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:: Volume 5, Number 1 (5-2016) ::
J Qual Res Health Sci 2016, 5(1): 127-135 Back to browse issues page
The Lived Experiences of the Mother of a Child with Werdnig-Hoffman Syndrome: A Qualitative Case Study
Fereshteh Araghian Mojarad, Dr Akram Sanagoo, Dr Leila Jouibari *
Abstract:   (3817 Views)

Introduction: Werdnig-Hoffman syndrome is a progressive neurodegenerative disease and an autosomal recessive disorder. This was a qualitative case study focusing on lived experiences of the mother of 2 children with Werdnig-Hoffman syndrome.

Case Report: The case was a 37-year-old widowed, mother of two children with Werdnig-Hoffman syndrome. The first child had died at age 5 due to breathing and swallowing issues and the second child is now 2 years old and has tracheostomy. The mother's experiences of living with children with Werdnig-Hoffman syndrome were “the disintegration of family life, observing the slow death of a children, understanding the children’s feelings, and caring for an ill child”.

Conclusion: The results of the present study suggest that the mother had experienced distress due to the disintegration of life, and observing the death of a child, and caring for a sick child. Financial problems, substance abuse, and the death of the spouse were due to the crippling costs and issues of the disease.

Keywords: Werdnig-Hoffman syndrome, Mother-child relationship, Family, Care giver, Case report, Phenomenology
Full-Text [PDF 145 kb]   (1000 Downloads)    
Type of Study: case report | Subject: Special
Received: 2015/07/13 | Accepted: 2015/10/6 | Published: 2016/08/26
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Araghian Mojarad F, Sanagoo A, Jouibari L. The Lived Experiences of the Mother of a Child with Werdnig-Hoffman Syndrome: A Qualitative Case Study. J Qual Res Health Sci. 2016; 5 (1) :127-135
URL: http://jqr.kmu.ac.ir/article-1-526-en.html
Volume 5, Number 1 (5-2016) Back to browse issues page
مجله تحقیقات کیفی در علوم سلامت Journal of Qualitative Research in Health Sciences
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