Care Giver Burden Of Primary Caregivers In Children With Acute Lymphoblastic Leukemia And Its Influencing Factors Analysis

Objective:(1)To understand the current situation and changes of care giver burden of primary caregivers of children with acute lymphoblastic leukemia(ALL)during different treatment stages.(2)To explore the influencing factors of Care giver burden of primary caregivers of children with ALL.(3)To explore the care experience of the main caregivers of children with ALL.(4)To provide basis for paramedics who provide nursing intervention and management to the primary caregivers of children with leukemia in different treatment stages.Methods:This study consists of two parts: the longitudinal investigation in quantitative research and the phenomenological method in qualitative research.In the quantitative research part,the convenient sampling method is adopted.Selection of primary caregivers of children with ALL who meet the criteria,from March 2017 to January 2019,in Department of Pediatric Hematology,First Hospital of Jilin University,Changchun.To understand the basic situation of ALL children and their primary caregivers through general information questionnaire,the Caregivers Burden Inventory(CBI)was used to assess the caregiver load of the primary caregivers.The primary caregivers were investigated by questionnaires when their children are in the stage of induction-remission therapy,consolidation therapy and maintenance therapy.The data were analyzed by IBM SPSS 24.0.In the qualitative research part,the phenomenological method in qualitative research is adopted.In-depth interviews were conducted among 18 primary caregivers of children with ALL in the stage of induction-remission therapy,consolidation therapy and maintenance therapy.Phenomenological analysis was used to analyze data and summarize themes.Results:Quantitative research part:(1)The total CBI scores of the primary caregivers at three time points were respectively are 55.44±13.0,60.04±13.13,52.20±12.21,The difference was statistically significant.The total burden of caregivers was the heaviest in consolidation treatment,middle level in induction and remission,and the lightest in maintenance treatment stage.(2)Age,only child or not,caregiver's job,caregiver's income,and caregiver's marital status are the influencing factors of the care burden of the primary caregivers of ALL children.?Qualitative research part:The giver care burden of primary caregivers in induction-remission period of children with ALL can be summarized into five aspects:(1)complex inner feelings;(2)lack of knowledge and information;(3)heavy psychological load;(4)heavy physical load;(5)a variety of support methods.The care giver burden of primary caregivers in consolidation therapy period of children with ALL can be summarized into five aspects:(1)material support is seriously inadequate;(2)the source of psychological load has changed;(3)the physical load increases;(4)lack of knowledge;(5)the support system is not perfect.The care giver burden of primary caregivers of children with ALL during maintenance therapy can be summarized into four aspects:(1)the change of caregiver' mentality;(2)uncertainty about the future;(3)shortage of persistent medical services;(4)social interaction still needs to be improved.Conclusions:(1)The care giver burden of the primary caregivers of children with ALL changes with the progress of treatment.Moderately load level in the induction-remission period.Moderately heavy load level in the consolidation period and lightest in maintenance therapy period,but there was still moderate care load.(2)In induction-remission period,the burden of caregivers mainly comes from the disease itself,while in consolidation treatment period,the economic pressure of caregivers is the heaviest,while in maintenance treatment period,caregivers are most concerned about the future life of the children.(3)Medical staff should give targeted intervention according to the psychological changes of the main caregivers of ALL children in different periods,so as to reduce the burden of caregivers,in case that caregivers can provide high-quality continuing care for children with ALL,thereby improving the quality of life of them.