify emergent themes. The study utilized theoretical saturation, with interviews conducted until no new themes emerged.
Findings: Three main themes emerged from the data: Emotional Burden, Social Pressure and Stigma, and Coping and Adaptation. Caregivers reported persistent self-blame, emotional exhaustion, and feelings of inadequacy, often linked to internalized shame and societal expectations. Social pressure, particularly from extended family and educational institutions, exacerbated guilt. Coping strategies included seeking professional help, peer support, spiritual practices, and cognitive reframing, which helped mitigate guilt but were often insufficient without systemic support.
Conclusion: Parental guilt in caregivers of children with behavioral disorders is a complex emotional experience shaped by personal beliefs, societal judgments, and the demands of caregiving. The study highlights the need for targeted interventions and support systems that address caregivers' emotional burden, including counseling, peer support groups, and education on child development. Understanding the cultural context is crucial in designing effective interventions that can alleviate caregiver guilt and improve well-being.
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References
Darshan, D., Bilvashree, C., & Harshavardhan, P. (2023). Clinical Observation of Mealtime Behavior in Children With Autism Spectrum Disorder of Different Severity. International Journal of Health Sciences and Research, 13(7), 228-231. https://doi.org/10.52403/ijhsr.20230733
Dennhag, I., Henje, E., & Nilsson, K. (2019). Parental Caregiver Burden and Recovery of Adolescent Anorexia Nervosa After Multi-Family Therapy. Eating Disorders, 29(5), 463-479. https://doi.org/10.1080/10640266.2019.1678980
Ebadi, M., Mardani‐Hamooleh, M., Seyedfatemi, N., Ghaljeh, M., & Haghani, S. H. (2021). Effects of Written Emotional Disclosure on the Stress of Mothers of Children With Autism. Iran Journal of Nursing, 34(131), 19-30. https://doi.org/10.52547/ijn.34.131.19
Johnson, N. L., Bekhet, A. K., Sawdy, R., Zint, E., Wang, J., Peña, S., Zurcher, H., & Enea, N. (2022). Parent Physical Activity: A Systematic Review of the Literature and Recommendations for Parents of Children With Autism Spectrum Disorder. Journal of Physical Activity and Health, 19(2), 132-147. https://doi.org/10.1123/jpah.2021-0438
Juszko, K., & Szczepańska-Gieracha, J. (2021). Expressive Suppression in Parents of Children With Disabilities. International Journal of Special Education (Ijse), 35(1). https://doi.org/10.52291/ijse.2020.35.5
Kang, Y., Cho, E., Heo, J. Y., Oh, S. M., Choi, J. Y., & Park, S. Y. (2024). A Mobile Application Proposal for Self-Monitoring by Caregivers of Children With ADHD : The Potential for Behavioral Improvement in ADHD Caregivers Through Mobile Technology. Korea Inst Des Res Soc, 9(4), 87-96. https://doi.org/10.46248/kidrs.2024.4.87
Karuna, Y. M., Dutt, A., Shenoy, R., Lee, Y., Thimmaiah, C., Bhat, S. S., Nayak, A., & Rao, A. (2024). A Scoping Review on Parental/Caregiver Challenges in Maintaining Oral Hygiene Among Children With Autism Spectrum Disorder. International Journal of Paediatric Dentistry. https://doi.org/10.1111/ipd.13268
Kim, Y., Kim, B.-N., & Kim, Y. (2024). Multifaceted Approach to Addressing Problem Behaviors in Developmentally Challenged Children. Journal of Korean Academy of Child and Adolescent Psychiatry, 35(1), 44-50. https://doi.org/10.5765/jkacap.230018
Lin, Y.-T., Lewis, F. M., Kantrowitz‐Gordon, I., Carrougher, G. J., Qiao, L., & Whitney, J. D. (2020). 566 Representation and Consequences of Guilt in Parents of Young Children With Unintentional Burns. Journal of Burn Care & Research, 41(Supplement_1), S124-S124. https://doi.org/10.1093/jbcr/iraa024.194
Lindly, O. J., Shui, A., Stotts, N. M., & Kuhlthau, K. (2021). Caregiver Strain Among North American Parents of Children From the Autism Treatment Network Registry Call-Back Study. Autism, 26(6), 1460-1476. https://doi.org/10.1177/13623613211052108
