Lived Experiences of Parents Raising a Child with Cerebral Palsy: A Phenomenological Study Akerke Tuzelova Submitted in partial fulfillment of the requirements for the degree of Master of Sciences in Educational Leadership Nazarbayev University Graduate School of Education April 2025 Word count: 16, 555 ii Author Agreement By signing and submitting this license, I Akerke Tuzelova grant to Nazarbayev University (NU) the non-exclusive right to reproduce, convert (as defined below), and/or distribute my submission (including the abstract) worldwide in print and electronic format and in any medium, including but not limited to audio or video. I agree that NU may, without changing the content, convert the submission to any medium or format for the purpose of preservation. I also agree that NU may keep more than one copy of this submission for purposes of security, back-up and preservation. I confirm that the submission is my original work, and that I have the right to grant the rights contained in this license. I also confirm that my submission does not, to the best of my knowledge, infringe upon anyone’s copyright. If the submission contains material for which I do not hold copyright, I confirm that I have obtained the unrestricted permission of the copyright owner to grant NU the rights required by this license, and that such third-party owned material is clearly identified and acknowledged within the text or content of the submission. IF THE SUBMISSION IS BASED UPON WORK THAT HAS BEEN SPONSORED OR SUPPORTED BY AN AGENCY OR ORGANIZATION OTHER THAN NU, I CONFIRM THAT |I HAVE FULFILLED ANY RIGHT OF REVIEW OR OTHER OBLIGATIONS REQUIRED BY SUCH CONTRACT OR AGREEMENT. NU will clearly identify my name(s) as the author(s) or owner(s) of the submission, and will not make any alteration, other than as allowed by this license, to your submission. I hereby accept the terms of the above Author Agreement. Author’s signature: Date: 28.04.2025 iii Declaration I hereby declare that this submission is my own work and to the best of my knowledge it contains no materials previously published or written by another person, or substantial proportions of material which have been submitted for the award of any other course or degree at NU or any other educational institution, except where due acknowledgment is made in the thesis. This thesis is the result of my own independent work, except where otherwise stated, and the views expressed here are my own. Author’s signature: Date: 28.04.2025 iv Ethical Approval 53 Kabanbay Batyr Ave. Astana 010000 Republic of Kazakhstan Date: 8 of November 2024 Dear Akerke Tuzelova, This letter now confirms that your research project titled… Lived Experiences of Parents Raising a Child with Cerebral Palsy: A Phenomenological Study has been approved by the Graduate School of Education Ethics Committee of Nazarbayev University. You may proceed with contacting your preferred research site and commencing your participant recruitment strategy. Yours sincerely , Dr Janet Helmer On behalf of: Dr Syed Abdul Manan, PhD Chair , GSE Ethics Committee Graduate School of Education Nazarbayev University Block C3, Room 5011 Office: +7(7172)6016 Mobile: + 77079240053 email: syed.manan@nu.edu.kz, gse.irec@nu.edu.kz v CITI Training Certificate 101 NE 3rd Avenue, Suite 320 Fort Lauderdale, FL 33301 US www.citiprogram.org This is to certify that: Akerke Tuzelova Has completed the following CITI Program course: Responsible Research Training (Curriculum Group) Social, Behav, Edu, Etc (Course Learner Group) 1 - Basic Course (Stage) Under requirements set by: Completion Date 05-Jun-2024 Expiration Date 05-Jun-2028 Record ID 62953885 Not valid for renewal of certification through CME. Nazarbayev University Generated on 27-Apr-2025. Verify at www.citiprogram.org/verify/?w2b6c4014-4fbf-43dd-817c-2907184e927d-62953885 101 NE 3rd Avenue, Suite 320 Fort Lauderdale, FL 33301 US www.citiprogram.org This is to certify that: Akerke Tuzelova Has completed the following CITI Program course: Social & Behavioral Research - Basic/Refresher (Curriculum Group) Social & Behavioral Research - Basic/Refresher (Course Learner Group) 1 - Basic Course (Stage) Under requirements set by: Completion Date 02-Jun-2024 Expiration Date 02-Jun-2027 Record ID 62953884 Not valid for renewal of certification through CME. Nazarbayev University Generated on 27-Apr-2025. Verify at www.citiprogram.org/verify/?w14ee3a95-1305-445b-b982-5726d7d75895-62953884 vi Acknowledgments I would like to thank professors, faculty members, academic English advisors, specifically Anita Jayachandran and Jeremy Richard Spring, and others who supported, directed, and motivated me in my two- year educational journey at Nazarbayev University. Firstly, I express my thankfulness to my supervisor Dr. Janet Helmer who has been very supportive and helpful in every part of writing my thesis project. I can say that she is a professional of her work as she always provided me with constructive feedback, that helped me be on a right track. Additionally, I am thankful to my close family members, including my parents and siblings for their support and trust in me. More importantly, I have grown and still am growing academically, intellectually, and emotionally together with my daughter, with her love, trust, and understanding assisting the overall well-being of our small family. Concluding, I would like to express my gratitude to Nazarbayev University, School of Preparatory Studies (Zero Year Program) for the remarkable experience I have gained there. I thank to all people who collaborated with me, including my peers, relatives, friends, and parents of a child with CP who helped to realize this project. vii Abstract Lived Experiences of Parents Raising a Child with Cerebral Palsy: A Phenomenological Study This phenomenological research study explored the lived experiences of parents raising a child with cerebral palsy (CP) in the context of Kazakhstan.The aim of this study was to investigate challenges that parents face in accessing education for their child and to gather their recommendations for future improvement. It attempted to illustrate the complex nature of the educational and developmental experiences of parents of a child with CP. The study used Family Systems Theory and Social Support Theory to explore how family support and social networks influence and shape parental experiences. Six parents participated in interviews from various regions of Kazakhstan. The study findings revealed significant challenges, including poor family support, inadequate support services, negative societal attitudes, financial, emotional, and relational strain. The recommendations of parents pointed out the necessity to strengthen the state support, enhance service accessibility, provide free psychological support, and raise awareness of society to decrease parent's stress level and challenges they face. Despite parents facing these challenges, they showed remarkable resilience frequently acting as a strong advocate for their child's educational and developmental needs. Overall, the research study emphasizes the need for systemic changes to improve the family’s support, which directly affects parents' quality of life as well as child's educational outcomes within the Kazakhstani context. Keywords: children with cerebral palsy, experiences of parents, Kazakhstan viii Аңдатпа Бұл феноменологиялық зерттеу Қазақстандағы церебральды сал ауруымен бала тәрбиелеп отырған ата-аналардың өмірлік тәжірибесін зерттеді. Бұл зерттеудің мақсаты ата-аналардың балаларының білім алуына қол жеткізудегі қиындықтарын зерттеу және олардың болашақта жақсарту бойынша ұсыныстарын жинау болды. Зерттеу церебральды сал ауруы бар баланың ата-анасының білім беру және дамыту тәжірибесінің күрделі сипатын көрсетуге тырысты. Зерттеу отбасылық қолдау мен әлеуметтік ортаның ата-аналық тәжірибеге қалай әсер ететінін және қалыптастыруын зерттеу үшін отбасы жүйелері теориясы мен әлеуметтік қолдау теориясын пайдаланды. Сұхбатқа Қазақстанның әр өңірінен алты ата-ана қатысты. Зерттеу нәтижелері айтарлықтай қиындықтарды көрсетті, соның ішінде нашар отбасылық қолдау, жеткіліксіз қолдау қызметтері, қоғамдағы жағымсыз көзқарастар, қаржылық, эмоционалдық және тұлғааралық қиындықтар. Ата-аналардың ұсынымдарында ата- аналардың күйзелісі мен олар кездесетін проблемаларды азайту үшін мемлекеттік қолдауды арттыру, қызметтердің қолжетімділігін арттыру, тегін психологиялық қолдау көрсету және халықты ақпараттандыруды арттыру қажет екендігі көрсетілді. Осы қиындықтарға тап болғанымен, ата-аналар балаларының білім алу және даму қажеттіліктерін қорғаушы ретінде жиі қызмет ететін керемет төзімділік танытады. Жалпы, зерттеу Қазақстандағы ата-аналардың өмір сүру сапасына, сондай-ақ балалардың білім алу нәтижелеріне тікелей әсер ететін отбасылық қолдауды жақсарту үшін жүйелі өзгерістер қажеттігін көрсетеді. Түйінді сөздер: церебральды сал ауруымен ауыратын балалар, ата-ана тәжірибесі, Қазақстан ix Аннотация Данное феноменологическое исследование изучало жизненный опыт родителей, воспитывающих ребенка с церебральным параличом (ДЦП) в контексте Казахстана. Целью этого исследования было изучение проблем, с которыми сталкиваются родители при доступе к образованию для своего ребенка, и сбор их рекомендаций по будущему улучшению. Исследование попыталось проиллюстрировать сложную природу образовательного и развивающего опыта родителей ребенка с ДЦП. В исследовании использовались теория семейных систем и теория социальной поддержки, чтобы изучить, как поддержка семьи и социальное окружение влияют и формируют родительский опыт. Шесть родителей приняли участие в интервью из разных регионов Казахстана. Результаты исследования выявили значительные проблемы, включая слабую поддержку семьи, неадекватные службы поддержки, негативное отношение общества, финансовое, эмоциональное и межличностное трудности. Рекомендации родителей указывали на необходимость усиления государственной поддержки, повышения доступности услуг, предоставления бесплатной психологической поддержки и повышения осведомленности общества для снижения уровня стресса у родителей и проблем, с которыми они сталкиваются. Несмотря на то, что родители сталкиваются с этими проблемами, они проявляют замечательную стойкость, часто выступая в качестве решительного защитника образовательных и развивающих потребностей своего ребенка. В целом, исследование подчеркивает необходимость системных изменений для улучшения поддержки семьи, что напрямую влияет на качество жизни родителей, а также на результаты обучения детей в Казахстане. Ключевые слова: дети с церебральным параличом, опыт родителей, Казахстан x Table of Contents Author Agreement .....................................................................................................................ii Declaration ............................................................................................................................... iii Ethical Approval ....................................................................................................................... iv CITI Training Certificate ........................................................................................................... v Acknowledgments..................................................................................................................... vi Abstract ....................................................................................................................................vii Аңдатпа ................................................................................................................................. viii Аннотация ................................................................................................................................ ix Chapter 1: Introduction .............................................................................................................. 1 Background ............................................................................................................................ 