Quality of life in adult women with Turner syndrome: the role of family support
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Abstract
This qualitative descriptive study examined how family support shapes the quality of life of adult women with Turner syndrome in Ecuador, drawing on structured interviews with six participants aged 20 years or older who were linked to the Ecuadorian Foundation for Turner Syndrome Support (FEPAST) through nonprobability convenience sampling, while the transcripts were examined using thematic analysis; within this frame, the findings suggest that family support, especially its emotional and instrumental components, and also the economic one, strengthens self esteem, facilitates adherence to follow up and treatment, and offers containment during episodes of pain or discomfort, whereas open communication enables needs to be voiced and attenuates the psychosocial impact of the syndrome on self image and social participation. Nevertheless, tensions related to social comparison and the chronic clinical burden persist, so family support functions as a protective resource that, without removing all difficulties, improves perceived well being and the organization of daily life; consequently, it is advisable to reinforce health social-work interventions focused on family psychoeducation and support networks, as well as to expand future research with mixed designs and larger samples in order to estimate comparative effects with greater precision.
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Diana Elizabeth Alava-Bravo, Universidad Técnica de Manabí - Ecuador
https://orcid.org/0000-0002-7848-6632
Bachelor's degree in Social Work, graduated from the Technical University of Manabí in the city of Portoviejo, with an academic Master's degree and professional experience in Social Work, specializing in techniques and interventions offered by the Technical University of Manabí, Ecuador.
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