Raising a child with special needs is challenging for most parents. The current study sought to focus on the emotional feelings of parents of children diagnosed with autism spectrum disorder, with attention deficit/hyperactivity disorder, or with learning disabilities. This qualitative study examined 41 parental retrospective perceptions and feeling regarding six aspects: 1) Emotional feelings toward the child referring to different period of his/her life. 2) Emotional feelings in the marital relationships. 3) Personal feelings of the parent. 4) Emotional feelings toward the educational systems. 5) Support and coping. 6) Needs and thoughts regarding the future. Findings revealed that parents from all groups, were experiencing a difficult period following diagnosis and in their daily routines. They described a lot of stress, anxiety, and anger. Some parents described their relationships as unstable and as involving conflicts and disagreements, others adopted a more positive mindset and with the challenges they were facing. Many parents referred to the emotional support and guidance they were receiving either as part of a support group or by visiting a therapist. The present findings contribute to our knowledge regarding the emotional experience of parents raising a child with disability, and highlight the vulnerability of parents with a child with special needs.
References
[1]
Almansour, M. A., Alateeq, M. A., Alzaharani, M. K., Algeffari, M. A., & Alhomaidan, H. T. (2013). Depression and Anxiety among Parents and Caregivers of Autistic Spectrum Disorder Children. Neuroscience, 18, 58-63.
[2]
Altiere, M. J., & von Kluge, S. (2009). Family Functioning and Coping Behaviors in Parents of Children with Autism. Journal of Child and Family Studies, 18, 83-92. https://doi.org/10.1007/s10826-008-9209-y
[3]
Bekhet, A. K. (2018). Depression, Positive Thinking, Personal and Social Resourcefulness among Caregivers of Persons with Autism Spectrum Disorders. Archives of Psychiatric Nursing, 32, 823-827. https://doi.org/10.1016/j.apnu.2018.06.006
[4]
Ben-Ari, A., & Lavee, Y. (2011). Ambivalence over Emotional Expressiveness in Intimate Relationships: A Shift from an Individual Characteristic to Dyadic Attribute. American Journal of Orthopsychiatry, 81, 277-284. https://doi.org/10.1111/j.1939-0025.2011.01096.x
[5]
Carotenuto, M. et al. (2017). Maternal Stress and Coping Strategies in Developmental Dyslexia: An Italian Multicenter Study. Frontiers in Psychiatry, 8, 295. https://doi.org/10.3389/fpsyt.2017.00295
[6]
Craig, F., Savino, R., Fanizza, I., Lucarelli, E., Russo, L., & Trabacca, A. (2020). A Systematic Review of Coping Strategies in Parents of Children with Attention Deficit Hyperactivity Disorder (ADHD). Research in Developmental Disabilities, 98, Article ID: 103571. https://pubmed.ncbi.nlm.nih.gov/31931455/ https://doi.org/10.1016/j.ridd.2020.103571
[7]
Deault, L. C. (2010). A Systematic Review of Parenting in Relation to the Development of Comorbidities and Functional Impairments in Children with Attention-Deficit/Hyper-activity Disorder (ADHD). Child Psychiatry & Human Development, 41, 168-192. https://doi.org/10.1007/s10578-009-0159-4
[8]
Edwards, G., Barkley, R. A., Laneri, M., Fletcher, K., & Metevia, L. (2001). Parent-Adolescent Conflict in Teenagers with ADHD and ODD. Journal of Abnormal Child Psychology, 29, 557-572. https://doi.org/10.1023/A:1012285326937
