Quality of LIfe of Huntington’s Patients Informal Caregivers
Keywords:
Huntington’s disease, Caregivers, Quality of lifeAbstract
Introduction: Huntington’s disease (HD) is an inherited neurodegenerative disease which affects the movement and leads to the progressive cognitive deficits and behavioral capacities. Care for a Huntington patient is a complex process with a major impact on health, well-being and quality of life of Informal Caregivers (IC).
Objective: To evaluate the impact of HD in the Quality of Life (QoL) Informal Caregiver, and to verify if the socio-demographic, contextual and clinical variables relate to that QoL.
Methods: This is a quantitative study, descriptive and correlational with 50 IC members of the “Asociación de Corea de Huntington Española”. We used the Spanish version of the questionnaire: Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) as the data collection instrument.
Results: The participants are mostly female, averaging 50.04 years of age, married with a high level of literacy and active. The IC have a moderate QoL in which the caregiver role has great impact. However “the life satisfaction” and “feelings about life with HD” which appear to alleviate this burden. Data showed that the educational level and the number of hours of daily care influenced the QoL.
Conclusions: The results reinforce the multidimensionality and variability of QoL of the Huntington’s patients IC and highlight the need for health professionals to take a chance on intervention programs in the community, in order to capacitate the IC to provide care and promote their QoL.
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