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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]

Participatory research approaches hold potential to better understand society through valuing lived experience. Formula feeding babies is routinely stigmatised in the UK, despite inadequate support to facilitate breastfeeding. Our community science project investigated the safety of powdered infant formula preparation in the home through the completion of an at-home experiment and a research diary with closed and open questions (n = 151). To add validity to the interpretation of open text data in research diaries, a community analysis group of five formula-feeding mothers was established. The community analysts undertook inductive thematic analysis through a series of analysis group meetings focused around data extracts, contributed to the study's empirical outputs and this methodological output, meeting 23 times over a nine-month period. Detailed notes were taken during meetings and the methodological elements of these were thematically analysed with the community analysts to produce this article, with extracts from the academic researchers' field notes added where relevant. The overarching themes, presenting both positive experiences and areas for improvement, focused on: (i) clarity of expectations and the impact this had on community analysts' confidence, (ii) the stigmatising topic area and how this was managed by the facilitators, and (iii) feeling valued, in relation to honoraria, inclusion in outputs and community analysts coming to recognise their own expertise. Furthermore, the community analysts co-produced recommendations for including community analysts in future research. It provides guidance on how this can be appropriately costed for and supported by funding bodies and research teams, as well as providing guidance on recruitment and chairing meetings. We hope that this article can provide valuable input into how to involve the community more inclusively as research partners in qualitative analysis related to stigmatised topics. [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]

This study reports the development and psychometric testing of the Kidney Transplant Self-Management Scale (KT-SMS). The instrument development phase included the following: (a) conceptual definition, item generation, and framework; (b) face validity assessment; and (c) content validity assessment. The psychometric testing phase included the following: (a) construct validity testing; (b) internal consistency reliability testing; (c) convergent validity testing; and (d) predictive power of the KT-SMS using a cross-sectional sample of kidney transplant recipients (N = 153). Factor analysis results supported the 16-item KT-SMS as multidimensional with five domains (medication adherence, cardiovascular risk reduction, protecting kidney, ownership, and skin cancer prevention). Internal consistency reliability for the total scale and five subscales was adequate. Convergent validity was supported as the intercorrelations of the KT-SMS total score with the five subscales were significant. The KT-SMS total score and five subscales were significantly correlated with self-efficacy for managing chronic disease, patient activation, and health-related quality of life. [ABSTRACT FROM AUTHOR]

This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings – involving four Autistic community leader members and three Autistic researchers – was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member ‘field’ notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other’s sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights. [ABSTRACT FROM AUTHOR]

There is a need for a psychometrically-informed model identifying attitudinal and social factors explaining adherence to oral endocrine therapy (OET) for women with hormone receptor positive breast cancer. This study tested a model with variables selected by stringent psychometric criteria, including attitudes about benefit and burden, patient-practitioner alliance and confusion, and positive and negative interpersonal interactions. Self-report scales were completed by 150 current or past OET users. Fourteen correlations and six mediated pathways implied by the model were tested. All hypothesized associations were significant. This preliminary study suggests the model is a valuable framework for OET adherence research and intervention. [ABSTRACT FROM AUTHOR]