Cancer patients’ knowledge expectations during illness trajectory

University of Turku, Department of Nursing Science, Finland
Principal investigator (PI): Heli Vaartio-Rajalin, RN, PhD, Post-doc Researcher,
University of Turku, Department of Nursing Science, Finland
Contacts: Email. heli.vaartio-rajalin(a)abo.fi
+358 (50)5742382

 

The goal of this study was to develop a model for empowering patient education praxis for adult cancer patients during their illness trajectory. The model had two parts: a self-report instrument for identifying and communicating cancer patients’ knowledge expectations during illness trajectory; and an inter-professional screening instrument for cancer patients´ education process (patients´ cognitive resources, knowledge expectations, comprehension outcomes during illness trajectory).
This study combines several datasets from both cancer patients´ and health care professionals´ point of view:

Phase I, 2012-2013: The identification of patients´ cognitive resources, knowledge expectations and information seeking strategies was produced by focus group interviews (n = 37) from oncologic patients in different stages of illness trajectory and from former cancer patients in Cancer Foundation as well as former cancer patients doing support visits. The informants were recruited from Cancer Foundation, and from a hospital (oncologic wards, policlinics) in Finland.

Secondly, in-depth interviews (patients from focus-group sample, n = 16) had focus on identification of significant clinical and situational factors affecting patients´ cognitive resources and knowledge expectations. The interview data was completed with patients´ drawings or conceptual maps explaining their cognitive resources, understanding of their illness and its care.

A third patient data was collected nationally from three hospitals (oncologic wards, policlinics) in Finland (n = 332) and Spain (n = 483) with the instrument Expected Knowledge of Hospital Patients, EKhp ©Leino-Kilpi, Salanterä, Hölttä 2003) in order to get a multicultural data. This 32-item (plus 13 sub-items) instrument measures empowering knowledge expectations.

Phase II, 2013: From the base of results of phase I, a self-report instrument for identifying and communicating cancer patients’ knowledge expectations during illness trajectory was developed
and validated in sample (n = 94) of actual and former cancer patients from four cancer clinics and Cancer Foundation.

Phase III, 2013-2014: The fifth dataset focused on health care professionals’ methods to assess their patients´ cognitive resources and knowledge expectations as well as methods for assessing patients´ comprehension during and after patient education. The data was collected with a method of focus group interviews from cancer nurses, oncologists, radiology nurses and occupational physicians (n = 65) from three hospitals, one private health care organization and a health care center.

Phase IV, 2014-2015: From the base of results of phase III, an inter-professional screening instrument for cancer patients´ education process was developed and evaluated in expert group of oncologic nurses, radiology nurses and oncologists (n = 25) from two cancer clinics as an e-survey.

Phase V, 2015-2016: Patient education intervention. The aim of this phase was two folded. First, the aim was to explore how application of the self-report instrument identifying and communicating cancer patients’ knowledge expectations during illness trajectory affects patients´ perception about their illness and its care, their functional status and their personal growth, in other words their empowerment in patient education. The self-report instrument was given to adult cancer patients at two cancer clinics during March-August 2016. These patients used this instrument in all contacts with health care personnel during the illness trajectory in order to express their knowledge expectations, and patient education is to be planned according to their expectations. Control group of patients got no self-report instrument but the traditional patient education. In both samples, the patients answered to three instruments (BIPQ: Brief Illness Perception Questionnaire, FACT-G: Functional Assessment of Cancer Therapy, and PTGI-SF: Posttraumatic Growth Inventory) before, during and after cancer management process. At the same time, we explored how this patient education intervention affects nurses, radiology nurses and oncologists perceptions about inter-professional collaboration (PINCOM-Q: Perceptions of Inter-Professional Collaboration Questionnaire).

Phase VI, 2016-2017: Model for empowering patient education praxis for adult cancer patients during their illness trajectory was published and disseminated.