Toward an Understanding of Abuse in Health Care : A Female Patient Perspective

Abstract: Background. High numbers of incidents of abuse in health care (AHC) have been reported by patients in Sweden. In questionnaire studies (n=9600), every fifth Swedish woman and every tenth Swedish man reported any lifetime experience of AHC, and a majority reported suffering from their experiences. Female patients with experiences of AHC described them as experiences of being nullified, and male patients as experiences of being mentally pinioned. Little is known about why AHC occurs and how it can prevail in a health care system that aims to relieve patients’ suffering.Aim. The overall aim of the thesis was to bring understanding to what AHC is and to start exploring what contributes to its occurrence, focusing on a female patient perspective.Methods. In study I, a concept analysis of AHC was conducted based on the concept’s appearance in scientific literature and through case studies. Also, AHC was demarcated against the related concepts patient dissatisfaction, medical error, and personal identity threat, in order to analyze differences and similarities with these concepts. For studies II and III the Transgressions of Ethical Principles in Health Care Questionnaire (TEP) was developed to measure to what extent female patients remain silent toward the health care system after having experienced abusive or wrongful ethical transgressions in the Swedish health care system. It was hypothesized that to a high degree female patients remain silent toward the health care system after such experiences, and this lack of feedback may in turn contribute to the hampering of structural change toward better encounters. The questionnaire was answered by female patients recruited at a women’s clinic in the south of Sweden (n=530). Study IV built on a constructed grounded theory design and included informants who reported experiences of AHC in TEP (n=12). The interviews focused on the informants’ stories of what contributed to their experiences of AHC.Results.Results. Based on the concept analysis, AHC was described as patients’ subjective experiences in health care of encounters devoid of care, in which they experienced suffering and loss of their human value. Study II showed that a majority of the female patients who perceived one or more transgressions as abusive or wrongful remained silent about at least one of them (70.3%). In 60% of all cases, patients remained silent about abusive or wrongful events. In study III it was examined whether patients remaining silent could be associated with any patient characteristics. Remaining silent was only found to be associated with younger age and a lower self-rated knowledge of patient rights. In study IV, female patients’ stories of what contributed to their experiences of AHC were analyzed. This was best characterized as a process where the patient loses power struggles. According to these patients, not only their vulnerability, but also their level of competence contributed to staff’s unintended use of domination techniques by which they felt abused.Conclusions. As AHC is defined from patients’ subjective experiences it is necessary for the prevention of AHC to listen to patients’ stories and complaints. The prevalence of female patients’ silence after abusive events could be worrying, as it constitutes a loss of essential feedback for the health care system. Patients do not bear responsibility for the quality of health care processes, but their knowledge may be very valuable for structural improvement of these processes and could be valued as such. Clinical interventions that stimulate these patients to speak up, accompanied by health care staff’s reflections on how to respond to patients speaking up, must therefore be explored.