All face-to-face studies were affected by the COVID-19 pandemic, as they could not be run in person due to rules and guidance linked to social distancing which were in force during the outbreak. Finding and testing an available COVID-secure approach for both participants and researchers was important as was the need to continue conducting such studies during this critical time. At present, the extant literature indicates a clear gap in research that elucidates how to carry out a Q methodology study online, step by step. This paper describes an option for online Q methodology using an approach that simulates all of the steps performed in a face-to-face setting using an open-source software known as Easy-HtmlQ. Using a case study in telemedicine adoption as illustration, this paper also considers the perspective of both research participants and Q methodology researchers via semi-structured interviews. Using Easy-HtmlQ V1.1 in online Q methodology studies appears to be an affordable, practical and user-friendly solution. Some of the benefits associated with running Q methodology studies online were the decreased costs, enabling the recruitment of wider number of participants, providing a COVID-19-secure environment and offering convenience to both participants and researchers during the research process. The findings of this study may contribute to increasing the number of online Q methodology studies in the future, as it has succeeded in offering a feasible approach for Q methodology researchers.
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http://dx.doi.org/10.3390/healthcare9111491 | DOI Listing |
Background: Availability of amyloid modifying therapies will dramatically increase the need for disclosure of Alzheimer's disease (AD) related genetic and/or biomarker test results. The 21st Century Cares Act requires the immediate return of most medical test results, including AD biomarkers. A shortage of genetic counselors and dementia specialists already exists, thus driving the need for scalable methods to responsibly communicate test results.
View Article and Find Full Text PDFBackground: It is essential that both drug and lifestyle-based interventions aimed at delaying the functional decline in conditions like Alzheimer's disease and related dementias (ADRDs) capture change in functioning that incorporates the person's voice. Such brain health priorities can vary across populations and it is unclear to what degree findings from the ePSOM program in the UK might apply to the US.
Methods: We conducted an online nationwide study to understand what matters to people aged 50 and older about their brain health in the US.
Alzheimers Dement
December 2024
CIUSSS du Centre-Ouest-de-l'île-de-Montréal, Montreal, QC, Canada.
Background: Long-term care (LTC) residents are a previously untested and highly vulnerable population at risk of elder abuse (EA) and its many negative health outcomes. The detection of elder abuse within the LTC context is urgent and time-sensitive.
Objective: The overarching aim of this study is to evaluate the feasibility of implementing the Elder Abuse Suspicion Index - long-term care (EASI-ltc): the first comprehensive detection tool of its kind designed specifically to identify the abuse of cognitively-apt persons living in LTC.
Alzheimers Dement
December 2024
University of Utah School of Medicine, Salt Lake City, UT, USA.
Background: The scarcity of resources and caregiving services, a higher prevalence of health conditions, and financial concerns in rural areas in the United States have been well-documented. However, less research has compared experiences between caregivers of people with Alzheimer's disease and related dementias (ADRD) in rural versus urban areas. This study sought to address this gap by identifying those unmet service needs, explore factors associated with service use, and propose tailored strategies for better serving the needs of both rural and urban caregivers.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Department of Clinical, Educational, and Health Psychology, Division of Psychology and Language Sciences, University College London, London, United Kingdom.
Background: Familial frontotemporal dementia is an autosomal dominant heritable form of frontotemporal dementia, a form of dementia characterised by changes in personality, behaviour and communication which typically onsets in mid-life. Children of an affected parent are at 50% risk of inheriting the responsible genetic mutation and developing frontotemporal dementia themselves. Individuals living at-risk have high psychological morbidity, for example they report struggling with guilt and anxiety about risk to themselves and their children, decisions about whether to get tested, uncertainty about onset of symptoms, and see their risk as a barrier in life.
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