Parental Experiences and Factors Influencing Access to Education and Rehabilitation Services for Children with Intellectual and Developmental Disabilities in Punjab, Pakistan: A Sequential Exploratory Mixed-Methods Study

Abstract

Background: Children with intellectual and developmental disabilities (IDDs) require sustained access to appropriate education and rehabilitation services to support their development, participation, and quality of life. However, families in low- and middle-income settings, including Punjab, Pakistan, often experience complex and interconnected barriers that limit their ability to obtain and maintain necessary support. This study aimed to explore parents’ experiences of accessing education and rehabilitation services, develop a contextually grounded measurement tool, and examine the underlying dimensions and relative prominence of access barriers.

Methods: A sequential exploratory mixed-methods design was employed. In the qualitative phase, 17 parents and primary caregivers of children with IDDs were purposively recruited and interviewed using semi-structured interviews. Data were analyzed through reflexive thematic analysis. Findings from the qualitative phase guided the development of a 33-item questionnaire, which underwent expert evaluation, translation, and pilot testing with 30 parents. In the quantitative phase, the questionnaire was administered to 210 parents and primary caregivers recruited from 11 districts across five divisions of Punjab, Pakistan. Quantitative data were analyzed using descriptive statistics and exploratory factor analysis (EFA).

Results: Qualitative analysis generated five themes: navigating a fragmented service pathway; financial and geographical barriers; availability and quality of education and rehabilitation services; social and family influences; and parental advocacy, facilitators, and unmet needs. The developed questionnaire demonstrated strong pilot reliability (Cronbach’s α = .894). Exploratory factor analysis using principal axis factoring with Promax rotation supported a five-factor structure, including service navigation and coordination, financial and geographical barriers, availability and quality of services, social and family barriers, and system responsiveness and unmet service needs. The data demonstrated suitability for factor analysis (KMO = .89; Bartlett’s test of sphericity: χ² = 4268.54, df = 528, p < .001). The five-factor solution explained 62.4% of total variance, and the overall scale demonstrated excellent internal consistency (Cronbach’s α = .91). Financial and geographical barriers represented the highest-rated domain (M = 4.09), followed by system responsiveness and unmet service needs (M = 4.08), service navigation and coordination (M = 3.99), availability and quality of services (M = 3.98), and social and family barriers (M = 3.53).

Conclusion: Access to education and rehabilitation services for children with IDDs in Punjab is a multidimensional challenge influenced by affordability, geographical accessibility, service availability, professional capacity, coordination mechanisms, and system responsiveness. Addressing these barriers requires strengthening district-level services, expanding trained professional capacity, improving referral and coordination systems, providing financial support, and adopting family-centered approaches to ensure equitable and sustainable access for children with IDDs and their families.