Study On The Caregiving Burden And Its Factors Among Major Caregivers Of Children With β-thalassemia In Hainan Province

Objective:To investigate the caregiving burden level among major caregivers of children with β-thalassemia in Hainan province;analyze the related factors affecting the caregiving burden of major caregivers to provide reference for the development of interventions to reduce the caregiving burden and improve the quality of life of major caregivers in children with β-thalassemia.Methods:A cross-sectional study design was adopted.The caregivers who joined the We Chat group for parents of children with Thalassemia in of Hainan province were recruited.A series of scales,including the Zarit Caregiver Burden Interview scale(ZBI),Caregiving Rewarding Feelings Scale(CRF),Patient Health Questionnaire 9(PHQ-9),Generalized Anxiety Disorder 7(GAD-7),Social Support Rating Scale(SSRS),were used to assess caregiving burden and related psychological status for the participants.The online survey was conducted among the caregivers of children with severe beta thalassemia who met the eligibility criteria and were willing to participate in the study.Descriptive statistical analysis,Pearson correlation analysis and multiple stepwise regression were used for data processing.Result:1.A total of 182 major caregivers of children with β-thalassemia completed the questionnaire,of whom 156(85.71%)were the mothers of children.The age of the main caregivers is mainly 30-39 years old(126people account for 69.23%);68.13% of the caregivers have an education level of junior high school and below;45.05% of the part-time workers and39.56% do not work;56.59% of the family monthly income is between1001 and 3000 yuan,and another 40.66% of the family monthly income is between 3001 and 5000 yuan.72(39.56%)carers cared for children for 4to 8 hours a day,64(35.16%)caregivers cared children for 8 to 12 hours a day;62 unassisted caregivers(34.07%).2.The overall score of the caregiving burden among the major caregivers of children with severe β-thalassemia in Hainan Province was(38.16±14.54),showing an overall light burden level;among the 182 major caregivers of severe β-thalassemia children,19 cases(10.44%)reported basically no care burden(0 to 20 points);84 cases(46.15%)reported mild care burden(21 to 40 points);66 cases(36.26%)reported moderate care burden(41 to 60 points);13 cases(7.15%)reported severe care burden(61to 88 points).3.Among 182 children with severe β-thalassemia,38 cases(20.88%)reported low positive feelings(0-6 points)and 144 cases(79.12%)reported high positive feelings(7-12 points).4.Single factor analysis of variance showed that the caregiving burden score is affected by children age,whether children with one-child,sex and relationship between caregiver and child caregivers to take care of the baby,take care of time every day,every day to take care of the length and common number on the number of family members and the need to raise a child,age is smaller,caregiver burden score is higher;The score of caring burden of the parents of children with non-only child is significantly higher than that of the only child.The score of caring burden of female caregivers was significantly higher than that of male caregivers.The longer the primary caregiver takes care of each day,the more children they need to support,and the higher the caregiver’s burden score is.The fewer family members who share the care of children,the higher the caregiver burden score;These differences were statistically significant(P < 0.05).5.The results of multiple stepstep regression analysis showed that age(b’=-0.15,P < 0.05),personal growth score(b’ =-0.21,P < 0.01)and subjective support score(b’=-0.34,P < 0.01)were negatively correlated with caregiver burden score.Duration of caregivers’ daily care(b’=0.26,P < 0.01),number of children to be supported(b’ =0.21,P < 0.01)and current working status of caregivers(non-working group,full-time job:b’=0.36,P < 0.01;Part-time job: b’=0.29,P < 0.01)These three factors were positively correlated with caregivers’ care burden scores.Conclusion:1.In Hainan province,the major caregivers of children with severe beta thalassemia generally had a certain burden of care,and 43.4% of the major caregivers had a moderate or above level of care burden;7.2% of the major caregivers had severe care level.2.The level of caregiving burden among the major caregiver of children with β-thalassemia was mainly affected by the age of the child,the daily care duration of the caregivers,the current working status of the caregivers,the number of children needed to support,personal growth score and subjective support score.The younger children,the higher the level of care burden of caregivers;Longer hours of daily care,more children to support,and higher levels of care burden among full-time and part-time caregivers;The primary caregivers with lower scores of personal growth dimension and subjective support dimension in positive feelings of caring had higher levels of caring burden.