Online peer support: views and experiences of people with young onset dementia (YOD)

References

• Andrade, C. (2020). The limitations of online surveys. Indian Journal of Psychological Medicine, 42(6), 575–576. https://doi.org/10.1177/0253717620957496
   PubMedGoogle Scholar
• Bannon, S. M., Reichman, M. R., Wang, K., Uppal, S., Grunberg, V. A., & Vranceanu, A.-M. (2022). A qualitative meta-synthesis of common and unique preferences for supportive services among persons with young onset dementia and their caregivers. Dementia (London, England), 21(2), 519–539. https://doi.org/10.1177/14713012211048118
   PubMedGoogle Scholar
• Braun, V., & Clarke, V. (2021). Thematic analysis: A practical guide/Virginia Braun and Victoria Clarke. (1st ed.). SAGE.
   Google Scholar
• Braun, V., Clarke, V., Boulton, E., Davey, L., & McEvoy, C. (2021). The online survey as a qualitative research tool. International Journal of Social Research Methodology, 24(6), 641–654. https://doi.org/10.1080/13645579.2020.1805550
   Web of Science ®Google Scholar
• Braun, V., Clarke, V., & Gray, D. (2017). Innovations in qualitative methods. In B. Gough (Ed.), The Palgrave Handbook of Critical Social Psychology (pp. 243–266). Palgrave Macmillan UK. https://doi.org/10.1057/978-1-137-51018-1_13
   Google Scholar
• Bruinsma, J., Peetoom, K., Verhey, F., Bakker, C., & de Vugt, M. (2022). Behind closed doors. A case study exploring the lived experiences of a family of a person with the behavioral variant of frontotemporal dementia. Dementia (London, England), 21(8), 2569–2583. https://doi.org/10.1177/14713012221126312
   PubMedGoogle Scholar
• Busted, L. M., Nielsen, D. S., & Birkelund, R. (2020). “Sometimes it feels like thinking in syrup” – the experience of losing sense of self in those with young onset dementia. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1734277. https://doi.org/10.1080/17482631.2020.1734277
   PubMed Web of Science ®Google Scholar
• Carter, J., Jackson, M., Gleisner, Z., & Verne, J. (2022). Prevalence of all cause young onset dementia and time lived with dementia: Analysis of primary care health records. The Journal of Dementia Care. https://journalofdementiacare.co.uk/article/prevalence-of-all-cause-young-onset-dementia-and-time-lived-with-dementia-analysis-of-primary-care-health-records
   Google Scholar
• Cations, M., Day, S., Laver, K., Withall, A., & Draper, B. (2022). Post-diagnosis young-onset dementia care in the National Disability Insurance Scheme. The Australian and New Zealand Journal of Psychiatry, 56(3), 270–280. https://doi.org/10.1177/00048674211011699
   PubMed Web of Science ®Google Scholar
• Cations, M., Withall, A., Horsfall, R., Denham, N., White, F., Trollor, J., Loy, C., Brodaty, H., Sachdev, P., Gonski, P., Demirkol, A., Cumming, R. G., & Draper, B. (2017). Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PloS One, 12(7), e0180935. https://doi.org/10.1371/journal.pone.0180935
   PubMed Web of Science ®Google Scholar
• Clare, L., Rowlands, J. M., & Quin, R. (2008). Collective strength: The impact of developing a shared social identity in early-stage dementia. Dementia, 7(1), 9–30. https://doi.org/10.1177/1471301207085365
   Google Scholar
• Craig, D., & Strivens, E. (2016). Facing the times: A young onset dementia support group: FacebookTM style. Australasian Journal on Ageing, 35(1), 48–53. https://doi.org/10.1111/ajag.12264
   PubMed Web of Science ®Google Scholar
• Draper, B., Cations, M., White, F., Trollor, J., Loy, C., Brodaty, H., Sachdev, P., Gonski, P., Demirkol, A., Cumming, R. G., & Withall, A. (2016). Time to diagnosis in young-onset dementia and its determinants: The INSPIRED study. International Journal of Geriatric Psychiatry, 31(11), 1217–1224. https://doi.org/10.1002/gps.4430
   PubMed Web of Science ®Google Scholar
• Eysenbach, G. (2004). Improving the quality of web surveys: The checklist for reporting results of internet e-surveys (CHERRIES). Journal of Medical Internet Research, 6(3), e34. https://doi.org/10.2196/jmir.6.3.e34
   PubMed Web of Science ®Google Scholar
• Garabedian, M., Perrone, E., Pileggi, C., & Zimmerman, V. (2020). Support group participation: Effect on perceptions of patients with newly diagnosed multiple sclerosis. International Journal of MS Care, 22(3), 115–121. https://doi.org/10.7224/1537-2073.2018-099
   PubMedGoogle Scholar
• Gerritzen, E. V., Kohl, G., Orrell, M., & McDermott, O. (2022). Peer support through video meetings: Experiences of people with young onset dementia. Dementia, 22(1), 218–234. https://doi.org/10.1177/14713012221140468
   PubMedGoogle Scholar
• Gerritzen, E. V., Lee, A. R., McDermott, O., Coulson, N., & Orrell, M. (2022a). Online peer support for people with multiple sclerosis: A narrative synthesis systematic review. International Journal of MS Care, 24(6), 252–259. (under review). https://doi.org/10.7224/1537-2073.2022-040
   PubMedGoogle Scholar