Luehring, M. C., & McIntyre, L. L. (2023). Associations Between Parenting Behaviors and Behavioral Problems in Young Children With Developmental Delays. American Journal on Intellectual and Developmental Disabilities, 128(6), 481-493. https://doi.org/10.1352/1944-7558-128.6.481
Marino, F. (2023). Increasing Collaboration and Reducing Problem Behaviors Through Tele-Rehabilitation Using a Remote System. Research in Medical & Engineering Sciences, 10(2). https://doi.org/10.31031/rmes.2023.10.000735
Marsack‐Topolewski, C. N., Samuel, P. S., & Tarraf, W. (2021). Empirical Evaluation of the Association Between Daily Living Skills of Adults With Autism and Parental Caregiver Burden. PLoS One, 16(1), e0244844. https://doi.org/10.1371/journal.pone.0244844
Metcalfe, R. E., Pental, P., & Duke, D. C. (2022). Engaging Preschool and Early Elementary School-Aged Children in Exposure and Response Prevention (ERP). Journal of Health Service Psychology, 48(3), 117-125. https://doi.org/10.1007/s42843-022-00068-3
Montano, M., Mizock, L., Pulido, C., & Calzada, E. J. (2023). The Maternal Guilt of Working Latina Mothers: A Qualitative Study. Hispanic Journal of Behavioral Sciences, 45(3), 149-171. https://doi.org/10.1177/07399863241239991
Nunnally, A. D., Sterrett, K., Gulsrud, A. C., & Kasari, C. (2021). What Are the Odds? Predicting the Likelihood of a Negative Episode in a Sample of Toddlers With Autism Spectrum Disorder. Autism, 25(8), 2254-2264. https://doi.org/10.1177/13623613211015001
Papadopoulos, D. (2023). Impact of Child and Family Factors on Caregivers’ Mental Health and Psychological Distress During the COVID-19 Pandemic in Greece. Children, 11(1), 7. https://doi.org/10.3390/children11010007
Peplak, J., Jambon, M., Bottoni, A., & Malti, T. (2022). Parent–child Conversations About Refugee Newcomers Are Associated With Children’s Refugee-Specific Prosociality. International Journal of Behavioral Development, 47(3), 221-232. https://doi.org/10.1177/01650254221137696
Rabinowitz, J. A., Osigwe, I., Godshalk, L., Drabick, D. A. G., Nachman, S., & Gadow, K. D. (2019). Profiles of Caregiving Behaviors Among Children and Adolescents With Perinatally Acquired HIV. AIDS care, 31(6), 737-745. https://doi.org/10.1080/09540121.2019.1576850
Rizzo, A., Sorrenti, L., Commendatore, M., Mautone, A., Caparello, C., Maggio, M. G., Özaslan, A., Karaman, H., Yıldırım, M., & Filippello, P. (2024). Caregivers of Children With Autism Spectrum Disorders: The Role of Guilt Sensitivity and Support. Journal of clinical medicine, 13(14), 4249. https://doi.org/10.3390/jcm13144249
Saber, E., Mohamed, E., & Mohammed, T. (2024). Guilt, Shame, Feeling of Burden and Child Parent Relationship Among Parents of Children With Attention Deficit Hyperactivity Disorder. Assiut Scientific Nursing Journal, 12(41), 108-123. https://doi.org/10.21608/asnj.2024.260324.1744
Schnabel, A., Hallford, D. J., Stewart, M., McGillivray, J., Forbes, D., & Austin, D. (2020). An Initial Examination of Post‐Traumatic Stress Disorder in Mothers of Children With Autism Spectrum Disorder: Challenging Child Behaviors as Criterion a Traumatic Stressors. Autism Research, 13(9), 1527-1536. https://doi.org/10.1002/aur.2301
Seeridaram, A., & Rashid, S. M. M. (2023). The Impact of Pressure Upon Parents in Raising Children Diagnosed With Autism Spectrum Disorders. International Journal of Academic Research in Business and Social Sciences, 13(1). https://doi.org/10.6007/ijarbss/v13-i1/15916
Tekola, B., Girma, F., Kinfe, M., Abdurahman, R., Tesfaye, M., Yenus, Z., Salomone, E., Pacione, L., Fekadu, A., Servili, C., Hanlon, C., & Hoekstra, R. A. (2019). Adapting and Pre-Testing the World Health Organization’s Caregiver Skills Training Programme for Autism and Other Developmental Disorders in a Very Low-Resource Setting: Findings From Ethiopia. Autism, 24(1), 51-63. https://doi.org/10.1177/1362361319848532
Thapa, Y., Khatri, B. B., & Koirala, K. P. (2024). Exploring the Experiences of Parents Caring for Children With Autism Spectrum Disorder in Nepal. Int. J. Atharva, 2(2), 71-84. https://doi.org/10.3126/ija.v2i2.70152
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