Associate professor in gerontological care, Docent in clinical nursing science
Åbo Akademi University, Health sciences, Strandgatan 2, 65100 Vasa, Finland
USER INVOLVEMENT IN NURSING RESEARCH
An international trend is to involve clients and patients into developement and evaluation of health care services and nursing care. The aim of this service design is to develope health and nursing care which answer to the perceived needs of both actual and future clients and patients. However, actual and future service users should also be involved into research and co-creation in knowledge establishment.
In modern society the new knowledge is constructed in active co-creation with clients and patients – from delineation of the research aim to development of the research report (INVOLVE 2019). In other words, the users are not only contacted for empirical data collection such as interviews or surveys, but they are equal partners with researchers from the beginning of the research process to the end of it. This active co-creation process, synonymous to user involvement or Patient and Public Involvement (Stock et al. 2021) can be accomplished with different methods, but there are always the four central phases in that process: co-ideation, co-design, co-implementation and co-evaluation (Pearce et al. 2020).
User involvement through these collaborative phases are shown to add knowledge of all participants´ involved into the research process when experiences, insights and perspectives are integrated and the new knowledge about certain phenomenon is accumulated in a continuous reciprocal dialogue (Fisher et al. 2020, Halvorsud et al. 2021). User involvement has also been shown to lead to more effective health behaviour (Nutbeam & Muscat 2021). Furthermore, through user involvement the concepts used in an intervention, instrument, model or what ever product the research aims to develop are already user-centered and user-friendly insteadt of professional terminology only. Therefore there is usually no need for additional testing of the content validity or feasibility of the research results, for these aspects are embedded into co-creation process! One representative example of this can be seen in a our study (Vaartio-Rajalin et al. 2020). In addition, it is very useful to involve also the health care and nursing professionals into the research processes together with the patients, for when professionals are involved too, there is usually no need for an additional result implementation study, either.
The central aspect of user involvement in nursing research is in line with the core of nursing care: respecting the individuals´ absolute and relational dignity (Franco et al. 2021) and making it visible by making possible his/her systematic participation into planning and decision-making concerning one´s own life and care. To conclude: user involvement in research means that knowledge is not developed to patients, but with them; and from my own experience I can confirm that it is a truly empowering learning process also to an experienced nurse and researcher. After experiencing and leading a research project with user involvement I would not want to have any other kind of research projects.
Fischer B., Peine A. & Östlund B. (2020) The Importance of User Involvement: A Systematic Review of Involving Older Users in Technology Design. The Gerontologist 60(7), e513–e523. https://doi.org/10.1093/geront/gnz163
Franco H., Caldeira S. & Nunes L. (2021) Dignity in nursing: A synthesis review of concept analysis studies. Nursing Ethics 28(5), 734–749. https://doi-org.ezproxy.vasa.abo.fi/10.1177/0969733020961822
Halvorsrud K., Kucharska J., Adlington K., Rüdell K., Hajdukova E., Nazroo J., Haarmans M., Rhodes J. & Bhui K. (2021) Identifying evidence of effectiveness in the co-creation of research: a systematic review and meta-analysis of the international healthcare literature. Journal of Public Health 43, 197–208. https://doi.10.1093/pubmed/fdz126
INVOLVE. (2019) What is public involvement in research? https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/ (8th December 2022)
Nutbeam, D. & Muscat, D. M. (2021). Health Promotion Glossary 2021. Health promotion international 36(6), 1578–1598. https://doi.10.1093/heapro/daaa157
Pearce T, Shakeshaft A, Wayland S, McKay K. (2020) What is the co-creation of new knowledge? A content analysis and proposed definition. International Journal of Environmental Research and Public Health17, 2229. doi: https://doi.10.3390/ijerph17072229
Stock C., Dias S., Dietrich T., Frasha A. & Keygnaret I. (2021) Editorial: How can We Co-Create Solutions in Health Promotion With Users and Stakeholders? Frontiers in Public Health. https://doi.org/10.3389/fpubh.2021.773907
Vaartio-Rajalin H., Mattjus C., Nordblad J. & Fagerström L. (2020) PISER – Person-centered, Interactive, Systematic, Effective Rehabilitation for individuals with Parkinson – results of a pilot intervention. Neuro-physiology and Rehabilitation Journal 3, 1–7. https://doi.org/10.33805/2641-8991.124
Jūratė Macijauskienė, project coordinator
Živilė Kepežinskienė, project manager
Dinara Kozhakhmetova, responsible for WP4 Dissemination
Baituganova Aizhan, responsible for WP4 Dissemination