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Revista Cubana de Salud Pública

On-line version ISSN 1561-3127


FERNANDEZ VEGA, Dany; LORENZO RUIZ, Alexis  and  ZALDIVAR VAILLANT, Tatiana. Burden in primary informal caregivers of adults with chronic neurological diseases. Rev Cubana Salud Pública [online]. 2019, vol.45, n.2  Epub July 15, 2019. ISSN 1561-3127.


Although human population’s aging is a global phenomenon, in Cuba the demographic changes are significant. The increase of the life expectancy and the development of chronic neurological diseases rise the number of primary informal caregivers.


The aim of this paper was to characterize the burden in primary informal caregivers of people with chronic neurological diseases that have clinical expression in adults.


Descriptive, correlational, transversal and non-experimental study that was conceived from a mixed methodology. The sample was formed of 19 primary informal caregivers with an average age of 46 years, and some techniques were used with them such as the Initial interview for characterizing the caregiver and the person they care, the semi-structured interview and the Zarit´s Burden Scale. For the analysis of the results, content analysis, methodological triangulation and descriptive and inferential statistics were used.


It was possible to identify a trend to perceive burden in the care process due to the presence of stressors such as: the decreased validity of the patient; the modification of work activity; the years of duration of the disease; the daily hours dedicated to care; the multiplicity of roles parallel to that of the caregiver and the multiple tasks of care.


The results of the care process linked with the burden are expressed as a trend in: a decrease in the free time of the caregivers; a deterioration of their psychic health; negative mood and an increase of their responsibilities, being the impact of the care the most significant dimension.

Keywords : caregivers; caregiver burden; chronic neurological diseases; primary caregivers; informal caregivers.

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