BackgroundApproximately half of service users with schizophrenia or bipolar disorder do not fully follow treatment recommendations. Studies of adherence have not adequately explored the frequency, consequences and meanings of non-adherence behaviours from service users’ perspectives. This study contributes to a more fine-grained understanding of treatment choices and the support service users require in order to maximise benefit from their medications.MethodsThis was a mixed-methods questionnaire study, employing quantitative and thematic qualitative analyses. Thirty-five individuals with a diagnosis of, and receiving psycho-pharmaceutical treatment for, schizophrenia or bipolar disorder answered online or telephone questions about whether, how, and why they deviated from their treatment recommendations, and what support they currently and would like to receive.ResultsOver half of participants identified themselves as being non-adherent, however when asked in detail about intentional and unintentional adherence, 77% reported deviating from treatment recommendations. Critically, 29% were non-adherent and satisfied with being so. Service users’ satisfaction with their support was positively correlated with satisfaction with their medication. Participants’ made treatment choices in order to live well. Both side-effects and symptoms could be obstacles to adherence, but feeling well also impacted on participants’ treatment choices. Treatment choices were often made in the context of living well day-to-day, and did not necessarily take into account longer-term effects of non-adherence. Participants wanted more information about their medications, better emotional support (including better access to psychological therapies) and stability in their relationships with health professionals.ConclusionsThis study suggests that non-adherence, both intentional and unintentional, is common amongst individuals with diagnoses of schizophrenia and bipolar disorder, and that this often occurs without health professionals’ knowledge or support. Treatment choices reflect a desire to live well, but are often driven by short-term needs. Given access to more information, and importantly to emotional support, service users could be helped to make treatment choices that adequately reflect the long-term risks of non-adherence, as well as allowing them to live well day-to-day. More research is required better to understand the meanings and complexities of service users’ treatment choices.
In this article, we explore how feelings permeated our qualitative research on suicide. Drawing on phenomenological theory, we argue for the epistemic and ethical importance of the feelings that emerge through research encounters, considering them to be embodied, intersubjective, and multilayered, and requiring careful interpretation through a "reflexivity of feelings." We sketch a tentative framework of the ways that we experienced feelings in our research and give three in-depth examples to illustrate some of the different layers and types of feelings we identified. We reflexively interpret these feelings and their role in our analysis and then discuss some of the ethical and methodological issues related to examining feelings in suicide research, and research more generally.
The impact of participation in online mixed-methods suicide research was investigated. Participants, who described feeling suicidal, completed an 18-item questionnaire before and after taking part (n = 103), and answered open-ended questions about participation (n = 97). Overall, participation reduced negative experiences and had no effect on positive experiences. Feelings of calm increased, but participants felt less supported. Some participants did experience distress, but some also reported this distress to be manageable. Anonymously sharing experiences of suicidality was viewed as important, had therapeutic benefits, and engendered hopes for recovery. The findings suggest a need to ensure vulnerable participants in online studies are well supported while protecting their anonymity.
The model has potential applications for public participation in suicide prevention, which should be mapped and assessed in further research.
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