عنوان

تدوین برنامه مشاوره توانبخشی مبتنی بر تجارب زیسته والدین کودکان مبتلا به اختلال طیف اوتیسم و اثربخشی آن بر کیفیت زندگی این والدین

Introduction: Autism spectrum disorder (ASD) is a developmental disorder that includes abnormal communication, repetitive and restrictive interests, and impaired social functioning. The conditions and needs of children with autism spectrum disorder affect the child and the family members who play a decisive role in the care and upbringing of the child. The purpose of this study was to develop a rehabilitation counseling program based on the lived experiences of parents of children with autism spectrum disorder and its effectiveness on their quality of life.Method: The present study was conducted in quantitative and qualitative phase; content analysis method was used the qualitative phase of this study. The participants were 18 parents of children with autism spectrum disorder in Tehran who were included in the study through purposive sampling. A semi-structured and in-depth interview method was used to collect data. The interviews were audio-recorded and transcript word-by-word in Word software. Qualitative analysis was done using content analysis approach. In the quantitative phase of this study, a randomized clinical trial was conducted in 2022. The statistical population was the parents of children with autism who referred to the Iranian Autism Association in Tehran. 60 parents were selected by accessible sampling method and were randomly assigned into experimental and control groups. In the experimental group, rehabilitation counseling based on the lived experiences of parents of children with autism spectrum disorder was conducted in 8 sessions, each session lasting 90 minutes, 2 sessions per week. No intervention was done for the control group. In order to collect data, parents' demographic profile questionnaires and World Health Organization's quality of life questionnaire were used. Data were analyzed with SPSS21 statistical software and tests, such as Fisher, chi-square, independent t and paired t.Results: The analysis of the interviews knowing the experiences of parents in caring for children with autism spectrum disorder clarified two categories of positive and negative experiences. In positive experiences, there were two themes: "acquiring education and spirituality" and "increasing life skills", and in negative experiences, there were five themes: "decrease in communication and lack of social support", "inappropriate treatment with a child with ASD", "feeling of shame", "Lack of compromise" and "being judged by others" were identified. Also, the interview to identify the problems and needs of parents revealed that parents had three main needs in taking care of their children: first, problems and problems related to diagnosis and rehabilitation treatment including three categories (problems and problems of diagnosis and treatment, problems and problems in the field of rehabilitation and treatment system and inappropriate support), secondly, issues and problems related to parents including four categories (lack of knowledge and awareness of parents about autism, lack of life skills, daily parenting problems and family problems and marital issues) and thirdly, financial, cultural and social issues in two Class (financial problems, cultural and social problems) was identified. The results of the intervention showed that there was no significant difference between the experimental and control groups in terms of demographic characteristics (P>0.05). The quality of life of parents before the intervention in the experimental and control groups was 40.41±12.14 and 42.91±7.82, respectively, which had no statistically significant difference (P=0.35); While after the intervention, it reached 52.08±12.74 and 43.75±8.52, respectively (P=0.003). In the experimental group, the quality of life of the parents improved significantly in the post-test phase (P=0.001), but no significant change was seen in the control group (P=0.15).Conclusion: The findings of the present study provide a deep understanding of the experiences of parents caring for children with autism spectrum disorder in Iran. The needs and problems mentioned by the parents of children with autism spectrum disorder highlight the need to provide medical, educational and counseling services as well as emotional and material support from the society and the government. Planning and implementing support plans enables parents to face problems strategically and ultimately improve their quality of life. Considering the effectiveness of rehabilitation counseling based on the lived experiences of parents of children with autism spectrum disorder on the quality of life of these parents, it is suggested to use this method to improve the quality of life of these parents. Finally, the results of this research can provide valuable information to researchers, psychologists and psychiatrists to address the unique needs of families who care for and support children with autism spectrum disorder.Keywords: autism spectrum disorder, parents, caregiver, needs assessment, needs, problems, qualitative research, quality of life, parents, rehabilitation counseling, lived experiences