Authors

1 Esther Sánchez Vila

Position

1 Enfermera en la Unidad de Cirugía del Hospital Virgen de los Lirios. Alcoy (Alicante).

Contact email: esthersanchez27@hotmail.es

Abstract

Purpose: To understand the profile and needs of main caregivers of patients with Huntington's disease.
Material and methods:  A descriptive observational cross-sectional study. Sample: 21 informal caregivers. Variables: sociodemographic, clinical, and care-related. Ad hoc self-administered questionnaire including: sociodemographic variables, Zarit Caregiver Burden Scale, Duke test, Barthel's Index, and Pffeifer test.
Results: Average main caregiver is a 57-years-old uneducated housewife who is severely overburdened, with poor social support and not receiving any help from Social Services or through the Law of Dependence. Average patient is a 60-years-old uneducated married man who is disabled and physically dependent, and shows a significant cognitive decline.
Conclusions: A high burden in main caregivers of patients with Huntington's disease shows the need for nursing interventions aimed at preventing and treating it.

Keywords:

Huntington\\\'s disease; main caregiver; caregiver burden; social support; dependency level; cognitive decline level

Versión en Español

Título:

Una propuesta de orientación para familiares de pacientes con la enfermedad de Huntington