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"I forgot she used to make chocolate cake": Digital storytelling supporting person-focussed dementia care: A qualitative thematic analysis.
Dementia (London)
January 2025
Centre for Ageing Research and Translation, Faculty of Health, University of Canberra, Bruce, ACT, Australia.
Reminiscence is a meaningful activity for people with dementia, but research implementing digital reminiscence tools into environments with older people is not well developed. This project sought to understand the effectiveness of a digital reminiscence tool in aiding person-centred dementia care with people attending a day respite centre and a group residential home, in metropolitan eastern Australia. This study used semi-structured interviews and ethnographic observations using a qualitative reflexive thematic analysis with seventeen participants including people with dementia ( = 8), their loved ones ( = 5) and staff = 4) Themes identified were: 1.
View Article and Find Full Text PDFDesign of and Early Insights From a Generalized Myasthenia Gravis Patient Engagement Research Council.
Health Sci Rep
December 2024
Janssen Scientific Affairs, LLC Titusville New Jersey USA.
Background And Aims: An exploratory focus group study was conducted to better understand the needs of patients living with generalized myasthenia gravis (gMG).
Methods: US-based adults with gMG and caregivers of patients with gMG participated in a Patient Engagement Research Council between August 2022 and January 2023. The study consisted of a 15-min prework survey, followed by virtual focus groups facilitated using a semi-structured interview guide.
Dietitians as innovators: a deductive-inductive qualitative analysis.
BMC Health Serv Res
December 2024
University of Prince Edward Island Integrated Dietetic Internship Program, 550 University Ave, Charlottetown, PE, C1A 4N3, Canada.
Background: Frontline health professionals are well-placed to develop and implement beneficial innovations. Evidence supports the clinical and financial benefits of Registered Dietitian (RD)-led improvement initiatives, but we know little about how RDs perceive of innovation or of themselves as innovators. The objectives of the study were to gain an understanding of: 1) how RDs define innovation; 2) who RDs perceive as innovative; 3) whether RDs feel prepared to innovate, and; 4) to what extent work context impacts RDs' capacity to innovate at work.
View Article and Find Full Text PDFOffering reproductive genetic carrier screening for cystic fibrosis, spinal muscular atrophy and fragile X syndrome: Views of Victorian general practitioners.
Aust J Gen Pract
December 2024
PhD, GDipGenetCouns, Honorary Principal Fellow, Department of Paediatrics, University of Melbourne, Melbourne, Vic; Associate Professor, Head of Service Development, Reproductive Genetics and Group Leader @ Reproductive Genetic Counselling, Victorian Clinical Genetics Services, Murdoch Children@s Research Institute, Melbourne, Vic
Background And Objectives: The Royal Australian College of General Practice recommends that all women contemplating pregnancy or in early pregnancy should be offered reproductive genetic carrier screening (RGCS). In November 2023, a new Medicare item number was introduced for RGCS to detect cystic fibrosis (CF), spinal muscular atrophy (SMA) and fragile X syndrome (FXS) carrier status. The role of general practice in offering RGCS is recognised as being of crucial importance, but only a minority of general practitioners (GPs) are offering such screening.
View Article and Find Full Text PDFAssessing usability of electronic patient-reported outcome measures in older people with and without a rare dermatologic disorder.
J Patient Rep Outcomes
December 2024
eCOA Science, Clario, Geneva, Switzerland.
Background: Robust and well-defined data collection is important when using electronic patient-reported outcome measures (ePROMs) in clinical studies. Questions have been raised as to whether older age may be a barrier to data collection due to patients' unfamiliarity with electronic devices. Older adults may also have underlying health conditions that affect their ability to fill out patient-reported outcome measures (PROMs) on electronic devices.
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