| Objective:The purpose of this study is to study the current situation of social participation level of patients with Parkinson’s disease,and deeply explore the influencing factors of social participation of patients with Parkinson’s disease through mixed methods,in order to provide reference and theoretical basis for medical and health care personnel to formulate relevant intervention strategies and improve the level of social participation of patients.Methods:1.Quantitative study on the level of social participation and influencing factors of patients with Parkinson’s disease249 patients with Parkinson’s disease were selected as the research objects by using the method of convenient sampling from May 2021 to October 2021.The general information questionnaire,the Chinese version of independent Participation Questionnaire(IPA)and Hospital Anxiety and depression self rating scale(HAD),social support scale(SSRs)and Stigma Scale(SSCI)were investigated.Through spss26.0 software for data analysis,the normal distribution data in the measurement data are statistically described by means of mean and standard deviation,and the skew data are described by median;The counting data are statistically described by frequency,composition ratio,etc;For normal distribution data,t-test was used for comparison between the two groups,one-way ANOVA was used for comparison between multiple groups,and Welch test was used for comparison between multiple groups with uneven variance to analyze the impact of general data content on social participation of patients with Parkinson’s disease;Spearman correlation analysis was used to study the correlation between the level of social participation of patients with Parkinson’s disease and the scales included in each study;Multiple linear stepwise regression analysis was used to study the total score of social participation and the main influencing factors of four dimensions in patients with Parkinson’s disease.2.Qualitative study on the influencing factors of social participation of patients with Parkinson’s diseaseThe interview outline was determined based on quantitative research results,literature review and expert group discussion.The purposive sampling method is adopted,according to the level of disease,the information such as age,culture level,according to the largest difference strategy selection since November 2021-January 2022 in Shanxi Province and participate in a two 3 armour hospital clinics excessive Parkinson’s patients as the research object,the study of semi-structured interview,each interview will be transcribed into recording content within 24 h after the end of words.The data were analyzed by traditional content analysis method,and the sample size was determined based on data saturation.A total of 20 pd patients were interviewed.Results:1.Quantitative research results of social participation level and influencing factors of patients with Parkinson’s disease(1)Score of each scale: the total score of social participation is(48.98±16.92),and the items of each dimension are divided into indoor autonomous participation(2.09±0.874),family role autonomous participation(2.09±0.877),social life relationship(1.58±0.620)and outdoor autonomous participation(2.05±0.748).The scores of each dimension of hospital anxiety and depression self rating scale were 8.00(5.00,9.00)for anxiety(7.82±3.539)and 8.00(5.00,11.00)for depression.The total score of social support was 39.00(35.00,43.00),and the total score of stigma scale was 57.00(52.00,64.00).(2)Univariate analysis: age,ability to go out alone and H & Y grade had statistical differences in the total score of social participation and all dimensions(P<0.05),fall fear and complications had statistical differences in the total score of social participation,indoor independent participation,family role independent participation and outdoor independent participation(P<0.05),and there were significant differences in the total score of social participation,indoor independent participation and family role independent participation(P<0.05).(3)The results of correlation analysis showed that depression was positively correlated with the total score of social participation and the scores of four dimensions(P<0.01).Anxiety was positively correlated with social life relationship and the total score of social participation(P<0.01),but not with indoor autonomous participation,family role autonomous participation and outdoor autonomous participation(P>0.05).Subjective support and support utilization were negatively correlated with the total score of social participation and the scores of four dimensions(P<0.01);Objective support was negatively correlated with the total scores of indoor independent participation,family role independent participation,outdoor independent participation and social participation(P<0.01),but not with social life independent participation(P>0.05).The internal stigma was positively correlated with the total score of social participation and the scores of four dimensions(P<0.01);There was no correlation between external stigma and social participation and the four dimensions(P>0.05).(4)Multiple stepwise regression analysis: The influencing factors of indoor independent participation were: H & Y grade,age,utilization of social support,depression and social subjective support(P<0.05).The influencing factors of family role autonomous participation were: H & Y grade,age,utilization of social support,depression and social subjective support(P<0.05).The influencing factors of social life relationship participation were depression,internal stigma and the utilization of social support(P<0.05).The influencing factors of outdoor independent participation were: H & Y grade,internal shame,age,utilization of social support and depression(P<0.05).The influencing factors of social autonomous participation were: H & Y grade,depression,age,utilization of social support and internal shame(P<0.05).2.Qualitative research results of influencing factors of social participation in patients with Parkinson’s diseaseThe promotion factors of social participation of patients with Parkinson’s disease include 3 themes and 9 sub themes: personal factors(optimism,sense of responsibility,positive participation experience and belief),family factors(family intimacy and family support),and social support(support from relatives and friends,patients and medical staff);There are 5 themes,15 sub themes,including disease factors(special symptoms,severity of illness,fatigue),negative psychological experience(guilt,stigma,fear of falling,mood depression),family factors(family disharmony,family overprotection,children’s orthodoxy),environmental factors(physical environment,interpersonal environment),Non resistable factors(age,COVID-19,weather factors)Conclusion:The level of social participation of patients with Parkinson’s disease is low.The four dimensions of social participation from low to high are independent participation in social life,outdoor independent participation,indoor independent participation and family role independent participation.The social participation level of patients is affected by social support,negative psychological experience,environmental factors,disease factors and other factors.Qualitative research explains and supplements the quantitative research results.Medical staff and family members should pay attention to patients’ social participation.Medical and health care personnel can formulate corresponding intervention measures to promote patients’ social participation,improve patients’ quality of life and improve patients’ life satisfaction. |
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