Journal articles on the topic 'Cancer patients ethnography'
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Wanat, Marta, Mary Boulton, and Eila Watson. "Patients' experience with cancer recurrence: a meta-ethnography." Psycho-Oncology 25, no. 3 (July 29, 2015): 242–52. http://dx.doi.org/10.1002/pon.3908.
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Hamzah, Irna, A. Imran Nordin, Hamidah Alias, Nadhirah Rasid, and Hanif Baharin. "Game Design Requirements Through Ethnography Amongst Pediatric Cancer Patients." Advanced Science Letters 24, no. 3 (March 1, 2018): 1567–70. http://dx.doi.org/10.1166/asl.2018.11110.
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Rasid, Nadhirah, Puteri N. E. Nohuddin, Zuraini Zainol, Irna Hamzah, Hamidah Alias, and A. Imran Nordin. "Experience Mining Through Ethnography Study Among Pediatric Cancer Patients in Malaysia." Advanced Science Letters 24, no. 3 (March 1, 2018): 1562–66. http://dx.doi.org/10.1166/asl.2018.11109.
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Anderson, Alice, Angela Starkweather, Xiaomei Cong, Kim Kyounghae, Michelle Judge, and Dena Schulman-Green. "Exploring Cancer Pain Self-Management Needs and Preferences: A Meta-Ethnography." Qualitative Health Research 31, no. 9 (April 9, 2021): 1609–21. http://dx.doi.org/10.1177/1049732321998975.
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Self-management of chronic disease and related symptoms provides a framework for understanding the contextual factors that influence self-management knowledge and skills that patients and families require to manage their condition on a day-to-day basis. The management of cancer pain is a significant issue for patients and families, and their experience can provide insight on cancer pain self-management support needs and preferences. A meta-synthesis of 20 qualitative research articles on self-management of cancer pain was conducted to gain a deeper understanding of the self-management support needs of patients with cancer pain. Noblit and Hare’s meta-ethnographic model was used. The meta-synthesis resulted in increased understanding of the needs and preferences for self-management support of cancer pain and the role of the health care practitioner. Practical implications are presented.
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Weiss, Meira. "Cancer and Imputed Infection: Images of ‘The Disease’ among Patients' Relatives." Sociological Review 43, no. 1 (February 1995): 1–35. http://dx.doi.org/10.1111/j.1467-954x.1995.tb02476.x.
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A description of the social construction of cancer is offered from the cancer patient's relatives' point of view, focusing on the linkage made between contamination and cancer. The ethnography brings together four detailed observations of cancer patients found in a transient stage of remission, who are perceived by their relatives as paradoxically being at one and the same time very good-looking and also very sick. A semiotic explanation to the phenomenon of imputed infection with regard to cancer patients of ‘doubtful appearance’ is discussed, arguing that such imputation can be seen as one of several mechanisms intended to force the disease ‘into the open’ and thus re-align the lost congruence between internal and external.
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Hildebrandt, Christiane, Hanna Mayer, and Antje Koller. "Experiences of patients with colorectal cancer from diagnosis until completion of treatment: A meta‐ethnography approach." Psycho-Oncology 28, no. 2 (December 28, 2018): 219–27. http://dx.doi.org/10.1002/pon.4946.
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Kim, Eun Young, and Se Jin Hong. "Decision-Making Experience of Older Patients with Cancer in Choosing Treatment: A Qualitative Meta-Synthesis Study." Journal of Korean Gerontological Nursing 23, no. 4 (November 30, 2021): 418–30. http://dx.doi.org/10.17079/jkgn.2021.23.4.418.
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Purpose: This study was conducted to analyze and synthesize the findings of qualitative studies related to the decision-making experience of older patients with cancer in choosing treatment.Methods: We used the seven steps of Noblit and Hare’s meta-ethnography to analyze and synthesize selected qualitative studies. Seven databases were used to search the literature that explored the decision-making experiences of older patients with cancer in choosing treatment: PubMed, CINAHL, Embase, Web of Science, Research Informations Sharing Service (RISS), Koreastudies Information Service System (KISS), and National Assembly Library.Results: The final 11 studies were included in the analysis. Three themes emerged as result of synthesizing: “Checking the feasibility of treatment in one’s own life”, “The constant weighing up the gains and losses of treatment”, and “Having meanings to life”.Conclusion: This study provides an in-depth understanding of treatment decision-making experiences of older patients with cancer and highlights the complex factors that influence their treatment decision-making process. This may contribute to the development of interventions that help older patients with cancer choose treatment during the decision-making process.
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Fitchett, Russell C., Edward J. Aldus, Lucy R. Fitchett, and Jane Cross. "The lived experience of head and neck cancer patients receiving curative radiotherapy: A systematic review and meta-ethnography." Psycho-Oncology 27, no. 9 (June 29, 2018): 2077–86. http://dx.doi.org/10.1002/pon.4790.
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Robinson, Anna, Umay Oksuz, Robert Slight, Sarah Slight, and Andrew Husband. "Digital and Mobile Technologies to Promote Physical Health Behavior Change and Provide Psychological Support for Patients Undergoing Elective Surgery: Meta-Ethnography and Systematic Review." JMIR mHealth and uHealth 8, no. 12 (December 1, 2020): e19237. http://dx.doi.org/10.2196/19237.