1 Cerebral Palsy (CP) .......................................................................................................... 1 Statement of the Problem ....................................................................................................... 2 Purpose of the Study and Research Questions ....................................................................... 4 Significance of the Study ....................................................................................................... 4 Summary ................................................................................................................................ 5 Outline of the Thesis .............................................................................................................. 5 Chapter 2: Literature Review ..................................................................................................... 7 The Theoretical Framework ................................................................................................... 7 Family Systems Theory (FST) ............................................................................................ 7 Social Support Theory (SST) .............................................................................................. 9 What is Cerebral Palsy? ......................................................................................................... 9 A Family with a Child with Cerebral Palsy ......................................................................... 11 Parents’ Challenges ......................................................................................................... 11 Cerebral Palsy and Challenges Related to Education .......................................................... 12 Learning Profile ............................................................................................................... 12 Early Intervention Service ............................................................................................... 13 Education of Children with CP in Kazakhstan .................................................................... 14 Homeschooling ................................................................................................................ 15 Teachers Perceptions of Inclusive Education ...................................................................... 16 Summary .............................................................................................................................. 17 Chapter 3: Methodology .......................................................................................................... 18 Introduction .......................................................................................................................... 18 Research Philosophy ............................................................................................................ 18 Research Design................................................................................................................... 19 xi Research questions ............................................................................................................... 19 Sample Selection .................................................................................................................. 20 Instruments ........................................................................................................................... 20 Data Collection Procedure ................................................................................................... 21 Data Analysis ....................................................................................................................... 21 Ethical Considerations ......................................................................................................... 22 Summary .............................................................................................................................. 23 Chapter 4: Findings .................................................................................................................. 24 Introduction .......................................................................................................................... 24 Study Sample ....................................................................................................................... 24 Data Analysis ....................................................................................................................... 25 Finding out the Diagnosis of a Child ................................................................................... 26 Circumstances and Impact of Medical Personnel ........................................................... 26 Initial Reaction of Family ................................................................................................ 27 Type and Severity of CP and Comorbidities .................................................................... 28 Changing mindset ............................................................................................................ 30 Support and Challenges in Education of a Child with CP ................................................... 31 Child’s Need and Education- Impact of Type and Severity of CP to Child’s Education 31 Child’s Need and Education- The Role of PMPC ........................................................... 32 Child’s Need and Education- The Role of Mothers and Siblings in Education............... 33 Parental Expectations ...................................................................................................... 34 Challenges and Support Needs of Parents ........................................................................... 35 Challenges Parents Face Raising a Child with CP- Navigating Petween Parental Roles .......................................................................................................................................... 35 Challenges Parents Face Raising a Child with CP- Lack of Medical Guidance and Shortage of Specialists ..................................................................................................... 36 Challenges Parents Face Raising a Child with CP- Societal Attitude ............................ 37 Current Challenges Parents Face Raising a Child with CP- Financial Hardship ......... 37 Areas of Support- Psychological ......................................................................................... 38 Areas of Support- Providing Clear Route After Birth of a Child .................................... 39 Areas of Support- Family and Relative’s Support ........................................................... 39 The Role of the Government................................................................................................ 40 Current State of Support .................................................................................................. 40 Recommendations for Improvement- Social Worker ....................................................... 41 Recommendations for Improvement- Financial............................................................... 42 xii Recommendations for Improvement- Forums on How to Develop Children with Different Types of CP ...................................................................................................................... 42 Summary .............................................................................................................................. 43 Chapter 5: Discussion .............................................................................................................. 44 Introduction .......................................................................................................................... 44 Lived Experiences ................................................................................................................ 44 Parental Roles ...................................................................................................................... 45 Challenges ............................................................................................................................ 47 Areas of Improvement ......................................................................................................... 48 Diagnosis and Birth ......................................................................................................... 48 Family support ................................................................................................................. 49 Societal Attitude ............................................................................................................... 50 The Quality and Accessibility of Services ........................................................................ 51 Development and learning ............................................................................................... 53 Schooling.......................................................................................................................... 55 Parental expectations....................................................................................................... 56 Summary .............................................................................................................................. 57 Chapter 6: Conclusion.............................................................................................................. 58 The Study Summary ............................................................................................................ 58 Implications for Future Research and Recommendations ................................................... 59 Practical Implications........................................................................................................... 59 Strengths and Limitations .................................................................................................... 61 Final Reflections .................................................................................................................. 62 References ................................................................................................................................ 63 Appendix A: AI Declaration Form .......................................................................................... 78 Appendix B: Recruitment Statement Addressed to Parents (English version) ........................ 79 Appendix C: Informed Consent Form for Parents (English version) ...................................... 80 Appendix D: Interview protocol (English version) ................................................................. 82 Appendix E: Data Analysis – Transcripts, Coding Samples ................................................... 83 xiii List of Tables Table 1 Demographic Information of the Mothers .................................................................. 24 Table 2 The Study Themes and Subthemes. ............................................................................. 25 Table 3 Type and Severity of CP and Comorbidities ............................................................... 29 xiv List of Figures Figure 1 Topographical Description in Cerebral Palsy: Unilateral and Bilateral Cerebral Palsy ......................................................................................................................................... 