Developing a Healthy Puberty Model for Adolescents with Intellectual Disabilities: A Qualitative Study Using the PRECEDE Framework

Adolescents with intellectual disabilities have greater challenges during puberty. These stem from cognitive limitations, poor access to disability-responsive reproductive health education, and cultural taboos around sexuality. Most studies only address one aspect at a time. Few use integrated, systematic frameworks-especially in low- and middle-income settings. This study explored the experiences, knowledge, and contextual factors related to healthy puberty for adolescents with mild and moderate intellectual disabilities. The findings aim to develop a contextualized conceptual model to guide intervention and policy.

This phase employed an interpretive qualitative design in Batam City, Indonesia. A total of 19 informants were purposively selected, comprising adolescents with intellectual disabilities, parents/caregivers, health-sector stakeholders, and community health providers. Data were collected in 2024 through semi-structured, in-depth interviews, observations, and document reviews. Interview data were analyzed using Miles and Huberman’s approach. The analysis followed the PRECEDE framework to examine multi-level determinants of healthy puberty.

Adolescent understanding of puberty was fragmented and mainly experiential. Predisposing factors included poor reproductive health knowledge, myths, cultural taboos, and cognitive limitations. Enabling factors included access to practical self-care training, visual and repetitive learning materials, reproductive health information, and disability-responsive health services. However, these resources remained limited, inconsistently available, and insufficiently coordinated across home, school, and healthcare settings. Parental communication, school-based assistance, family norms, home-school collaboration, and the involvement of health workers served as reinforcing factors. Nevertheless, their effectiveness was constrained by limited confidence, inadequate guidance, and insufficient resources.

Adolescents with intellectual disabilities experience puberty with a fragmented, experience-based understanding due to limited structured education and sociocultural constraints. The PRECEDE framework highlights how predisposing, enabling, and reinforcing factors interact to shape preparedness and self-care. Gaps in parental capacity, school guidance, and disability-responsive health services further limit effective support. These findings emphasize the need for integrated, multi-level interventions across family, education, and health systems.

These determinants shaped a PRECEDE-based model. This model shows how multi-level factors impact preparedness, self-care competence, and safety during puberty. This study delivers a multi-informant qualitative analysis in an urban Indonesian setting. It introduces a PRECEDE-informed model to strengthen disability-responsive puberty education and reproductive health interventions in low- and middle-income areas.