TY - JOUR

T1 - 'We had conversations we wouldn't have had otherwise'-Exploring home-dwelling people with dementia and family members' experiences of deliberating on ethical issues in a literature-based intervention

AU - Skov, Sofie Smedegaard

AU - Berg, Marie Eva

AU - Andersen, Josefine Ranfelt

AU - Schou-Juul, Frederik

AU - Jensen, Anja M B

AU - Folker, Anna Paldam

AU - Lauridsen, Sigurd

N1 - © 2024 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

PY - 2024

Y1 - 2024

N2 - AIM: To explore home-dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia-related literature excerpts to facilitate conversations on ethical issues related to living with dementia.BACKGROUND: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home-dwelling people with dementia and their families are often lacking.DESIGN: An exploratory-descriptive qualitative study.METHODS: We conducted eight interviews with 14 home-dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study.RESULTS: Using excerpts from dementia-related literature was a feasible and acceptable way of initiating discussions on ethical issues among home-dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections.CONCLUSION: Based on the findings, it appears that the participants in this study felt that using excerpts from dementia-related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships.IMPLICATIONS FOR PATIENT CARE: This study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home-dwelling people with dementia and their families.REPORTING METHOD: We have adhered to relevant EQUATOR guidelines with the COREQ reporting method.PATIENT OR PUBLIC CONTRIBUTION: A healthcare professional working as a so-called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home-dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author.

AB - AIM: To explore home-dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia-related literature excerpts to facilitate conversations on ethical issues related to living with dementia.BACKGROUND: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home-dwelling people with dementia and their families are often lacking.DESIGN: An exploratory-descriptive qualitative study.METHODS: We conducted eight interviews with 14 home-dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study.RESULTS: Using excerpts from dementia-related literature was a feasible and acceptable way of initiating discussions on ethical issues among home-dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections.CONCLUSION: Based on the findings, it appears that the participants in this study felt that using excerpts from dementia-related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships.IMPLICATIONS FOR PATIENT CARE: This study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home-dwelling people with dementia and their families.REPORTING METHOD: We have adhered to relevant EQUATOR guidelines with the COREQ reporting method.PATIENT OR PUBLIC CONTRIBUTION: A healthcare professional working as a so-called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home-dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author.

U2 - 10.1111/jocn.17138

DO - 10.1111/jocn.17138

M3 - Journal article

C2 - 38528439

JO - Journal of Clinical Nursing

JF - Journal of Clinical Nursing

SN - 0962-1067

ER -