Rano Zakirova Engstrand Senior Lecturer

Contact

Name and title: Rano Zakirova EngstrandSenior Lecturer

Workplace: Department of Special Education Länk till annan webbplats.

Visiting address Room F1257Albanovägen 28

Postal address Specialpedagogiska institutionen106 91 Stockholm





  • Experiences of Siblings of Children with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)

    Article
    2025. Noam Ringer, Rano Zakirova-Engstrand.

    Pediatric acute-onset neuropsychiatric syndrome (PANS) is a relatively new diagnosis, characterized by an abrupt anddramatic onset of obsessive-compulsive disorder together with neuropsychiatric symptoms. This sudden onset ofsymptoms that occurs within 24–48 h presents tremendous challenges for the affected children and their immediate familymembers. Currently, research on the experiences of siblings of children with PANS is lacking. This study exploredsiblings’ perspectives on living with brothers and sisters with PANS, and their perceptions of own ability and availableresources to manage challenging situations. Nine siblings of children with PANS, aged 10–17 years, participated in semistructured interviews. Informed by Transactional Theory, a combined deductive-inductive approach to qualitative contentanalysis was used for analyzing the data. The findings illuminate that PANS has considerable impact on the lives ofhealthy siblings who experienced fear of aggression and unpredictability of their siblings’ behavior; they felt that theirbasic needs as well as social and emotional needs were often neglected. The results also showed that siblings lackedformal knowledge about PANS and had only a limited number of strategies to cope with stressful situations. However,peers in similar situation were a source of emotional support. Practical implications include the need for development ofcommunity-based, family-centered support programs to reduce the impact of PANS on healthy siblings’ well-being.Directions for further research are outlined.

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  • The use of the Cultural-Historical theory in research on education of students with intellectual disabilities

    Conference
    2025. Rano Zakirova-Engstrand, Diana Berthén.

    Background: Vygotsky’s groundbreaking research in the field of defectology (called special education and special psychology in today’s Russia) conducted 100 years ago is of high relevance for contemporary special educational research and practice. Vygotsky argued that children who experienced difficulties due to disability develop differently compared to their typically developing peers, and, therefore, he questioned the use of reduced curricula and slower learning pace implemented in special schools for these learners at that time (Vygotsky, 1929). However, Vygotsky’s cultural-historical theory and his work in defectology have not attracted as much interest among researchers in the field of special education in Western countries as it has in other countries (Stetsenko & Selau, 2018). Yet, recent research indicates that Vygotsky’s ideas have proven to be a useful framework to understand what educational practices can be created to promote deaf students’ optimal academic achievement and well-being (Willicheva & Hall, 2023). Less is known about how the cultural-historical theory has been used in research and educational practice for students with intellectual disabilities (ID). Therefore, there is a need to understand whether and how the cultural-historical theory has been used to advance the field of special educational research and educational practice to meet the needs of students with ID nationally and internationally. Research Questions: 1. What type of research problems did researchers study using the cultural-historical theory regarding special education and students with ID? 2. What methodological approaches did researchers use in special and inclusive educationalresearch regarding students with ID based on the cultural-historical theory? 3. What is the trajectory and geographic representation of the identified research? 4. What publication outlets did the researchers publish their study results? Method: We conducted a systematic literature review aimed at identifying and synthesizing available peer reviewed, cultural-historical research studies conducted with children and youth (aged 0-20) with intellectual disabilities in educational settings. Studies published either in English, Russian or Swedish were included. Four electronic databases of Education Resources Information Center (ERIC), PsycINFO, PubMed, and Scopus were used for systematic search of literature. In addition, we handsearched several academic journals, for example, Cultural-Historical Psychology, Journal of Applied Research in Intellectual Disabilities, Life Span & Disability, Mind, Culture, and Activity, and Learning, Culture and Social Interaction. The search for peer-reviewed literature was conducted between June 2024 and January 2025. The initial search in the databases resulted in 1307 records; the hand-search in academic journals resulted in few records. Using the inclusion criteria, the full-text of 39 studies were jointly assessed for eligibility. Of these 39 articles, 37 were in English and two in Russian. Results: Our preliminary results demonstrate that the main topics were inclusion and participation, scaffolding and mediating tools, and compensatory aspects of education. The majority of the included studies employed qualitative research design using case study methodology, interviews, participant observations of classrooms, and formative interventions. Most case studies were conducted with few students and their teachers and special teachers. Some studies also included parents. The trajectory of the published research over time revealed that during the period between 1990s and 2024. Geographically, the identified research articles represented only a few countries. References: Lubovsky, D. V. (2024). The development of the principles of cultural-historical theory in special education and psychology. Cultural-Historical Psychology, 20(3), 126-135.http://doi.org/10.17759/chp.2024200313 Vygotsky, L. (1929). Sobranie sochineni. Tom 2. Osnovy defektologii. (Engl. transl., Fundamental problems of defectology. In The collected works, vol. 2.). Stetsenko, A. & Bento, S. (2018). Vygotsky’s approach to disability in the context of contemporary debates and challenges: Charting the next steps (Presentation for the “Special Issue – Vygotsky’s Defectology”. Educação (Porto Alegre), 41(3), 325-333. Willicheva, K. & Hall, W. C. (2023). From vicious circles to virtuous cycles: Vygotskian-inspired conclusions for biomedicine and deaf education. American Annals of the Deaf, 168(1), 162–176.