• Gerritzen, E. V., Lee, A. R., McDermott, O., Coulson, N., & Orrell, M. (2022b). Online peer support for people with Parkinson disease: Narrative synthesis systematic review. JMIR Aging, 5(3), e35425. https://doi.org/10.2196/35425
   PubMedGoogle Scholar
• Gerritzen, E. V., McDermott, O., & Orrell, M. (2022). Development of best practice guidance on online peer support for people with young onset dementia: Protocol for a mixed methods study. JMIR Research Protocols, 11(7), e38379. https://doi.org/10.2196/38379
   PubMedGoogle Scholar
• Giebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., Komuravelli, A., Shenton, J., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Rajagopal, M., Ward, K., Shaw, L., Corcoran, R., Bennett, K., & Gabbay, M. (2021). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: A qualitative study. Aging & Mental Health, 25(7), 1281–1288. https://doi.org/10.1080/13607863.2020.1822292
   PubMed Web of Science ®Google Scholar
• Giebel, C., Robertson, S., Beaulen, A., Zwakhalen, S., Allen, D., & Verbeek, H. (2021). Nobody seems to know where to even turn to”: Barriers in accessing and utilising dementia care services in England and The Netherlands. International Journal of Environmental Research and Public Health, 18(22), 12233. https://doi.org/10.3390/ijerph182212233
   PubMed Web of Science ®Google Scholar
• Greenwood, N., & Smith, R. (2016). The experiences of people with young-onset dementia: A meta-ethnographic review of the qualitative literature. Maturitas, 92, 102–109. https://doi.org/10.1016/j.maturitas.2016.07.019
   PubMed Web of Science ®Google Scholar
• Huber, M., Knottnerus, J. A., Green, L., Horst, H. V. D., Jadad, A. R., Kromhout, D., Leonard, B., Lorig, K., Loureiro, M. I., Meer, J. W. M. V. D., Schnabel, P., Smith, R., Weel, C. V., & Smid, H. (2011). How should we define health? BMJ (Clinical Research ed.), 343, d4163. https://doi.org/10.1136/bmj.d4163
   PubMed Web of Science ®Google Scholar
• Jisc Online Surveys. (2022). https://www.onlinesurveys.ac.uk/
   Google Scholar
• Keyes, S. E., Clarke, C. L., Wilkinson, H., Alexjuk, E. J., Wilcockson, J., Robinson, L., Reynolds, J., McClelland, S., Corner, L., & Cattan, M. (2016). “We’re all thrown in the same boat … ”: A qualitative analysis of peer support in dementia care. Dementia (London, England), 15(4), 560–577. https://doi.org/10.1177/1471301214529575
   PubMedGoogle Scholar
• Kingod, N., Cleal, B., Wahlberg, A., & Husted, G. R. (2017). Online peer-to-peer communities in the daily lives of people with chronic illness: A qualitative systematic review. Qualitative Health Research, 27(1), 89–99. https://doi.org/10.1177/1049732316680203
   PubMed Web of Science ®Google Scholar
• Loi, S. M., Goh, A. M. Y., Mocellin, R., Malpas, C. B., Parker, S., Eratne, D., Farrand, S., Kelso, W., Evans, A., Walterfang, M., & Velakoulis, D. (2022). Time to diagnosis in younger-onset dementia and the impact of a specialist diagnostic service. International Psychogeriatrics, 34(4), 367–375. https://doi.org/10.1017/S1041610220001489
   PubMed Web of Science ®Google Scholar
• Mayrhofer, A., Mathie, E., McKeown, J., Bunn, F., & Goodman, C. (2018). Age-appropriate services for people diagnosed with young onset dementia (YOD): A systematic review. Aging & Mental Health, 22(8), 933–941. https://doi.org/10.1080/13607863.2017.1334038
   Web of Science ®Google Scholar
• Mayrhofer, A. M., Greenwood, N., Smeeton, N., Almack, K., Buckingham, L., Shora, S., & Goodman, C. (2021). Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey. Health & Social Care in the Community, 29(3), 664–671. https://doi.org/10.1111/hsc.13334
   PubMed Web of Science ®Google Scholar
• McDermott, O., Charlesworth, G., Hogervorst, E., Stoner, C., Moniz-Cook, E., Spector, A., Csipke, E., & Orrell, M. (2019). Psychosocial interventions for people with dementia: A synthesis of systematic reviews. Aging & Mental Health, 23(4), 393–403. https://doi.org/10.1080/13607863.2017.1423031
   PubMed Web of Science ®Google Scholar
• Milby, E., Murphy, G., & Winthrop, A. (2017). Diagnosis disclosure in dementia: Understanding the experiences of clinicians and patients who have recently given or received a diagnosis. Dementia (London, England), 16(5), 611–628. https://doi.org/10.1177/1471301215612676
   PubMedGoogle Scholar
• NIHR (2022). Payment guidance for researchers and professionals. https://www.nihr.ac.uk/documents/payment-guidance-for-researchers-and-professionals/27392#payment-rates
   Google Scholar
• Oliver, K., O’Malley, M., Parkes, J., Stamou, V., La Fontaine, J., Oyebode, J., & Carter, J. (2020). Living with young onset dementia and actively shaping dementia research – The Angela Project. Dementia (London, England), 19(1), 41–48. https://doi.org/10.1177/1471301219876414
   PubMedGoogle Scholar
• Oyebode, J. R. (2022). The experience of living with young onset dementia. In M. de Vugt, & Carter, J. (Eds.), Understanding young onset dementia. Evaluation, needs and care (pp. 67–87). Routledge.
