In this article, we report the findings of a first intervention study to increase patients’ perceived ability to counteract abuse in health care. It was encouraging to see that almost 40 % of the patients who received an invitation participated in the study and, on average, dedicated 41 min to work with and evaluate the program. In addition, a variety of patients, in terms of their gender, age, and educational background, showed an interest in the intervention material. The participants reported an increase in their self-estimated ability to identify opportunities to act in a given situation. Furthermore, the intervention seemed to be of most relevance to participants who initially reported a lower intention to act. However, this finding should be interpreted with caution as our main effect measure was not validated and needs further testing.
Our endeavour to explore the possibilities for patients to counteract abuse in health care can be seen as part of a larger patient empowerment movement. Patient empowerment builds on an ideology that is concerned with patients’ increased choices and responsibilities on the one hand, and patients’ skills on the other [35]. Patient empowerment can be understood on an inter-personal as well as intra-personal level [35]. By focusing on intentions and planned behaviour, we have mainly focused on the intra-personal level, on patients’ understanding of their own personal power [36]. However, what happens on an inter-personal level when patients decide to act or speak up in health care encounters in which they are at risk of being abused is pivotal for the continued empowerment process. In a study using qualitative interviews with patients about their experiences of abuse in health care, it seemed that staff had responded to the patients’ use of their competence and speaking up by using domination techniques [27]. This study signalizes that patients may have realistic fears that taking action may make things worse or mean that they do not receive necessary care. These experiences also emphasise the need for staff to learn how to respond to patients’ actions in these situations. Therefore, we also conducted a staff intervention against abuse in health care based on Forum Play parallel to the patient intervention at the same clinic, which will be reported elsewhere.
As we only built on some parts of Boal’s Forum Play pedagogy, others were necessarily removed, considering the nature of our intervention. In contrast to a Forum Play workshop, the participants were (i) alone instead of being in a group, and (ii) were encouraged to think and write, instead of act with their bodies. First, to compensate for being alone, we simulated options offered by others by presenting possible solutions in the comics. This approach does not compensate for the absence of cooperating and shared problem-solving activities, but can aid patients in developing more ideas. Second, even though there were potential losses through the lack of embodied experiences, cognitive exercises can still be a very powerful tool to promote behavioural changes. For comparison, so-called imagined exposure is a widely used technique in behavioural therapy, for example, if a real situation is not available [37]. This use of imagination most likely depends on how real the material is to the patient (as is the case in Boal’s theatre methods), and to what extent the patient can identify her- or himself with the characters, for example, those in the comics. For the current material, we talked to staff and patients from the test clinic in order to create situations that were recognisable and realistic to nephrology patients. In order to increase the likelihood that many patients would identify with the comics, we attempted to include a variety of characters in terms of age, gender, profession, and to some extent ethnicity. One way of doing this with a limited number of images was to develop a character with few gender specific attributes in order to enable identification with the character by as many people as possible (see Fig. 1).
The fact that both men and women, young and old, and people with different educational backgrounds participated in this study reflects well on the accessibility of the program. Compared with other male and female patient samples in Sweden, the prevalence of any lifetime experience of abuse in health care was much higher in the current sample (27 % among men and 50 % among women, compared with previous rates in Sweden of 8 % in male patients [13] and 20 % in female patients [12]). This difference could depend on the fact that the current patient group has visited health care facilities more often, as many nephrology patients suffer from chronic kidney failure or come for regular check-ups. More likely, however, is that this study, in contrast to earlier studies, was solely concerned with abuse in health care and therefore attracted a more specific patient group. Given the current study’s aims and considering the small sample size, this selection effect was not at all disadvantageous, as earlier experiences of abuse in health care are likely to affect patients’ thoughts about future health care encounters. The fact that the program was not equally relevant to all patients can possibly explain the attrition during the study period, which we find reasonable. Interpreting this attrition, it should also be borne in mind that the study sample consisted of many seriously ill patients, who may not have been able to participate, and older patients, who might not use computers on a daily basis. It should be noted, in general, that a certain level of informatics skills was needed in order to participate in the study, thereby limiting the generalizability of our study.
We do not know which part of the intervention affected the participants. We can assume the importance of the exercises themselves, but the legitimising effect of the intervention could also have been important. There is also a risk that the effects that we identified were influenced by a response bias, and more specifically by demand characteristics. The so-called “good-subject effect” could lead participants to respond in the way that they believe the researcher would want them to respond [38]. In the current study, it is not unlikely that the participants figured out which hypotheses were to be tested and which questions were indicators. However, when the participants filled out ISAHCQ for the first time, they did not know that they would answer the same questions again after the program. More importantly, after the program, there was no opportunity to view or alter responses to pre-intervention questions. The participants could still have remembered what they answered and used that as a baseline for post-intervention answers, but no such general tendency was seen in Table 5, as many items remained stable during the study period. It is possible, though, that a demand bias arose in the part in which participants were asked to evaluate the effect of the program as to whether it had achieved its aim of strengthening their self-estimated ability to act. This could explain why some reported that the program achieved its aim, despite no positive changes in ISAHCQ scores. Alternatively, it could also be that ISAHCQ does not capture the effect of the intervention in the same way in which the above general question does. The fact that ISAHCQ was not validated should therefore, once more, be borne in mind. Despite that, participants who reported greater differences between post- and pre-intervention ISAHCQ scores were more likely to respond to the follow-up measurement, which may indicate that ISAHCQ scores relate to perceived effects or relevance of the program. In addition, ISAHCQ showed good internal consistency, indicating that it in this study seemed to be a reliable measurement of the latent construct of participants’ intention to act. However, there is a need to further examine the instrument’s validity, for example in relation to established instruments in areas such as patient empowerment.
