Findings

Conference presentations:

Bavelaar L, van der Steen J, Nicula M, Morris S, Kaasalainen S, Achterberg A, & Brazil K. (2020, Nov 4-7). Developing country-specific question prompt lists about dementia palliative care for family caregivers [Conference presentation]. GSA 2020 Annual Scientific Meeting, Online.  Innovation in Aging 2020; 4(Suppl 1): 786, https://doi.org/10.1093/geroni/igaa057.2846

Hartigan, I., McKeon M, Brazil K., Timmons S., Fitzgerald S., Fox S., Foley T., Sweeney C, Buckle C., O Caoimh R., Cornally N. (2022) Remote knowledge translation and exchange (KTE) strategies – engaging staff and families in the mySupport study during COVID-19. 26^th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.

Cornally, N. & mySupport Group. (2002) Introduction of the overview abstract- Implementation of advance care planning in dementia with nursing home staff and family caregivers during Covid-19: The six-country mySupport study. 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.

Bavelaar, L., van der Steen, J., Visser, M (2022) Using an educational booklet to empower nurses in advance care planning conversations with family of nursing home residents with dementia, 26^th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.

Harding, A., Brazil, K., Cousins, E., De Vries, K., Doherty, J., Harrison Dening, K., McCann, A., Preston, N., Varey, S., & mySupport Group; Necessary Discussions Group. Facilitators, barriers and lessons from undertaking two Advance Care Planning implementation studies remotely & online during a global pandemic. 26^th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.

Gonella, S and Di Giuilio, P. (2022) Strategies to tailor the mySupport intervention to local characteristics and needs. 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.

Preston, N., Brazil, K., Carter, G., Cousins, E., Doherty, J., Finucane, A., Hanratty, B., Harding, A., Harrison Dening, K., McCann, A., Mitchell, G., Russell, S., Stocker, R., Varey, S. (2022) Experiences of advance care planning during the COVID-19 pandemic in long term care facilities. 26^th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.

Gonella, S. (2022) End-of-Life Communication in Nursing Home. EAPC Post-Doctoral Award. 12th World Research Congress of the European Association for Palliative Care. Palliative Medicine 33(1) Suppl. https://doi.org/10.1177/02692163221093145

Vlckova, K., Loucka., (2022) Barriers and facilitators to implement Family Carer Decision Support intervention using family care conferences in nursing homes in the Czech Republic: national data from mySupport study. 12th World Research Congress of the European Association for Palliative Care. Palliative Medicine 33(1) Suppl. https://doi.org/10.1177/02692163221093145

Fitzgerald, Serena & Just, Danielle & McCann, Adrienne & Di Sante, Emily & Bavelaar, Laura & Nicula, Maria & Gonella, Silvia & Harding, Andrew & O Connell, Selena & Vlckova-Horakova, Karolina & Fox, Siobhan. (2021). Development of an Early Career Research Committee and Online Mentorship Programme as part of the mySupport Study.  17th World Congress European Association of Palliative Care. Palliative Medicine 35 (1) suppl, September page 100 https://journals.sagepub.com/toc/pmja/35/1_suppl

di giulio, Paola & Angaramo, Marianna & Gonella, Silvia. (2021). Implementing advance care planning with family caregivers of nursing home residents in Italy. European Association for Palliative Care 17th World Congress Online “Exploring new dimensions” At: Interactive Online Sessions. Palliative Medicine 35 (1) suppl, September page 15 https://journals.sagepub.com/toc/pmja/35/1_suppl

Harding, A., Cousins, E., Doherty, J., McCann, A., Varey, S., Preston, N., Harrison Dening, K., De Vries, K., Brazil, K., mySupport Group, Necessary Discussions Group (2021) Lessons learnt from undertaking dementia nursing home research remotely & online during a global pandemic: Tales from two advance care planning implementation studies. Alzheimer’s Europe Conference QOP1. Resilience and COVID-19. https://www.alzheimer-europe.org/sites/default/files/2022-01/2021%20AE%20Conference%20-%20Abstract%20Book.pdf

Just, D., Tétrault, B., Sussman, T, Kaasalainen, S, (2022) Motivations and Impact of the Strategic Guiding Council: An International Patient and Public Involvement Panel for Long-term Care Research During the COVID-19 Pandemic. Oral presentation at The Marie Curie Research Conference: Improving End of Life for All. 30th January to 4th February 2022, Online  BMJ Supportive & Palliative Care 12 (1) http://dx.doi.org/10.1136/spcare-2021-MCRC.52

Vlckova, K., Gonella, S., Bavelaar, L., Mitchel G., Sussman T.: (2022) Methodological issues and challenges in designing and conducting research at the end of life: findings of qualitative and textual evidence from researchers´ perspective – oral presentation.12th European Association for Palliative Care World Research Congress, 2022.

