Nursing with people, not for the people: Collaborative knowledge communication
Authors: Diana Gabriela Simões Marques dos Santos1,2,3, Eduardo José Ferreira dos Santos2,4,5,6, Fernando Alberto Soares Petronilho2,7, António Fernando Salgueiro Amaral2
- 1. University of Coimbra, Coimbra, Portugal
- 2. Health Sciences Research Unit: Nursing (UICISA: E), Nursing School of Coimbra (ESEnfC), Portugal
- 3. Hospitais da Universidade de Coimbra, Unidade Local de Saúde de Coimbra, Coimbra, Portugal
- 4. Polytechnic University of Viseu, School of Health, Portugal
- 5. JBI Portugal Centre for Evidence-Based Practice, Portugal
- 6. JBI, The University of Adelaide, Australia
- 7. University of Minho, School of Nursing, Portugal
Introduction
When we talk about nursing, we naturally talk about care. However, care is not only what we do to look after people; it is also how we work with people to better care for them. In evidence-based healthcare, the importance of involving people in decisions about care is increasingly recognized as a crucial element of safe, effective, and person-centred healthcare.
This blog shares the story of an ambitious research project developed as part of a PhD program. We hope to create a model to promote the involvement of hospitalized people in decision-making about nursing care. Our story contributes to the broader discourse on transforming evidence-based healthcare from a model delivered to hospitalized people to one co-created with them.
In the spirit of the 2025 campaign, Collaborative Knowledge Communication goes beyond translating evidence into practice. It is also about listening to, adapting to, and learning from the people we care for. In this project, we explored how nurses and patients can make decisions together, sharing knowledge collaboratively and combining clinical expertise with personal experiences and preferences. In this interaction, both sides contribute different kinds of knowledge – explicit, implicit, tacit, and indigenous – showing how nursing care can be built together.
Background
Decision-making in nursing follows five phases: initial assessment, diagnostic activity, care planning, implementation, and final evaluation. Throughout these phases, the patient may be either a passive recipient or an active participant. The World Health Organization promotes an integrated, person-centred healthcare model in which professionals and service users co-produce care. This vision of co-production means that healthcare professionals and patients working together to plan, make decisions, and deliver care in a shared approach. In this regard, the WHO's 2016-2026 strategy advocates shared decision-making and personalised care plans as key interventions to support better health outcomes. However, while this vision is inspiring, implementing it in practice—especially in hospital settings—remains challenging. Knowing how to meaningfully involve people in their nursing care decisions is a moral and scientific imperative.
The problem and the search for answers
Hospital routines, paternalistic attitudes, communication gaps, and the way healthcare professionals perceive hospitalised people’s vulnerability can make the involvement of people more difficult. Our research demonstrates how to put ‘Power to the People’ into practice by promoting shared decision-making in the hospital context. It shows how nursing care can be co-created with patients by incorporating research evidence, nurses’ experiences, and people’s experiences and preferences. Bringing all these types of knowledge together makes decisions about care truly collaborative and centred on the person receiving it.
Results
Our systematic review reflects how hospitalized people perceive their involvement as an active process. This includes monitoring the care they receive, forming collaborative partnerships with nurses, participating in decision-making, and sharing their opinions. Key requirements to enable meaningful involvement include the central role of trust, effective communication, information exchange, and the quality of the relationship between the nurse and the patient.
However, people’s involvement is shaped by individual preferences, such as willingness to become involved, as well as external factors, such as limited access to information, the organization of care, nurses’ attitudes, and persistent paternalistic approaches. These findings enabled the production of meaningful practical recommendations for involving people in nursing care.
A qualitative study was conducted with 24 nurses from 11 internal medicine units and 8 general surgery units across three hospitals in central Portugal. Barriers to the involvement of people in decision-making about nursing care were identified at various levels. At the practice environment level, challenges included time constraints, heavy workloads, and organization of care. With regard to nursing practice, key factors included problems with conception of nursing care, and nurses’ attitudes toward involving patients in their own care.
Additionally, aspects related to patients and their families, such as information and knowledge, and family dynamics, emerged as significant influences. Despite these challenges, nurses consistently acknowledged the value of involving patients in decision-making about nursing care, recognizing it as essential to providing effective, patient-centred care. Nurses also described the strategies they use to promote involvement throughout the nursing process.
These results have important implications for both patients and nurses, highlighting that barriers to engagement must be addressed together. Collaborative knowledge communication plays a key role in this process, strengthening the sharing of different types of knowledge between both parties. By working together, nurses and hospitalized people can co-create truly patient-centred care, supported by communication.
In line with the vision of Collaborative Knowledge Communication, as part of our journey, we shared these results with citizens during the European Researchers' Night, gathering valuable feedback that will guide our future studies.
In addition, we developed a lay summary of systematic review results together with two contributors: one with experience of hospitalization and another without. This dissemination made the findings equally accessible to everyone, indicating how sharing knowledge can support better decision-making. One of the most rewarding aspects of this PhD journey has been sharing knowledge and receiving feedback in return, demonstrating how collaborative knowledge communication enriches both research and nursing care.
Next steps
We are currently listening to hospitalized people about how they are involved in decision-making about nursing care. In 2027, we hope to present a practical model to support nurses in involving patients in decision-making about nursing care. Beyond guiding clinical practice, this model is intended to serve as a training resource and inform policy.
This work reinforces a broader truth: evidence-based healthcare is not only about applying the best available evidence, but also about respecting the preferences, values, and goals of those we care for. Including different ways of knowing, and involving people with lived experience to co-create their nursing care is not an optional extra; it is central to providing meaningful, ethical, and effective care.
From an ethical point of view, hospitalised people have the right to be heard and to participate in choices that affect their own health. Scientifically, research shows that collaborative care decisions made collaboratively lead to better outcomes.
On this World Evidence-Based Healthcare Day, let us reaffirm our commitment to communicating and caring with people, not just for them. Because only together, through shared knowledge and mutual respect, can we build a future where nursing care is truly collaborative and informed by the best evidence.
Key take-home messages
- Evidence-based healthcare must always include the voices and choices of the people we care for.
- More than just a PhD journey, this initiative proposes a paradigm shift: moving from providing care to co-creating it with the people we support.
- Our story has emphasised collaborative knowledge communication, which strengthens sharing and decision-making.
References
Santos, D. G. S. M. D., Amaral, A. F. S., & Santos, E. J. F. D. (2024). Power to the people: Contributions to the involvement in decision-making about nursing care in hospital settings. Journal of Clinical Nursing, 33(12), 4525–4527. https://doi.org/10.1111/jocn.17492
Santos, D. G. S. M., Santos, E. J. F., Petronilho, F. A. S., & Amaral, A. F. S. (2025). People's experiences of their involvement in nursing care: A qualitative systematic review with meta-aggregation synthesis. Journal of Nursing Scholarship. https://doi.org/10.1111/jnu.70025
Toney-Butler, T. J., & Thayer, J. M. (2023). Nursing process. https://www.ncbi.nlm.nih.gov/books/NBK499937/
World Health Organization. (2015). WHO global strategy on integrated people-centred health services 2016-2026. https://iris.who.int/handle/10665/155002
Links to additional resources (i.e. publications, guidelines, organisational websites, videos etc.)
To link to this article - DOI: https://doi.org/10.70253/KJFJ1211
Links to additional resources
Santos, D., Santos, E., & Amaral, A. F. (2024). People's experiences of their involvement in nursing care: a systematic review protocol. BJGP Open, 8(4), BJGPO.2024.0048. https://doi.org/10.3399/BJGPO.2024.0048
Disclaimer
The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.
