Caregiver and provider perspectives on primary care access for adolescents with intellectual disability in Kelantan, Malaysia: a qualitative study

Adolescents with intellectual disability (ID) often face challenges in accessing essential healthcare services, yet this issue remains understudied. This study explores the accessibility of primary care for this population using Levesque’s framework. A qualitative descriptive design was employed, using in-depth interviews among purposely-sampled caregivers, community-based rehabilitation (CBR) staff, primary healthcare providers and experts in intellectual disability services. Deductive coding was applied, and the data were analysed using Framework Analysis. The study involved 26 participants, comprising eight mothers of adolescents with intellectual disability, four CBR staff, ten primary care providers and four experts in intellectual disability services. Gaps were identified across all five service-side dimensions of Levesque’s framework: approachability, acceptability, availability and accommodation, affordability, and appropriateness. Approachability was affected by limitations in preventive programmes and perceived difficulties in understanding health information. Acceptability was shaped by healthcare providers’ perceptions of parental acceptance, personal beliefs, and trust-related concerns. Availability and accommodation were constrained by inadequate disability-inclusive or accessible facilities, lack of specialized services, inconvenient scheduling, and transport barriers. Affordability challenges stemmed from direct and indirect treatment costs. Appropriateness was affected by healthcare providers’ attitudes, communication barriers, insufficient care planning, and limited training on intellectual disability. Caregivers and professionals identified interacting service, communication, practical, and care-coordination barriers to primary care access for adolescents with intellectual disability in Kelantan. These findings may inform the development and future evaluation of more accessible, responsive, and coordinated primary care services for this population.