Assessment of the Quality of Life of Mothers of Children with Cerebral Palsy (Primary Caregivers)

Öneş, Kadriye; Yilmaz, Ebru Özden; Cetinkaya, Banu; Caglar, Nil Sayiner

doi:10.1177/1545968305278857

Cited by 175 publications

(181 citation statements)

References 14 publications

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“…De fato, a criança com PC, em decorrência das limitações, torna-se cada vez mais dependente de sua mãe e de seus familiares, o que pode dificultar o processo de individualização e da forma que está sendo abordada à questão da independência nas suas atividades básicas da vida diária (16) . Neste contexto é comum as mães que relataram alteração no desenvolvimento dos menores, quando comparados com outras crianças de idade cronológica semelhante, e apesar disto, a maioria delas demonstra despreparo nas atividades como as de assistência na higiene, alimentação, vestuário, transferên-cias e atividades lúdicas (8) .…”

Section: Resultsunclassified

Percepção da família quanto à doença e ao cuidado fisioterapêutico de pessoas com paralisia cerebral

2012

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O estudo objetivou conhecer a percepção da família quanto à doença e ao cuidado fisioterapêutico de pessoas com Paralisia Cerebral. Os dados foram coletados por meio de entrevista semiestruturada junto a 24 cuidadores de crianças com paralisia cerebral que freqüentam a APAE de Guarapuava-PR. Os resultados mostraram que metade das crianças era quadriplégica e afásica e a maioria apresentava dependência para atividades da vida diária. As mães / cuidadores revelaram desconhecer a patologia de base e o tratamento fisioterapêutico que era realizado com seus filhos na Instituição. Conclui-se pela necessidade de estratégias que promovam maior interação familiar-profissional de saúde, possibilitando ao cuidador participar mais do tratamento e, por conseguinte, aprender e colocar em prática atividades benéficas para a criança.

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Section: Resultsunclassified

Percepção da família quanto à doença e ao cuidado fisioterapêutico de pessoas com paralisia cerebral

2012

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“…In another limiting neurological disease, the cerebral palsy, this influence of functional aspects of the child on the caregivers QOL has been previously investigated. The functional limitations of the children, measured by a functional scale (the Gross Motor Function Classification Scale) did not interfere on the QOL of the caregivers 30,31 . We found the same results among children with DMD and caregivers.…”

Section: Discussionmentioning

confidence: 96%

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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“…Studies in caregivers of children with various chronic illnesses have shown that such caregivers report an impaired QoL compared to that of caregivers of healthy children. [18][19][20][21][22] We hypothesized that caregivers of children with SCD have a lower QoL compared to that of the healthy Dutch female population and caregivers of healthy children with the same SES.…”

Section: Introductionmentioning

confidence: 99%

Quality of life of female caregivers of children with sickle cell disease: a survey

Tweel¹,

Hatzmann²,

Ensink³

et al. 2008

Haematologica

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Caring for a child with sickle cell disease poses extra demands on parents, both practically and psychologically, which may influence their quality of life. Since families of children with sickle cell disease in the Netherlands usually belong to immigrant communities with a low socio-economic status, there may be an additional strain on caregivers. The aim of the present study was to evaluate the quality of life of caregivers of children with sickle cell disease. The quality of life of female caregivers of sickle cell disease patients, measured with the TNO-AZL Adult Quality of Life questionnaire, was compared to the norm data of healthy Dutch females (n=700) and female caregivers of healthy children with the same socio-economic status and ethnic background (socio-economic status control group). Groups were compared by the Mann-Whitney U test. Point estimates and 95% confidence intervals of the median difference are presented. The results of questionnaires of 54 caregivers of children with sickle cell disease and 28 caregivers of a control group of the same socio-economic status were analyzed. Caregivers of patients with sickle cell disease had a significantly lower quality of life on all subscales compared to the Dutch norm population. Compared to the control group of the same socio-economic status, the quality of life of caregivers of patients with sickle cell disease was significantly lower on the subscales depressive moods, daily activities and vitality. In this first study reporting on the quality of life of caregivers of children with sickle cell disease, we demonstrate a reduced quality of life in these caregivers compared to the healthy Dutch female population and caregivers of healthy children with the same socio-economic status.Key words: sickle cell disease, quality of life, caregivers. Citation

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Assessment of the Quality of Life of Mothers of Children with Cerebral Palsy (Primary Caregivers)

Abstract: The quality of life in MCCPs is significantly lower than that of control mothers. Also, although the BAI scores were not significantly different between the groups, the BDI scores were poorer in MCCPs compared to those the control group.

Cited by 175 publications

References 14 publications

Percepção da família quanto à doença e ao cuidado fisioterapêutico de pessoas com paralisia cerebral

Percepção da família quanto à doença e ao cuidado fisioterapêutico de pessoas com paralisia cerebral

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

Quality of life of female caregivers of children with sickle cell disease: a survey

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