The aim of this article is to show the importance of moral sensitivity when including persons with dementia in research. The article presents and discusses ethical challenges encountered when a total of 15 persons with dementia from two nursing homes and seven proxies were included in a qualitative study. The examples show that the ethical challenges may be unpredictable. As researchers, you participate with the informants in their daily life and in the interviews, and it is not possible to plan all that may happen during the research. A procedural proposal to an ethical committee at the beginning of a research project based on traditional research ethical principles may serve as a guideline, but it cannot solve all the ethical problems one faces during the research process. Our main argument in this article is, therefore, that moral sensitivity is required in addition to the traditional research ethical principles throughout the whole process of observing and interviewing the respondents.
HellstromINolanMNordenfeltLEthical and methodological issues in interviewing persons with dementia. Nurs Ethics2007; 14(5): 608–619.
2.
MooreTFHollettJ. Giving voice to persons living with dementia: the researcher’s opportunities and challenges. Nurs Sci Q2003; 16(2): 163–167.
3.
ParseRR. Quality of life for persons living with Alzheimer’s disease: the human becoming perspective. Nurs Sci Q1996; 9(3): 126–133.
4.
ParseRR. Quality of life: sciencing and living the art of human becoming. Nurs Sci Qt1994; 7(1): 16–21.
5.
HighDMWhitehousePJPostSGGuidelines for addressing ethical and legal issues in Alzheimer disease research: a position paper. Alzheimer Dis Assoc Disord1994; 8: 66–74.
6.
BartlettHMartinW. Ethical issues in dementia care research. In: WilkinsonH (ed.) The perspectives of people with dementia: Research methods and motivations. London: Jessica Kingsley, 2002, pp. 47–61.
7.
SherrattCSoteriouTEvansS. Ethical issues in social research involving people with dementia. Dementia2007; 6(4): 463–479.
8.
SlaughterSColeDJenningsEConsent and assent to participate in research from people with dementia. Nurs Ethics2007; 14(1): 27–40.
9.
McKeownJClarkeAIngletonCActively involving people with dementia in qualitative research. J Clin Nurs2010; 19(13–14): 1935–1943.
10.
DewingJ. Participatory research: a method for process consent with persons who have dementia. Dementia2007; 6(1): 11–25.
11.
EllisC. Telling secrets, revealing lives: relational ethics in research with intimate others. Qual Inq2007; 13(1): 3–29.
12.
GuilleminMGillamL. Ethics, reflexivity, and “Ethically important moments” in research. Qual Inq2004; 10(2): 261–280.
13.
BeuscherLGrandoVT. Challenges in conducting qualitative research with individuals with dementia. Res Gerontol Nurs2009; 2(1): 6–11.
CrookesPDaviesS. Research into practice: essential skills for reading and applying research in nursing and health care. Edinburgh: Baillière Tindall, 1998.
16.
HewittJ. Ethical components of researcher-researched relationships in qualitative interviewing. Qual Health Res2007; 17(8): 1149–1159.
17.
JuritzenTIGrimenHHeggenK. Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees. Nurs Ethics2011; 18(5): 640–650.
18.
LutzenKDahlqvistVErikssonSDeveloping the concept of moral sensitivity in health care practice. Nurs Ethics2006; 13(2): 187–196.
19.
JaegerSM. Teaching health care ethics: the importance of moral sensitivity for moral reasoning. Nurs Philos2001; 2(2): 131–142.
20.
VetlesenAJNortvedtP. Følelser og moral [Sensibility and moral]. 2nd ed. Oslo: Gyldendal Norsk Forlag, 2000 (in Norwegian).
21.
BlumLA.Compassion. In: RortyAOE (ed.) Explaining emotions. Berkely and Los Angeles, CA: University of California Press, 1980.
22.
PrattR. Nobody’s ever asked how I felt. In: WilkinsonH (ed.) The perspectives of people with dementia: research methods and motivations. London: Jessica Kingsley, 2002, pp. 165–182.
23.
NormannHKNorbergAAsplundK. Confirmation and lucidity during conversations with a woman with severe dementia. J Adv Nurs2002; 39(4): 370–376.
24.
KrohneKSlettebøÅBerglandA.Cognitive screening tests as experienced by older hospitalised patients: a qualitative study. Scand J Caring Sci2011; 25(4): 679–687.
25.
SabatSR. Capacity for decision-making in Alzheimer’s disease: selfhood, positioning and semiotic people. Aust NZ J Psychiatry2005; 39(11–12): 1030–1035.
26.
GarandLLinglerJHConnerKODiagnostic labels, stigma, and participation in research related to dementia and mild cognitive impairment. Res Gerontol Nurs2009; 2(2): 112–121.
27.
BurgenerSCDickerson-PutmanJ. Assessing patients in the early stages of irreversible dementia. J Gerontol Nurs1999; 25(2): 33–41.
28.
UsherKHolmesC. Ethical aspects of phenomenological research with mentally ill people. Nurs Ethics1997; 4(1): 49–56.
29.
RichardsHMSchwartzLJ. Ethics of qualitative research: are there special issues for health services research?Fam Pract2002; 19(2): 135–139.
30.
KornJH. Illusions of reality: a history of deception in social psychology. Albany, NY: State University of New York Press, 1997.
31.
BenhamB. The ubiquity of deception and the ethics of deceptive research. Bioethics2008; 22(3): 147–156.
32.
KantIPatonHJ.
The moral law; Kant's Groundwork of the metaphysics of morals. New York: Barnes and Noble, 1967.
33.
BehuniakSM. The living dead? The construction of people with Alzheimer’s disease as zombies. Ageing Soc2011; 31: 70–92.
34.
DobbsDEckertJKRubinsteinBAn ethnographic study of stigma and ageism in residential care or assisted living. Gerontologist2008; 48(4): 10 pp.
35.
MilneA. The “D” word: reflections on the relationship between stigma, discrimination and dementia. J Ment Health2010; 19(3): 227–233.
36.
MarzanskiM. On telling the truth to patients with dementia. Western J Med2000; 173(5): 318–323.
37.
RiceKWarnerNTyeTTelling the diagnosis to patients with Alzheimer’s disease. Geriatricians’ and psychiatrists’ practice differs. BMJ1997; 314(7077): 376 pp.
38.
DownsMClibbensRRaeCWhat do general practitioners tell people with dementia and their families about the condition? A survey of experiences in Scotland. Dementia2002; 1(1): 47–58.
39.
SabatSRJohnsonASwarbrickCThe “demented other” or simply “a person”? Extending the philosophical discourse of Naue and Kroll through the situated self. Nurs Philos2011; 12(4): 282–292.
40.
HemMHHeggenKRuyterKW. Questionable requirement for consent in observational research in psychiatry. Nurs Ethics2007; 14(1): 41–53.
41.
FuglestadOWadelCWadelCC.Og kven si skuld er det? ein arbeidslaus mann sin kamp for sjølvrespekt og eit verdig liv. Feltarbeid i prosess - ny metodedel [Now, whose fault is that? The struggle for self-esteem in the face of chronic unemployment. Field Work as a Process]. 1st ed. Kristiansand: Høyskoleforlaget, 2011(in Norwegian).
42.
Declaration of Helsinki (1964). BMJ1966; 313(7070): 1448–1449.