   Google Scholar
• Pierse, T., Keogh, F., Challis, D., & O’Shea, E. (2022). Resource allocation in dementia care: Comparing the views of people with dementia, carers and health and social care professionals under constrained and unconstrained budget scenarios. Aging & Mental Health, 26(4), 679–687. https://doi.org/10.1080/13607863.2021.1889969
   PubMed Web of Science ®Google Scholar
• Rodriquez, J. (2013). Narrating dementia: Self and community in an online forum. Qualitative Health Research, 23(9), 1215–1227. https://doi.org/10.1177/1049732313501725
   PubMed Web of Science ®Google Scholar
• Spreadbury, J. H., & Kipps, C. (2019). Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia (London, England), 18(2), 579–598. https://doi.org/10.1177/1471301216684401
   PubMedGoogle Scholar
• Stamou, V., Fontaine, J. L., O’Malley, M., Jones, B., Gage, H., Parkes, J., Carter, J., & Oyebode, J. (2021). The nature of positive post-diagnostic support as experienced by people with young onset dementia. Aging & Mental Health, 25(6), 1125–1133. https://doi.org/10.1080/13607863.2020.1727854
   PubMed Web of Science ®Google Scholar
• Stamou, V., La Fontaine, J., Gage, H., Jones, B., Williams, P., O’Malley, M., Parkes, J., Carter, J., & Oyebode, J. (2021). Services for people with young onset dementia: The ‘Angela’ project national UK survey of service use and satisfaction. International Journal of Geriatric Psychiatry, 36(3), 411–422. https://doi.org/10.1002/gps.5437
   PubMed Web of Science ®Google Scholar
• Steadman, J., & Pretorius, C. (2014). The impact of an online Facebook support group for people with multiple sclerosis on non-active users: Original research. African Journal of Disability, 3(1), 132. https://doi.org/10.4102/ajod.v3i1.132
   PubMedGoogle Scholar
• Talbot, C. V., & Coulson, N. S. (2023). ‘I found it the only place that spoke the same language’: A thematic analysis of messages posted to an online peer support discussion forum for people living with dementia. Age and Ageing, 52(1), afac330. https://doi.org/10.1093/ageing/afac330
   PubMed Web of Science ®Google Scholar
• Talbot, C. V., O’Dwyer, S. T., Clare, L., Heaton, J., & Anderson, J. (2020). How people with dementia use twitter: A qualitative analysis. Computers in Human Behavior, 102, 112–119. https://doi.org/10.1016/j.chb.2019.08.005
   Web of Science ®Google Scholar
• Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care, 19(6), 349–357. http://www.jstor.org.nottingham.idm.oclc.org/stable/45127319 https://doi.org/10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• van de Veen, D., Bakker, C., Rosness, T., & Koopmans, R. T. C. M. (2022). Young onset dementia – challenges in nomenclature and clinical definition. In M. E. de vugt & J. Carter (Eds.), Understanding young onset dementia. Evaluation, needs and care. Routledge.
   Google Scholar
• van Mierlo, T. (2014). The 1% rule in four digital health social networks: An observational study. Journal of Medical Internet Research, 16(2), e33. https://doi.org/10.2196/jmir.2966
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M., Moniz-Cook, E., Verhey, F., Chattat, R., Woods, B., Meiland, F., Franco, M., Holmerova, I., Orrell, M., & de Vugt, M. (2021). Bridging the divide between biomedical and psychosocial approaches in dementia research: The 2019 INTERDEM manifesto. Aging & Mental Health, 25(2), 206–212. https://doi.org/10.1080/13607863.2019.1693968
   PubMed Web of Science ®Google Scholar