Lydhør identitetsstøtte i samtaler med personer med demens
En studie av intervjuer i en femårig narrativ forløpsstudie
DOI:
https://doi.org/10.7557/14.5345Emneord (Nøkkelord):
dementia, identity, interview method, longitudinal, narrative study, demens, identitet, intervjumetode, forløpsstudie, narrativ studieSammendrag
Responsive identity support in conversations with people with dementia: A study of interviews in a five-years narrative longitudinal studyA narrative longitudinal study depends on trust and a positive relationship between the interviewer and the participant to encourage the participant’s continued participation. In reported studies, the methodological part is usually too short to present the complexities in dialogues over time. We therefore have analyzed the interview processes with younger people with dementia, relating the interactions to central concepts associated with identity. The aim was to explore the methodological interview approach used in a longitudinal study, focusing on supporting identity and self-esteem. We used the concept of responsive identity to illuminate our findings. In addition, we demonstrate how the interview dialogues can support identity and self-esteem of the participants. The core of this approach is that the interviewee, living with dementia, should be seen, confirmed and supported to preserve the person`s self and dignity. Dialogue with responsive identity support is a fruitful research method in dementia research. This approach can be generalized to person-centred communication in health and caring relationships.
Statistikk
Referanser
Bartlett, R. (2012). Modifying the diary interview method to research the lives of people with dementia. Qualitative Health Research, 22(12), 1717-1726. https://doi.org/10.1177/1049732312462240
Bartlett, R., Hick, C., Houston, A., Gardiner, L., & Wallace, D. (2015). Privileging place: Reflections on involving people with dementia in a residency. Dementia, 14(6), 788-799. https://doi.org/10.1177/1471301213512116
Beattie, E. (2009). Research participation of individuals with dementia: Decisional capacity, informed consent, and considerations for nurse investigators. Research in Gerontological Nursing, 2(2), 94-102. https://doi.org/10.3928/19404921-20090401-01
Bellass, S., Balmer, A., May, V., Keady, J., Buse, C., Capstick, A., ... & Hodgson, J. (2019). Broadening the debate on creativity and dementia: A critical approach. Dementia, 18(7-8), 2799-2820. https://doi.org/10.1177/1471301218760906
Bott, N. T., Radke, A., Stephens, M. L., & Kramer, J. H. (2014). Frontotemporal dementia: diagnosis, deficits and management. Neurodegenerative Disease Management, 4(6), 439-454. https://doi.org/10.2217/nmt.14.34
Caddell, L. S., & Clare, L. (2010). The impact of dementia on self and identity: a systematic review. Clinical Psychology Review, 30(1), 113-126. https://doi.org/10.1016/j.cpr.2009.10.003
Chase, S. E. (2011). Narrative inquiry: Still a field in the making. I N. Denzin & Y. S. Lincoln (Red.), Handbook of Qualitative Research. London: Sage Publications.
Chiao, C. Y., Wu, H. S., & Hsiao, C. Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340-350. https://doi.org/10.1111/inr.12194
Clare, L. (2010). Awareness in people with severe dementia: Review and integration. Aging Mental Health, 14(1), 20-32. https://doi.org/10.1080/13607860903421029
de Baggio, T. (2003). When it gets darker: An enlightened reflection on life with Alzheimer’s. New York: Free Press.
Engedal, K., & Haugen, P. K. (2018). Demens: sykdommer, diagnostikk og behandling. Tønsberg: Forlaget Aldring og Helse.
Engedal, K., & Laks, J. (2017). Forekomst av og risikofaktorer for demenssykdom i ung alder. I A. Johannessen, M. L. Barca, K. Engedal, & P. Haugen (Red.), Yngre personer med demens. Tønsberg: Forlaget Aldring og helse.
Fazio, S., & Mitchell, D. B. (2009). Persistence of self in individuals with Alzheimer's disease: Evidence from language and visual recognition. Dementia, 8(1), 39-59. https://doi.org/10.1177/1471301208099044
Feil, N., & de Klerk-Rubin, V. (2015). V/F validation: The Feil method: how to help disoriented old-old: Edward Feil Productions. 3 utg. Ohio: Edward Feil Production.
Fossland, T., & Thorsen, K. (2010). Livshistorier i teori og praksis. Oslo: Fagbokforlaget.
Folkehelseinstituttet, (2019). Hentet 25.08.20 fra: https://www.fhi.no/nettpub/hin/ikke-smittsomme/demens/
Fukuyama, F. (2018). Identity: Contemporary Identity Politics and the Struggle for Recognition: United Kingdom: Profile books.
Giddens, A. (1991). Modernity and self-identity: Self and society in the late modern age: Stanford University Press.
Heggestad, A. K., Nortvedt, P., & Slettebo, A. (2013). The importance of moral sensitivity when including persons with dementia in qualitative research. Nursing Ethics, 20(1), 30-40. https://doi.org/10.1177/0969733012455564
Herrmann, L. K., Welter, E., Leverenz, J., Lerner, A. J., Udelson, N., Kanetsky, C., & Sajatovic, M. (2018). A systematic review of dementia-related stigma research: can we move the stigma dial?, American Journal of Geriatric Psychiatry, 26(3), 316-331. https://doi.org/10.1016/j.jagp.2017.09.006
Jetten, J., Haslam, C., Pugliese, C., Tonks, J., & Haslam, S. A. (2010). Declining autobiographical memory and the loss of identity: effects on well-being. Journal of Clinical and Experimental Neuropsychology, 32(4), 408-416. https://doi.org/10.1080/13803390903140603
Josselson, R. (2011). Narrative Research. Deconstructing and Reconstructing story. I F. J. Wertz, K. Charmas, L. M. McMullen, R. Josselson, R. Andersson, & E. McSpadden. (Red.), Five ways of doing qualitative analysis: Phenomenological psychology, grounded theory, discourse analysis, narrative research, and intuitive inquiry. London: Guilford Press.
