USE OF COMPLEMENTARY AND ALTERNATIVE MEDICINE IN THE CONTEXT OF CANCER Perspectives on exceptional experiences

Although little is know about the use of complementary and alternative medicine (CAM) among cancer patients in Sweden, European research which includes Sweden shows that an average of 39% of cancer patients report CAM use. AIMS: The overall aim of this thesis is to explore perspectives on CAM use among individuals with cancer in connection to reported exceptional sickness trajectories. The specific objectives are: To explore patterns of CAM use among cancer patients with reported exceptional cancer trajectories (Paper I); To explore how different stakeholders—patients, their significant others, CAM providers and biomedical health care (BHC) providers—conceptualize and discuss exceptional cancer trajectories and possible explanations for them (Paper II); To explore how a personal narrative about CAM use is told, in addition to what is told, to see how the meaning of the negotiation between different therapies is created (Paper III); and To explore patients’ perspectives on the use of biologically-based therapies in the context of cancer (Paper IV). METHODS: Through invitations in mass media, a critical incident technique was used to recruit cases perceived as exceptionally positive or negative in relation to CAM use in the cancer context, without further definition by the researchers. Qualitative interviews were conducted with 38 patients, four significant others, five CAM providers and three BHC providers. Analytical techniques utilized include latent and manifest content analysis (paper I, II), principal component analysis (paper I), narrative analysis (paper III), and framework analysis (paper IV). RESULTS: All cases were framed as exceptionally positive by the person reporting the case. There was great diversity in CAM use with 38 patients using a total of 274 CAM therapies consisting of 148 different therapeutic modalities, with biologically-based therapies representing the most common and most diverse type of CAM. Two patterns of CAM use were identified: related to number of CAM therapies, and preference for different types of CAM. Current professional CAM categorizations did not fully cover descriptions of CAM use in this study. Patients, their significant others, and their CAM and BHC providers framed the reported sickness trajectories along a continuum between the exceptionally positive and the ordinary, with stakeholder groups varying in their focus on well-being and long-term survival. Patients described a wide range of benefits related to CAM use, including aspects of physical and psychological well-being, as well as disease-related benefits. Side-effects of biologically-based therapies could be interpreted by patients as positive or negative depending on the specific situation. Also, patients and their significant others emphasized the importance of a dialogue about CAM with BHC providers. From a lay perspective, communication with BHC providers described as positive was seen as indicative of a more collaborative rather than hierarchical relationship. DISCUSSION: This study design allowed for generation of new knowledge about patients’, significant others’ and CAM providers’ focus on exceptional well-being in addition to the BHC acknowledged endpoint of exceptionally long survival otherwise used for the study of exceptional cancer trajectories. The findings of this thesis are discussed in relation to the potentials and challenges that arise from the diversity of CAM. Patients’ perceived sense of agency coupled to CAM use, discrepant views of CAM between patients and professionals are also discussed, as well as the importance of patient-provider communication. Implications of this research for clinical practice, policy, and future research are considered, with evidence of many types, including user perspectives, argued as necessary to improve safety and satisfaction for cancer patients using CAM. These findings also serve to refine future research questions to better reflect the ways in which CAM is used by individuals with cancer.