Volume 19 Issue 5
May  2021
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Article Navigation >  Chinese Journal of General Practice  > 2021  >  19(5): 825-829
CHEN Yue-xiang, LIU An-nuo, ZHU Gui-yue, LIU Jin-yu. A qualitative study on parental stigma in parents of children with tethered cord syndrome[J]. Chinese Journal of General Practice, 2021, 19(5): 825-829. doi: 10.16766/j.cnki.issn.1674-4152.001927
Citation: CHEN Yue-xiang, LIU An-nuo, ZHU Gui-yue, LIU Jin-yu. A qualitative study on parental stigma in parents of children with tethered cord syndrome[J]. Chinese Journal of General Practice, 2021, 19(5): 825-829. doi: 10.16766/j.cnki.issn.1674-4152.001927
shu

A qualitative study on parental stigma in parents of children with tethered cord syndrome

doi: 10.16766/j.cnki.issn.1674-4152.001927
  • 1.

    Department of Neurosurgery, Anhui Children's Hospital, Hefei, Anhui 230001, China

Funds:

 1808085MH277

  • Received Date: 2020-04-21
    Available Online: 2022-02-16
    Abstract
  •   Objective  The aim of this study was to explore the experience, origin and coping style of the associated stigma in parents of children with tethered cord syndrome caused by congenital factors, and provide basis for formulating targeted intervention measures.  Methods  We used the phenomenological research methods, the purpose sampling method to select parents of children with tethered cord syndrome, from February 2018 to December 2019, from the neurosurgery department of Anhui Children's Hospital in Anhui province, 18 patients were diagnosed with meningomyelocele bulging, bifida spine, fur sinus combined the semi-structured interviews was conducted. The Colaizzi's method was used to analyze the field recording.  Results  The experience of the associated stigma in parents of children with tethered cord syndrome caused by congenital factors was summarized as three themes: inferiority and complaint, guilt and remorse, anxiety and worry. The sources are summarized as follows: lack of disease knowledge, Poor family finances, negative social support, discrimination and indifference. Coping styles are summarized as follows: passively waiting, isolated avoidance and face positively.  Conclusion  Associated stigma experience of in parents of children with tethered cord syndrome is complex, which comes from social factors, family factors, personal factors, their active ability to cope with the care of disease in children with associated stigma. The medical staff should provide targeted intervention measures based on their different psychological experiences, sources and coping styles, provide disease knowledge education, science popularization, care skills guidance, and special disease subsidy policies, etc., to increase parents' awareness of diseases and reduce their ties. Stigma, improve their active coping ability, face problems, solve problems, and cooperate with treatment.

     

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