Research On The Status And Influencing Factors Of Caregiver Burden Among Family Caregivers Of Children With Intellectual Disability

ObjectiveTo understand the authentic caregiving experience and the current situation of caregiver burden among family caregivers of children with mental disabilities;To analyze the influencing factors of caregiver burden,and make recommendations to improve the caregiver burden.MethodThis mixed study was based on the Demand-Control-Support(DCS)model.The first part used the interview method and the second part used the questionnaire method.(1)Interview method:A purposive sampling method and maximum difference sampling strategy were used to select 19 caregivers who participated in parental support activities in October 2021 in city of L.A semi-structured in-depth interview method was used to obtain data,and Colaizzi phenomenological analysis was used to analyze the data.(2)Questionnaire method:Using the cross-sectional approach in descriptive research,family caregivers of children with intellectual disability who are rehabilitated in special children’s educational institutions in the northwest region from December 2021 to December 2022 were selected as the target population for the study according to uniform inclusion and exclusion criteria.The study instruments included the sociodemographic characteristics questionnaires of children with intellectual disability and their family caregivers,Zarit Burden Interview(ZBI),Functional Independence Measure(FIM),Basic Activities of Daily Living(BADL),Instrumental Activities of Daily Living(IADL)and the Perceived Social Support Scale(PSSS).The data were organized and statistically analyzed by applying Epidata3.1,SPSS 26.0 and Process plug-in.The statistical methods used include descriptive statistical analysis,univariate analysis,multi-factor binary logistic regression analysis,and test of moderating effect.ResultsPartⅠqualitative results:Thematic analysis of interview data from 19respondents yielded 4 themes and 10 sub-themes related to the caregiving experience.Theme 1 was parenting difficulties,including 2 sub-themes of lack of illness-related knowledge and lack of special care experiences;Theme 2 was the heavy burden of care,including three sub-themes of high psychological stress,high physical load and limited social interaction;Theme 3 was the low level of access to support,including 2 sub-themes of lack of family support and inadequate social security;and Theme 4 was the perceived benefits of the caregiving experience,including 3 sub-themes of positive mindset change,positive personal growth and increased capacity to care.Part II quantitative results:164 questionnaires were returned,5 invalid questionnaires were excluded,the valid questionnaire return rate was 96.95%.(1)The caregiver burden score among family caregivers of children with intellectual disability in this study ranged from 5.00 to 88.00,with a median score of 42.00 and an interquartile range of 25.00,and the prevalence of high caregiver burden was53.46%.(2)The results of the univariate analysis showed that the children’s age(χ~2=6.745,P=0.011),presence of abnormal behavior(χ~2=9.100,P=0.003),disability classification(χ~2=13.159,P=0.008)and family caregivers’work status(χ~2=4.112,P=0.043),self-rated health status(χ~2=8.298,P=0.016),demand(Z=-8.329,P<0.001),control(t=9.889,P<0.001)and social support(Z=-3.654,P<0.001)were associated with caregiver burden,with statistically significant differences(P<0.05).(3)Multi-factor binary logistic regression analysis showed that demand,control,and social support all influenced caregiver burden after adjusting for children’s age,presence of abnormal behavior,disability classification,family caregivers’work status,and self-rated health status.Demand was an independent risk factor for the occurrence of high caregiver burden[OR=1.247,95%CI(1.123,1.383),P<0.001].Control was protective factor for the occurrence of high caregiver burden[OR=0.083,95%CI(0.028,0.247),P<0.001].Social support was a protective factor for the occurrence of high caregiver burden[OR=0.928,95%CI(0.869,0.991),P<0.001].(4)Control played a significant negative moderating role(B=-0.164,P=0.036),with the positive effect of demand on caregiver burden increasing as control decreased and caregiver burden increased.Family caregivers with high control are less likely to experience high caregiver burden within a range of demand.(5)Social support played a significant negative moderating role(B=-0.006,P=0.043),with the positive effect of demand on caregiver burden increasing as social support decreased and caregiver burden increased.Family caregivers with high social support are less likely to experience high caregiver burden within a range of demand.(6)The DCS model was applied to predict the impact of caregiving on caregiver burden among family caregivers of children with intellectual disability.ConclusionInfluencing factors of caregiver burden among family caregivers of children with intellectual disability include the children’s age,presence of abnormal behavior,disability classification,caregivers’work status,self-rated health status,level of demand,control and social support.It is recommended to pay attention to the positive and negative caregiving experiences among family caregivers of children with intellectual disability,pay attention to the current situation of caregiver burden,fully stimulate the potential positive power of family caregivers,use the DCS model to explain the impact of caregiving on their caregiver burden,continuously improve their control over excessive caregiving tasks,and improve the level of social support in multiple ways,so as to better improve the caregiver burden.