10 1 Chapter 1: Introduction This first chapter introduces the study by providing essential background information. In the subsequent sections, the issue central to the study is presented: the challenges and needs faced by parents raising a child with cerebral palsy in Kazakhstan. This section aims to provide a rationale for why these parents' experiences need to be explored in detail. The chapter then introduces the research questions that will guide the investigation, followed by a section explaining the study's overall purpose and significance. The final section outlines the remaining chapters. Background Cerebral palsy (CP) is one of the main neurological conditions that can affect mobility, posture, and muscle tone development; it results from an injury to the growing brain, which usually happens either prior to or soon after birth. Although the original brain damage does not get worse, children with CP may eventually develop secondary conditions that influence their functional abilities (Patel et al., 2020). Cerebral Palsy (CP) An internationally accepted definition for CP is that it is a set of permanent movement and posture disorders that limit a child's activity. These limitations stem from non-progressive disturbances in the developing brain of a fetus. The movement disorders themselves can manifest as muscle contraction, involuntary movements, lack of coordination and poor muscle control, or a combination of these. (Patel et al., 2020; Vitrikas et al., 2020). According to the Zhakupova et al. (2023) study, CP mostly starts from early childhood and at birth, with risk factors including the pregnancy, prematurity, and certain infections during pregnancy. As highlighted by Alaee et al. (2014), it is the primary cause of childhood motor disabilities, resulting in lifelong developmental challenges that can affect movement, posture, and, in some instances, sensory, 2 communication, and cognitive functions. The study by Vitrikas et al. (2020) indicated that CP affects approximately 2 to 3 out of every 1,000 newborns worldwide. According to Zhakupova et al. (2023), recent research in Kazakhstan shows an increasing trend in CP diagnoses. Over a ten-year period, from 2006 to 2016, they accounted for the rate of newly identified CP cases among children fluctuating between 44.9 and 82.9 per 100,000, peaking at 88.1 cases in 2009. In Kazakhstan, the hardships faced by a child with CP go beyond the medical condition. Despite the United Nations Convention on the Rights of the Child, Articles 5 & 23 (1989), which recognizes the rights of children with disabilities, parents and families in Kazakhstan encounter harsh realities. Those families face limited access to quality education and rehabilitation programs (Zhakupova et al., 2023). Furthermore, parents encounter financial strain doubled with negative social attitude and lack of assistance, which heavily limits parental ability to meet the child's basic needs. In addition to existing problems, according to Alaee et al. (2014), it is complicated by a long-term dependency of a child with CP on their primary caregivers, commonly mothers. The long-term dependency, in turn, creates substantial nurturing responsibilities and constant hands-on care, which hinder mothers' ability to manage and maintain first their overall well-being and then the other family member's needs. These challenging circumstances are exacerbated by a shortage of systemic support, which directly promotes social isolation and stigmatization (Alaee et al., 2014; Zhakupova et al., 2023). Statement of the Problem Studies by Murphy et al. (2011) and Kim et al. (2023) indicate that parents of a child with special needs, specifically those with intellectual and developmental disabilities, experience increased rates of stress, depression, and physical health problems compared to parents of typically developing children. These are due to their role as essential supporters. 3 Parents of a child with CP encounter exceptional psychosocial challenges related to their child's care, education, and medical needs (Alaee et al., 2014). In Central Asian nations, this burden is compounded by societal shame, particularly in rural areas, where parents raising children with disabilities often endure stigma. Consequently, some parents isolate their disabled children at home (Mukashev & Somerton, 2023), confining them to their homes, avoiding public places, and restricting their interactions with others, in an attempt to shield their children's disabilities from public view. Caring for a child with special needs requires parents' patience, additional support, and energy. Despite performing a variety of tasks, parents of a child with CP often have less time and opportunity to devote to themselves and may not have access to the necessary practices and services compared to parents of typically developing children. Some challenges of caring for a child with special needs can strain parental relationships within the family (Wei & Yu, 2010). Studies have found that parents of children experiencing emotional, or health issues are more likely to divorce (Wei & Yu, 2010; Kim et al., 2023). A longitudinal study conducted by Wei & Yu (2010) confirmed that 81% of children with emotional disturbances are more likely to have divorced or single parents. A study by Kim et al. (2023) over a decade later found divorced or separated single mothers of children with intellectual and developmental disabilities reported a lack of involvement from the other parent. Furthermore, families raising a child with disabilities often face heightened financial vulnerability due to the increased costs associated with specialized care and support (Alaee et al., 2014). The reduced time available for employment intensifies financial stressors on these families (Heiman, 2021). Therefore, according to (Majnemer et al., 2010), financial constraints can negatively affect how children perceive their abilities and self-worth. 4 Purpose of the Study and Research Questions The present study aims to explore the experiences of parents raising a child with cerebral palsy. The primary objective is to understand the parental challenges, their engagement in their child's education, and the support mechanisms they need. The overarching research question of the study: What are the lived experiences of parents of a child with CP? Sub -questions: • How do parents support the education of their child with CP? • What are the main challenges parents face in facilitating the education of their child with CP? • What improvements do parents suggest for supporting their child with CP? Significance of the Study Parents of a child with severe disabilities, such as cerebral palsy (CP), who require extensive care, are more likely to experience mental health challenges, family difficulties, and a lower quality of life (Cook et al., 2022). Raising a child with lifelong needs is demanding and requires a deep understanding of the factors that impact both parents' and child's daily lives. While much of this research originates from Western and East Asian countries, studies by Yelissinova et al. (2013) and Mukashev & Somerton (2023) have begun to address this gap in Kazakhstan. However, Yelissinova et al.’s (2013) study focused on the general challenges faced by families with children who have CP, and Mukashev & Somerton (2023) explored experiences of parents of homeschooled children with special needs, without a specific focus on CP. Therefore, to better understand the impact of CP on families in Kazakhstan, it is important to study the experiences, available resources, and educational needs of these parents and their child with CP. This knowledge can inform the development of targeted support programs to enhance parents' and child's 5 well-being and improve social and educational outcomes. This study is valuable for parents, educators, policymakers, and the broader community. This research on parental perspectives can guide the development of more effective support and interventions. Additionally, the educators will be equipped with a deeper understanding of the strengths and needs of a child with CP, promoting more inclusive classrooms. This research aims to help reduce the stigma and misconceptions surrounding CP in Kazakhstan, promoting a more inclusive society, and improving the lives of children with CP and their families. Summary This chapter has presented an overview on parental challenges raising a child with disabilities. Relying upon this foundation, it has also emphasized the significance of exploring the lived realities of parents caring for a child with CP. Recognizing that extensive research on cerebral palsy exists within Western contexts, the experiences of families in Kazakhstan remain comparatively understudied. Consequently, to address this particular gap in knowledge, the research problem has been clarified, the research questions have been formulated, and the purpose of the study and the significance have been determined and justified within the context of Kazakhstan. The subsequent chapter will delve into the current body of literature concerning CP and the specific challenges encountered by Kazakhstani families. Furthermore, it will present a theoretical framework and critically analyze the work of various scholars. Outline of the Thesis This research narrative unfolds across six chapters. The first chapter provided an introduction to the study, outlining its aims and scope. Chapter 2 then builds upon this foundation by synthesizing existing scholarship through a detailed literature review. The methodological approach, outlining the design and data collection processes, is presented in Chapter 3. Following this, Chapter 4 delivers the empirical findings and research 6 outcomes. Chapter 5 offers an interpretive analysis and discussion of these findings, exploring their broader implications. Finally, Chapter 6 concludes the narrative by summarizing the study's key contributions and suggesting avenues for future research. 7 Chapter 2: Literature Review The former chapter provided the necessary context, including the background, problem, objectives, questions, and significance of this research; this chapter, in turn, offers a review of the relevant literature. It introduces the chosen conceptual framework and then summarizes relevant studies on several key themes, including inclusive education in Kazakhstan, cerebral palsy, experiences of parents, challenges faced by families, and educational challenges of a child with CP. While some of the research may be dated due to the limited work on this topic, it remains valuable for understanding this underexplored area. The Theoretical Framework The current study employs two theoretical frameworks including Family Systems Theory (FST) by psychiatrist Murray Bowen (Metcalf, 2011) and Social Support Theory (SST) to explore the parental experiences of a child with CP. Family Systems Theory (FST) Gaff and Bylund (2010) viewed a family as a dynamic, complex, and ongoing developmental social system, where two or more individuals forming a relationship, start a communication and interaction processes, sharing positive, negative, or neutral information and support. Bowen's FST in this study provides a framework to understand the complexity of this interactive social system, where each family member has an effect on the other members, shaping new patterns of connection affecting the balance of the whole family (Gaff & Bylund, 2010, p 103; Rothbaum et al., 2002). According to Prest and Protinsky (1993), FST consists of three fundamental ideas that are particularly relevant to this study, including learned traditions, patterns shape behavior, and seeking balance. The idea of learned traditions represents the learned generational and cultural views on issues within the family (Prest & Protinsky, 1993). This idea in the context of the 8 current research can show the traditional views on parental roles raising a child with disability. For instance, in Kazakhstan, traditionally, according to An et al. (2018), mothers are viewed and assigned in a role of primary caregivers in terms of health, education, and development of a child with special needs. Reflecting on the learned traditions, the family system begins to develop certain patterns that shape family member's behavior (Gaff & Bylund, 2010). The idea ‘patterns shape behavior’ in the context of this study can investigate how generational patterns and views impact the lived experiences of parents raising a child with CP. For instance, continuing to refer to the study of An et al. (2018), it is stated that the mother, a primary caregiver, after discovering the diagnosis of a child develops new patterns, including daily care, visiting healthcare and developmental centers. All these patterns can shape mothers' behavior affecting her mental and physical well-being, which overall influences the family balance. Bowen's family systems theory states that after the shaped behaviors, family members are seeking for balance only after becoming consciously aware of the family's patterns (Metcalf, 2011). For instance, Metcalf (2011) explains the idea of seeking balance in the example of a mother who is seeking several comfortable ways to correctly interpret the illness of a father to her children, helping both mother and children to understand and solve the issue. In the context of the current research, through the prism of the idea seeking balance of Bowen's family systems theory this study will explore how parents restore the balance and suggest areas for improvement. Overall, Bowen's family system theory can help to explore parental roles within the family system, set family patterns and boundaries, identify both parents and a child with CP challenges and needs, how these factors can affect parental advocacy in child's education and development, and identify suggested areas for improvement. 