Journal of Child and Family Studies

, Volume 24, Issue 7, pp 2147–2154 | Cite as

Psychosocial Challenges for Parents of Children with Cerebral Palsy: A Qualitative Study

  • Nasrin Alaee
  • Farahnaz Mohammadi Shahboulaghi
  • Hamidreza Khankeh
  • Sima Mohammad Khan Kermanshahi
Original Paper

Abstract

Care of a child with cerebral palsy is a source of tension and struggle for parents and causes many problems in meeting the child’s needs. Therefore, this study was performed to explore the experiences of parents who have children with cerebral palsy. This qualitative study was conducted in 2011–2012 using content analysis through purposeful sampling and by participation of 17 Iranian parents (27–59 years old) of children with cerebral palsy who were referred to the rehabilitation centers in Tehran. The data were gathered by an in-depth semi-structured interview. All of the interviews were transcribed and analyzed inductively. The content analysis revealed four subcategories, “inadequate facilities and services,” “unsupportive interactions,” “limitation of parents’ social relations,” and “social seclusion of the child and parent,” in the category of social challenges, and three subcategories, “intrapersonal conflicts,” “being worried,” and “sense of loneliness,” in the category of psychoemotional challenges. Caring for a child with cerebral palsy exposes the parents to challenges, some of which are related to the nature of the child’s disease, and some are due to a shortage of facilities and lack of attention to the parents’ needs. Therefore, to promote the parents’ health and provide better care services to the afflicted child, it is important to recognize the parents’ problems and remove such obstacles.