Johannessen, A., Engedal, K., Haugen, P. K., Dourado, M. C., & Thorsen, K. (2019). Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia. Journal of Multidisciplinary Healthcare, 12, 479-492. https://doi.org/10.2147/jmdh.S208424
Johannessen, A., Engedal, K., Haugen, P. K., Dourado, M. C. N., & Thorsen, K. (2018). "To be, or not to be": experiencing deterioration among people with young-onset dementia living alone. International Journal of Qualitative Studies on Health and Well-being, 13(1), 1490620. https://doi.org/10.1080/17482631.2018.1490620
Kelly, F. (2010). Recognising and supporting self in dementia: A new way to facilitate a person-centred approach to dementia care. Ageing and Society, 30(1), 103-124. https://doi.org/10.1017/S0144686X09008708
Kitwood, T. (1997). Dementia reconsidered. The person comes first. Norfolk: Open University Press.
Kohut, H. (1985). On the Continuity of the Self and Cultural Self Objects. I H. Kohut (Red.), Self Psychology and the Humanities. New York: W. W. Norton & Company.
Kontos, P. C. J. D. (2005). Embodied selfhood in Alzheimer's disease: Rethinking person-centred care. Dementia, 4(4), 553-570. https://doi.org/10.1177/1471301205058311
Kvale, S., & Brinkmann, S. (2009). Det kvalitative forskningsintervju. 2 utg. Oslo: Gyldendal akademisk.
Lacerda, I. B., Sousa, M. F. B., Santos, R. L., Nogueira, M. M., & Dourado, M. C. (2016). Concepts and objects of awareness in Alzheimer’s disease: An updated systematic review. Jornal Brasileiro de Psiquiatria, 65(1), 99-109. https://doi.org/10.1590/0047-2085000000110
Markova, I. S., Clare, L., Whitaker, C. J., Roth, I., Nelis, S. M., Martyr, A., Morris, R. (2014). Phenomena of awareness in dementia: Heterogeneity and its implications. Consciousness and Cognition, 25, 17-26. https://doi.org/10.1016/j.concog.2014.01.008
Nolan, M., Ryan, T., Enderby, P., & Reid, D. (2002). Towards a more inclusive vision of dementia care practice and research. Dementia, 1(2), 193-211. https://doi.org/10.1177/147130120200100206
Norberg, A. (2017). Identitetsverdighet hos personer med demens. Demens & Alderspsykiatri, 21(1), 4-8.
Nordenfelt, L., & Edgar, A. (2005). The four notions of dignity. Quality in Ageing and Older Adults, 6(1), 17-21. https://doi.org/10.1108/14717794200500004
Novek, S., & Wilkinson, H. (2019). Safe and inclusive research practices for qualitative research involving people with dementia: a review of key issues and strategies. Dementia, 18(3), 1042-1059. https://doi.org/10.1177/1471301217701274
Phillipson, L., & Hammond, A. (2018). More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia. International Journal of Qualitative Methods, 17(1), https://doi.org/10.1177/1609406918782784
Skaalvik, M. W., Fjelltun, A. M., Normann, H. K., & Norberg, A. (2016). Expressions of Sense of Self Among Individuals With Alzheimer's Disease. Research and Theory for Nursing Practice, 30(2), 161-175. https://doi.org/10.1891/1541-6577.30.2.161
Solomon, P., Nixon, S., Bond, V., Cameron, C., & Gervais, N. (2019). Two approaches to longitudinal qualitative analyses in rehabilitation and disability research. Disability Rehabilility, 1-7. https://doi.org/10.1080/09638288.2019.1602850
Statistisk sentralbyrå. (2016). Demens i norske kommuner 2015-2040, Helseøkonomisk analyse. (1). Oslo: Statistisk sentralbyrå.
Thorsen, K., Dourado, M. C. N., & Johannessen, A. (2018). Developing dementia: the existential experience of the quality of life with young-onset dementia - A longitudinal case study. Dementia, 1471301218789990. https://doi.org/10.1177/1471301218789990
Thorsen, K., Dourado, M. C., & Johannessen, A. (2020). Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study. International Journal of Qualitative Studies on Health and Well-being, 15(1), https://doi.org/10.1080/17482631.2020.1798711
Tranvåg, O., Petersen, K. A., & Nåden, D. J. D. (2016). Crucial dimensions constituting dignity experience in persons living with dementia. Dementia, 15(4), 578-595. https://doi.org/10.1177/1471301214529783
Uri, H. (2018). Hvem sa hva? Kvinner, menn og språk. Oslo: Gyldendal.
Williams, V., Webb, J., Read, S., James, R. & Davis, H. (2020). Future lived experience: inclusive research with people living with dementia. Qualitative Research, https://doi.org/10.1177/1468794119893608
Wikipedia (2019). Omsorgsbolig. hentet 03.12.20 fra: https://no.wikipedia.org/wiki/Omsorgsbolig.
World Medical Association. (2013). Declaration of Helsinki. Retrieved from http://www.wma.net/en/30publications/10policies/b3/index.html
Nedlastinger
Publisert
Hvordan referere
Utgave
Seksjon