9 Social Support Theory (SST) Social support is viewed as a dynamic, not stable, complex concept that requires both provider's and recipient's interactions, focusing on increasing the recipient's well- being (Hupcey, 1998). Building on this, Hajli et al. (2014) define this concept as the measurement of an individual's feelings of being supported, cared for, and responded to by people within their social networks. This concept is broadly recognized in psychology, health care, and sociology as it is assumed as a factor that eases burden and offers protection from health issues and life stress (Hajli et al., 2014). Hajli et al. (2014) indicated that social support includes the following types of support: informational, emotional, instrumental and appraisal ones. To be specific, the nature of informational support can include advice and guidance of social networks; emotional support includes empathy, care, love and trust; instrumental refers to material and tangible assistance; and elaborating on appraisal support, it refers to feedback and validation. From the perspective of inclusive education, Desombre et al. (2021) state that a variety of sources that can provide social support, including peers, teachers, administrators. Moreover, the study by Saeed et al. (2023) which focused on examining the influence of social support on a child with special needs' academic achievement and overall educational outcomes, identified that children with increased social support outperformed children with lower social support in academic achievement. In the context of this study, this social support theory can assist the researcher in investigating how social support from relatives, friends, the state, organizations affect family development in educational settings. What is Cerebral Palsy? Cerebral palsy, according to Novak et al. (2017) is a clinical diagnosis, which is grounded on a combination of neurological and clinical indications. Graham et al. (2016) state that this term refers to a collection of diseases with varying degrees of severity that 10 share key developmental characteristics rather than a single disease entity. Additionally, CP has different types and severity levels of motor and developmental disability (see figure 1). These include unilateral, that affects one side of the body, and bilateral cerebral palsy, where the legs are more affected than arms, or the whole body is affected (Graham et al., 2016; Novak et al., 2017). Figure 1 Topographical Description in Cerebral Palsy: Unilateral and Bilateral Cerebral Palsy Note. https://musculoskeletalkey.com/cerebral-palsy-10/ CP is commonly accompanied by several developmental issues in cognitive, communication, behavior, attention, and perception. Additionally, children with CP often experience epilepsy and a range of comorbidities and functional limitations, such as chronic pain, hearing and visual impairment, behavioral disorders, intellectual disability, musculoskeletal problems, sleep disorders (Graham et al., 2016; Novak et al., 2017; Tsibidaki, 2020). These motor, cognitive, and environmental factors can all influence social participation and daily life in children with CP (Bottcher, 2010). Moreover, Michelsen et al. (2005) in their study which was focused on education levels of people with cerebral palsy, identified that most people with CP had some education, but many did https://musculoskeletalkey.com/cerebral-palsy-10/ 11 not finish high school. Additionally, factors like IQ, type of CP, walking ability, and parents' education levels influenced whether a child with CP received education or not. However, they noted that even though children with CP often face challenges in education, many can still achieve educational goals with the right support. A Family with a Child with Cerebral Palsy According to Tsibidaki (2020), CP is a chronic disorder that has a major impact on a child's growth, well-being, and movements. It also makes it difficult for families to adapt and adjust. Parents who may still be having difficulty accepting the diagnosis may find this condition's continual, hands-on care stressful and emotionally taxing, which can result in a decline in their well-being. Research from Canada, Australia, Iran, and other Asian nations has repeatedly shown that parents of children with special needs, especially those with cerebral palsy, first face emotional and physical health problems, then social and psychosocial difficulties. These challenges can negatively affect parental overall quality of life (Alaee et al., 2014; Smith & Blamires, 2022). Parents’ Challenges The complex, long-term nature of CP affects every facet of family life. Because each child is different, carers have to deal with changing expectations. Parents of children with cerebral palsy report worse life satisfaction than parents of children with usual development (Davis et al., 2009; Tsibidaki, 2020). Significant effects on independence, physical and social well-being, familial relationships, and access to support resources were noted in Davis et al. (2009) interviews with mothers and dads of children with different CP severities. For example, carers often said, ‘You lose a lot of freedom’, ‘You can't do things like you used to be able to do’, and ‘I want time to myself’, as a result of their child’s continual care needs. Furthermore, maternal caregiving responsibilities often intensify as children with CP maintain prolonged dependence for basic needs like feeding, dressing, 12 and bathing. Regarding these increased pressures, Iranian moms who participated in a cross-sectional survey reported having less time for personal, professional, and recreational activities (Rassafiani et al., 2012). The study's shortcoming, though, is that it didn't investigate the availability of support networks. Additionally, research on marital stability among caregivers presents conflicting findings. Kim et al. (2023) suggests an elevated divorce risk for parents of children with special needs. Conversely, Müller et al. (2022), examining Swedish families, found no increased divorce risk, except among those with lower education levels. However, this finding may indicate the strong social safety system of Sweden and cannot be generalized to populations with less developed social support system. Cerebral Palsy and Challenges Related to Education Parents face various challenges raising a child with CP, including emotional, social, and financial challenges. However, the educational challenges specifically require close investigation. For children with CP to be included and thrive in learning environments, it is important to understand several key areas. Learning Profile Since CP is a chronic neurodevelopmental condition with accompanying comorbidities such as visual and cognitive impairment, epilepsy, attentional and behavioral difficulties, that significantly affect every facet of everyday life, almost half of all children with CP have difficulties in learning (Micheletti et al., 2023; Wotherspoon et al., 2023). Depending on the degree, kind, and timing of the brain damage, the coexistence of these comorbidities can vary greatly (Micheletti et al., 2023). Fluss and Lidzba (2020) identified that intellectual disability is frequent, especially in children with severe motor impairment and early epilepsy. Speech and language problems are common across all CP types. As a result, children who have severe physical 13 disabilities are occasionally placed in groups with children who have an IQ of less than 50, or their evaluation is based entirely or partially on clinical assessments by qualified doctors (Sigurdardottir et al., 2008). Also, visuospatial functions, attention, and executive functions are often mildly to moderately impaired. Studies have found that there is a correlation between motor impairment and cognitive function; for instance, poor motor skills often indicate weaker cognitive abilities (Fluss & Lidzba, 2020; Pirila et al., 2007; Sigurdardottir et al., 2008). In a systematic review of studies on cerebral palsy, cognition, and academic achievement published after 2000, a majority of them highlight the importance of considering cognitive and academic challenges alongside motor impairments in CP management (Fluss & Lidzba, 2020). A retrospective study, done by Pirila et al. (2007) that included 36 children identified that the severity of CP (motor limitations) was related to the child's language and motor speech problems. Sigurdardottir et al.’s (2008) study of 127 Icelandic children between the ages of 4-6 with CP found that a child with strong speaking skills but weak motor skills may have hidden learning difficulties. Additionally, the study found that children with milder movement limitations (hemiplegia and diplegia) generally performed better than those with more severe limitations (quadriplegia and dyskinetic CP). Interestingly, even children with very limited movement showed good skills in comprehension. However, the findings may have been different among children in other nations with different healthcare systems or socioeconomic backgrounds. Early Intervention Service There is a consensus among clinicians that a child with a damaged central nervous system must acquire rehabilitation interventions or early intervention (EI), as early as possible, during the critical period of brain development. EI includes various rehabilitation services focusing on five key areas: thinking, physical skills, communication, daily living 14 skills, and social and emotional skills (Bufteac et al., 2020). However, not every approach will be beneficial for a child with cerebral palsy; the ideal course of treatment depends on several factors, including age, type, severity, parental variables, environmental factors, and neuroplasticity principles (Morgan et al., 2021). There are several studies (Hadders-Algra, 2014; Bufteac et al., 2020) that focused on investigating whether these EI sessions might slightly improve how children with CP talk, move and develop. The study by Bufteac et al. (2020) over a year analyzed the records of 351 children with with CP in Moldova to assess the impact of EI programs on the development of these children. The study findings identified almost no differences between those who attended and those who did not attend EI programs in visual, communicative, and cognitive outcomes of children with CP, contradicting the claim about the EI programs can slightly enhance the cognitive development of children with CP. However, Bufteac et al. (2020) emphasized in their study the importance of motor training programs, as they found their effectiveness in motor development, which may also assist the parents in preventing contractures. Education of Children with CP in Kazakhstan