Vlckova, K., Loucka, M. (2022): Implementation of psychosocial intervention FCDS including family conferences in nursing homes: Czech data from mySupport study – poster. Czech Palliative Care Society Congress.

Hartigan I, Racine E, Meehan E, McKeon M, Cornally N, Brazil K, Lisiecka D, Timmons S, Fitzgerald S, Fox S, Foley T, Sweeney C, Buckle C, O Caoimh R, McGrath H. (2020). Fit for context: Co-designing a Comfort Care booklet for people with dementia [Oral presentation]. Transforming Care and Communities – Virtual 12th International Dementia Conference. https://engagingdementia.ie/wp-content/uploads/2020/11/1.-Full-Conference-Programme-2020-PROGRAMME_6.pdf

Meehan E, McKeon M, Hartigan I, Brazil K, Rabbitte M, Lisiecka D, Timmons S, Fox S, Foley T, Sweeney C, Buckley C, O Caoimh R, Fitzgerald S, Cornally N. (2020). Communication is key: ensuring effective dissemination of key messages and new knowledge from mySupport study [Oral presentation]. Transforming Care and Communities – Virtual 12th International Dementia Conference. https://engagingdementia.ie/wp-content/uploads/2020/11/1.-Full-Conference-Programme-2020-PROGRAMME_6.pdf

Brazil, K., Kassalainen, S., Sussman, T., van der Steen, J., Cornally, N., Hartigan, I., Louka, M., Di Giulio, P., McCann, A., & Morris, S. (2019). Implementing the Family Carer Decision Support (FCDS) Intervention to improve end of life care in care homes: Planning a transnational effectiveness-implementation study. Poster session presented at PhD and Postdoctoral Research Showcase event Poster, Doctoral and Post-Doctoral Nursing & Midwifery: Making an impact on Education and Practice, Belfast , United Kingdom.

Hartigan, I., Brazil, I., Kaasalainen, S., Sussman, T., van der Steen, J., Loucka, M., Giulio, P., Cornally, N. (2019). A Transnational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care. Age and Ageing. 48. iii17-iii65. 10.1093/ageing/afz103.216.

Peer Reviewed Journals Articles:

Gonella, S., Di Giulio, P., Angaramo, M., Dimonte, V., Campagna, S., Brazil, K., & mySupport Study Group. (2022). Implementing a nurse-led quality improvement project in nursing home during COVID 19 pandemic: A qualitative study. International Health Trends and Perspectives, 2(2), 175-192.

Bavelaar, L., McCann, A., Cornally, N., Hartigan, I., Kaasalainen, S., Vankova, H., Di Giulio, P., Volicer, L., Arcand, M., van der Steen, Brazil, K., & the mySupport study group. (2022). Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15-year timespan. BMC palliative care, 21(1), 1-8.

Bavelaar, L., Nicula, M., Morris, S., Kaasalainen, S., Achterberg, W. P., Loucka, M.,Vlckova, K., Thompson, G., Cornally, N., Hartigan, I., Harding, A., Preston, N., Walshe, C., Cousins, E., Harrison Dening, K., De Vries, K., Brazil, K.,& van der Steen, J. T. (2022). Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers. Patient Education and Counseling, 105(4), 965-973.

Gonella, S., Mitchell, G., Bavelaar, L., Conti, A., Vanalli, M., Basso, I., & Cornally, N. (2022). Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review. Palliative Medicine, 36(2), 268-291.

Bavelaar, L., van Tol, L. S., Caljouw, M. A., & van der Steen, J. T. (2021). Nederlandse vertaling en eerste stappen in validatie van de PPEET om burger-en patiëntenparticipatie te evalueren. TSG-Tijdschrift voor gezondheidswetenschappen, 99(4), 146-153. https://doi.org/10.1007/s12508-021-00316-9

Vlčková, K., Loučka, M. (2022) Zpráva o projektu mySupport Study. E-psychologie, 15 (4), 79-83. https://doi.org/10.29364/epsy.423