Background: To deliver implementable, meaningful research and advance knowledge, different stakeholders need to be brought together regularly via a suitable platform or community of practice. The Liverpool Dementia & Ageing Research Forum, set up in 2019, is a public/professional community of practice, providing in-person and remote events and activities to connect people living with dementia, unpaid carers, health and social care professionals, Third Sector representatives and commissioners. The aim of this study was to qualitatively explore the experiences and impacts of engaging with Forum events by different stakeholders.
Methods: Attendees of any Forum events were eligible to take part. We conducted remote semi-structured interviews about the experiences and impacts of engaging with the Forum between November 2023 and April 2024. Anonymised transcripts were coded by three research team members, including a trained public advisor (unpaid carer), using inductive thematic analysis.
Results: Seventeen attendees participated in the study. These included people living with dementia, unpaid carers, Third Sector representatives, academics and health and social care providers. Four overarching themes were identified in the data: facilitated networking within and outside of personal expertise, improved knowledge and capacity, empowerment by having one's voice heard and diversity in stakeholders but not the background. The Forum events were utilised on a drop- in and -out basis for most attendees, often picking events that were of immediate interest to them, whilst some attended almost all events. Engaging with the Forum was found to strongly facilitate increased networking and building relationships, especially outside of stakeholder background, whilst diversity in backgrounds of attendees, such as ethnic diversity, was lacking.
Conclusions: This Community of Practice has successfully brought together diverse stakeholders to network and expand their relationships, and increased knowledge and capacity in different stakeholder groups. Whilst the Forum was considered inclusive, future outreach work needs to ensure that greater diversity in backgrounds and personal experiences is reflected in attendees, and that a continuous flow of new attendees joins.
Patient And Public Involvement: One unpaid carer was involved as a public advisor and was supported in coding two anonymised transcripts and interpreting the findings. They also helped codesign the semi-structured topic guide.
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http://dx.doi.org/10.1111/hex.70154 | DOI Listing |
BMC Health Serv Res
January 2025
Department of Epidemiology, Erasmus MC - University Medical Center Rotterdam, PO Box 2040, Rotterdam, 3000 CA, The Netherlands.
BMJ Open Ophthalmol
January 2025
Department of Optometry, College of Medicine and Health Sciences, University of Gondar, Gondar, Ethiopia
Objective: This study intended to assess willingness to donate eyes and associated factors among adults in Addis Ababa City, Ethiopia.
Methods And Analysis: This study used a triangulated phenomenological mixed-methods design, involving 1293 adults and eight key informants selected through multistage and purposive sampling. Data collection involved a pretested, semistructured questionnaire for quantitative data and an open-ended guiding questionnaire for qualitative insights.
Intellect Dev Disabil
February 2025
Victoria Sánchez-Gómez, Institute for Community Inclusion (INICO), University of Salamanca, Spain, Antonio M. Amor González, INICO, University of Salamanca, Spain, Laura Zampini, University of Milano-Bicocca, Italy, Miguel Ángel Verdugo, INICO, University of Salamanca, Spain, María Isabel Calvo, INICO, University of Salamanca, Spain.
Narrative abilities are essential for school achievement and quality of life, yet children with Down syndrome (DS) often struggle with these skills. This work explores the oral narrative abilities of school-age Chilean children with DS. The participants were 11 children with DS aged between 7;2 and 12;1 (years; months).
View Article and Find Full Text PDFESMO Open
January 2025
Evaluative Epidemiology Unit, Department of Epidemiology and Data Science, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
Health networking is in principle a formidable instrument to address many challenges posed by cancer, one of the two most common and most lethal non-communicable chronic diseases. The European Union (EU)'s Beating Cancer Plan foresaw the addition of new health networks to the four already existing European Reference Networks on rare cancers: the Network of Comprehensive Cancer Centres and several networks of expertise (NoEs), which will be shortly deployed on items as complex and poor-prognosis cancers, palliative care, survivorship, personalised primary and secondary prevention, omic technologies, hi-tech medical resources, and cancers in adolescents and young adults. The community of experts of the EU Joint Action, due to build such NoEs, has drafted this 'green paper', incorporating 13 open questions, in an effort to foster discussion on some open questions about health networking on cancer in the EU.
View Article and Find Full Text PDFEur J Oncol Nurs
January 2025
College of Nursing, Hanyang University, 222, Wangsimni-ro, Seongdong-gu, 04763, Seoul, Republic of Korea. Electronic address:
Purpose: Body acceptance in women with breast cancer is a crucial factor related to their physical, psychological health, and quality of life. However, research on the factors influencing body acceptance in this population is lacking. This study aims to identify these factors to provide insights for developing tailored interventions.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!