Over the past two decades, the Ministry of Education and Science of Kazakhstan has confirmed several important educational reforms and prioritized joining the global movement to inclusive education (Passeka & Somerton, 2022). Reflecting these confirmed reforms, Article 30 of the Constitution of the Republic of Kazakhstan, every child has the right to get free based compulsory secondary education (Passeka & Somerton, 2022), and Article 24 also states that children with special needs have the right to receive education in a mainstream school with their peers (Helmer et al., 2020). However, despite the confirmed policies, the reality of how the schools accept and support this commitment depends on several factors, including country's historical background and social roots (Helmer et al., 2020), and the recommendation of the Psychological-Medical-Pedagogical 15 Consultations (PMPC) (Human Right Watch, 2019; Passeka & Somerton, 2022). The PMPC determines a child's unique learning ability and gives the recommendation for parents about the child's educational placement, ranging from mainstream, special school or home-school them (Allan & Omarova, 2020; Passeka & Somerton, 2022). A child is categorized by his or her main diagnosis and is suggested to be placed in relevant school type with relevant remedial curriculum (Passeka & Somerton, 2022). However, according to Human Right Watch (2019), the PMPC's recommendation is mostly trated for parents as a final educational placement decision of a child with disability. Also, reflecting on the former historical background and social roots factor by Helmer et al. (2020), this is often seen as the legacy of the Soviet system that promoted the ‘correctional’ or ‘special’ education approach, where children with disabilities and special needs were placed in correctional and special schools or educated at home by excluding them from the mainstream educational system (Makoelle, 2020; Rollan & Somerton, 2019). Kazakhstan's special education system has its roots in the Soviet medical model of disability. This model views disability as a personal failing within the individual. As a result, their approach to educating students with disabilities is called ‘defectology.’ Defectology historically was structured and focused to correct and put a child into the existing education system, rather than to meet child's specific educational needs and adapt the system (Makoelle, 2020; Mukashev & Somerton, 2023). Homeschooling Children with disabilities may get their education in Kazakhstan in a variety of settings, including homeschooling, special education, or ‘correctional’ education, as well as public/ mainstream or private schooling. The state of home education is however unclear. Homeschooling in Kazakhstan is generally not permitted by law, except for 16 specific cases such as temporary foreign residents and children with special needs (Mukashev & Somerton, 2023). Children, who need special education first go to a local medical center's Medical Advisory Commission (VKK) for a health check. The VKK's findings are then considered by the PMPC, which includes medical and education professionals. For children who cannot go to school, Kazakhstan offers publicly funded home schooling with a teacher visiting for just 8 hours a week. They focus on basic subjects and the child has no opportunities for socializing, which is a key goal of inclusion. It also creates a segregated environment, something Kazakhstan's inclusion policy aims to avoid (An et al., 2018; Mukashev & Somerton, 2023). Additionally, An et al.’s (2018) qualitative study, that focused on documenting 17 parents' experiences and perceptions in two major cities of Kazakhstan, found that teachers lack the training and qualifications to work with these children. If this finding is representative of parents’ experiences in urban areas, the experiences of families in smaller towns and rural areas may be far more challenging. Teachers Perceptions of Inclusive Education Although Kazakhstani teachers are largely shared a positive attitude towards inclusive policy and practice, the majority of them are against including in mainstream schools children with severe levels of disability (Makoelle, 2020; Passeka & Somerton, 2022). For instance, one of the teachers in Makoelle’s (2020) study expressed: ‘I have a child with mental retardation in my class, but he is [a] very difficult child.’ This implies that although teachers are generally positive toward inclusive education, inclusion of learners with mental and intellectual disabilities brings with it a certain level of concern. Another case study done by Passeka and Somerton (2022) that explored the perceptions, feelings, and beliefs of special educators in a particular city, found that teachers sometimes 17 exclude a certain group of children with special educational needs from mainstream schools, which is contrary to the core principles of the inclusive education model. Summary As in every country, children with cerebral palsy in Kazakhstan struggle in many areas of development and receive learning that can be uneven, mainly arising from the challenges in the education system that is still holding on to elements from the past. This review explored the challenges and experiences of parents raising a child with CP and presented the challenges of inclusive education in Kazakhstan. This chapter highlighted the value of using frameworks like Family Systems Theory and Social Support Theory. The following chapter will present the methodology used in this study. 18 Chapter 3: Methodology Introduction The previous chapter included a general review of the topic of this research, explored the reality of raising a child with cerebral palsy, and analysed the knowledge gained from earlier research studies. The focus of the current chapter is the methods used in this investigation. The research design and methodology are presented in this chapter together with other significant elements such research questions, sample size and selection, data collection methods, and the analysis that follows. Ethical considerations are also discussed. Research Philosophy The two main components of philosophy are ‘ontology’, which deals with the basic assumptions about the nature of our reality, and ‘epistemology’, which is concerned with how we comprehend or learn about it (Leavy, 2014). The current study adopts a philosophical stance known as interpretive epistemology, which is based on the idea that reality is random and depends on personal interpretation. Specifically, the current research study employs phenomenology, a human being’s philosophy (Qutoshi, 2018). This approach, according to the Qutoshi (2018), is directed to identify our position, focused to expand our vision about the reality, and to research the lived experience deeper. Researchers should therefore avoid making the assumption that they are aware of the meanings that people ascribe to specific phenomena. According to Leavy (2014), as cited in Muratkhan (2024), the researcher's job is to uncover the parts of people's perceptions that they take for granted. The researcher has a close family relative, who is raising a child with cerebral palsy. Although the researcher's perspective of parental experiences and the support needs of children with cerebral palsy has been impacted by this experience, the current study was 19 purposefully designed to avoid confirming any prior assumptions the researcher may have. To avoid any unexpected impact on the results, potential researcher biases were carefully considered at every stage, from participant interviews to data processing. Research Design This study uses the qualitative research approach of phenomenology to explore lived experience of parents raising a child with cerebral palsy. Phenomenology focuses on understanding the shared experiences of participants and the underlying meaning or essence of those experiences (Padilla-Díaz, 2015). Additionally, the philosophy of phenomenology aims to understand how we experience the world around us. This includes interactions with others i.e.(teachers and students, nurses and patients, therapists, and clients) and our encounters with things (books, news, hobbies, anxieties) (Vagle, 2018). According to Anagnostaki and Zaharia (2020), this research approach, includes a deep examination of a small group of participants and requires a dynamic interaction between the researcher's prior knowledge, and the data collection. Particularly, in the current research study, the researchers' background as a researcher informed by an understanding of family systems theory (FST) and social support theory (SST), serves as how the parents' accounts of their experiences raising a child with CP in Kazakhstan can be interpreted. By using this approach, the researcher is able to delve into the parental unique perspectives and concentrate on the challenges and resources they face within their social and cultural environment. Therefore, to understand the parental experience of parents raising children with cerebral palsy, the research employs a phenomenological method. Research questions Research questions are the foundation of any study. They are helping researchers to understand the phenomenon they're investigating (Leavy, 2018; Creswell, 2015). The main 20 question guiding this study is: What are the lived experiences of parents of a child with CP? Sub -questions: • How do parents support the education of their child with CP? • What are the main challenges parents face in facilitating the education of their child with CP? • What improvements do parents suggest for supporting children with CP? Sample Selection Phenomenological studies typically involve a small group of people to interview who have experienced the studied phenomenon (Qutoshi, 2018). This research was focused on parents with at least one child diagnosed with cerebral palsy. The participants were recruited based on snowball sampling for this study. Goodman (2011) defines snowball sampling as a technique for conducting interviews with members of an individual's close social circle while employing guided questions to the interviewee. The researcher is familiar with one family who already agreed to participate in the study and other participants were referred by initial family’s connections. Also, using snowball sampling, potential participants were reached through social media networking sites as well as personal acquaintances. Factors such as the child’s age, socioeconomic background, gender, and the extent of the CP condition were not considered in the screening criteria. I also met with a group of parents who have a child with CP and explained about my research and its purpose in order to possibly secure additional participants. Instruments In this qualitative inquiry, the data was collected from the main participants raising a child with CP through semi-structured interview. According to Jamshed (2014), the 21 semi-structured interview is an in-depth interview where the respondents must answer pre- designed open-ended questions. This data collection technique is one of the most important for the present study, as it can shed light on main research questions. By merging the data collection technique and the employed theoretical frameworks in this research, the researcher structured an interview protocol (see Appendix D) with questions that gave parents a complete understanding of how they navigated the emotional, social, and educational challenges of having a child with cerebral palsy. Data Collection Procedure Once the study received ethics approval from Nazarbayev University Graduate School of Education (NUGSE), recruitment began. The consent form was sent via Telegram or WhatsApp chat, and/or individually delivered by the researcher. The study's objective and aims, the research methodology, potential risks and benefits, participant rights, and the researcher's contact information were all thoroughly outlined on the form. According to Creswell and Poth (2017), this documentation procedure protects