Keywords

Children Cerebral palsy Parents Psychosocial challenges Content analysis 

References

  1. Ahmadizadeh, Z. (2012). Comparison of musculoskeletal pain, depression and quality of life between mothers of children with cerebral palsy and mothers with typically developed children. Master Thesis. University of Social Welfare and Rehabilitation Science, Tehran, Iran.Google Scholar
  2. Ambikile, J. S., & Outwater, A. (2012). Challenges of caring for children with mental disorders: Experiences and views of caregivers attending the outpatient clinic at Muhimbili National Hospital, Dar es Salaam-Tanzania. Child and Adolescent Psychiatry and Mental Health, 6. www.capmh.com/content/6/1/16.
  3. Armstrong, M. I., Birnie-Lefcovitch, S., & Ungar, M. T. (2005). Pathways between social support, family well being, quality of parenting, and child resilience: What we know. Journal of Child and Family Studies, 14, 269–281.CrossRefGoogle Scholar
  4. Barbosa, M. A. M., Chaud, M. N., & Gomes, M. M. F. (2008). Experiences of mothers of disabled children: A phenomenological study. Acta Paulista de Enfermagem, 21, 46–52.CrossRefGoogle Scholar
  5. Bogaerts, S. (2006). Feelings of subjective emotional loneliness: An exploration of attachment. Social Behavior and Personality, 34, 797–812.CrossRefGoogle Scholar
  6. Coffey, J. S. (2006). Parenting a child with chronic illness: A metasynthesis. Pediatric Nursing, 32, 51–59.PubMedGoogle Scholar
  7. Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K., & Davern, M. (2010). The impact of caring for a child with cerebral palsy: Quality of life for mothers and fathers. Child: Care, Health and Development, 36, 63–73.Google Scholar
  8. Dixon, A. (2011). Forgotten families: The impact of isolation on families with disabled children. www.cafamily.org.uk.
  9. Elo, S., & Kyngas, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62, 107–115.PubMedCrossRefGoogle Scholar
  10. Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112.PubMedCrossRefGoogle Scholar
  11. Ha, J. H., Greenberg, J. S., & Seltzer, M. M. (2011). Supportive relationships parenting a child with a disability: The role of social support for African American parents. Families in Society, 92, 405–411.PubMedCentralPubMedCrossRefGoogle Scholar
  12. Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288.PubMedCrossRefGoogle Scholar
  13. Huang, Y. P., Kellett, U., & St John, W. (2011). Being concerned: Care giving for Taiwanese mothers of a child with cerebral palsy. Journal of Clinical Nursing, 21, 189–197.PubMedCrossRefGoogle Scholar
  14. Kazerani, S. (2003). Survey of relation between level of movement disability in cerebral palsy children 0-6 years old and depression in their mothers at welfare centers in 4 regions of Tehran. Master Thesis, University of Social Welfare and Rehabilitation Science, Tehran, Iran.Google Scholar
  15. Khayatzadeh, M. (2009). A comparative study about quality of life in mothers of children with cerebral palsy, mental retardation and mothers of normal children. Scientific-Research Journal of Shahed University, 16, 1–10.Google Scholar
  16. Klassen, A. F., Gulati, S., Watt, L., Banerjee, A. T., Sung, L., Klaassen, R. J., et al. (2012). Immigrant to Canada, newcomer to childhood cancer: A qualitative study of challenges faced by immigrant parents. Psycho-Oncology, 21, 558–562.PubMedCrossRefGoogle Scholar
  17. Knox, V. (2008). Do parents of children with cerebral palsy express different concerns in relation to their child’s type of cerebral palsy, age and level of disability? Physiotherapy, 94, 56–62.CrossRefGoogle Scholar
  18. Lawlor, K., Mihaylov, S., Welsh, B., Jarvis, S., & Colver, A. (2006). A qualitative study of the physical, social and attitudinal environments influencing the participation of children with cerebral palsy in northeast England. Pediatric Rehabilitation, 9, 219–228.PubMedGoogle Scholar
  19. Lutenbacher, M., Sharon, K., Gladys, A., Howe, D., & Williams, M. (2005). Crossing community sectors: Challenges faced by families of children with special health care needs. Journal of Family Nursing, 11, 162–182.PubMedCrossRefGoogle Scholar
  20. McCubin, M. A., & Hung, S. T. T. (1989). Family strengths in the care of handicapped children: Targets for intervention. Family Relations, 38, 436–443.CrossRefGoogle Scholar
  21. Mendenhall, A. N., & Mount, K. (2011). Parents of children with mental illness: Exploring the caregiver experience and caregiver-focused interventions. Families in Society, 92, 183–190.CrossRefGoogle Scholar
  22. Nelson, A. M. (2002). Metasynthesis: Mothering other-than-normal children. Qualitative Health Research, 12, 515–530.PubMedCrossRefGoogle Scholar
  23. Okurowska-Zawada, B., Kułak, W., Wojtkowski, J., Sienkiewicz, D., & Paszko-Patej, G. (2011). Quality of life of parents of children with cerebral palsy. Progress in Health Sciences, 1, 116–123.Google Scholar