[9]
Ekas, N. V., Pruitt, M. M., & Mckay, E. (2016). Hope, Social Relations and Depressive Symptoms in Mothers of Children with Autism Spectrum Disorder. Research in Autism Spectrum Disorders, 29, 8-18. https://doi.org/10.1016/j.rasd.2016.05.006
[10]
Finzi-Dottana, R., Segal Triwitzb, Y., & Golubchikb, P. (2011). Predictors of Stress-Related Growth in Parents of Children with ADHD. Research in Developmental Disabilities, 32, 510-519. https://doi.org/10.1016/j.ridd.2010.12.032
[11]
Hartley, S. L., Barker, E. T., Saltzer, M., & Greenberg, J. S. (2011). Marital Satisfaction and Parenting Experience of Mothers and Fathers of Adolescents and Adults with Autism. American Journal on Intellectual and Developmental Disabilities, 116, 81-95. https://doi.org/10.1352/1944-7558-116.1.81
[12]
Haydicky, J., Shecter, C., Wiener, J., & Ducharme, J. M. (2015). Evaluation of MBCT for Adolescents with ADHD and Their Parents: Impact on Individual and Family Functioning. Journal of Child & Family Studies, 24, 76-94. https://doi.org/10.1007/s10826-013-9815-1
[13]
Hayes, S. A., & Watson, S. L. (2013). The Impact of Parenting Stress: A Meta-Analysis of Studies Comparing the Experience of Parenting Stress in Parents of Children with and without Autism Spectrum Disorder. Journal of Autism & Developmental Disorders, 43, 629-642. https://doi.org/10.1007/s10803-012-1604-y
[14]
Heiman, T. (2002). Parents of Children with Disabilities: Resilience, Coping and Future Expectations. Journal of Developmental and Physical Disabilities, 14, 159-171. https://doi.org/10.1023/A:1015219514621
[15]
Heiman, T., & Berger, O. (2008). Parents of Children with Asperger Syndrome or with Learning Disabilities: Family Environment and Social Support. Research in Developmental Disabilities, 29, 289-300. https://doi.org/10.1016/j.ridd.2007.05.005
[16]
Hock, R. M., Timm, T. M., & Ramisch, J. L. (2012). Parenting Children with Autism Spectrum Disorders: A Crucible for Couple’s Relationships. Child & Family Social Work, 17, 406-415. https://doi.org/10.1111/j.1365-2206.2011.00794.x
[17]
Jahangir, H., & Batool, S. S. (2017). Protective and Risk Factors of Marital Quality among Parents of Children with ADHD. Journal of Behavioural Sciences, 27, 108-126.
[18]
Johnston, C., Chen, M., & Ohan, J. (2006). Mothers’ Attributions for Behavior in Non-Problem Boys, Boys with Attention-Deficit/Hyperactivity Disorder, and Boys with Attention-Deficit/Hyperactivity Disorder and Oppositional Defiant Behavior. Journal Clinical Child Adolescent Psychology, 35, 60-71. https://doi.org/10.1207/s15374424jccp3501_6
[19]
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, 247-277. https://doi.org/10.1007/s10567-012-0119-6
[20]
Kendall, J. (1998). Outlasting Disruption. The Process of Reinvestment in Families with ADHD Children. Qualitative Health Research, 8, 893-856. https://doi.org/10.1177/104973239800800609
[21]
Lai, W. W., & Oei, T. P. S. (2014). Coping in Parents and Caregivers of Children with Autism Spectrum Disorders (ASD): A Review. Review Journal of Autism and Developmental Disorders, 1, 207-224. https://doi.org/10.1007/s40489-014-0021-x
[22]
Lazarus, R. S., & Folkman, S. (1984). Stress Appraisal and Coping. New York: Springer.
