On User Involvement in Research on Ageing and Health

The aim of this thesis was to explore the perceptions of, prerequisites for and benefits of user involvement among older people, persons with functional impairments and other user groups important to the research area. By using an adapted conceptual tool to categorize the various user involvement studies comprising the thesis, the aim wasalso to reflect on the importance of study design for the outcomes of the user involvement, and thus to contribute to the development of generalizable knowledge and cumulative knowledge in research on ageing and health.The PhD thesis consists of four empirical studies that are linked to four different research projects. Two of the studies constituted research about user involvement and had a quantitative design, whilst two studies consisted of research with user involvement and were qualitative in their design.Study I consisted of a study with user involvement and aimed to test and evaluate an mHealth application for older people with mild cognitive impairment (MCI) and their informal carers prior to its launch in a large-scale randomized controlled trial. The user satisfaction evaluation was conducted via a structured interview in a clinicalenvironment with user representatives for both user groups (N=38). Study II comprised the second study with user involvement and focused on a research circle where researchers (N=3) and user group representatives (N=12) with an interest and experience of issues related to housing and health in Sweden during three sessions (3x 3h) strived to untangle the complex issue of accessible housing provision in Sweden.Study III (N=881) was a quantitative study about user involvement and consisted of a survey study (online/paper/phone) directed at older people in the general population and aimed to explore their awareness of and attitudes to user involvement in research. The second quantitative study (Study IV; N=147) was directed at older people from senior citizens organisations and people with functional impairments from disabilityassociations. The study was linked to the Citizen Science (CS) initiative on housing accessibility and aimed to evaluate the benefits of this project in terms of changed attitudes and acquired skills among its users. The evaluation consisted of two online questionnaires that participants were asked to complete prior to (pre-Q) anddirectly after (post-Q) the CS initiative.To address the overall aim of the thesis, a categorization matrix was used to analyse the thesis findings, which was largely based on a conceptual tool (Jönson et al. 2021) containing four considerations of user involvement (Why?; Who?; When?; How much?) developed within a Swedish research program dedicated to the study of user involvement in research on ageing and health. The analysis indicated a connection between willingness to be involved in research and higher levels of formal education among users; that mobile digital literacy is an important prerequisite for older people and people with disabilities to be involved in research involving mobile technology.The main benefits of user involvement in research as perceived by older people and other user groups were that it could lead to new insights into complex problems. However, it was found that user involvement does not always necessarily lead to benefits and there are indications that this has to do with the depth of involvement.Thus, conducting research with user involvement requires sensitivity towards the prerequisites of different user groups and insights into what possible benefits it is reasonable to expect from the user involvement. The adapted conceptual tool and the categorization made from it within this thesis, constitutes an attempt to systematicallyvalue user involvement. Namely, to what extent it has the potential to contribute to the development of generalizable knowledge and cumulative knowledge in research on ageing and health

Feasibility-Usability Study of a Tablet App Adapted Specifically for Persons with Cognitive Impairment—SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia)

Population ageing within Europe has major social and economic consequences. One of the most devastating conditions that predominantly affects older people is dementia. The SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia) project aims to develop and test a health application specifically designed for people with mild dementia. The aim of this feasibility study was to evaluate the design of the SMART4MD protocol, including recruitment, screening, baseline examination and data management, and to test the SMART4MD application for functionality and usability before utilization in a full-scale study. The feasibility study tested the protocol and the app in Spain and Sweden. A total of nineteen persons with cognitive impairment, and their informal caregivers, individually performed a task-based usability test of the SMART4MD app model in a clinical environment, followed by four-week testing of the app in the home environment. By employing a user-centered design approach, the SMART4MD application proved to be an adequate and feasible interface for an eHealth intervention. In the final usability test, a score of 81% satisfied users was obtained. The possibility to test the application in all the procedures included in the study generated important information on how to present the technology to the users and how to improve these procedures

Interaktion, reflektion och upplevelse : En studie av vad god kvalitet inom interaktiv konst innebär enligt konstnärer verksamma i Estland

Interaktiv konst är ett samlingsbegrepp för konstverk som är datorbaserade och där en interaktion äger rum mellan systemet och dess användare. Området har beröringspunkter med interaktionsdesign bland annat beträffande utformandet av gränssnitt. Inom interaktionsdesign finns formulerade kvalitetskriterier, men motsvarande saknas inom interaktiv konst. Sådana kriterier kan på sikt leda till att utbildning och arbetsmetoder utvecklas och förbättras. Syftet med denna studie var att undersöka vad som kännetecknar god kvalitet inom interaktiv konst enligt konstnärer verksamma i Estland. Valet av land motiverades av att studien utgjorde en del i ett Östersjöprojekt där värderingar och tillvägagångssätt hos personer som skapade produktioner inom medieteknik i denna region undersöktes. Intervjuer gjordes med åtta konstnärer. Resultatet av studien visar att god kvalitet inom interaktiv konst kan delas in i följande kategorier: material, form, syfte och process. De tre första utgör produktkvaliteter, den sista en processkvalitet. Vidare framkom att det hos konstnärerna förekommer olika uppfattningar om syftet med interaktiv konst. För vissa är det underhållning för andra reflektion. Detta talar för att det inte är önskvärt att ett enda verk uppfyller samtliga kvalitetsaspekter. Vid utformandet av ett verk bör konstnären istället fundera över vilka kvalitetsaspekter som är viktiga i det specifika fallet.Digitala kreatörers värderingsprakti

