Applying adaptive research methods to explore health literacy in young people with intellectual disability

Young people with intellectual disability experience higher risks for chronic health conditions than their peers. Improving their health literacy could be a strengths-based approach for reducing these risks. However, there is limited research that explores the perspectives of young people with intellectual disability on their health literacy. Given the limited research centring on the voice of young people with intellectual disability, this study examined their health literacy from their own perspectives. We had two aims: (i) explore the health literacy skills and needs of young people with intellectual disability and (ii) apply an adaptive interviewing approach and describe insights about its effectiveness. The adaptive interviewing method included visual materials and communication partners as needed. Sixteen young people with intellectual disability aged between 12 and 22 years who communicated with words or nonverbally were interviewed online. Data was coded using directed content analysis following the framework of the Health Literacy Questionnaire. The findings showed variation in the participants' health literacy skills regarding relationships with healthcare professionals, managing health, and understanding health information. The results suggest that the health literacy skills of young people with intellectual disability are diverse, with different support needs. Targeted health promotion strategies are needed to meet these diverse needs. The adaptive interviewing was successful in capturing young people's perspectives. With further refinements, including use of in-person and repeat interviews, this approach can be further utilized to enhance the accessibility of research.