| Objective To explore the quality of life(QOL) of the primary caregiver of children with cerebral palsy and analyze the factors that may affect the quality of life.To evaluate the impact on activities of daily living of children with cerebral palsy and quality of life of primary caregivers after six months of comprehensive intervention on the primary caregiver of children with cerebral palsy.Methods We collected 198 cerebral palsy children and their primary caregivers as cerebral palsy group in five rehabilitation medical institutions.We also collected 75 normal children and their primary caregivers as normal group in a kindergarten.We evaluated the quality of life of primary caregiver by the Short Form 36 health survey. At same time,we collected their general situation and family background using self-made survey scale and assess activities of daily living(ADL) of children.We adopt comprehensive intervention measures including health education, guidance for family rehabilitation and care methods, psychological intervention, social and economic supports for the primary caregiver of children with cerebral palsy. After six months comprehensive intervention,We evaluated the quality of life of primary caregiver and activities of daily living of children again.To compare the differences in the quality of life of different groups or before and after comprehensive intervention by t test or rank sum test.To study the factors affecting the quality of life by rank correlation, single factor analysis or multiple regression analysis.Results There is no statistical difference in the field of general health between cerebral group and normal group(cerebral palsy group:69.467±16.232,normal group69.79±24.97,P>0.05), the rest of the field and total scores 0f SF-36 in normal group is better than that of cerebral palsy group(P <0.05).Correlation analysis showed that bodily pain,vitality,mental health and total scores were negatively correlated with the child’s age(correlation coefficient:-0.186,-0.246,-0.175,-0.176,P<0.05).Role physical was positively correlated with the primary caregivers’ s ag(correlation coefficient: 0.142,p<0.05).All domains except general health were positively correlated with the primary caregivers’ s educational level(p<0.05).Role physical was negatively correlated with the primary caregiverss economic level(correlation coefficient:-0.028,p<0.05).All domains except physical functioning, role physical and general health were positively correlated with the primary caregivers’ s economic level(p<0.05).Univariate analysis showed that the child’s age and rehabilitation institution, kinship,the primary caregiver’s sex, age, marital status, education and economic level all significantly predicted the primary caregivers’ s QOL. Multiple regression analysis: age of children, relatives, caregivers sex three factors went into the regression equation, the difference was statistically significant(P<0.05) Before comprehensive intervention, physical functioning,role physical,bodily pain and total scores of quality of life in mother group(62.72 ± 13.62, 89.33 ± 15.91, 61.67 ± 44.40, 75.17 ± 22.60) is better than the grandmother group(53.44±18.20, 70.00±25.15, 36.20±30.00, 56.50±23.20),the difference was statistically significant(P<0.05).After six months of comprehensive intervention, physical functioning,role physical,role emotional,social functioning,mental health,total scores of the primary caregiver and the activities of daily living of children( 85.92 ± 14.89,70.42 ± 38.92,63.89 ± 34.88,50.00 ± 14.56,67.7 ± 20.04,63.52 ±16.37,43.53 ± 22.29) were better than before(79.67 ± 23.03,45.83 ± 43.22,18.33 ±30.95,36.25 ± 18.08,61.25 ± 20.22,58.08 ± 16.61,40.98 ± 23.29),the difference was statistically significant(P<0.05).After six months of comprehensive intervention,mother group(9.33±18.00)improved more than grandmother group(3.17±17.50) in physical functioning(P<0.05).Conclusions(1)The QOL of primary caregivers of cerebal palsy were significantly lower than normal group.Age of cerebral palsy children and age,economic and education level of primary caregivers have different impacts in various areas of QOL..The child’s age and rehabilitation institution, kinship,the primary caregiver’s sex, age, marital status, education and economic level are eight influencing factors on the QOL of primary caregivers.The older of cerebral palsy children, the poorer QOL of(maternal) grandmother caregivers.In the clinical work,we need to pay more attention to the quality of life of cerebral palsy primary caregivers.(2)The grandmother primary caregivers of cerebral palsy have poor quality of life than the mother’s group,especially in physical health.Comprehensive intervention can improve the quality of life of primary caregivers and ADL level of children.And the mother group improve more in physical functioning than grandmother group. In clinical work, comprehensive intervention is worth popularizing. |
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