participants' rights during the whole data gathering process. Participants' preferred day, time, and place were taken into consideration when scheduling interview appointments after obtaining their consent. All the sessions were done via whatsapp audio or Google Meet depending on the preference of the participant. These sessions lasted for between 30 to 45 minutes. Each interview was digitally recorded with participants’ prior consent for recording of the conversation, verbatim transcription, and interpretation of data. Once the interview had been transcribed, I checked back with each participant to be sure it was presented correctly. Data Analysis Phenomenological data analysis in qualitative data involves reviewing interview transcripts to identify key statements that reveal how participants experienced the 22 phenomenon being studied (Creswell & Poth, 2017). The researcher analyzed the interview data in several steps. First, I transcribed the interviews converting audio recordings into written text. Subsequently, translated the initial text from Kazakh or Russian to English. And then I started the coding process. In this context, the researcher applied the following codes: Descriptive and In Vivo codes (Saldana, 2013, p.27). It can be suitable to employ multiple coding systems simultaneously in various situations (Saldana (2014). Following this, key themes and patterns were identified, similar data were grouped under specific categories or subcategories, respectively. And finally, it was possible to generate a number of themes that addressed the research issues of the present research study. Ethical Considerations Ethics (Göçen, 2021) is presented as a branch of philosophy which broadens into many fields. Bon and Bigbee (2011) state that ethics is the endeavour to behave by a set of values, beliefs, and principles. It suggests that the person is willing to act in accordance with their particular ethical principles and is conscious of them. However, according to Oliver and Eales (2008), researchers must be more aware of the possible consequences regarding the personal, and emotional issues, as the ethical concerns may stem from a variety of factors, including the nature of the research project itself, the context in which it is being conducted, the procedures that will be put in place, the methods of data collection, the participants, the type of data that will be collected, what will be done with the data, and how the data will be reported. The first step was to de-identify all of the data collected during the interview in order to preserve the participant's confidentiality and privacy. In order to maintain the confidentiality of the data, all information that might be used to identify the participants was deleted after the research project was completed. The researcher kept the collected 23 data on a password-protected laptop. Furthermore, as recommended by Clark et al. (2017), transcription verification by study participants had been done to ensure data reliability and proper representation of parent voices. During the interview process, the research topic and questions may also evoke unpleasant memories or experiences, as the questions, particularly related to "The First Reaction" may seem sensitive in the interview process. During the interview, the researcher was ready for any uncomfortable scenarios that might come up. Specifically, when confronted with the emotional pain of participants in qualitative research, researchers may become distressed (Oliver and Eales, 2008). Interviewers may consequently get overly attached to the participant or overly disengaged. As a result, the interview protocol also contained a script or language for providing assistance, pausing, or ending an interview. Summary This chapter has outlined the research methodology used in this study. It covered the chosen qualitative design, specifically a phenomenological approach. This approach delves into the lived experience of parents raising a child with cerebral palsy. The chapter also detailed the research questions, participant selection, data collection instruments, interview procedures, data analysis plan, and ethical considerations. 24 Chapter 4: Findings Introduction The present phenomenological research study’s purpose is to explore the experiences of parents raising a child with cerebral palsy. Particularly, it focuses on understanding the difficulties they face, their role in their child's education, and the support they need. Data was collected through semi- structured interviews from six parents. Interview data was coded and analyzed, identifying key themes that shaped this chapter. These themes are used to address the main research question and its sub-questions. This chapter presents the findings with direct quotes of participants from the interview to better understand the phenomenon in this context. Study Sample Table 1 presents the demographic information of participants in the study. Each participant was assigned a pseudonym. The interview was collected from various regions of Kazakhstan, specifically Astana, Almaty, Kostanay, Atyrau, where two of them resided in rural areas. Table 1 Demographic Information of the Mothers # Participant pseudonym Child (age, gender) Residence City of residence P1. Guli Son, 21y Rural Atyrau P2 Alla Daughter, 9y Urban Astana P3 Fariza Son, 12y Urban Astana P4 Aidyn Daughter, 13y Rural Almaty 25 P5 Aliya Daughter, 11y Urban Almaty P6 Dana Son, 4y Urban Kostanay Data Analysis After two stages of coding and categorizing, there were four main themes and twelve subthemes developed. These themes represent parent’s diverse lived experiences of directing the journey of their child with CP (see Table 2). The main themes include: (1) Finding out the diagnosis of a child (2) Support and challenges in education of a child with CP; (3) Challenges and support needs of parents; (4) The role of the government. Furthermore, these themes were divided into sub-themes giving a detailed understanding of participant’s diverse experiences. Table 2 The Study Themes and Subthemes. Themes Subthemes 1 Finding out the diagnosis of a child a) Circumstances and impact of medical personnel b) Initial reaction of family c) Type and severity of CP and comorbidities d) Changing mindset 2 Support and challenges in education of child with CP a) Child’s need and education ·Impact of type and severity of CP to child’s education ·The role of PMPC ·The role of mothers and siblings in education b) Parental expectations 26 3 Challenges and support needs of parents a) Current challenges parents face raising child with CP ·Navigating between parental roles ·Lack of medical guidance and shortage of specialists ·Societal attitude ·Financial hardship b) Areas of support · Psychological ·Providing clear route after birth of a child ·Family and relative’s support 4 The role of the government a) Current state of support b) Recommendations for improvement ·Social worker ·Financial ·Forums on how to develop and learn child with different types of CP Note. CP = Cerebral palsy. Finding out the Diagnosis of a Child The first theme represents the circumstances where mothers discover the diagnosis of their child; the family members reaction; the type and severity of CP and comorbidities; and the factors that help mothers to change their mindset and be an advocate. These processes are individual for every family and shaped by several factors. Circumstances and Impact of Medical Personnel Most of the participants reported a range emotional feeling when they discovered the diagnosis of their child, including a sense of helplessness, panic, shock, and self- blaming. All the participants went through the range of emotions when they found out their child had CP. Two of the participants (Guli and Aliya) realized the news during the first year of development of their child, the other four participants highlight unprofessionalism 27 of the medical personnel and have blamed them for the fact their child is disabled. For instance, Fariza and Aidyn argue that because of doctors did not control the level of bilirubin in blood during the jaundice, harmful components, having reached the child’s head, penetrated all brain cells and killed neural connections. This straightly led to a severe type of cerebral palsy. According to Fariza: I have never expected to have a special child. After two pregnancies, 12 years ago I got pregnant with twins. The pregnancy was so easy that the doctor allowed me to give birth on my own. Both my twins weighed well at birth, I gave birth in a private clinic, and both were born healthy. However, one of the twins became disabled due to the illiteracy of the medical staff. Bilirubin exceeded the norm, although the doctors assured me that it would go away on its own. I still cannot forgive myself for listening to those irresponsible doctors. Two other participants, Alla and Dana, shared that because the obstetricians performed the birth incorrectly, the baby's head was severely damaged due to lack of oxygen, which led to the diagnosis of cerebral palsy. On the other hand, the former two participants, Guli and Aliya, say nothing negative about the birth of the child, but still replied that they never expected to have a child with CP. For example, Guli states the following: I didn’t know in advance that my child would be special, it started to become clear and visible from six months. Initial Reaction of Family Interview findings revealed that almost every mother endured a double burden of emotional stress: the news of her child's diagnosis coupled with blame from her family. They (Guli, Alla, and Dana) report that initially close family members often react negatively, blaming the mother, give little support, insisting that such diseases are foreign 28 to their family history, and even suggesting the child be sent to a boarding school. Fariza attributes this to a low level of education and understanding of people in Kazakhstan about children with special needs, adding that this leads to the breakdown of the family in many cases; parents get divorced, the father leaves the mother without financial support. According to Fariza: Few people understand the situation of the mother, and more and more people blame her. I think this shows a low level of education and understanding of people here. Additionally, my close relatives suggested sending the child to a boarding school. Also, my husband couldn’t stand it for long, family dramas began, he became a gambling addict, got into debt, it was a big burden for me, and soon we got divorced. Aidyn shares almost the same experience, relating to the initial reaction of her family. She reported that even her own parents abandoned her. Also, ‘My husband's family,’ she explains, ‘still blames me for our daughter's condition, subjecting me to cruel words and even eviction. But my daughter is my strength, and I will endure anything for her.’ On the other hand, Aliya and Dana shared that they experience strong support and positive reaction from their husband and mother. Aliya says: ‘First, my mother helped me to accept my child. Then, my husband was always with me.’ Similarly, Dana expressed: My husband did not abandon me in a difficult situation with a special child, and I decided to continue to fight for the preservation and development of our family. Type and Severity of CP and Comorbidities Participants in this study shared the information about the specific type of CP and comorbidities (see table 3) that can be a barrier for successful educational, physical, and emotional development. 