The patients’ and caregivers’ perspective: In-hospital navigation aids for people with dementia- a qualitative study with a value sensitive design approach

ABSTRACT

People with dementia (PwD) have serious difficulties orienting themselves in a hospital environment. In this qualitative study, we asked PwD and their informal caregivers about requirements for assistive technology when navigating in in-patient care settings. We aimed to provide user-centered recommendations for the development of an in-hospital navigation aid following a value sensitive design approach. We conducted semi-structured interviews with two stakeholder groups as potential future users of in-hospital navigation aids: PwD (n = 10, age_mean = 83.9 years, MMSE_mean = 21.2) and informal caregivers (n = 10, age_mean = 75.9 years). The interviews were evaluated using qualitative content analysis in a multistage process involving six members of a self-help group for relatives of PwD as co-researchers. Independence and relief/respite were the most important values regarding assistive technology for PwD. Informal caregivers attributed greatest importance to safety and relief/respite. The underlying values of these stakeholder groups contribute to recommendations for designing new assistive technologies for patient-centered in-patient care: Assistive technology needs to overcome age- and disease-related limitations, and the resulting individual risks, while providing subsidiary assistance to maintain the desired independence of PwD for as long as possible.

KEYWORDS:

• cognitive impairment
• older adults
• usability

Disclosure statement

Stefan Teipel has done the listed works below (all in Germany). MSD Sharp & Dohme GmbH, Lindenplatz 1, 85540 Haar: 11/09/2018 – Quality circle for physicians in Kühlungsborn, Talk: ‘Dementia and Diabetes – current report’. 14/11/2018 – MSD Expert‐forum: NAB Alzheimer in Munich, participator as consultant. 13/08/2019 – Event ‘Diabetes and Dementia’ in Rostock, Talk: ‘Dementia and Diabetes – current report’. ROCHE Pharma AG, Emil‐Barell‐Str. 1, 79639 Grenzach‐Wyhlen: 12/09/2019 ‐ 3. Nationales Advisory‐Board in Frankfurt (Main), participator as consultant. 27/09/2019 – ROCHE Symposium at the DGN Congress in Stuttgart, Talk: ‘Amyloid as target for diagnosis and treatment in Alzheimer´s disease’. Biogen GmbH, Riedenburger Straße 7, 81677 München: 23/04/2020 – Biogen Advisory Board Session. 28/04/2020 – Biogen Advisory Board Session. 18/09/2020 – Biogen Advisory Board Session. Dr Willmar Schwabe GmbH & Co. KG, Ottostr. 24, 76227 Karlsruhe: 22/01/2021 – Virtual Advisory Board. The other authors declare that there is no conflict of interest.

Additional information

Funding

This work was supported by the European Union (EFRE) [TBI-1-103-VBW-035, TBI-V-1-100-VBW-035, TBI-V-1-101-VBW-035].