Zpráva o projektu mySupport Study

Karolína Vlčková, Martin Loučka

Cílem projektu mySupport Study, který probíhá od roku 2019 do roku 2022, je implementovat psychosociální edukační intervenci Podpora pečujících příbuzných při rozhodování (Family Care Decision Support – FCDS) v 6 zemích v Evropě a Severní Americe, vytvořit metodiku pro její zavedení a zároveň také zhodnotit její přínos pro pečující o osoby s demencí.

https://doi.org/10.29364/epsy.423

Literatura

Arcand, M., & Caron, C. D. (2017). Paliativní péče na konci života u lidí s Alzheimerovou nemocí či jiným neurodegenerativním onemocněním (L. Volicer & H. Vaňková, Trans.). 3. lékařská fakulta Univerzity Karlovy.

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., Dening, K. H., De Vries, K., Brazil, K., & van der Steen, J. T. (2021). 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. https://doi.org/….2021.07.031

Brazil, K., Carter, G., Cardwell, C., Clarke, M., Hudson, P., Froggatt, K., McLaughlin, D., Passmore, P., & Kernohan, W. G. (2018). Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial. Palliative Medicine, 32(3), 603–612. https://doi.org/…216317722413

Caron, C. D., Griffith, J., & Arcand, M. (2016). End-of-life decision making in dementia: The perspective of family caregivers. Dementia, 4(1), 113–136. https://doi.org/…301205049193

Gaugler, J. E. (2005). Family involvement in residential long-term care: A synthesis and critical review. Aging & Mental Health, 9(2), 105. https://doi.org/…412331310245

Hudson, P., Quinn, K., O’Hanlon, B., & Aranda, S. (2008). Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC Palliative Care, 7(1), 1–12. https://doi.org/…-12/TABLES/5

Ibrahim, J. E., MacPhail, A., Winbolt, M., & Grano, P. (2016). Limitation of care orders in patients with a diagnosis of dementia. Resuscitation, 98, 118–124. https://doi.org/….2015.03.014

Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E., Bavishi, S., Shahriyarmolki, K., & Cooper, C. (2010). Making decisions for people with dementia who lack capacity: Qualitative study of family carers in UK. BMJ,341(7771), 494. https://doi.org/…36/BMJ.C4184

Lynch, M. C. (2016). Is tube feeding futile in advanced dementia? Linacre Q, 83(3), 283–307. https://doi.org/…2016.1211879

Mátl, O., Mátlová, M., & Holmerová, I. (2016). Zpráva o stavu demence. Česká alzeimerovská společnost.

O’Connor, A. M. (1995). Validation of a decisional conflict scale. Medical Decision Making : An International Journal of the Society for Medical Decision Making, 15(1), 25–30. https://doi.org/…9X9501500105

Sachs, G. A., Shega, J. W., & Cox-Hayley, D. (2004). Barriers to Excellent End-of-life Care for Patients with Dementia. Journal of General Internal Medicine, 19(10), 1057. https://doi.org/…2004.30329.X

Song, M. K., & Sereika, S. M. (2006). An evaluation of the Decisional Conflict Scale for measuring the quality of end-of-life decision making. Patient Education and Counseling, 61(3), 397–404. https://doi.org/….2005.05.003

van der Steen, J. T., Lemos Dekker, N., Gijsberts, M.-J. H. E., Vermeulen, L. H., Mahler, M. M., & The, B. A.-M. (2017). Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development. BMC Palliative Care, 16(1). https://doi.org/…4-017-0201-4

van der Steen, J. T., Radbruch, L., Hertogh, C. M., De Boer, M. E., Hughes, J. C., Larkin, P., Francke, A. L., Jünger, S., Gove, D., Firth, P., Koopmans, R. T., & Volicer, L. (2014). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28(3), 197–209. https://doi.org/…216313493685

Vohra, J. U., Brazil, K., Hanna, S., & Abelson, J. (2004). Family perceptions of end-of-life care in long-term care facilities. Journal of Palliative Care, 20(4), 297–302. https://doi.org/…970402000405

Walshe, C. (2011). The evaluation of complex interventions in palliative care: An exploration of the potential of case study research strategies. Palliative Medicine, 25(8), 774–781. https://doi.org/…216311419883

WHO. (2017). Global action plan on the public health response to dementia 2017–2025. Geneva: World Health Organization, 27. http://www.who.int/…017_2025/en/

Zobrazit celé Skrýt