29 Table 3 Type and Severity of CP and Comorbidities Participant’s child Type and severity of CP and comorbidities Guli’s son Severe form of spastic hyperkinesis, epilepsy, severe mental disability Alla’s daughter Severe form of spastic hyperkinesis, visual impairment (one eye), curvature of the spine, severe mental disability Fariza’s son Severe form of spastic hyperkinesis, epilepsy, severe mental disability Aidyn’s daughter Severe form of spastic hyperkinesis, poor mental development Aliya’s daughter Epilepsy, poor mental development Dana’s son Severe form of spastic diplegia, epilepsy Four parents (Guli, Alla, Fariza, and Aidyn) report that their child has a complex form of cerebral palsy, namely spastic hyperkinesis and comorbidities like visual impairment, epilepsy, severe mental disability. In general, they say that their children, in addition to their comorbidities, are unable to move their arms and legs independently, sit, or perform daily needs. However, Alla and Aidyn say that their daughters could express emotional feelings and try to make contact through it. Another participant’s (Dana) son has severe type of spastic diplegia and epilepsy. She states: ‘Our son has a severe type of CP, 30 specifically, spastic diplegia and epilepsy. He has severe muscle tension, which prevents him from performing new skills and speaking.’ In contrast, there is one participant’ child (Aliya’s), whose physical, emotional, mental performances improved vividly after several rehabilitations. Mother says: At the beginning my daughter was not able to do any movements, walk, or speak. But maybe it’s magic, after a long period of supervision, love, my attention, rehabilitation, she is able to speak and walk now. Changing mindset When the interview questions got to the point to what helped parents accept their child’s situation several talked about, trust in God (Guli, Alla, Fariza, Aidyn), then being an advocate (Guli, Alla, Fariza, Aidyn, Dana) and third, the educational background (Guli, Fariza, Aliya) unified the ideas almost of every mother. For instance, Fariza indicates this transformation, stating: Caring for my child with special needs opened my eyes to the difficulties faced by families like ours. These challenges transformed my outlook and spurred me to make a difference. We established an NGO to advocate for these families, working closely with the Department of Health to bring their concerns to the government's attention. We achieved significant progress, securing essential resources like strollers, diapers, and free bus passes for parents. My dedication led me to become president of the NGO, where I fought tirelessly for our community. While this work was incredibly fulfilling, it came at a cost: I struggled to balance my advocacy with my own child's educational and developmental needs. Additionally, two things are important to mention: First, my faith provides me with answers and guidance. Second, I have a strong educational background. 31 Another participant (Aliya), a psychologist, connects her educational background to a source that helped her not only change her mindset but also, to accept her child’s diagnosis and love her uniqueness. She describes: Before, when I did not have children, I worked as a psychologist, met children with disabilities, and I tried to make them happy. It gave me incredible sense of joy. Now, I think my profession changed my mindset and helped to accept my child as she is. In turn, this acceptance and love helped make positive changes in her development. Support and Challenges in Education of a Child with CP The next theme presents the overarching topic of the educational journey of children with cerebral palsy. This theme requires careful consideration of several key factors, such as: the child’s education, more specifically, impact of type of CP to child’s education; the role of the Psychological Medical Pedagogical Commission (PMPC); the role of mothers and siblings, and parental expectations. Child’s Need and Education- Impact of Type and Severity of CP to Child’s Education According to the explanation of all parents, the educational experience of children with CP is closely bounded with the medical diagnosis, where alongside the primary diagnosis they frequently struggle with comorbidities (see table 3). For instance, Guli and Fariza are not able to support their child’s educational needs because of severity of type of CP and severe cognitive disabilities. Moreover, some doctors suggested Guli not to develop her son with CP. She shared: In the village, one woman, a doctor, said that if I put him on his feet and develop, I would not be able to keep him at home. If he gets up, he will not be able to control himself, react to the environment, it will be very dangerous for me and others as well. She asked not to develop his abilities. 32 Alla explains that although her daughter has severe type of CP and severe cognitive disability, she is able to express her feeling, and because of this she attends public kindergarten. She states: My daughter is able to express her feelings, that is why when she was 6, we found public kindergarten to attend for children with various special needs. Here she gets massage, exercise therapy. The teachers are specially trained, selected to work with special children. They teach children to draw, sing, express emotions, and we as parents, in close contact with the teachers, actively participate in such events. Two mothers (Aidyn and Aliya) reported that their children receive education at home and show positive development. Aidyn says: She is homeschooled. The teachers come and teach a regular lesson, 45 minutes, or an hour, depending on the child's mood. Every year a new subject is added. I am happy that she is getting an education. Dana expressed that her son is too young to attend the school, saying: “At the moment we don't go anywhere. We're focusing on working with him while he's young and more malleable.” However, she clarified that they are actively pursuing rehabilitation and seeking out qualified specialists, stating: Our child has a complicated diagnosis, his muscles are very stretched, they do not allow him to perform new skills, spastic diplegia, plus epilepsy. Not long ago we visited a defectologist, an occupational therapist, but I think this is not enough. Since he has spastic diplegia (severe form), I think we need a good speech therapist, speech therapy massage, a pool to relax tense areas of the body. Child’s Need and Education- The Role of PMPC The interviews revealed that PMPC’s decision and PMPC’s psychological tests can determine the future educational journey of a child. For example, Aidyn and Aliya 33 indicated that after passing PMPC’s psychological test, this commission gave permission to receive homeschooling. Aidyn says: We passed the PMPC commission, and then we were accepted to the school. Not all special children can pass the commission, we received permission as my daughter does not have severe mental disability, and additional illnesses. On the other hand, for the interview question whether a child goes to school or no, parents (Guli, Alla, and Fariza) reply that their children could not pass even PMPC’s psychological test due to severe cognitive disability. Fariza states: The PMPC decides whether we can receive an education at school, as our child can't even pass their psychological test. There can be no talk of school here. The severity level of him is so high. Child’s Need and Education- The Role of Mothers and Siblings in Education The responses of the several participants (Aidyn, Aliya, Dana) indicated that education happens not only with teacher, at school, or during therapy, but it happens daily at home with parents, and surrounding people, like siblings. According to Dana: During rehabilitation, I always observe specialists, remember their actions, and repeat them at home. For example, not all children like other people's hands until they trust them, but they trust their parents. In this way, I participate in their development. Such support in the development and education of a child with cerebral palsy is a very important aspect, since a child with such a diagnosis needs daily massage, exercise therapy, and we do not go to rehabilitation every day or every month. Aidyn discussed that she tries to give comprehensive development and learning, saying that she has dedicated her whole life her daughter. She expressed: 34 I take my daughter to various concerts and teach her to use a tablet. Thanks to this, she expresses her feelings and needs. I try to develop my daughter as comprehensively as possible. Even though we live in rural area, we go for walks to keep my daughter's mind clear, I monitor her mood, and she signals her needs with her voice or eyes. We draw together, she is happy and loves music. Aliya reports the same, but also highlighting the importance of sibling’s role, stating: I try to do daily exercises with her so that my daughter can get education, I train her fine motor skills, we talk a lot, I tell her how to behave on the street, tell her what is right and what is not. Not only me, but also her sisters, teach her what they know. I systematically teach them how to help each other with compassion. It is crutial for me to foster a sense of community and shared responsibility. Parental Expectations During the interview, parents discussed their long-term expectations for their child. Several parents’ responses indicate on the one hand, they have no hopes and expectations for the future, other than to improve their child’s current physical state (Guli, Alla). However, Fariza expressed, ‘I hope my son will speak at least, if a comprehensive support would be presented, like a social worker, financial support, and others’, pointing out there is no support in her environment. On the other hand, there are positive responses from other parents (Aidyn, Aliya, and Dana), who not only research, put much effort today, to realize hopes in true. For example, Aidyn says: In the future, I dream of my daughter developing and getting an education, and for this I always look for different programs. Now there is such a program EYE TRACKING, that determines what the child wants by reading where the eyes are looking, but it is very expensive. 35 Aliya and Dana had the same opinion, emphasizing they hope to reveal a specific talent or skill of the child. Aliya states: Despite the challenges, I'm determined to support my daughter's interests and help her reach her full potential. She may struggle with logic, but her artistic skills are exceptional. I wish to see her working in a beauty salon one day. We're working hard to develop her talents and help her find a career she loves. Never stop to believe in and hope for the bright future of your child. Challenges and Support Needs of Parents This theme explores various aspects of parenting a child with CP, focusing on the challenges parents face and the support they need. The theme is organized into subthemes, each addressing key challenges and support areas. For instance, challenges include parental burnout, lack of medical guidance, and societal attitude. Support areas encompass financial assistance, psychological support, providing a clear route after a child's birth, such as medical guidance, family and relative support, and parental activism. Challenges Parents Face Raising a Child with CP- Navigating Petween Parental Roles During the interviews, all participants discussed their family roles and parenting styles, considering not only their experiences as mothers of children with CP but also their relationships with their other children. All participants described navigating multiple family roles, including full-time mother, wife, homemaker, and career. Some work outside the home, and others fulfill the roles of both parents. While juggling these responsibilities, most of the parents reported experiencing parental burnout, and development of complexes in how they are parenting their other children. For example, Guli states the following: As a single mother whose husband passed away, I am the sole provider and caregiver for my son with cerebral palsy and my other child. I'm responsible for all aspects of our family life, including financial stability, which requires me to work. 36 Caring for my son with CP, especially as he grows older and stronger, is physically and emotionally demanding, and the strain is exhausting. Adding to this burden, my other child is being bullied because of his brother's condition. Navigating all these challenges is becoming increasingly difficult. Fariza’s interview also discussed parental burnout, but mostly highlighting family dramas, lack of external support, stating: External support systems can significantly assist a mother of a child with special needs help prevent burnout, navigating various roles. However, my situation lacks these supports. The absence of stable home, and consistent employment, divorce with husband, a lost of contact with my older daughter, combined with the absence of grandparents, who could assist me, only enhances the challenges, and negatively impacts my overall well-being, performance and navigating my life. Parents in this study discussed the stressors in their lives that added to the challenges of parenting their child with CP. Challenges Parents Face Raising a Child with CP- Lack of Medical Guidance and Shortage of Specialists Participants discussed the lack of medical guidance in different stages of development and shortage of specialists (Alla, Fariza, Dana). Dana describes that she relies on other parents’ experiences with a child with CP for information, explaining that doctors often fail to provide complete information or adequately address the child's specific needs. She expresses: We have a WhatsApp group chat for parents of children with CP from across Kazakhstan. I get most of my information and support from this group, especially from more experienced parents. They offer advice on everything from required rehabilitation documents and where to go for services, to alternative therapies. 