The "Patient Patient": The Trauma of Waiting and the Power of Resistance for People Living With Cancer (original) (raw)
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In Canada's health care system today, cancer patients are expected to endure long, often painful wait times. In this study we explored whether Gilda's Club (an organization that supports people affected by cancer) might increase opportunities to resist the role of the "patient patient," consequently providing a better understanding of how cancer patients cope with the long wait times in Canada's time-crunched health care system. The research presented here provides examples of the painful waiting experience for cancer patients. Yet, this research also provides examples of patients refusing to be patient. We argue that organizations like Gilda's Club can provide a space that facilitates resistance and allows patients to become more informed and more participatory in decision-making processes. We conclude that these findings reflect a gap in cancer care in Canada that might be addressed through integrating organizations like Gilda's Club into standard medical practice for cancer patients.
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There is growing interest in the role of physician as health advocate; however, few studies have documented advocacy from the patient's perspective. To address this gap, we examined the experiences of patients with cancer from the onset of symptoms to the start of treatment in Newfoundland and Labrador and aimed to describe wait times and efforts to improve timeliness of care from the patients' perspective. We conducted qualitative interviews with 60 participants aged 19 years or more with breast, colorectal, lung or prostate cancer who were recruited from a survey of patients with cancer that was carried out as an earlier part of a larger study. All survey participants had received care at regional cancer clinics in Newfoundland and Labrador and were selected by means of purposive sampling based on their type of cancer, level of satisfaction with care and place of residence (urban, semiurban or rural). Interviews were transcribed verbatim and coded by means of a thematic ap...
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The self-help movement in Hong Kong has been gradually gaining its momentum in recent years. The primary purpose of the research was to give voice to the experiences and views of patients towards cancer care and to influence healthcare providers and policy makers to act on patients' agendas. Self-help groups and their members are mobilized through the research activities of focus groups, interviews and a patient forum to specify and act on their needs. This article describes the project and the participatory action research (PAR) strategies in the mobilization of, and collaboration with, patient groups in research design, data analysis, and dissemination of findings. The implications on healthcare practice, particularly within an era of reform and restructuring of the healthcare system, are discussed.
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Purpose: The number of persons living with and beyond cancer is increasing. Such persons often have complex needs that last, and change, over time. The aim of this study is to get insights of lived experience of person diagnosed with colorectal cancer and to create an understanding of cancer trajectories as a dynamic process. This study thus explores Victor Turner's model of social drama in a cancer care context. Method: Turner suggests that crisis is a dynamic process structured by four phases: 1) breach of norm 2) crisis 3) redressive actions 4) reintegration or schism. The research team employed content analysis to explore material gathered through a series of qualitative interviews with nine Norwegian cancer patients over a period of one year. Results: To the authors' knowledge, Turner's model has not earlier been applied to such materials. The results show that Turner's model of social drama is useful in achieving new and possibly important knowledge on illness trajectories from a lived experience perspective. Conclusions: The model of social drama may contribute to a deeper understanding of the processes patients are going through in long-term illness trajectories, demonstrating that illness is not a static matter.
“Below Their Notice”: Exploring Women's Subjective Experiences of Cancer System Exclusion
Journal of Cancer Education, 2009
Background. The experiences that marginalized breast cancer populations have in common are rarely considered. Methods. The authors look across 3 qualitative studies to explore the experiences of older, lower-income, and Aboriginal women diagnosed with cancer and treated by the cancer care system in Ontario, Canada. Results. The research examines critical moments in participants' narratives that parallel one another and are categorized within 2 themes: Not Getting Cancer Care and Not Getting Supportive Care. Conclusions. Although exploratory, the findings merit attention both for what they tell us about women's experiences, and because they suggest disparities in access to treatment and psychosocial support.
Demanding patient or demanding encounter?: A case study of a cancer clinic
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This paper explores the sociological relevance of demanding encounters between doctors and patients. Borrowing from Potter and McKinlay's (2005) reconceptualization of the doctor-patient relationship, we suggest an analytic shift away from `demanding patients' toward `demanding encounters'. Such a shift places provider-patient conflict within a broader sociocultural context, emphasizing constraints facing both doctor and patient as they interact in a clinical setting. Specifically, through an ethnographic study of doctor-patient interactions at the oncology clinic of a US University Hospital, we examine the respective influences of new information technologies and patient consumerism in the production of demanding encounters in oncology. Findings suggest that these interconnected socio-cultural realities, in tandem with patient tendencies to challenge physician judgment or expertise, play a role in demanding encounters. We conclude by considering the implications of demanding encounters for doctors, patients and healthcare organizations. Keywords USA; demanding patients; difficult patients; doctor-patient interaction; cancer care; consumerism Main text Demanding patients have received considerable attention in both the clinical and sociological literature. While medical providers seek to identify the characteristics of demanding patients and minimize any deleterious effects on the clinical encounter (An,
The Cancer’s Margins Project: Access to Knowledge and Its Mobilization by LGBQ/T Cancer Patients
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