Burden and quality of life of caregivers for hemodialysis patients

Belasco, Angélica Gonçalves Silva; Sesso, Ricardo

doi:10.1053/ajkd.2002.32001

Cited by 158 publications

(218 citation statements)

References 31 publications

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“…This relation has been previously described in studies with the primary caregivers of adults and older adults 26,27 , but no previous study investigated this relation in people responsible for children with neuromuscular diseases.…”

Section: Discussionmentioning

confidence: 70%

Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

Moura

Wutzki

Voos

et al. 2015

Arq. Neuro-Psiquiatr.

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Objective:The relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers. Method: This study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables. Results: The occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers' burden was related to lower caregivers' QOL and to higher patients' ages.Keywords: Duchenne muscular dystrophy, behavior, quality of life, motor activity. RESUMOObjetivo: A relação entre qualidade de vida e função motora de pacientes com distrofia muscular de Duchenne (DMD) e sobrecarga e qualidade de vida (QV) dos cuidadores não está clara na literatura. Esse estudo investigou possíveis relações entre dependência funcional/ QV de pacientes e sobrecarga/QV dos cuidadores em 35 meninos (6-17 anos) com DMD e respectivos cuidadores (acima de 21 anos). Método: Cada cuidador respondeu ao questionário de QV da Organização Mundial de Saúde e de sobrecarga de Zarit e o paciente foi avaliado com a medida de função motora e o Autoquestionnaire Qualité de vie Enfant Imagé. Correlações de Spearman e regressões lineares investigaram possíveis relações entre as variáveis. Resultados: A ocorrência de menor QV e maior sobrecarga entre cuidadores foi evidenciada, enquanto a dependência funcional dos pacientes não foi considerada fator

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Section: Discussionmentioning

confidence: 70%

Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

Moura

Wutzki

Voos

et al. 2015

Arq. Neuro-Psiquiatr.

View full text Add to dashboard Cite

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“…[16][17][18] Caregivers tend to develop more psychopathology than physical illness, make more visits to physicians and report worse health than the general population. 15 Over half of the subjects (53.3%) in this study were sole caregivers, taking upon themselves the full responsibility not only of caring for the individuals with paraplegia but also of housekeeping tasks without any help from a secondary caregiver.…”

Section: Discussionmentioning

confidence: 87%

“…In Brazil, it is part of the culture to provide total support to relatives with disabilities or with special needs. Belasco and Sesso 15 reported an average of 8 h/day spent by caregivers in the care of patients who need hemodialysis. Even if most of the primary caregivers (73.3%) work outside their homes, some of them (26.7%) were retired or housewives, with no job-related activity outside their residences.…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life of primary caregivers of persons with paraplegia

2007

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Study Design: A cross-sectional descriptive study was performed with structured questionnaires and interviews conducted with 60 primary caregivers of persons with paraplegia (T1 to S2) owing to traumatic spinal cord injury (SCI). Objectives: The purpose of this study was the assessment of the health-related quality of life (HRQoL) of primary caregivers of persons with paraplegia owing to traumatic SCI. Setting: Sa˜o Paulo, SP, Brazil. Methods: The HRQoL was assessed by the Short Form-36 (SF-36) health survey questionnaire and caregiver burden was evaluated by the Caregiver Burden Scale (CBS). Results: Among 60 caregivers evaluated, 49 (81.7%) were female, with mean age of 35.8 (SD ¼ 12.91) years, 16 (26.6%) being wives and 14 (23.4%) sisters of persons with paraplegia. It was found that the caregivers spend an average of 11.3 h/day caring for individuals with paraplegia. Twenty-three caregivers (38.3%) had a chronic disease and 32 (53.3%) were sole caregivers taking upon themselves the full responsibility of caring for the persons with paraplegia. The subjects reported lower scores on bodily pain and vitality than the other dimensions of the SF-36. The mean global CBS score was 1.71 (SD ¼ 0.50) and mean scores for each dimension ranged from 1.39 (SD ¼ 0.64) for emotional involvement to 2.44 (SD ¼ 0.79) for environment dimension. Conclusion: The primary caregivers of spinal cord-injured persons reported low scores on all of the SF-36 and CBS dimensions, bodily pain and vitality being the SF-36 dimensions that received the lowest scores. Sponsorship: Funding was provided by the Brazilian research agency CAPES.

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“…In general, these specific psychosocial components have already demonstrated their effectiveness on the informal caregivers' burden in oncological patients and those with insanity (Patterson et al, 2000;Zarit and Leitsch, 2001;GallagherThompson et al, 2003;Haley, 2003;Balla et al, 2007). (4) The psychological and educational support must be included in the HHS to increase their effectiveness in the relief of the burden as other authors in more specific fields have established such as the informal caregivers of patients with dementia or hemodialysis (Brodaty, 1992;Gallart and Connell, 1997;Belasco and Sesso, 2002).…”

Section: Discussionmentioning

confidence: 99%