Background: Patient participation in decision-making has produced many debates among health care professionals. The research evidence concerning patient participation in decision-making is not clear, and shows conflicting results.
Aims: To identify to what extent cancer patients participate in decision-making and to what extent background characteristics, information obtained and relationships with staff explain cancer patients' participation in decision-making.
Design/method: A structured questionnaire based on earlier research and qualitative interviews was designed. The questionnaire was completed by 273 cancer patients who were inpatients or outpatients in haematology, oncology clinics and other clinics at two university hospitals in Finland. The questionnaire consisted of five areas: (1) demographic data; (2) mood; (3) information obtained; (4) relationships with staff; and (5) decision-making. The scale used was ordinal. The data were analysed using descriptive statistics and nonparametric tests such as Mann-Whitney U-test, Kruskall-Wallis, and Wilcoxon matched-pairs signed-rank tests.
Results: The majority of the respondents perceived that they had participated in making treatment decisions at least to some extent, together with the physician. In decision-making about nursing care, respondents felt that they had participated most in decisions about personal hygiene, rest and sleep. Respondents' physical condition, marital status, age and time since diagnosis, as well as information obtained and relationships with staff, were associated with participation in decision-making.
Conclusion: This study provided evidence that some cancer patients participated in decision-making and felt participation to be important. Staff played a crucial role in patient participation in decision-making. In future, staff should work to improve cancer patients' opportunities to participate in decision-making in order that those who wish to be involved can do so.