Study On The Quality Of Life And Its Influencing Factors Of Parents Of Children With Intellectual Disabilities

ObjectiveBased on family systems theory,social support network theory and Rawls justice theory,the quality of life of parents of children with intellectual disabilities in Shapingba District of Chongqing City was investigated to study the quality of life and influencing factors of parents of children with intellectual disabilities,and the countermeasures and suggestions to improve the quality of life of parents of children with intellectual disabilities were also discussed.Methods1.Literature research: Through literature review,systematic thoughts were formed,and related concepts and theories of parents' quality of life were defined and sorted.2.Expert Consultation: On the basis of literature research,throughexpert consultation and repeated argumentation,the investigation tools were determined,and the interview outline was prepared.3.Questionnaire survey: Based on literature research and expert consultation,“the Generic Quality of Life Inventory-74”,“Social Support Rating Scale”,“Hospital Anxiety and Depression Scale” and “Coping Style Questionnaire” were used as measuring tools to investigate the quality of life,social support status,anxiety and depression status and coping styles of parents of children with intellectual disabilities in Shapingba District of Chongqing City,and the quality of life of parents of normal children in the same area was investigated as a comparison of that of parents of children with intellectual disabilities.4.In-depth interviews: On the basis of literature research and expert consultation,through the self-designed interview outline,in-depth interviews with parents of children with intellectual disabilities were conducted so as to supplement the content not covered in the questionnaire survey,and to explore the potential problems.5.Statistical analysis: Excel 2007 software was used to establish the database,and the surveyed data was statistically analyzed with SPSS 23.0software.The main statistical methods included t test,one-way ANOVA,pearson correlation analysis,multiple linear regression analysis,test level?=0.05.Result1.Status of quality of life and its dimensions of parents of children with intellectual disabilities: The score of quality of life of parents of children with intellectual disabilities is(55.11±10.97),the score ranges from 28.37 to 92.42,and about 70% of parents score in the range of 45-65;the average scores in descending order of four dimensions are physical function dimension,social function dimension,psychological function dimension and material life dimension,scored respectively 57.51,56.81,54.45 and 51.65,which all much lower than that of the normal children's parents,and the differences are statistically significant.2.Differences of parents' quality of Life and its dimensions on the basis of demographic variables: There is significant difference in the quality of life of parents with different family income,and the quality of life of those whose annual family income greater than 80,000 is higher than that of less than 80,000.There is a significant difference in the scores of the material life dimensions of parents with different family income and home address,the material life of the parents whose annual family income greater than 80,000 is better than that of less than 80,000,the material life of parents whose annual family income between 30,000 and 80,000 is better than that of less than 30,000,and the material living standard of the parents living in the city is better than parents living in the towns and rural areas.There are statistical differences in the scores of social function on the basis of father's employment status,and parents of children whose fathers are working as "individual or free occupation" has a better social function than parents of children whose fathers work in "enterprises,institutions or agencies",and parents of those whose fathers are "farming" or "unemployed".There are statistical significance in scores of material life dimension and psychological function dimension on the basis of father's education level,parents of children whose fathers have a master degree and above are better in material living condition than that of senior high school and technical secondary school,junior high school and primary and below,but the parents of those whose fathers' education level are primary school and below have better psychological function than those used in college,high school or technical secondary school,and junior high school.3.States of social support,anxiety,depression and coping styles of parents: The scores of social support is(35.59 ±7.35),and the dimensions of objective support,subjective support and utilization of social support are respectively(7.61 ±3.27),(21.38 ±4.43)and(6.61 ±1.74).Parents with suspected symptoms and suspicious symptoms of anxiety accounted for26% and 26% respectively,and those with suspected symptoms and suspicious symptoms of depression accounted for 17% and 37%respectively.Parents' main coping style is mature coping style which isdominant by problem-solving and help-seeking,while the scores of retreat and fantasy of non-mature coping styles are as well very high.4.Related factors and influencing factors of parents' quality of Life:Pearson correlation analysis find that annual family income,social support,problem solving and help-seeking have a positive predictive effect on the quality of life of parents,while anxiety,depression,self-blame,fantasy and retreat are the negative predictors of parents' quality of life.Multiple linear regression analysis shows that depression,objective support and self-blame are the influential factors of the quality of life of parents,among which depression and self-blame are the negative influencing factors of parents' quality of life,and objective support is the positive factor of parents' quality of life.5.Concerns and expectations of parents: The rehabilitation of children takes up almost all the time and energy of one parent(usually mother),depriving them of much of their leisure and social life,and forcing caregivers to give up their work,resulting in lower total family income,while on the other hand,the expenditure on rehabilitation of children is huge,accounting for half or even 80% of the family income,causing parents facing heavy economic pressure.The psychological state of parents will go through three stages: the first stage is the initial stage of finding children' abnormality,and the psychological characteristics are denial,escape,self-anesthesia;The second stage is the initial stage of diagnosis for the child,the psychological characteristics are grief and anxiety,in this stage it is easy to appear the behavior of "grasping for salvation";and The main psychological characteristics of the third stage are acceptance and coping.In terms of related support,parents can obtain a certain degree of financial support from the implementation of the relevant policies,and some parents can obtain a small amount of financial support from relatives and friends,however,the financial support they receive is still difficult to solve their economic difficulties,in addition,it is difficult for parents to get help in the care for the child.ConclusionRehabilitation training and life care for children with intellectual disabilities cause enormous economic and mental stress on parents' lives,affecting the normal work of parents and rest and socialization,so that the quality of life of parents is not high,far lower than the quality of life of normal children's parents.Parents' social support is not high,and objective support is especially lacking,although they can get partial support in the economy,they still have difficulty in coping with economic difficulties,and they cannot get support in their children's life care,which also forces one of the parents to give up their job to take a full-time care for the child.Parents of children with intellectual disabilities are deeply worried about children'future life,and additionally,they bear heavy economic and mental stress,as a result,there is a general negative emotion among parents of children with intellectual disabilities,about half of the parents have or may have anxiety and depression,which is negative for the quality of life of parents.Rooting in concerns about the child's future life,parents expect to improve their children's self-care ability through professional training.In addition,in coping styles,parents' chiefly style is mature coping styles as solveing problems and seeking help,but there are also non-mature coping styles as retreats,fantasies and self-blame.The expectations of parents include improving the professionalism of rehabilitation practitioners,increasing social support and acceptance to children with intellectual disabilities,and increasing support for self-employment.Suggestions1.Suggestions provided to relevant government departments: Attach importance to the quality of life of parents,establishing a social fund for children with intellectual disabilities;improve the support of parents of children with intellectual disabilities;strengthen psychological counseling for parents of children with intellectual disabilities through professional institutions and communities;strengthen the employment assistance to parents of children with intellectual disabilities;promote the survival and life of children with intellectual disabilities after adulthood;Strengthenknowledge propaganda and policy propaganda to improve social awareness and policy implementation.2.Suggestions for parents: Strengthen attention on relevant support and improve the utilization of social support;dare to try and innovate,enhancing the initiative of employment;strengthen self-study,face children's special situation and rehabilitation training with positive attitude.