The definition of patient participation is multifaceted but often reduced to solely implicate the involvement in treatment decisions. In many countries, including Sweden, there is a current shift from patient-centered care to person-centered care. This emphasizes the importance to view the patient as an equal partner and always include his or her description of their unique situation. To facilitate the participation of patients and to put their needs first, we need a wider understanding of how participation is interpreted and experienced by the patients themselves. Hence our aim was to examine this among patients with gynecological, hematological, head-neck or upper gastrointestinal cancer.
A qualitative cross-sectional study was carried out. This included all patients in the Stockholm-Gotland region, diagnosed in 2016 with one of the above-mentioned cancer types. A free-text question was formulated which asked the participants to describe their experiences of participation. The question was included in a larger questionnaire study from the Regional Cancer Center and sent out to 1658 patients. Framework Analysis was used as the method to analyse and interpret the data.
A total of 434 participants chose to answer the study specific free-text question and 222 of those answers were deemed to meet the aim of the study. The analytical process resulted in three themes; communication, staff attitudes and relation. Above all, the participants described how individualized information and a perceptive attitude among staff were key prerequisites for participation. Furthermore, they pointed out that absence of continuity became an obstacle for creating meaningful relations with their care provider and thus hindering their participation.
To meet the current and future demands of individualized cancer care we need to redefine our understanding of patient participation. The emphasis, according to patients, should be on facilitating conditions to aid participation. Our understanding is that these conditions resonate the key aspects of person-centered care. The challenge lies in implementing person-centered care in the whole team and across each patient’s cancer trajectory.
Clinical trial identification
Legal entity responsible for the study
The Regional Cancer Center Stockholm-Gotland.
Has not received any funding.
All authors have declared no conflicts of interest.