Impacto sociobiomédico de la sobreprotección:el Síndrome de Wolfram como ejemplo paradigmático

  1. Esteban Bueno, Gema
  2. Guerra, Jose Manuel
  3. Coca, Juan R.
  4. Ruiz Castañeda, Dyanne
Journal:
Cultura de los cuidados: Revista de Enfermería y Humanidades

ISSN: 1699-6003

Year of publication: 2022

Issue: 62

Pages: 260-278

Type: Article

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More publications in: Cultura de los cuidados: Revista de Enfermería y Humanidades

Abstract

The aim of this article is to analyze the possible existence of overprotection, its social impact, and its effects on the quality of life of people with Wolfram syndrome. The research method is mix: quantitative and qualitative. The quantitative study is based on a correlational-descriptive observational design. The sample consisted of 31 patients aged between 15 and 46 years, diagnosed with Wolfram syndrome in Spain. The quality of life of the patients was analyzed through a questionnaire and the social behaviors of overprotection through a structured ad-hoc interview. On the other hand, a qualitative questionnaire on risk perception and social uncertainty was made. The social uncertainty to which families are subjected leads them to sometimes take overprotective behaviors. However, our results show that this happens more in the group of patients without partners, as well as in the scale absence of overload and free time. The group of people with a partner has greater social support, less overprotection, greater physical/psychological well-being, absence of work overload/leisure time and overall quality of life.

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