Search

Background: Autistic people are more likely to experience stigma, communication barriers and anxiety during healthcare. Autism Health Passports (AHPs) are a communication tool that aim to provide information about healthcare needs in a standardised way. They are recommended in research and policy to improve healthcare quality., Aim: To explore views and experiences of AHPs among Autistic people from the UK who have been pregnant., Methods: We developed an online survey using a combination of open and closed questions focused on healthcare impairments and views and experiences of AHPs. Data were anlaysed using descriptive statistics, Kruskal-Wallis tests, and content analysis., Findings: Of 193 Autistic respondents (54% diagnosed, 22% undergoing diagnosis and 24% self-identifying), over 80% reported anxiety and masking during healthcare always or most of the time. Some significant differences were identified in healthcare (in)accessibility by diagnostic status. Only 4% of participants knew a lot about AHPs, with 1.5% of participants using one at least half of the time. Almost three quarters of respondents had not previously seen an AHP. Open text responses indicated that the biggest barrier to using an AHP was a belief that health professionals would discriminate against Autistic patients. Additional barriers included staff lack of familiarity with AHPs and respondents expecting a negative response to producing an AHP., Conclusions: Our findings suggest that AHPs are not reducing health inequalities for Autistic adults who have been pregnant. Alternative solutions are needed to reduce health inequalities for Autistic people., Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: AG is a non-executive Director of Disability Wales. SS is the research lead for Autistic Doctors International, a peer support and advocacy group which is not a legal entity. KW is a non-executive director for Autistic UK a Community Interest Company. This does not alter our adherence to PLOS ONE policies on sharing data and materials. None of the three individuals receive a salary for these affiliations. The organisations did not have any role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The remaining authors declare no competing interests., (Copyright: © 2024 Grant et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Managing medications for Alzheimer's disease and related dementias is challenging for caregivers. Information about caregivers' strategies to manage these challenges is needed to inform intervention development. Objective: This study aimed to understand caregivers' medication management experiences by analyzing online community discussions. Methods: Posts were extracted from the ALZConnected® Forum using keywords "medication" and "drug" via web scraping. The researchers applied thematic analysis. Results: Four major themes emerged: (1) role transition of medication management responsibilities, (2) caregivers' uncertainty about medication purpose and values, (3) conflicts between the care recipients and caregivers, and (4) difficulty accessing and affording medications. Conclusions: The experiences shared on a non-moderated, unstructured online forum indicate that medication management is challenging and overwhelming for caregivers of people living with Alzheimer's disease and related dementias. Since this is a progressive disease with various stages and changing needs, caregivers' strategies vary and are often limited by available resources and support. Health care providers should offer training and support for caregivers to navigate the transfer of medication management responsibilities and changing care needs as the disease progresses. [ABSTRACT FROM AUTHOR]

Introduction: Little is known about COVID-19 impact on patient medication management. Research Question: The aim was to describe medication management, healthcare team interactions, and adherence during the COVID-19 pandemic in kidney transplant patients and those on the kidney transplant wait list. Design: Using a descriptive, correlational design 340 adults from a midwestern US transplant program were recruited. The Managing Medications in the Midst of a Pandemic Survey measured healthcare team encounters and medication management. The Basel assessment of adherence to medications scale measured medication adherence. Results: The response rate was 35% (119/340). During the pandemic, 88% had practiced/were currently practicing socially distancing, 85% had worn/were currently wearing a face mask in public, 18% had been/were currently diagnosed with COVID-19 and 82% received the vaccine. Medication management: 76% planned and organized their own medications. Healthcare team interactions: 89% met in the office, 20% via phone, 12% telehealth, and 13% delayed seeing a healthcare provider because of COVID-19 concerns. Pharmacy interactions: 11% changed their method of obtaining medications from pharmacy due to social distancing. Medication adherence implementation was problematic with 19% missing a dose; results from the binary logistic regression suggested that those with higher levels of education were more likely to report missing a dose. Conclusions: Patients acted to prevent COVID-19 but some still contracted the virus. The pandemic changed healthcare team medication management interactions. Adherence implementation problems were nearly 20%. Findings are relevant to the transplant healthcare team to understand the impact of a pandemic on patient/team interactions and medication adherence. [ABSTRACT FROM AUTHOR]

Background: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. Findings: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. Conclusion: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes. [ABSTRACT FROM AUTHOR]

Autism health passports (AHPs) have been endorsed by the UK government and recommended by the National Institute for Health and Care Excellence, but are they working in practice? As autistic researchers, we want to share what we have discovered. [ABSTRACT FROM AUTHOR]