Shared decision-making in dementia care planning: barriers and facilitators in two European countries

References

• Ampe, S., Sevenants, A., Coppens, E., Spruytte, N., Smets, T., Declercq, A., & van Audenhove, C. (2015). Study protocol for 'we DECide': Implementation of advance care planning for nursing home residents with dementia. Journal of Advanced Nursing, 71(5), 1156–1168. doi: 10.1111/jan.12854
   PubMed Web of Science ®Google Scholar
• Bramble, M., Moyle, W., & Shum, D. (2011). A quasi-experimental design trial exploring the effect of a partnership intervention on family and staff well-being in long-term dementia care. Aging & Mental Health, 15(8), 995–1007. doi: 10.1080/13607863.2011.583625.
   PubMed Web of Science ®Google Scholar
• Bauer, M., Nay, R., Tarzia, L., Fetherstonhaugh, D., Wellman, D., & Beattie, E. (2014). ‘We need to know what's going on’: Views of family members toward the sexual expression of people with dementia in residential aged care. Dementia, 13, 571–585. doi: 10.1177/1471301213479785
   PubMedGoogle Scholar
• Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (Or it takes at least two to tango). Social Science and Medicine, 44(5), 681–692. doi:10.1016/S0277-9536(96)00221-3
   PubMed Web of Science ®Google Scholar
• Charles, C., Gafni, A., & Whelan T. (1999). Decision-making in the physician-patient encounter: Revisiting the shared treatment decision-making model. Social Science and Medicine, 49(5), 651–661. doi:10.1016/S0277-9536(99)00145-8
   PubMed Web of Science ®Google Scholar
• Durlak, A.J., & DuPre, E.P. (2008). Implementation matters: A review of research on the influence of implementation on program outcomes and the factors affecting implementation. American Journal of Community Psychology, 41, 327–350. doi: 10.1007/s10464-008-9165-0
   PubMed Web of Science ®Google Scholar
• Elwyn, G., Edwards, A., Mowle, S., Wensing, M., Wilkinson, C., Kinnersley, P., & Grol, R. (2010). Implementing shared decision making in the NHS. BMJ, 341, 971–973.
   Web of Science ®Google Scholar
• Gaugler, J.E. (2005). Family involvement in residential long-term care: A synthesis and critical review. Aging & Mental Health, 9(2), 105–118. doi: 0.1080/13607860412331310245
   PubMed Web of Science ®Google Scholar
• Grol, R., & Wensing, M. (2004). What drives change? Barriers to and incentives for achieving evidence-based practice. Medical Journal of Australia, 180, S57–60. Retrieved from https://www.mja.com.au/journal/2004/180/6/what-drives-change-barriers-and-incentives-achieving-evidence-based-practice
   PubMed Web of Science ®Google Scholar
• Hancock, G.A., Woods, B., Challis, D.A., & Orrell, M. (2006). The needs of older people with dementia in residential care. International Journal of Geriatric Psychiatry, 21, 43–49. doi: 10.1002/gps.1421
   PubMed Web of Science ®Google Scholar
• Hoffmann, T.C., Legare, F., Simmons, M.B., Mc Namara, K., Mc Caffery, K., Trevena, L.J., … Del Mar, C.B. (2014). Shared decision making: What do clinicians need to know and why should they bother? Medical Journal of Australia, 201(1), 35–39. doi: 10.5694/mja14.00002
   PubMed Web of Science ®Google Scholar
• Hsieh, H.F., & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. doi: 10.1177/1049732305276687
   PubMed Web of Science ®Google Scholar
• Huber, M., Knottnerus, J.A., Green, L., van der Horst, H., Jadad, A.R., Kromhout, D., & Smid, H. (2011). How should we define health? BMJ, 343, d4163, 1–3. doi: 10.1136/bmj.d4163
   PubMed Web of Science ®Google Scholar
• Hulscher, M.E., Laurant, M.G., & Grol, R.P. (2003). Process evaluation on quality improvement interventions. Quality & Safety in Health Care, 12(1), 40–46. doi:10.1136/qhc.12.1.40
   PubMedGoogle Scholar
• Koopmans, R.T., Lavrijsen, J.C., Hoek, J.F., Went, P.B., & Schols, J.M. (2010). Dutch elderly care physician: A new generation of nursing home physician specialists. Journal of the American Geriatrics Society, 58(9), 1807–1809. doi: 10.1111/j.1532-5415.2010.03043.x
   PubMed Web of Science ®Google Scholar
• Maas, M.L., Reed, D., Park, M., Specht, J.P., Schutte, D., Kelley, L.S., … Buckwalte, C.C. (2004). Outcomes of family involvement in care intervention for caregivers of individuals with dementia. Nursing Research, 53(2), 76–86.
