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Revista de Enfermagem Referência
versão impressa ISSN 0874-0283versão On-line ISSN 2182-2883
Resumo
SOUSA, Maria João Vieira de e GRACA, Luís Carlos Carvalho. Burden of informal caregivers of people with amyotrophic lateral sclerosis. Rev. Enf. Ref. [online]. 2022, vol.serVI, n.1, e21081. Epub 27-Maio-2022. ISSN 0874-0283. https://doi.org/10.12707/rv21081.
Background:
Amyotrophic lateral sclerosis (ALS) is an incurable and disabling progressive neurodegenerative disease, where the caregiver plays a key role in meeting the patient’s needs.
Objective:
To analyze the association between caregivers’ sociodemographic and professional characteristics and their burden and between the sociodemographic and clinical characteristics of individuals with ALS and caregivers’ burden.
Methodology:
Descriptive-correlational study. Sample of 30 patients and 30 caregivers. The Informal Caregiver Burden Assessment Questionnaire was used. Parametric and non-parametric tests were used for data analysis.
Results:
The sample of patients had a mean age of 66.4 ± 11.17 years and homogeneous gender distribution. The majority of caregivers were women, spouses, with moderate levels of burden (56.7%), less affected by “reactions to demands” and more affected by “efficacy and control mechanisms” (mean 25.67 ± 21.76 and mean 66.39 ± 21.50). The caregiver’s sociodemographic characteristics, the patient’s functional status, the number of care hours, and the use of non-invasive ventilation were associated with burden levels (sig < 0.05).
Conclusion:
Caregivers have moderate levels of burden, highlighting the importance of proximity care.
Palavras-chave : amyotrophic lateral sclerosis; caregivers; burden; quality of life.