This study offers insights in the view of research from the perspective of frail older people. Our main finding was that research was described as a complex yet important phenomenon, and as something that ought to have a natural part in society to contribute to development. However, research was also described as existing outside what frail older people regarded as their area of responsibility and competence.
To the best of our knowledge, no previous study has reported on frail older people’s view on research, and our study thus adds to the existing knowledge base. The two sub-categories A driving force for societal development and A benefit based on lived experiences jointly explain why and when research was experienced as valuable. The participants expressed research being valuable, important and necessary for societal progress. At the same time, research was expressed as valuable when beneficial for the individual as described in the category A driving force for societal development. This finding is comparable with statements of what research is, as it is described by the Swedish research council [19], being instrumental in development of individuals as well as societies. Further, in the category A benefit when based on lived experiences it was emphasised that for research to be beneficial for frail older people, research should be related to challenges faced by them as a group.
As described by Bratteteig and Wagner [20], patient and public involvement in research might also include a risk of power imbalance and this risk is even higher when frail older people are involved as their voices might be diminished by stereotypic views of ageing and frailty [21]. The participants of our study perceived research as inaccessible, which might create a distance between researchers and the public. Locock et al. [22], further report on how participants with experience of being actively involved in research projects might view themselves as outsiders, lacking expert knowledge and being the one's posing naïve questions. Experiences like these might lead to an imbalance in the relationship between involved partners. The phenomenon of power imbalances in research studies actively involving patients and the public is thus not new. Over the years, unequal power relationships in research studies involving researchers and non-academics have been highlighted in several studies [23,24,25]. In addition, unequal relationships have been found to be a barrier for user involvement [26]. In order bridge such barriers, previous research studies have underlined that researchers need to put emphasis on communication, information about the topic and aim of the study, and plan for enough time and resources to meet individual needs of those involved [13, 27]. Thus, interpreted in relation to previous research on how to involve vulnerable groups in research studies [28] the present findings suggest that researchers carefully anchor research questions and dissemination of research findings with the frail older people themselves.
The present findings also suggest that research was perceived as challenging, not understanding all of the information that had been given. Health literacy is the ability to handle information, including the comprehension of verbal and written health information. Low health-literacy skills can affect all age groups [29] but when we age, people become more vulnerable to inadequate health literacy [30]. One way to make research findings more understandable is to facilitate translation of research findings [31, 32]. To make research findings understandable and usable, it is important to know how to optimally translate and disseminate research. Several models of how to translate research findings are available and in a recent literature review Esmail et al. [33] conclude that it is only through conscious use of knowledge translation theories, models and frameworks that implementation of research findings can be implemented in healthcare contexts. For example, it has been emphasised that research information should be disseminated in different ways through different media and communication channels. If being successful in making research findings more understandable for frail older people, healthcare services that build on research have the potential to become more effective, thus leading to better utilisation of care and outcomes for the older population [34].
As visualised in the present findings, a possible barrier to involvement of frail older people in research is that they might view research as something that is conducted by others and that requires specific competences and that they had great respect for both research and researcher. Trusting the researcher and the research is considered an essential prerequisite for involvement in research [35, 36]. However, research has found that trust is a dynamic concept involving building a relationship and interacting in respectful ways, but this trust can easily be broken [37]. Thus, even though the importance of involving people outside academia in research concerning health service design has been emphasised [37], it might not come as a surprise that the participants of the present study were somewhat hesitant towards active involvement in research processes as they are not used to view themselves as partners in research studies. To clarify the added value of frail older people’s contribution to research, how and when to be involved and to strengthen frail older people’s role as research partners is therefore important tasks for researchers in addition to a mutually agreed relationship important for both parties, and for the conduct of the research.
Further, to be sensitive to frail older people’s individual needs, preferences and prerequisites for involvement in research studies has also been pointed out as important for researchers to consider [12]. Training programs at the start of involvement in research projects have been shown to help people outside academia to understand why their involvement is important and which options there are to work together with researchers (e.g., in design, data collection, interpretation and dissemination). People outside academia felt more confident and gained a better understanding of how to contribute with their own experiences [14]. In order to conduct high quality research that is beneficial in societal development, it is, however, imperative to start out from the target groups’ views on research.
Limitations
In this study, some limitations should be considered. First, the interviewed frail older people in general had a positive attitude towards research and it is important to acknowledge that there might be more negative attitudes among frail older people in other cultural contexts. There might also be practical reasons that hinder frail older people from involvement in research, such as communication and cognitive difficulties, transportation issues and socio-economic factors [38]. Previous research [14] also shows that one incitement for participation in research is the possibility to access healthcare services otherwise not available and thus this could be one reason for a positive attitude. However, it should be noted that the participants in this study were recruited due to their participation in another research project and thus most likely other incentives for their participation. Further, the findings illustrate complexities that comes with research and a range of views and attitudes about research according to frail older people. Second, healthcare is raised as an important area for research with and for frail older people. One could assume that individual experiences govern which parts of healthcare research that is emphasised by the individuals as important to research. This could of course generate bias. However, that healthcare research is raised as an important area to research is not surprising since the participants were asked for participation within a healthcare context and also had former experience of participation within this context.