Theoretical basis and instrumentation

Principal investigator: Helena Leino-Kilpi, Professor emerita, Nurse director, PhD, MEd, RN, FAAN, FEANS, MAE,
Department of Nursing Science, University of Turku
Turku University Hospital
helena.leino-kilpi(a)utu.fi

Research team:
Saija Inkeroinen, Doctoral researcher, MHSc, BHSc, PHN, RN, Department of Nursing Science, University of Turku
Jouko Katajisto, Statistician, MSocSc, Department of Mathematics and Statistics, University of Turku
Minna Stolt, University Lecturer, Docent, PhD, Podiatrist, FEANS, FFPM RCPS(Glasg), Department of Nursing Science, University of Turku
Heli Virtanen, University Teacher, Docent, PhD, RN, Department of Nursing Science, University of Turku

Partners in Turku University Hospital:
Karolina Olin, Patient Safety Manager
Päivi Parjanen, Patient Ombudsman
Hanna Vuorio, Director of Nursing

The aim is to develop the philosophical and conceptual basis of empowering patient education, based on the existent literature and real-life situations. In this development, a fundamental assumption is that patients have a right to know about their health and care. In this right, knowledge is a key component of patient empowerment.

First part: Patients’ right to know will be analyzed by conducting a scoping review. The aim is to scope research-based evidence about patients’ right to know and assess its quality to identify knowledge gaps and to indicate the direction for future studies about patients’ rights.

Second part: Patients’ right to know will be analyzed with a register-based study, including patients’ and their family members’ feedback, patient ombudsman complaints, and patient-reported patient safety incident reports in one hospital district in Finland. The aim is to analyze factors associated with the patients’ right to know, and model factors supporting the right.

Publications: 

Richards, M., Inkeroinen, S., Katajisto, J., Muje, S., Virtanen, H., & Leino-Kilpi, H. (2023). Empowering Healthcare Through User Feedback: A Multidimensional Analysis of the Knowledge. Patient Preference and Adherence, 17, 3155–3165. https://doi.org/10.2147/PPA.S425866

Inkeroinen, S., Virtanen, H., Stolt, M., & Leino-Kilpi, H. (2023). Patients’ right to know: A scoping review. Journal of Clinical Nursing, 32(15-16), 4311–4324. https://doi.org/10.1111/jocn.16603

Doctoral researcher: Saija Inkeroinen, MHSc, BHSc, PHN, RN,
Department of Nursing Science, University of Turku
saanin(a)utu.fi

Supervisors:
Helena Leino-Kilpi, Professor emerita, PhD, MEd, RN, FAAN, FEANS, MAE, Nurse Director, Department of Nursing Science, University of Turku and Turku University Hospital
Minna Stolt, Professor (acting), PhD, Podiatrist, FEANS, FFPM RCPS(Glasg), Department of Nursing Science, University of Turku
Heli Virtanen, University Lecturer, Docent, PhD, RN, Department of Nursing Science, University of Turku

The aim of this study is to analyze patients’ right to know. The empowering knowledge is applied to analyze the realization of the right and social determinants of health associated with it.

The sample will be patients with cancer, the data will be collected with several validated instruments and analyzed with statistical methods. The anticipated results include a descriptive model of the realization of patients’ right to empowering knowledge to contribute to the equal realization of patient rights.

Doctoral researcher: Silja-Elisa Eskolin, RN, PHN, MHSc, MTh,
Department of Nursing Science, University of Turku
seesko(a)utu.fi

Supervisors:
Heli Virtanen, RN, PhD, Docent, University lecturer, Department of Nursing Sciences, University of Turku.
Mervi Siekkinen, RT, PhD, Turku University Hospital, Western Finland Cancer Centre (FICAN West)

The object of this three-phase study is to construct (Phase I), develop (Phase II) and evaluate (Phase III) theoretical construct of power of adults with type 1 diabetes in the context of their health and care to allow better recognition and acknowledgement of individual power in this target group which can then be used to further develop ways to support it.

Phase I: a) Systematic qualitative review and metasynthesis of the power of adults with noncommunicable diseases in professional-patient relationships and b) an empirical observational study of care meetings between adults with type 1 diabetes and their care providers.

Phase II: Development of an instrument including an expert panel and a pilot study.

Phase III: Online survey using the instrument developed in phase II.

Principal investigator: Helena Leino-Kilpi, Professor, Nurse Director, PhD, MEd, RN, FAAN, FEANS, MAE,
Department of Nursing Science, University of Turku
Turku University Hospital
helena.leino-kilpi(a)utu.fi

Psychometrics of EKhp and RKhp instruments (©Leino-Kilpi, Salanterä, Hölttä 2003) were evaluated with an international sample of orthopaedic patients. Based on it, an open-access article was published.

Validity and reliability will be evaluated in every new data collection.

If you are interested in the instruments, you can apply for permission to use them here.

Publications:

Frías, C. E., Casafont, C., Cabrera, E., & Zabalegui, A. (2022). Validation of the Spanish Version of the Double Knowledge Expectations and Received Knowledge Significant Other Scale for Informal Caregivers of People with Dementia (KESO-DEM/RKSO-DEM). International Journal of Environmental Research and Public Health, 19(9), 5314. https://doi.org/10.3390/ijerph19095314

Leino-Kilpi, H., Inkeroinen, S., Cabrera, E., Charalambous, A., Fatkulina, N., Katajisto, J., Sigurðardóttir, Á. K., Sourtzi, P., Suhonen, R., Zabalegui, A., & Valkeapää, K. (2020). Instruments for Patient Education: Psychometric Evaluation of the Expected Knowledge (EKhp) and the Received Knowledge of Hospital Patients (RKhp). Journal of Multidisciplinary Healthcare, 13, 1481-1505. https://doi.org/10.2147/JMDH.S271043

Poraharju, J. (2024). The social determinants of health in empowering patient education intervention studies : Integrative literature review. University of Turku, Department of Nursing Science. Turku, Finland. (Master’s thesis).