  24. Oskoui, M., Coutinho, F., Dykeman, J., Jetté, N., & Pringsheim, T. (2013). An update on the prevalence of cerebral palsy: A systematic review and meta-analysis. Developmental Medicine and Child Neurology, 55, 509–519.PubMedCrossRefGoogle Scholar
  25. Palisano, R. J., Almarsi, N., Chiarello, L. A., Orlin, M. N., Bagley, A., & Maggs, J. (2009). Family needs of parents of children and youth with cerebral palsy. Child: Care, Health and Development, 36, 85–92.Google Scholar
  26. Palisano, R., Rosenbaum, P., Bartlett, D., & Livingston M. (2007). GMFCS—E & R, gross motor function classification system expanded and revised. Can Child Centre for Childhood Disability Research. McMaster University. motorgrowth.canchild.ca/gmfcs/resourcesgmfcs-er.Google Scholar
  27. Park, E. S., Oh, W. O., Suk, M. H., & Yoon, Y. M. (2009). From their own response: Experiences of Korean children with chronic illness and their families. Journal of Korean Academic Child Health Nursing, 15, 350–358.CrossRefGoogle Scholar
  28. Polit, D. F., & Beck, C. T. (2006). Essentials of nursing research methods, appraisal and utilization (6th ed.). Philadelphia: Lippincott Williams & Wilkins.Google Scholar
  29. Pullmann, M. D., Vanhooser, S., Hoffman, C., & Heflinger, C. A. (2010). Barriers to and supports of family participation in a rural system of care for children with serious emotional problems. Community Mental Health Journal, 46, 211–220.PubMedCentralPubMedCrossRefGoogle Scholar
  30. Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, 626–636.CrossRefGoogle Scholar
  31. Raman, S. R., Mandoda, S., Hussain, L. K., Foley, N., Hamdan, E., & Landry, M. (2010). Exploring the meaning of childhood disability: Perceptions of disability among mothers of children with disabilities (CWD) in Kuwait. World Health and Population, 11, 49–60.PubMedCrossRefGoogle Scholar
  32. Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55, 139–150.PubMedCrossRefGoogle Scholar
  33. Richards, C. L., & Malouin, F. (2013). Cerebral palsy: Definition, assessment and rehabilitation. Handbook Clinical Neurology, 111, 183–195.Google Scholar
  34. Rosenbaum, P., & Stewart, D. (2004). The world health organization international classification of functioning, disability, and health: A model to guide clinical thinking, practice and research in the field of cerebral palsy. Seminars in Pediatric Neurology, 11, 5–10.PubMedCrossRefGoogle Scholar
  35. Sadeghi, F. (2004). Evaluation the effect of occupational therapy education and consultation on the stress of the mothers with a cerebral palsy child. Master Thesis. University of Social Welfare and Rehabilitation Science, Tehran, Iran.Google Scholar
  36. Sajedi, F. (2008). Survey of quality of life in mothers with cerebral palsy child. Research project. University of Social Welfare and Rehabilitation Science, Tehran, Iran.Google Scholar
  37. Sen, E., & Yurtsever, S. (2007). Difficulties experienced by families with disabled children. Journal for Specialists in Pediatric Nursing, 12, 238–252.PubMedCrossRefGoogle Scholar
  38. Shakoor, M., Tavakol, K., Karimi, M., & Tavakol, N. (2009). The lived experiences of Iranian family members with disable children: A phenomenological study. Research in Rehabilitation Science, 5, 48–56.Google Scholar
  39. Tsai, S. M., & Wang, H. H. (2009). The relationship between caregiver’s strain and social support among mothers with intellectually disabled children. Journal of Clinical Nursing, 18, 539–548.PubMedCrossRefGoogle Scholar
  40. United Nations. (1989) Convention on the Rights of the Child. From: www.ohchr.org/Documents/ProfessionalInterest/crc.pdf.
  41. Whittingham, K., Wee, D., Sanders, M., & Boyd, R. (2011). Responding to the challenges of parenting a child with cerebral palsy: A focus group. Disability and Rehabilitation, 33, 1557–1567.PubMedCrossRefGoogle Scholar
  42. Yantzi, N. M., Rosenberg, M. W., & McKeever, P. (2007). Getting out of the house: The challenges mothers face when their children have long-term care needs. Health and Social Care in the Community, 15, 45–55.PubMedCrossRefGoogle Scholar
  43. Yeargin-Allsopp, M., Braun, K. V. N., Doernberg, N. S., Benedict, R. E., Kirby, R. S., & Durkin, M. S. (2008). Prevalence of cerebral palsy in 8-year-old children in three areas of the United States in 2002: A multisite collaboration. Pediatrics, 121, 547–554.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Nasrin Alaee
    • 2
  • Farahnaz Mohammadi Shahboulaghi
    • 1
  • Hamidreza Khankeh
    • 2
  • Sima Mohammad Khan Kermanshahi
    • 3
  1. 1.Social Determinants of Health Research CenterUniversity of Social Welfare and Rehabilitation SciencesTehranIran
  2. 2.Department of NursingUniversity of Social Welfare and Rehabilitation SciencesTehranIran
  3. 3.Department of Nursing, Faculty of MedicineTarbiat Modares UniversityTehranIran

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