Calidad de vida y afrontamiento en cuidadores de niños con enfermedades altamente discapacitantes
Keywords:
Caregivers; Rare disease in childhood; Coping; Quality of life.Abstract
The goal of this descriptive cross-sectional research was to know the sociodemographic profile, the coping capacity, and the perception of health-related quality of life in non-formal caregivers of children with highly disabling rare diseases. 33 caregivers voluntarily participated in our sample, and through a personal interview they answered a questionnaire of sociodemographic data, an evaluation of their coping strategies (COPE questionnaire) and a health-related quality of life measurement (EUROQOL-5D scale and EVA scale for self-assessment of health status).
The results showed a profile mainly comprised of these children’s married mothers, with an average age of 43.64 and with an important level of perception of their quality of life and complications as a consequence of the child's illness. In the matter of their perception of their quality of life, caregivers showed problems performing daily activities, pain or discomfort and anxiety or depression; however, they perceived their overall health as good, since the average score obtained was 68.57 in the range from 0 to 100. Regarding coping strategies, participants showed a high level of acceptance, active coping, and emotional and social support.
The findings of the present research may be useful in designing future nursing intervention plans to promote the physical, psychological, emotional, and social well-being of caregivers of children with rare diseases.
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