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Research collaboration with older persons

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Institute of Neuroscience and Physiology

In a recently published article, fourteen researchers’ experiences of including older persons in the research process are studied. This type of collaboration means that older persons are not only subjects of research but active participants who contribute with unique knowledge and experience. Senior researcher Synneve Dahlin Ivanoff answers questions about the study and the topic, which is also part of Associate Professor Qarin Lood’s research project and a component of Isak Berge’s PhD thesis.

Democratic perspective and deeper understanding

How do you define research collaboration with older persons?

“We define research collaboration with older persons as a complex concept that encompasses various approaches and methods. In our study, we define it from a democratic perspective, where older persons actively participate in the research process.”

“Research collaboration is based on the idea that all people, regardless of age and ability, have the right to have their voices heard in research. We view older persons as more than just sources of data.”

“We recognize and value the scientific knowledge that researchers possess, but we also acknowledge the experiential knowledge that older persons have related to aging and health.”

What can be achieved through the inclusion of older persons in the process?

“By including older persons in the research process, we can achieve a deeper understanding of their experiences and needs. This can lead to new perspectives and knowledge that contribute to improving their quality of life and well-being. Thus, research collaboration with older persons becomes an essential part of our research.”

What does such collaboration or active participation look like?

“It can vary depending on the project and target group. It may involve older persons participating in several aspects, from planning to implementation and dissemination of results. This could include contributing ideas, participating in data collection, interpreting results, and helping disseminate research findings.”

About the study

You conducted focus groups; can you tell me about that?

“Yes, the focus group method is a qualitative research approach that encourages interaction and discussion among research participants. It provided us with a collective understanding of researchers’ experiences in research collaboration.”

Which researchers participated?

“Fourteen researchers from Southern Sweden participated, representing various disciplines, including humanities, social sciences, medicine, and health sciences. We selected these fourteen researchers based on specific criteria to ensure both breadth and diverse discussions and to ensure that participants had common ground for meaningful dialogue.”

Challenges and the way forward

What challenges exist when it comes to involving older persons in research?

“We believe that academia faces several challenges in involving older persons in research. These challenges include age discrimination, resource limitations, health issues, and the fact that academic culture can sometimes be exclusive and difficult for non-academics to navigate.”

“Older persons may also struggle to understand and communicate complex scientific concepts, which can hinder their full participation in the research process.”

What can researchers do to address these challenges?

“It is essential for researchers to take responsibility for including older persons in their work. This may involve seeking funding to support their participation, adapting communication methods to be more accessible, and working to change academic culture to be more welcoming and inclusive.”

“Researchers should also act as ‘navigators’, helping older persons navigate the academic world and avoiding imposing their worldview. By doing so, researchers can contribute to reducing epistemic injustice and making research more equitable and inclusive.”

Anything specific to consider when collaborating with older persons in the research process?

“To effectively collaborate with older persons in the research process, it is crucial to develop a shared understanding of the world through open dialogue. We must work across disciplinary boundaries and establish consensus on important issues.”

How does this work?

“Building trust and communicating effectively with older persons are essential skills. Academic institutions should provide resources and infrastructure, such as programs for building long-term trust relationships, to support researchers in developing these competencies.”

“Funders also play a vital role. If funding organizations provide necessary resources, they can ensure that researchers conduct high-quality research involving older persons in a meaningful way.”

 

 

Main results of the study
  • The main results of the study revealed an overarching theme describing research collaboration as a delicate balance between scientific quality and ethics on one hand, and the needs and abilities of older persons on the other. Researchers must strike a balance between achieving the highest scientific quality and considering the needs and abilities of the older persons they collaborate with. It is crucial not to compromise research quality while also taking ethical considerations into account.
  • Furthermore, researchers experience that collaborating with older persons in research can pose a risk to research independence. This is because power shifts from the researcher to the older person, and this shift in power dynamics may lead to scientific knowledge becoming secondary. It is essential to be aware of this risk and find ways to preserve research independence and integrity.
  • As researchers, it is important to strive for engagement from persons who are as representative of the group as possible. Researchers should also make efforts to understand barriers to fair representation and consider this in the presentation of results and conclusions. Avoiding negative stereotypes and thinking innovatively about research location, content, and data collection contribute to a more equitable and balanced representation and presentation of findings.
  • Researchers also recognize that academia has discriminatory power structures, a form of discrimination that a researcher may find unethical to be a part of. These power dynamics persist without room for questioning simply because they are established structures, and this is described as the way it has always been.

Dahlin-Ivanoff, S., Berge, I., Barenfeld, E. Lood Q. Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health. Res Involv Engagem 10, 6 (2024). https://doi.org/10.1186/s40900-024-00540-y.

Area
Health and medicine
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