| Objectives:To understand the current situation of care burden of caregivers of children with tethered cord syndrome;To analyze the influencing factors of care burden of caregivers of children with tethered cord syndrome;To explore the real experience of caregivers of children with tethered cord syndrome.Methods:This study includes two parts:quantitative research and qualitative research.Quantitative research:A total of 305 caregivers of children with tethered cord syndrome(TCS)who were operated in neurosurgery department of a third-grade children’s Hospital from January 2020 to December 2020 were recuited for questionnaire survey by convenience sampling method.A general information questionnaire was used to collect the general information of children and caregivers;Zarit Caregiver Burden Scale(ZBI),simple coping style questionnaire(SCSQ)and social support scale(SSRS)were used to investigate the caregivers’ care burden level and its related influencing factors.Epidate 3.1 software was used to establish the database,SPSS 20.0 software was used to analyze the data.Mean,standard deviation,constituent ratio and frequency were used to describe the general information,caregiver burden,coping style and social support of TCS children and caregivers.T-test,one-way ANOVA,Pearson correlation and multiple stepwise regression analysis were used to analyze the influencing factors of the burden of caregivers.Take bilateral test,P≤0.05 that the difference was statistically significant.Qualitative research:Based on the principle of information saturation and the purpose sampling method,30 caregivers from January 2020 to December 2020 were selected for semi-structured interview.The duration of each case interview was about 30～60min.,The duration of every interview was about 30～60 minutes,and the entire interview was recorded simultaneously.The whole interview was recorded synchronously.Within 24 hours after the end of the interview,the recorded materials were converted into words in order to better refine the theme.With the help of Nvivo 12.0 statistical software,Colaizzi’s phenomenological 7-step analysis method was used to analyze the data,so as to explore the real experience of the caregivers of TCS children.Results:1.Quantitative research results(1)In this study,320 questionnaires were distributed,315 questionnaires were returned,10 invalid questionnaires were eliminated,305 valid questionnaires were obtained,and the effective recovery rate was 95.3%.(2)The total score of care burden of caregivers of TCS children was(26.05±15.36),which was in the moderate level,with the maximum score of 78 and the minimum score of 0.The score of caregivers’ personal burden was(15.69±8.41),and the score of responsibility burden was(6.15±5.22).Among the caregivers,39.67%had mild burden,43.28%had moderate burden and 17.05%had severe burden.(3)The total score of social support of caregivers of TCS children was(38.16±6.12),which was in the middle level.The score of objective support dimension was(7.69±0.79),the score of subjective support dimension was(23.61±4.97),and the score of support utilization dimension was(6.87±1.85).Among the caregivers,0.66%of the caregivers were at a low level of social support,84.59%were at a moderate level,and only 14.75%were at a high level.(4)The scores of positive coping and negative coping were(22.27±4.10)and(7.51 ±4.17)respectively.(5)Univariate analysis showed that there were significant differences in age,preoperative deformity/dysfunction,occupation,monthly family income,family residence,caring for others,and cognition of disease between the two groups(P<0.05).(6)Pearson correlation analysis showed that negative coping was positively correlated with the total score of caregivers’ care burden(r=0.339,P<0.001);positive coping was negatively correlated with the total score of caregivers’ care burden(r=-0.302,P<0.001);social support,objective support,subjective support and support utilization were negatively correlated with the total score of caregivers’ care burden(r values were-0.329,-.0183,0.300,-0.206,P<0.001).(7)Multivariate regression analysis showed that negative coping,positive coping,social support,caring for others,deformity/dysfunction and occupation of caregivers of children with tethered cord syndrome entered the regression equation,which could explain 34.60%of the variation of caregiver burden of children with tethered cord syndrome.2.Qualitative research resultsThe real experience of caregivers of children with TCS mainly includes:(1)Excessive psychological pressure(shock and rejection,self-blame and guilt,uncertainty about the future)(2)Heavy burden of care(heavy financial burden,work and social activities affected)(3)Lack of care knowledge and skills(lack of disease-related knowledge and care skills)(4)Weak support system(limited medical conditions,lack of family and social support)(5)Positive feelings(understanding the meaning of life,cherishing the present,improving learning ability,changing health-related cognitive behaviors,and perceiving the support of peers and medical staff).Conclusion:1.The caregiver burden of children with TCS is at a moderate level。Therefore,in clinical nursing,nurses should pay attention to the caregiver’s care burden and provide targeted nursing interventions to reduce their caregiving burden and promote the physical and mental health of the caregiver.2.Negative coping,positive coping,total score of social support,care for others,occupation of caregiver of children with TCS,and deformity/dysfunction of children with TCS are the main factors that affect the burden of caregivers.In clinical nursing,focus on caregivers who have deformities/dysfunctions,do not work and need to take care of others,strengthen nursing interventions for such people,encourage and guide them to actively respond,obtain multi-party support,and reduce their care burden3.The burden of caregivers of children with TCS comes from many aspects,including physical and mental pressure,economic burden,knowledge demand,social support,etc.in the process of caring for children,although the negative experience is obvious,the caregivers also have positive feelings,such as understanding the meaning of life,cherishing the present,improving learning ability,and changing health-related cognitive behavior Perceived support from peers and medical staff.Qualitative research is carried out on the basis of quantitative research to describe more fully and completely the caring experience of children with tethered cord syndrome. |
PDF Full Text Request