Stakeholder Requirements for an Ethical Framework to Sustain Multiple Research Projects in an Emerging Living Lab Involving Older Adults

Abstract

Living Lab (LL) research should follow clear ethical guidelines and principles. While these exist in specific disciplinary contexts, there is a lack of tailored and specific ethical guidelines for the design, development, and implementation of LL projects. As well as the complexity of these dynamic and multi-faceted contexts, the engagement of older adults, and adults with reducing cognitive and physical capacity in LL research, poses additional ethical challenges. Semi-structured interviews were undertaken with 26 participants to understand multistakeholder experiences related to user engagement and related ethical issues in emerging LL research. The participants’ experiences and concerns are reported and translated into an ethical framework to guide future LL research initiatives.

How to deal with the consent of adults with cognitive impairment involved in European geriatric living labs?

“…Therefore, older adults with neurocognitive disorders should be integrated in research projects, and are able to participate [ 7 ]. This is also in line with guidance related to work with older and/or disabled adults [ 8 – 16 ]. In this context, particular attention should therefore be paid to the ethical issues raised by cognitively-impaired older adults [ 5 , 7 , 17 ].…”

Living Senior Labs, ecosistemas de co-creación e innovación abierta con personas mayores: revisión sistemática de la literatura en Ciencias Sociales

“…Por último, en la mayor parte de las investigaciones analizadas se indica que en el proceso de recolección de datos participaron exclusivamente los usuarios mayores (por ejemplo, Alaoui & Lewkowicz 28 ; Vaziri et al 29 ; Wu et al 30 ; Konstantinidis et al 31 . En algunos estudios se amplía la recogida de información también a familiares de las personas mayores, a investigadores del laboratorio 13,[32][33][34] o a diferentes profesionales vinculados al Living Lab 18 .…”

“…Otro ejemplo de este tipo de productos, relacionado con la demencia, es el Living Lab vinculado al Data Drive Research and Innovation Programme (DDRI) de la Universidad de Coventry (Reino Unido), descrito en Callari et al 33,34 . El desarrollo de este ecosistema de innovación se lleva a cabo en dos tipos de entornos.…”

Mapping Stakeholder Perspectives on Engagement in Concussion Research to Theory

“…The first theme a "'focus on positive impacts" has similarities to other studies which suggest stakeholders may be more willing to engage in research where there is an emphasis on understanding the importance of individual contributions and confirmation that individual views collectively achieve meaningful results for others. 33 Moreover, stakeholders need to feel they are important members of the research team in order to sustain their engagement. 13 The need for trust and support can be achieved through face-to-face meetings, and making time to socialize with others on the team has been suggested in studies of generic stakeholders 13,[30][31][32][33] and is congruent with our second study theme, "build connections".…”

“…33 Moreover, stakeholders need to feel they are important members of the research team in order to sustain their engagement. 13 The need for trust and support can be achieved through face-to-face meetings, and making time to socialize with others on the team has been suggested in studies of generic stakeholders 13,[30][31][32][33] and is congruent with our second study theme, "build connections". The third enabler theme "offer financial assistance" is thought by some to be key to engagement.…”