Exploring the Lived Experiences of Mothers of Children with Intellectual Disability: A Phenomenological Approach

Document Type : Original Article

Authors

1 PhD, Department of Psychology and Education of People with Special Needs, Faculty of Education and Psychology, University of Isfahan, Isfahan, Iran

2 Lecturer at Farhangian University, Shahid Pakenjad Branch, Yazd, Iran

3 Associate Professor, Department of Psychology and Education of People with Special Needs, Faculty of Education and Psychology, University of Isfahan, Isfahan, Iran

4 Assistant Professor, Department of Psychology and Education of People with Special Needs, Faculty of Education and Psychology, University of Isfahan, Isfahan, Iran

10.22062/jqr.2022.91935

Abstract

Introduction: Living with an intellectually disabled child in the family is associated with some concerns and challenges. However, mothers who play the traditional role of “caregiver” have to take on more responsibilities for their intellectually disabled children. Thus, they face more pressures and psychological problems and experiences. To this end, this study aimed to explore the lived experiences of mothers of children with intellectual disabilities.
Methods: This qualitative study was conducted using a phenomenological approach. The participants were 12 mothers of children with intellectual disabilities who were selected using purposive sampling. The data were collected through in-depth interviews with the participants. The interviews were recorded, transcribed, and analyzed using Colaizzi’s method of data analysis.
Results: Analysis of the experiences of the mothers of children with intellectual disabilities revealed 7 main themes (blame, concerns about the future, child behavioral problems, disrupted interactions, stigma and social isolation, negative thoughts and feelings, and positive achievements) and 16 subthemes that were coded into subcategories of the main themes.
Conclusion: The findings of this study can provide valuable insights into the severity of problems faced by mothers with intellectually disabled children and contribute to adopting supportive treatment strategies for these mothers and improving their mental health. These data can make professionals working with intellectually disabled children familiar with the main challenges and concerns and pave the way for psychologists and psychiatrists to design effective interventions based on the experiences of mothers and the cultural norms of the Iranian community.

