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

PurposeTo 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).MethodsFour 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.ResultsEleven 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.ConclusionsYoung 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. Despite health literacy being a key indicator of quality chronic disease self-management for people with disabilities, outcomes are infrequently measured in young people with cerebral palsy.Capacity building, development of identity and self-management skills were identified as important components of health literacy in young people with cerebral palsy.Topic areas of unmet health information include relationship management, sexual health and how to navigate the bodily changes associated with ageing with cerebral palsy.Providing adolescents with cerebral palsy earlier opportunities to build health literacy may facilitate increased autonomy in healthcare decision making during the transition to adulthood.