Health literacy in adolescents and young adults with cerebral palsy: a mixed methods systematic review

Abstract

Purpose: To identify evidence of health literacy in young people with cerebral palsy (13-38 years), describe current strategies they use to access and build their health knowledge, and explore associations between health literacy and quality of life (QoL).

Methods: Four electronic databases were systematically searched (2001 to June 2023) to identify studies describing components of health literacy in this population. Two reviewers screened for eligibility, then extracted data and assessed methodological quality of included studies. Data were synthesised using a convergent integrated analysis framework and summarised with a narrative synthesis.

Results: Eleven studies were included (N = 363). Evidence of health literacy was demonstrated through a range of strategies young people employed to identify their specific information needs, develop health literacy skills, and learn experientially. The preferred method for building health knowledge was obtaining information from trusted sources. Information gaps were identified in topics such as ageing with cerebral palsy, sexuality and navigating intimate relationships. There were minimal data on health literacy and QoL.

Conclusions: Young people with cerebral palsy want tailored and credible health information to increase participation in making informed health-related decisions. Building capacity and development of self-efficacy may assist with the identification of emerging health literacy needs.

Keywords: Cerebral palsy; health literacy; self-management; transition to adulthood; young adults.