Keywords


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    1. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM-5®). 5th edition. American Psychiatric Publishing; 2013.
    2. Luckasson R, Reeve A. Naming, defining, and classifying in mental retardation. Ment Retard. 2001; 39(1):47-52. doi: 10.1352/0047-6765(2001)039<0047:
      NDACIM>2.0.CO;2.
    3. Kauffman JM, Hallahan DP, Cullen Pullen P. editors. Handbook of special education. Routledge; 2011.
    4. Olsson MB, Hwang CP. Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res. 2001; 45(Pt 6):535-43. doi: 10.1046/j.1365-2788.2001.00372.x.
    5. Saloviita T, Itälinna M, Leinonen E. Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABCX model. J Intellect Disabil Res. 2003; 47(Pt 4-5):300-12. doi: 10.1046/j.1365-2788.2003.00492.x. 
    6. Hassall R, Rose J, McDonald J. Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. J Intellect Disabil Res. 2005; 49(Pt 6):405-18. doi: 10.1111/j.1365-2788.2005.00673.x. 
    7. Murphy NA, Christian B, Caplin DA, Young PC. The health of caregivers for children with disabilities: Caregiver perspectives. Child Care Health Dev. 2007; 33(2):180-7. doi: 10.1111/j.1365-2214.2006.00644.x
    8. Gallagher S, Phillips AC, Oliver C, Carroll D. Predictors of psychological morbidity in parents of children with intellectual disability. J Pediatr Psychol. 2008; 33(10):1129-36. doi: 10.1093/jpepsy/jsn040. 
    9. Martorell A, Gutiérrez-Recacha P, Irazábal M, Marsà F, García M. Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. Res Dev Disabil. 2011; 32(6):2847-52. doi: 10.1016/j.ridd.2011.05.021.
    10. Irazábal M, Marsà F, García M, Gutiérrez-Recacha P, Martorell A, Salvador-Carulla L, Ochoa S. Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder. Res Dev Disabil. 2012; 33(3):796-803. doi: 10.1016/j.ridd.2011.12.002. 
    11. O Oshodi YO, M Simoyan O, EA Lesi F, Ibeziako PI. Health care providers' need for child and adolescent mental health (CAMH) training in south-western Nigeria. Adolescent Psychiatry. 2013; 3(1):95-10 doi:10.2174/2210676611303010017.
    12. Miller SM, Chan F. Predictors of life satisfaction in individuals with intellectual disability. J Intellect Disabil Res. 2008; 52(12):1039-47. doi: 10.1111/j.1365-2788.2008.01106.x. 
    13. Baker BL, Blacher J, Crnic KA, Edelbrock C. Behavior problems and parenting stress in families of three-year-old children with and without developmental delays. Am J Ment Retard. 2002; 107(6):433-44. doi: 10.1352/0895-8017(2002)107<0433:BPAPSI>2.0.CO;2.
    14. Herring S, Gray K, Taffe J, Tonge B, Sweeney D, Einfeld S. Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. J Intellect Disabil Res. 2006; 50(Pt 12):874-82. doi: 10.1111/j.1365-2788.2006.00904.x. 
    15. McConkey R, Truesdale Kennedy M, Chang MY, Jarrah S, Shukri R. The impact on mothers of bringing up a child with intellectual disability: A cross-cultural study. Int J Nurs Stud. 2008; 45(1):65-74. doi: 10.1016/j.ijnurstu.2006.08.007.
    16. Wittert DD. Parental reactions to having a child with disabilities. Nurs Spectr (Wash D C). 1998; 8(17):12-4. PMID: 10562166.
    17. Mohammadkhan Kermanshahi S, Vanki Z, Ahmadi F, Azad Fallah P, Kazem Nezhad A. Mother's experiences of having mental retarded child. Archives of Rehabilitation. 2006; 7(3):26-33. [In Persian]
    18. Mousavy Khatat M, Soleimani M, Abdi K. Comparison of cognitive, psychological and social characteristics, between parents who have more than one exceptional child with parents of normal child. Archives of Rehabilitation. 2011; 12 (3):53-64. [In Persian].
    19. Narimani M, Agha mohammadian HR, Rajabi S. A comparison between the mental health of mothers of exceptional children and mothers of normal children. Journal of Fundamentals of Mental Health. 2007; 9(33-34):15-24. [In Persian].
    20. Danaee fard H, Khaef Elahi A, Khodashenas L. Understanding the essence of retirement experience of employees in the public sector: A phenomenological Strategic Management Thought. 2012; 6(2):153-76. [In Persian].
    21. Emami Sigaroodi AH, Dehghan Nayeri N, Rahnavard Z, Noori Saeed A. Qualitative research methodology: Phenomenology. J Holist Nurs Midwifery. 2012; 22(2):56-63. [In Persian].
    22. Britten N. Qualitative interviews in medical research. BMJ. 1995; 311(6999):251-3. doi: 10.1136/bmj.311.
      251.
    23. Saif-Naraghy M, Nadery E. Psychological stress and parents of disabled children. Journal of Exceptional Education. 2002; 10(11): 19-22. [In Persian].
    24. Damrosch SP, Perry LA. Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome. Nurs Res. 1989; 38(1):25-30. PMID: 2521384.
    25. Dini Turki NA, Bahrami H, Davrmanesh A, Biglarian A. The relationship between stress and arital satisfaction of parents with mental retarded children. Quarterly Journal of Rehabilitation. 2006; 7(4):41-46. [In Persian].
    26. Crnic K, Hoffman C, Gaze C, Edelbrock C. Understanding the emergence of behavior problems in young children with developmental delays. Infants and Young Children. 2004; 17(3):223-35.
    27. Rezaee Dehnavi S, Nori AA, Jafari M, Faramarzi S. Investigating stigma phenomenon among mothers with downs syndrome children in Isfahan: A psycho-social approach. Journal of Family Research. 2008: 5(3):401-16. [In Persian].
    28. Friedrich WN, Friedrich WL. Psychosocial assets of parents of handicapped and nonhandicapped children. Am J Ment Defic. 1981; 85(5):551-3. PMID: 6452815.
    29. Gupta A, Singhal N. Positive perceptions in parents of children with disabilities. Asia Pacific Disability Rehabilitation Journal. 2004; 15(1):22-35.
    30. Brobst JB, Clopton JR, Hendrick SS. Parenting children with Autism spectrum disorders: The couple's relationship. Focus on Autism and Other Developmental Disabilities. 2009; 24(1):38-49. doi: 10.1177/1088357608323699.
    31. Risdal D, Singer GH. Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research And Practice For Persons With Severe Disabilities. 2004; 29(2):95-103. /doi.org/10.2511/rpsd.29.2.95.
    32. Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who have disabilities. Ment Retard. 2000; 38(3):195-206. doi: 1352/0047-6765(2000)038<0195:TOAWPC>2.0.CO;2.