   PubMed Web of Science ®Google Scholar
• Mariani, E., Engels, Y., Koopmans, R., Chattat, R., & Vernooij-Dassen, M. (2016). Shared decision-making on a ‘life-and-care plan’ in long-term care facilities: Research protocol. Nursing Open, 3(3), 179–187. doi: 10.1002/nop2.42
   PubMed Web of Science ®Google Scholar
• Meiland, F.J., Droes, R.M., de Lange, J., & Vernooij-Dassen, M. (2005). Facilitators and barriers in the implementation of the meeting centres model for people with dementia and their carers. Health Policy, 71(2), 243–253. doi:10.1016/j.healthpol.2004.08.011
   PubMed Web of Science ®Google Scholar
• Petriwskyj, A., Gibson, A., Parker, D., Banks, S., Andrews, S., & Robinson, A. (2014). A qualitative metasynthesis: Family involvement in decision making for people with dementia in residential aged care. International Journal of Evidence-Based Healthcare, 12, 87–104. doi: 10.1097/XEB.0000000000000002
   PubMedGoogle Scholar
• Pillemer, K, Hegeman, C.R., Albright, B., & Henderson, C. (1998). Building bridges between families and nursing home staff: The partners in caregiving program. The Gerontologist, 38(4), 499–503. doi: 9726137
   PubMed Web of Science ®Google Scholar
• Pope, C., van Royen, P., & Baker, R. (2002). Qualitative methods in research on healthcare quality. Quality & Safety in Health Care, 11, 148–152. doi: 10.1136/qhc.11.2.148
   PubMed Web of Science ®Google Scholar
• Rinnenburger, D.E., Alma, M.G, Bigioni, D., Brunetti, G., Liberati, C., Magliacani, V., … Cecchini, L. (2012). Annali dell'Istituto Superiore Di Sanita, 48(3), 328–333. doi: 10.4415/ANN_12_03_14
   PubMed Web of Science ®Google Scholar
• Robison, J, Curry, L., Gruman, C., Porter, M., Henderson, C.R. Jr, & Pillemer, K. (2007). Partners in caregiving in a special care environment: Cooperative communication between staff and families on dementia units. The Gerontologist, 47(4), 504–515.
   PubMed Web of Science ®Google Scholar
• Rosen, J, Mittal, V., Mulsant, B.H., Degenholtz, H., Castle, N., & Fox, D. (2003). Educating the families of nursing home residents: A pilot study using a computer-based system. Journal of the American Medical Directors Association, 4(3), 128–134. doi: 10.1097/01.JAM.0000062035.91165.A0
   PubMedGoogle Scholar
• Schols, J.M.G.A., Crebolder, H.F.J.M., & van Weel, C. (2004). Nursing home and nursing home physician: The Dutch experience. Journal of the American Medical Directors Association, 5, 207–212. doi: 10.1097/01.JAM.0000123031.43619.60
   PubMedGoogle Scholar
• Smebye, K.L., Kirkevold M., & Engedal K. (2012). How do people with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Services Research, 12, 241–253. doi:10.1186/1472-6963-12-241
   PubMed Web of Science ®Google Scholar
• Span, M., Smits, C., Jukema, J., Groen-van de Ven, L., Ruud, J., Vernooij-Dassen, M., … Hettinga, M. (2015). An interactive web tool for facilitating shared decision-making in dementia-care networks: A field study. Frontiers in Aging Neuroscience, 7, 1–12. doi: 10.3389/fnagi.2015.00128
   PubMed Web of Science ®Google Scholar
• van der Steen, J.T. (2010). Dying with dementia: What we know after more than a decade of research. Journal of Alzheimer's Disease, 22(1), 37–55. doi:10.3233/JAD-2010-100744
   PubMed Web of Science ®Google Scholar
• van Riet Paap, J., Vernooij-Dassen, M., Brouwer, F., Meiland, F., Iliffe, S., Davies, N., … Engels, Y. (2014). Improving the organization of palliative care: Identification of barriers and facilitators in five European countries. Implementation Science, 9, 130–140. doi: 10.1186/s13012-014-0130-z
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M., & Yun-Hee, J. (2016). Social health and dementia: The power of human capabilities. International Psychogeriatrics, 28(5), 701–703. doi:10.1017/S1041610216000260
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M., Leatherman, S., & Olde Rikkert, M. (2011). Quality of care in frail older people: The balance between receiving and giving. BMJ Analysis, 342, 1062–1063. doi: http://dx.doi.org/10.1136/bmj.d403
   Web of Science ®Google Scholar
• Whitlatch, C.J. (2010). Assessing the personal preferences of people with dementia. In P.A. Lichtenberg (Ed.), Handbook of assessment in clinical gerontology (pp. 557–578). London: Academic Press.
   Google Scholar
• Wiskerke, E., & Manthorpe, J. (2016). New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff. Dementia, 1–18. doi: 10.1177/1471301216647814
   Google Scholar
• Zimmerman, S., Cohen, W.L., Reed, D., Gwyther, L.P., Washington, T., Cagle, J.G., … Preisser, J.S. (2013). Families matter in long-term care: Results of a group-randomized trial. Seniors Housing & Care Journal, 21(1), 3–20.
   PubMedGoogle Scholar