Participation experiences of young people with cerebral palsy in key life situations: A qualitative study.

AIMS: To explore the participation experiences of adolescents and young adults with cerebral palsy (CP) in key life situations of young adulthood and investigate the impact of a government-funded, disability insurance scheme on participation and health service access. METHOD: We conducted a qualitative descriptive study using semi-structured interviews. Sixteen young people with CP (aged 16-30 years; mean age = 24 years 4 months) participated. Interviews were audio-recorded and transcribed verbatim before thematic analysis. RESULTS: An overarching theme of 'branching out into adulthood' was identified. Participants described early adulthood as a time of change, choice, and challenge. The sub-themes were: (1) making sense of my CP as an adult; (2) people's attitudes towards disability and the impacts on me; (3) roadblocks and workarounds; and (4) participation at the time of the COVID-19 pandemic. Participants reported complex views on the new disability insurance scheme. While access to services and support increased, participants experienced significant difficulty negotiating appropriate funding, resulting in frustration and reduced confidence in the scheme. INTERPRETATION: Young people with CP experience complexity as they participate during young adulthood. Alongside exploring how their identity is intertwined with having CP, they face significant barriers to participation when navigating relationships, accessing services, and being involved in the community.

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

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.

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.

Requesting early removal of long-acting reversible contraception: a qualitative study exploring the experiences of doctors working in primary care.

Long-acting reversible contraceptives (LARC) are the most effective contraceptive methods available in Australia and are effective for between 3 and 8 years. Early LARC removal (<12 months of use) can lead to gaps in contraceptive cover, exposing women to the risk of unplanned pregnancy. This study explored the experiences of doctors working in primary care (GPs and sexual health physicians) when asked to remove LARC earlier than expected. From May to July 2020, 13 doctors in Melbourne, Australia, were interviewed. Overall, participants felt conflicted about early LARC removal requests; participants highlighted the importance of respecting patient autonomy, but many felt that patients should ideally persist with LARC longer. Participants found balancing a desire to respect patients' autonomy with their clinical responsibility challenging. Doctors used reassurance, delaying tactics and treatment of side effects to try and prolong LARC use. However, this balancing act led many doctors to perceive a tension between themselves and their patients when early LARC removal was requested. Incorporating professional education addressing these issues may help primary care providers better anticipate and navigate the tension surrounding early LARC removal consultations and maintain effective doctor-patient relationships.

Human noise blindness drives suboptimal cognitive inference.

Humans typically make near-optimal sensorimotor judgements but show systematic biases when making more cognitive judgements. Here we test the hypothesis that, while humans are sensitive to the noise present during early sensory encoding, the "optimality gap" arises because they are blind to noise introduced by later cognitive integration of variable or discordant pieces of information. In six psychophysical experiments, human observers judged the average orientation of an array of contrast gratings. We varied the stimulus contrast (encoding noise) and orientation variability (integration noise) of the array. Participants adapted near-optimally to changes in encoding noise, but, under increased integration noise, displayed a range of suboptimal behaviours: they ignored stimulus base rates, reported excessive confidence in their choices, and refrained from opting out of objectively difficult trials. These overconfident behaviours were captured by a Bayesian model blind to integration noise. Our study provides a computationally grounded explanation of human suboptimal cognitive inference.

Revealing hidden states in visual working memory using electroencephalography.

It is often assumed that information in visual working memory (vWM) is maintained via persistent activity. However, recent evidence indicates that information in vWM could be maintained in an effectively "activity-silent" neural state. Silent vWM is consistent with recent cognitive and neural models, but poses an important experimental problem: how can we study these silent states using conventional measures of brain activity? We propose a novel approach that is analogous to echolocation: using a high-contrast visual stimulus, it may be possible to drive brain activity during vWM maintenance and measure the vWM-dependent impulse response. We recorded electroencephalography (EEG) while participants performed a vWM task in which a randomly oriented grating was remembered. Crucially, a high-contrast, task-irrelevant stimulus was shown in the maintenance period in half of the trials. The electrophysiological response from posterior channels was used to decode the orientations of the gratings. While orientations could be decoded during and shortly after stimulus presentation, decoding accuracy dropped back close to baseline in the delay. However, the visual evoked response from the task-irrelevant stimulus resulted in a clear re-emergence in decodability. This result provides important proof-of-concept for a promising and relatively simple approach to decode "activity-silent" vWM content using non-invasive EEG.