The Social Coping Experiences of a Female Child with Arthrogryposis Multitplex Congenita Shared by her Parents

Authors

  • Mohaned Abed King Abdulaziz University, Jeddah

DOI:

https://doi.org/10.24203/ajeel.v5i2.4675

Keywords:

Social Coping Experiences, Arthrogryposis Multitplex Congenita, children with special needs

Abstract

Arthrogryposis Multiplex Congenita, commonly referred to as AMC, is a disorder recognised by multiple contractures of the joints. The symptoms associated with the disorder span across various levels of severity. Regardless of the physical problems, however, intelligence remains undisturbed.

The aim of this paper is centred on investigating the social coping experiences of a child living with this condition, adopting a qualitative approach to the research. A case study design was adopted for the research, with the theoretical framework applied known as Phenomenology. One sample was used for the data collection, notably a child diagnosed with Arthrogryposis, with her coping experiences shared by her parents. When examining the data, thematic analysis was applied. 

This study has significance in the fact it seeks to develop an understanding of children living with this condition, as well as for the disabled child population as a whole. The key issues seen to arise from this study include the role of social relationships, the role of the parent in socialisation, and the perceptions of others concerning AMC.  

References

• Gullotta, T. P., Adams, G. R., Markstrom, C. A., & Adams, G. R. (2000). The adolescent experience. San Diego, Calif: Academic Press.

• Anonymous (1996). The role of the pediatrician in prescribing therapy services for children with motor disabilities. American Academy of Pediatrics Committee on Children With Disabilities. Pediatrics. 98, 308-10.

• Banister, P. (1994). Qualitative methods in psychology: a research guide. Philadelphia, Open University Press.

• Berns, R. (2004). Child, family, school, community: socialization and support. Belmont, CA, Wadsworth/Thomson Learning.

• Casas, I. (2007). Social Exclusion and the Disabled: An Accessibility Approach. The Professional Geographer. 59, 463-477.

• Coolican, H. (2004). Research methods and statistics in psychology. London, Hodder & Stoughton.

• Diamond, K. E., Huang, H. (2005). Infants & Young Children. An Interdisciplinary Journal of Special Care Practices. 18, 1, 37-46.

• Fereday, J., Muir-Cochrane, E. (2006). Demonstrating Rigor Using Thematic Analysis: A Hybrid Approach of Inductive and Deductive Coding and Theme Development. International Institute for Qualitative Methodology. 5, 1-11.

• Fixsen, J. A. (2010). Athrogryposis multiplex congenital. In: Benson M, Fixsen J, Macnicol M, Parsch K, eds. Children’s Orthopaedics and Fractures 3rd Edition. Springer. Chapter 20, 327-334.

• Staheli, L. T. (1998). Arthrogryposis: A text atlas. New York: Cambridge University Press.

• Goodwin, C. J. (1995). Research in psychology: methods and design. New York, J. Wiley.

• Ham, R., Alersea, P., & Porter, D. (1998). Wheelchair users and postural seating: a clinical approach. London, Churchill Livingstone.

• Hans, A., & Patri, A. (2003). Women, disability, and identity. New Delhi, Sage Publications.

• Healy, A., Smith, B., & Keesee, P. D. (1989). Early services for children with special needs: Transactions for family support. Baltimore, Md: P.H. Brookes Pub. Co.

• Leedy, P. D., & Ormrod, J. E. (2005). Practical research: Planning and design. Upper Saddle River, N.J: Prentice Hall.

• Luterman, D. (1987). Deafness in the family. Boston: College-Hill Press.

• Millard, D. M. (1984). Daily living with a handicapped child. London: Croom Helm.

• Morgan, S. R. (1987). Abuse and neglect of handicapped children. Boston: Little, Brown.

• Morris, J. (1993). Independent lives?: Community care and disabled people. Basingstoke: Macmillan.

• Mueller, W. (1994). Understanding today's youth culture. Wheaton, Ill: Tyndale.

• O'Flaherty, P. (January 01, 2001). Arthrogryposis multiplex congenita. Neonatal Network : Nn, 20, 4, 13-20.

• OLIVER, M., & BARNES, C. (1998). Disabled people and social policy: from exclusion to inclusion. London, Longman.

• OLIVER, M., & SAPEY, B. (2006). Social work with disabled people. Basingstoke, Hampshire, Palgrave Macmillan.

• Palmer, S. J. (February 01, 1993). Care of sick children by parents: a meaningful role.Journal of Advanced Nursing, 18, 2, 185-191.

• Pinkard, T. P. (1994). Hegel's Phenomenology: The sociality of reason. Cambridge: Cambridge University Press.

• Prilleltensky, O. (2004). Motherhood and disability: Children and choices. Houndmills, Basingstoke, Hampshire: Palgrave Macmillan.

• Read, J. (2000). Disability, the family, and society: Listening to mothers. Buckingham: Open University Press.

• Seale, C. (2004). Qualitative research practice. London: SAGE.

• Seiffge-Krenke, I. (1995). Stress, coping, and relationships in adolescence. Mahwah, N.J: L. Erlbaum Associates.

• Sells, J. M., Jaffe, K. M., & Hall, J. G. (January 01, 1996). Amyoplasia, the most common type of arthrogryposis: the potential for good outcome. Pediatrics, 97, 2, 225-31.

• Shaughnessy, J. J., Zechmeister, E. B., & Zechmeister, J. S. (2011). Research methods in psychology. New York, NY: McGraw-Hill.

• Shrout, D. S. (1994). Understanding and accommodating physical disabilities: The manager's desk reference. Westport, Conn: Quorum Books.

• Silverman, D. (2011). Qualitative research: Issues of theory, method, and practice. Los Angeles: Sage.

• Snyder, C. R. (2001). Coping with stress: Effective people and processes. Oxford: Oxford University Press.

• Thomas, D. J. (1982). The experience of handicap. London: Methuen.

• Travers, M. (2001). Qualitative research through case studies. London: SAGE.

• Turner, J. C. (1991). Social influence. Pacific Grove, Calif: Brooks/Cole.

• Vadum, A. C., & Rankin, N. O. (1998). Psychological research: Methods for discovery and validation. Boston, Mass: McGraw-Hill.

• Vandenberg, D. (1997). Phenomenology and educational discourse. Johannesburg: Heinemann.

• Vander, Z. J. W. (1988). The social experience: An introduction to sociology. New York: Random House.

• Wright, B. A. P. (1983). Physical disability, a psychosocial approach. New York: Harper & Row.

• Yin, R. K. (2003). Case study research: Design and methods. Thousand Oaks, Calif: Sage Publications.

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Published

2017-04-22

How to Cite

Abed, M. (2017). The Social Coping Experiences of a Female Child with Arthrogryposis Multitplex Congenita Shared by her Parents. Asian Journal of Education and E-Learning, 5(2). https://doi.org/10.24203/ajeel.v5i2.4675

Issue

Vol. 5 No. 2 (2017): April 2017

Section

Articles

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