The topic of parenting a child with Down syndrome (DS) has not received much attention from scholars in Kazakhstan, where understanding of the needs, support systems, and lived experiences of these families remains minimal. To address this gap, this qualitative phenomenological study examines the lived experiences of parents, with a focus on the educational paths of their children and the barriers encountered along the way. 

This study, derived from Master's research conducted from fall 2023 to spring 2024, was guided by the main research question: “What are the lived experiences of parents of children with Down syndrome as they relate to education related endeavors?” There were three sub questions:

1) As parents of children with DS, what is their role in the educational journey of their
children?
2) As parents of children with DS, what are the main challenges they face in rearing
and supporting the education pursuits of their children?
3) As parents of children with DS, what areas of improvement do they suggest?

The study draws on data from interviews with eight parents of children with DS from various regions of Kazakhstan, guided by the Conceptual Model of Family Factors Relating to the Early Development of Children with Down syndrome (Van Hooste and Maes 2003). The model emphasizes the central role of parent-child interactions, positing that the quality of these interactions defines the developmental outcomes of children with Down syndrome. Various factors can influence these interactions, including family characteristics (e.g., parental attitudes and expectations, stimulating environments), available support resources (e.g., social support networks, early intervention services), and stressors (e.g., information needs, provision of support services known as resource needs, interpersonal and family distress, and confidence threats). The present study focuses on formal support systems, such as early intervention services and educational settings, and explores the associated stressors.

Although situated in Kazakhstan, the findings speak to broader concept of inclusive education, offering insights that are transferable to other contexts where families similarly navigate gaps between policy and practice.

The research used a philosophical approach within interpretivist epistemology, employing phenomenology as its methodological framework. Eight mothers were selected for the study through a snowball sampling strategy. Subsequent participants were recruited through the personal connections of this initial family, parent support groups on social media and word of mouth. Informed by the conceptual framework guiding the study, a semi-structured interview protocol was designed to investigate parents' experiences regarding their child's development and educational experiences. Parents were also asked to elaborate on their support needs. Overall, the interviews comprised a total of 14 questions, and lasted from 30 to 90 minutes. Except for one, all semi-structured interviews were conducted via audio chat platforms such as Zoom or WhatsApp Call. Interviews were audiotaped with participant consent. The first step in data analysis involved verbatim transcription of the interviews, followed by translation from Russian to English. To establish a codebook, two interviews were randomly selected and analyzed using Saldana’s (2013) two-cycle coding method. Each participant and their children were assigned pseudonyms for confidentiality. After completing the coding process for all interviews, similar data were grouped into categories and subcategories. This process resulted in the identification of six overarching themes aligned with the categories of the conceptual framework, which for the purpose of current study were condensed to two: parental challenges and support needs.

Guided by Van Hooste and Maes’ (2003) conceptual framework, this study examined family factors influencing the development of children with Down syndrome in Kazakhstan, focusing on parental expectations, social support, early intervention (EI), and educational experiences. All core components of the framework were reflected in parental interviews; however, most were described through challenging lived experiences. Social support emerged as the most consistently positive factor, with mothers highlighting the importance of extended family and peer networks of other parents of children with Down syndrome in coping with stress and sustaining resilience, consistent with prior research (Pillay et al., 2012). Mothers described their daily lives as shaped by continuous advocacy. Participants reported persistent efforts to secure access to services, appropriate school placements, and respectful interactions with professionals, often in response to exclusionary practices and stigmatizing attitudes within community and institutional settings. These findings align with research identifying institutional barriers as major contributors to family stress (Ocasio-Stoutenburg, 2020). Significant gaps were identified in state-provided EI services, including long waiting periods, limited availability of qualified specialists, and insufficient guidance for parents. Such barriers undermine the effectiveness of EI, which should be timely, individualized, and family centered (Van Hooste & Maes, 2003). Consequently, many families sought private services, creating financial strain and continued difficulty in locating competent providers. Parents emphasized that limited support for home-based language development further increased developmental risks (Buckley & Le Prevost, 2002). Despite strong parental commitment to fostering positive developmental environments, cumulative systemic stressors contributed to what Van Hooste and Maes (2003) describe as “confidence threat,” undermining parental self-efficacy. Overall, findings suggest that difficulties experienced by families stem primarily from institutional and societal barriers rather than from Down syndrome itself, highlighting the need for family-centered, strength-based practices and systemic reform in early intervention and education services.

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