Correlation Between Parental Care Burden,Social Support And Quality Of Life In Children With Epilepsy

Objectives1 To understand the current situation of parental care burden,social support and quality of life of children with epilepsy;2 To Analyze the influencing factors of quality of life of children with epilepsy;3 To explore the correlation between parental care burden,social support and quality of life of children with epilepsy.MethodsThis study was a descriptive study and adopted the form of questionnaire survey.From January to December 2019,156 cases of parents of children with epilepsy who met the inclusion criteria and were hospitalized in the outpatient department of pediatrics of 3 grade a hospitals in changsha city and met the inclusion criteria were selected by the purposive sampling method to conduct a questionnaire survey.The questionnaire included self-designed general information questionnaire,caregivers burden inventory(CBI),social support rating scale(SSRS)and short form 36 questionnaire(SF-36).SPSS20.0 was used for data entry and statistical analysis.General data and questionnaire scores: the measurement data were described by mean ± standard deviation.Counting data were described by frequency and percentage.Factors influencing quality of life were analyzed by rank sum test and multiple linear regression analysis.The correlations between care burden,social support and quality of life were analyzed by spearman.The significance levels of statistical tests were all statistically significant with P <0.05.Results1 Epilepsy children parents care burden(CBI)average total score was(40.34±17.16),57.7% of children with epilepsy were found to be under heavy parental burden in this study.Among them the dimension scores from high to low were: time dependency burden(13.08±5.10),limited development burden(8.55±5.14),physiological burden(8.18±4.29),affective burden(5.35±4.56),social burden(5.18±3.57),the time dependence burden was the highest.2 The average total score of parents' SSRS was(40.49±7.49),71.8%of the children had medium level of parental social support.The score of subjective support was(23.39±4.86).The objective support score was(10.01±2.98).The score of support utilization was(7.09±1.84).The score of subjective support was the highest and the score of support utilization was the lowest.Compared with the domestic norm,the results showed that the objective support,the utilization of support and the total score of SSRS were all lower than the domestic norm,and the difference was statistically significant(P <0.05).3 The average score of SF-36 of the parents of epileptic children was(581.67±148.74).The physical functioning score was(87.79±15.48).The role-physical score was(62.18±41.59).The bodily pain score was(73.67±23.21).The score of general health was(57.29±18.07).The vitality score was(62.78±18.29).The score of social functioning was(75.73±20.73).The score of role-emotional was(59.40±43.39).The mental health score was(59.26±15.59).The results showed that the scores of role-physical,bodily pain,general health,vitality,social functioning,role-emotional and mental health were lower than those of domestic norm(P <0.05).The results of multiple linear regression analysis showed that the burden of developmental restriction,parents' gender,the physiologicalburden and the objective support were the main factors affecting the quality of life,which could be combined to explain 40.2% of the variation.4 The total score of parental CBI of epileptic children was negatively correlated with the total score of SF-36(r=0.503,P <0.05),that was,the heavier the care burden,the worse the quality of life.The lighter the burden of care,the better the quality of life.CBI of physiological burden,social burden,emotional burden,limited development burden and SF-36 of eight dimensions(physical functioning,role-physical,bodily pain,general health,vitality,social functioning,role-emotional,mental health)and SF-36 total scores were negatively correlated,the difference was statistically significant(P <0.05).Time dependency burden was negatively correlated with vitality,social functioning,role-emotional,mental health and total scores of SF-36(P <0.05).5 There was a positive correlation between SSRS and SF-36(r=0.331,P <0.05),that was,the higher the level of social support,the better the quality of life.The lower the level of social support,the worse the quality of life.The total score of SSRS was positively correlated with the 8dimensions of SF-36(P <0.05).Subjective support was positively correlated with the total score of SF-36 and all dimensions(except vitality).Objective support was positively correlated with the total score of SF-36 and all dimensions(except physical functioning and mental health).The degree of support utilization was positively correlated with role-physical,social functioning and role-emotional,there were statistical differences(P <0.05).6 The total score of parental SSRS of children with epilepsy was negatively related to the total score of CBI(r=-0.273,P <0.05),that was,the higher the level of social support,the lighter the care burden,and the lower the level of social support,the heavier the care burden.There was a negative correlation between subjective support and social burden,affective burden,limited development burden and the total score of CBI,with r values of-0.303,-0.228,-0.250 and-0.228,respectively.There was a negative correlation between objective support and emotional burden,limited development burden and the total score of CBI,with r values of-0.315,-0.205 and-0.171,respectively.There was a negative correlation between the total score of SSRS and social burden,affective burden,limited development burden.The r values were-0.310,-0.315 and-0.301,respectively,there were statistical differences(P <0.05).Conclusions1 57.7% of the parental care burden of children with epilepsy was at the level of severe burden,time dependency burden was the heaviest burden.2 71.8% of children with epilepsy had medium levels of parental social support.3 The quality of life of parents of children with epilepsy was at a low level.The main factors affecting the quality of life were limited development burden,gender of parents,physiological burden and objective support.4 The burden of parental care for children with epilepsy was negatively correlated with their quality of life.Social support of parents of children with epilepsy was positively correlated with quality of life.Parental social support was negatively correlated with the burden of care in children with epilepsy.