37 Unfortunately, we've found that doctors are often negligent, even after moving to a different city to find better care. Alla and Fariza gave an insight shedding light on shortage of specialists, recounted their experience, saying ‘There are specialists who have not prepared to work in the position they are employed’ or ‘It is not easy to find good specialists, and we’ve had unpleasant experiences with some of them.’ Challenges Parents Face Raising a Child with CP- Societal Attitude Interview responses identified that many parents experience negative societal attitudes. Alla and Aidyn pointed out on lack of understanding, empathy and awareness about CP. While Alla expresses her experience, stating: For example, in hospitals, parents of special children stand in the same line with normal people, while ordinary people, without any empathy or human respect, start to swear, saying that it’s not their fault that I have a child with special needs. Aidyn highlights the lack of awareness of people in the community about CP, discussing the following: Many people in the street avoid us, point fingers, think that my daughter has a contagious disease. Maybe because people in the rural area know little about it, in contrast, when we went to another country for treatment, people were drawn to her, admiring her beautiful eyes, offering hugs, and genuinely wanting to get to know her. Current Challenges Parents Face Raising a Child with CP- Financial Hardship During the interview parents shared another major challenge that completely influences her parenting, the financial challenge. Guli shared her experience how financial needs influenced her decisions. She is stated: 38 I am very afraid to talk about it, but no matter how terrible it sounds, due to lack of money I was forced to go to work and leave my child alone at home. When I came home, there were days when he ate raw meat from the refrigerator, tore the wallpaper, broke the dishes. In such cases, I tied him with a rope to one place and went to work. Now I leave him with the TV on in one room. I have no other choice, who will financially support us except me. Fariza discussed her experience with financial hardship from different perspective, stating the next: I used to have everything, money, a good job, recognition. But once I had a disabled child, everything started to turn upside down. Twelve years passed, I left my job, since caring for the child did not allow me to work, we sold everything that could be sold for the treatment of my son with cerebral palsy, sometimes there was not even money left for bread. Now I do not work, and financial difficulties mean I cannot afford to take my child to rehabilitation. Areas of Support- Psychological Participants emphasize the need of psychological support for parents, specifically for mothers. Fariza says, “Mothers need psychological assistance for free twice in a month” indicating that it could prevent burnout and stress. Aliya also highlight this need for other parents, as being a psychologist, she is helping many parents for free who addressed her with various issues. Dana shares the same but significantly emphasizing the result of relief after a visit to the psychologist: We really need psychological help, a stranger to whom we can tell all our past, all our difficulties, who will listen to everything, understand, will not judge, but on the contrary will accept and understand. It gives such relief, as if a lump got stuck in 39 the throat and a psychologist helps to get rid of it. Even now, telling you my experience, I feel like I am at a psychologist. Areas of Support- Providing Clear Route After Birth of a Child Alla, Aidyn, and Fariza suggested another crucial area of support for parents: establishing a clear route immediately after a child's birth. Fariza elaborated, stating, ‘Statistics show an increase in the number of children born with CP in Kazakhstan. While parents and doctors are focused on managing the effects,’ she emphasized, ‘we need to address the root causes.’ She suggested that medical personnel should provide comprehensive information, guidelines, and brochures to raise awareness among parents about what steps to take from the first moments after birth. This includes guidance on how to assess their baby's well-being, understand potential warning signs, and know when and where to seek emergency care. Areas of Support- Family and Relative’s Support Family and relative’s support was extensively discussed by Fariza: ‘There should be family and relative’s support for the mother until the child improves’. She highlights that mothers never ask for help, stating: In Kazakhstan, people often donate to charity or perform ritual animal sacrifices. However, it would be far more beneficial to direct these resources to struggling mothers who raise a child with special needs. Furthermore, given that roughly one in three Kazakhstani citizens owns a car, those who have friends or relatives raising children with cerebral palsy should proactively help, such as transportation to rehabilitation appointments, rather than waiting to be asked. Mothers in these situations are often reluctant to ask for help, even from close relatives. 40 The Role of the Government During the interviews, parents shared their perspectives on the government's role in developing and improving services to promote greater inclusion. Overall, they assessed the current state of government support and offered recommendations for supporting inclusive education by providing financial support and ensuring equitable resource allocation for children with CP, particularly those in underserved remote areas and ensuring its sustainable development. Current State of Support In general, most of the parents expressed dissatisfaction with the current level of support. Guli shared her experience: ‘I haven't been able to take my son to rehabilitation since 2017 due to my own health issues, and my request for a state-provided social worker was denied.’ Dana voiced her disappointment with specific individuals working within the system, saying the following: The most difficult thing in raising a child with cerebral palsy is to get the necessary service, material resources, correct instructions, and direction from the state. People who provide social assistance do their job as if they are taking the money out of their own pockets, demonstrating a significant lack of care and professionalism. Other parents (Alla, Aidyn) highlight the importance of the state’s role, however discussed that there is little support from there and try to solve their issues by themselves not addressing their concerns to the government. Alla expresses: State assistance and services have its place, but we do not ask for help, because we have to wait a very long time, and besides, the quality of the service leaves much to be desired. 41 In addition, they noted about the poor wheelchair accessibility and its quality, Aidyn states: The wheelchair provided by the state does not meet our criteria, although we order indicating her diagnosis and additional diseases, these wheelchairs are completely unsuitable. We faced excessively long wait times. On the other hand, Fariza and Aliya expressed that they are not eager to complain about the government’s current state of support, but despite all the difficulties they ask parents to be active. Aliya states: I always ask for what I really need from the state, ... and I think parents should actively communicate their needs to the relevant authorities and negotiate, because the state can't always know what exactly is needed. Recommendations for Improvement- Social Worker Guli and Fariza highlight the need of the assistance of a social worker who could come and help in daily care of their child with CP. Fariza says “I treat my child the same way I treat a baby every day. But it’s getting harder and harder … I’m getting weaker. I even can’t take him to rehabilitation. I need a social worker, who can assist with child's physical needs, emotional, social, and developmental aspects.” Additionally, Guli described needing a social worker when traveling for professional development opportunities: I need a social worker. Sometimes I have to go to another city for work. When I do, I hire someone to care for my son at my own expense. It's quite expensive. Also, twice a week I hire assistants to bathe my son. In addition, Fariza hopes that the social worker could support a child in development and learning, discussing the next: 42 Of course, … I just need a help of the social worker who would visit my child twice a week to come, read books to him and work on his motor skills, even if only a little. Recommendations for Improvement- Financial From the interview responses the parents suggested the government to increase the financial aid for parents raising a child with CP. On the one hand, Guli discussed, ‘I receive my son's disability benefits on time, they even increased the amount a little.’. However, Aidyn states: ‘The money we got now does not even cover my daughter’s medical expenses.’ Additionally, as Aidyn does research on new apps that could help her daughter to develop and learn she mentions the following: In Russia, a modern device called Eye Tracking has been released, but it is expensive, it costs two million tenge. If such a new device were available in our country and at an affordable price by the state, then we, parents, would have more hope for the future. Recommendations for Improvement- Forums on How to Develop Children with Different Types of CP Fariza made a strong request for the government to organize forums on how to support the development and learning of children with various types of CP. She contrasted this with the numerous forums currently organized by governmental and non- governmental organizations that focus on autism spectrum disorder (ASD), saying the following: Cerebral palsy presents in various forms, each requiring different developmental approaches. Many parents are unaware of these distinctions and simply follow advice that worked for other parents. It would be incredibly beneficial if the state organized forums for parents, providing information on working with specific types 43 of cerebral palsy. These forums could offer guidance on which specialists to consult, how to find qualified professionals. Essentially, parents need access to comprehensive information on the development and education of children with cerebral palsy. Summary This chapter presen