[23]
Lord, C., & Bishop, S. L. (2010). Autism Spectrum Disorders: Diagnosis, Prevalence, and Services for Children and Families. Social Policy Report, 24, 1-27. https://doi.org/10.1002/j.2379-3988.2010.tb00063.x
[24]
Lovell, B., Moss, M., & Wetherell, M. A. (2012). With a Little Help from My Friends: Psychological, Endocrine and Health Corollaries of Social Support in Parental Caregivers of Children with Autism or ADHD. Research in Developmental Disabilities, 33, 682-687. https://doi.org/10.1016/j.ridd.2011.11.014
[25]
Marsack, C. N., & Samuel, P. S. (2017). Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism. Journal of Autism & Developmental Disorders, 47, 2378-2389. https://doi.org/10.1007/s10803-017-3157-6
[26]
Meirsschaut, M., Roeyers, H., & Warreyn, P. (2010). Parenting in Families with a Child with an Autism Spectrum Disorder and a Typically Developing Child: Mothers’ Experiences and Cognitions. Research in Autism Spectrum Disorders, 4, 661-669. https://doi.org/10.1016/j.rasd.2010.01.002
[27]
Mofokeng, M., & van der Wath, A. E. (2017). Challenges Experienced by Parents Living with a Child with Attention Deficit Hyperactivity Disorder. Journal of Child and Adolescent Mental Health, 29, 137-145. https://doi.org/10.2989/17280583.2017.1364253
[28]
Morrison, J. Q., Sansosti, F. J., & Hadley, W. M. (2009). Parent Perceptions of the Anticipated Needs and Expectations for Support for Their College-Bound Students with Asperger’s Syndrome. Journal of Postsecondary Education and Disability, 22, 78-87.
[29]
Multhauf, B., Buschmann, A., & Soellner, R. (2016). Effectiveness of a Group-Based Program for Parents of Children with Dyslexia. Reading & Writing, 29, 1203-1223. https://doi.org/10.1007/s11145-016-9632-1
[30]
Nealy, C. E., O’Hare, L., Powers, J. D., & Swick, D. C. (2012). The Impact of Autism Spectrum Disorders on the Family: A Qualitative Study of Mothers’ Perspectives. Journal of Family Social Work, 15, 187-201. https://doi.org/10.1080/10522158.2012.675624
[31]
Power, P., Dell Orto, A., & Gibbons, M. (1988). Family Intervention throughout Chronic Illness and Disability. New York: Springer.
[32]
Saini, M., Stoddart, K. P., Gibson, M. et al. (2015). Couple Relationship among Parents of Children and Adolescents with Autism Spectrum Disorder: Findings from a Scoping Review of the literature. Research in Autism Spectrum Disorders, 17, 142-157. https://doi.org/10.1016/j.rasd.2015.06.014
[33]
Smith, L. E., Greenberg, J. S., & Seltzer, M. M. (2012). Social Support and Well-Being at Mid-Life among Mothers of Adolescents and Adults with Autism Spectrum Disorders. Journal of Autism & Developmental Disorders, 42, 1818-1826. https://doi.org/10.1007/s10803-011-1420-9
[34]
Stewart, M., Knight, T., McGillivray, J., Forbes, D., & Austin, D. W. (2017). Through a Trauma-Based Lens: A Qualitative Analysis of the Experience of Parenting a Child with an Autism Spectrum Disorder. Journal of Intellectual & Developmental Disability, 42, 212-222. https://doi.org/10.3109/13668250.2016.1232379
[35]
Theule, J., Wiener, J., Tannock, R., & Jenkins, J. M. (2013). Parenting Stress in Families of Children with ADHD: A Meta-Analysis. Journal of Emotional and Behavioral Disorders, 21, 3-17. https://doi.org/10.1177/1063426610387433
[36]
Vernhet, C., Dellapiazza, F., Blanc, N. et al. (2019). Coping Strategies of Parents of Children with Autism Spectrum Disorder: A Systematic Review. European Child & Adolescent Psychiatry, 28, 747-758. https://doi.org/10.1007/s00787-018-1183-3
[37]
Weyers, L., Zemp, M., & Alpers, G. W. (2019). Impaired Interparental Relationships in Families of Children with Attention-Deficit/Hyperactivity Disorder (ADHD). Zeitschrift für Psychologie (Journal of Psychology), 227, 31-41. https://doi.org/10.1027/2151-2604/a000354
[38]
Williams, N. J., Harries, M., & Williams, A. M. (2014). Gaining Control: A New Perspective on the Parenting of Children with AD/HD. Qualitative Research in Psychology, 11, 277-297. https://doi.org/10.1080/14780887.2014.902524