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  • Family quality of life and family-school collaboration during the COVID-19 pandemic

    Article
    2024. Rano Zakirova-Engstrand, Jenny Wilder.

    Introduction: Compared to other countries, Sweden did not introduce sudden lockdowns and school closures during the COVID-19 pandemic. Instead, the country chose a less restrictive approach to managingthe pandemic, such as staying at home with any symptoms of cold orCOVID-19, washing hands, and maintaining social distancing. Preschools and compulsory schools remained open. In this context, limited evidenceexists about how Swedish families of students with special educationalneeds and disabilities (SEND) experienced collaboration with school professionals to support their children during the COVID-19, and how the pandemic affected parents’ perceptions of quality of their family life. The present study investigated parental perceptions of satisfaction with family-school collaboration and with family quality of life during the COVID-19 pandemic.Methods: Twenty-six parents of students with SEND who attended general lower secondary schools (grades 7-9) completed a survey using three measures: the demographic questionnaire, the Beach Center Family Quality of Life scale (FQOL), and the Family-School Collaboration scale – the adapted version of the original Beach Center Family-Professional Partnership Scale. Descriptive statistics, Pearson correlations were used to analyse data.Results: Parents felt less satisfied with family-school collaboration related to child-oriented aspects; they were least satisfied with their emotional well-being aspect of family quality of life. Strong, significant and positive associations were found between family-school collaboration and disability-related support aspect of FQOL.Discussion: The findings point to the importance of family-schoolpartnerships in promoting students’ positive school achievements, and inenhancing FQOL. The findings have practical implications for professional development of pre- and in-service teachers within the existing curricula of teacher preparation programs. Implications for further research are discussed given the study’s small sample size and challenges in recruitmentof participants.

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  • A scoping review of autism research conducted in Central Asia

    Review
    2023. Rano Zakirova-Engstrand, Gulnoza Yakubova.

    Very little is known about the status of autism research in Central Asia. The purpose of this scoping review was to examine the scope and focus of the peer-reviewed research studies conducted with autistic people and their families in five Central Asian countries—Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. The electronic databases of EBSCO Host and Web of Science were used for systematic search of literature. Eleven articles that met eligibility criteria were included in the review and analyzed for topics and research areas outlined in the Interagency Autism Coordinating Committee Strategic Plan. Ten of these studies were conducted in Kazakhstan and one in Uzbekistan using qualitative, quantitative, and mixed-methods research designs. Five of the seven research areas—Diagnosis, Biology, Risk Factors, Services, and Treatment and Interventions—were represented in these studies, while there were no studies identified in the areas of Lifespan Issues or Infrastructure and Surveillance, highlighting a gap in research. None of the studies reported co-authorship of scientists from Central Asian countries. The review identified knowledge gaps and research needs to guide future research in autism in Central Asia to address the needs of autistic individuals and their families living in this region.

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Contact

Name and title: Rano Zakirova EngstrandSenior Lecturer

Workplace: Department of Special Education Länk till annan webbplats.

Visiting address Room F1257Albanovägen 28

Postal address Specialpedagogiska institutionen106 91 Stockholm