Interaktion, reflektion och upplevelse : En studie av vad god kvalitet inom interaktiv konst innebär enligt konstnärer verksamma i Estland

Interaktiv konst är ett samlingsbegrepp för konstverk som är datorbaserade och där en interaktion äger rum mellan systemet och dess användare. Området har beröringspunkter med interaktionsdesign bland annat beträffande utformandet av gränssnitt. Inom interaktionsdesign finns formulerade kvalitetskriterier, men motsvarande saknas inom interaktiv konst. Sådana kriterier kan på sikt leda till att utbildning och arbetsmetoder utvecklas och förbättras. Syftet med denna studie var att undersöka vad som kännetecknar god kvalitet inom interaktiv konst enligt konstnärer verksamma i Estland. Valet av land motiverades av att studien utgjorde en del i ett Östersjöprojekt där värderingar och tillvägagångssätt hos personer som skapade produktioner inom medieteknik i denna region undersöktes. Intervjuer gjordes med åtta konstnärer. Resultatet av studien visar att god kvalitet inom interaktiv konst kan delas in i följande kategorier: material, form, syfte och process. De tre första utgör produktkvaliteter, den sista en processkvalitet. Vidare framkom att det hos konstnärerna förekommer olika uppfattningar om syftet med interaktiv konst. För vissa är det underhållning för andra reflektion. Detta talar för att det inte är önskvärt att ett enda verk uppfyller samtliga kvalitetsaspekter. Vid utformandet av ett verk bör konstnären istället fundera över vilka kvalitetsaspekter som är viktiga i det specifika fallet.Digitala kreatörers värderingsprakti

Understanding the wicked problem of providing accessible housing for the ageing population in Sweden

While accessible housing is known as important to promote healthy ageing, the societal issue of providing accessible housing for the ageing population bears the characteristics of a “wicked problem”. The aim of this study was to gain a better understanding of crucial variables for decision-making about the provision of accessible housing for the ageing population in Sweden. Materials used for a deductive content analysis were elicited through a research circle involving three researchers and twelve non-academic representatives. Brown and colleagues’ conceptual five-dimension framework to address wicked problems was used for the understanding of crucial variables in decision-making about housing provision. The findings show that such reasoning is dominated by the socioeconomic dimension. Findings in the biophysical dimension reveal well-known challenges pertaining to the definition and interpretation of the concept of accessibility and its operationalization. The dimensions are intertwined in a complex manner, which is essential for effective and efficient decision-making. The findings could make decision-makers aware of the diversity of individual thinking involved when addressing this wicked problem. Acting upon the crucial variables identified in this study could contribute to progressive decision-making and more efficient ways to develop and provide accessible housing to promote health ageing

Awareness of and attitudes towards public involvement in research on ageing and health among older people in Sweden

BACKGROUND: While the importance of involving older people in research is increasingly acknowledged, quantitative studies exploring the perspectives of larger samples of older people who take an active role in research on ageing and health are scarce. The aim of this study was to investigate the awareness of and attitudes towards public involvement in research on ageing and health among older people in Sweden.MATERIALS AND METHODS: Data derived from a survey (N = 881) of people aged 60 years or older in Sweden. Demographics, self-rated health, and attitudes were analysed using descriptive statistics. Awareness of and previous active involvement in research were analysed using chi-square tests and Mann Whitney tests. Factors associated with willingness to be actively involved in research were determined by logistic regressions.RESULTS: Of the 26% who responded (N = 881), 39% (n = 343) were aware that they could be actively involved in research. Awareness and previous active involvement in research were significantly associated with a higher level of education. Public involvement was believed to enhance research communication and enable valuable contributions related to ageing. The proportion of respondents who were willing to be actively involved in research was significantly higher for respondents with previous experience and a higher level of education.CONCLUSIONS: Engaging older people in Sweden in research targeting active involvement in research presents a challenge. The study shows an over-representation of people with higher education, who tend to be more aware, have previous experience, and are more willing to be involved in research with public involvement. This implies a risk that groups with lower education are not represented, and that knowledge co-produced with mostly highly educated groups will lead to a biased picture. Further studies are needed to understand how an increased awareness of research and willingness to participate can be achieved. IRRID: RR2-10.2196/17759