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Background Digital technology has influenced many aspects of modern living, including health care. In the context of elective surgeries, there is a strong association between preoperative physical and psychological preparedness, and improved postoperative outcomes. Health behavior changes made in the pre- and postoperative periods can be fundamental in determining the outcomes and success of elective surgeries. Understanding the potential unmet needs of patients undergoing elective surgery is central to motivating health behavior change. Integrating digital and mobile health technologies within the elective surgical pathway could be a strategy to remotely deliver this support to patients. Objective This meta-ethnographic systematic review explores digital interventions supporting patients undergoing elective surgery with health behavior changes, specifically physical activity, weight loss, dietary intake, and psychological support. Methods A literature search was conducted in October 2019 across 6 electronic databases (International Prospective Register of Systematic Reviews [PROSPERO]: CRD42020157813). Qualitative studies were included if they evaluated the use of digital technologies supporting behavior change in adult patients undergoing elective surgery during the pre- or postoperative period. Study quality was assessed using the Critical Appraisal Skills Programme tool. A meta-ethnographic approach was used to synthesize existing qualitative data, using the 7 phases of meta-ethnography by Noblit and Hare. Using this approach, along with reciprocal translation, enabled the development of 4 themes from the data. Results A total of 18 studies were included covering bariatric (n=2, 11%), cancer (n=13, 72%), and orthopedic (n=3, 17%) surgeries. The 4 overarching themes appear to be key in understanding and determining the effectiveness of digital and mobile interventions to support surgical patients. To successfully motivate health behavior change, technologies should provide motivation and support, enable patient engagement, facilitate peer networking, and meet individualized patient needs. Self-regulatory features such as goal setting heightened patient motivation. The personalization of difficulty levels in virtual reality–based rehabilitation was positively received. Internet-based cognitive behavioral therapy reduced depression and distress in patients undergoing cancer surgery. Peer networking provided emotional support beyond that of patient-provider relationships, improving quality of life and care satisfaction. Patients expressed the desire for digital interventions to be individually tailored according to their physical and psychological needs, before and after surgery. Conclusions These findings have the potential to influence the future design of patient-centered digital and mobile health technologies and demonstrate a multipurpose role for digital technologies in the elective surgical pathway by motivating health behavior change and offering psychological support. Through the synthesis of patient suggestions, we highlight areas for digital technology optimization and emphasize the importance of content tailored to suit individual patients and surgical procedures. There is a significant rationale for involving patients in the cocreation of digital health technologies to enhance engagement, better support behavior change, and improve surgical outcomes.
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Prince, Rebecca M., Laura Parente, Anthony Soung Yee, Melanie Powis, Katherine Enright, Sonal Gandhi, Eva Grunfeld, Rashida Haq, Amna Husain, and Monika K. Krzyzanowska. "Defining user needs for an electronic tool to improve chemotherapy-related toxicity management." Journal of Clinical Oncology 34, no. 7_suppl (March 1, 2016): 157. http://dx.doi.org/10.1200/jco.2016.34.7_suppl.157.
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157 Background: Cancer drugs are associated with toxicities which can negatively impact patients’ (pts) quality of life, outcomes and increase acute care use (ACU). There is increasing interest in leveraging technology to solve clinical problems in healthcare. We hypothesized that an electronic tool (toxicity module) targeting management of chemotherapy toxicities could decrease ACU by facilitating more effective symptom management. Methods: Participatory design methodology consisting of end user needs assessment through ethnographic field study (shadowing and in-depth interviews) and focus groups was used to inform design of an interactive prototype toxicity module. Oncology pts and their caregivers, and health care providers (HCPs) including oncologists, oncology nurses and primary care providers were included in all stages of development. Contemporaneous notes were taken during ethnography while focus groups were also audio recorded. Thematic analysis through ideation sessions and time-of-day exercises allowed identification of overarching issues. Results: Eight pts and 8 HCPs participated in the ethnographic field study. Two focus groups, one with 7 pts, one with 4 HCPs were held. Most themes were common to both pts and HCPs; gaps and barriers in the current system, need for decision aids, improved HCP communication and options in care delivery, and access to credible information delivered in a timely, secure manner and integrated into existing systems. Additionally, pts further identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious and wanting to be more empowered; HCPs identified accountability as an issue. These themes informed development of a prototype for a web-based toxicity management tool, which has served the purpose of defining user needs for symptom tracking, self-management advice, and timely communication with an oncology provider. Iterative evaluation over 2 rounds of usability testing is currently underway. Conclusions: An electronic tool that integrates just-in-time self-management advice and oncology provider support into routine care may address some of the gaps identified in the current system for managing chemotherapy toxicity.
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Miller, Daniel. "The Tragic Denouement of English Sociality." Cultural Anthropology 30, no. 2 (May 25, 2015): 336–57. http://dx.doi.org/10.14506/ca30.2.11.
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Social science contains a grand narrative about our fall from intense sociality to fragmented individualism. The present essay contests this narrative with respect to the sociality of the English. It starts with a study of hospice patients with terminal cancer who live in villages and yet become isolated and lonely. To explain this phenomenon, it uses a larger ethnography of village life, finding that villagers are highly sociable and philanthropic in the public domain, but circumspect and reticent with regard to the private domain. So once patients are restricted to their homes, isolation follows. The article further examines the comparative anthropology of Britain and historical studies of neighbors and family relations to suggest that this pattern of sociality has held true for centuries and represents nothing new. Finally, I consider these insights in the context of a wider study of social media, and its consequences for the work of the hospice.
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Mitchell, Gary, Sam Porter, and Elizabeth Manias. "A critical ethnography of communication processes involving the management of oral chemotherapeutic agents by patients with a primary diagnosis of colorectal cancer: study protocol." Journal of Advanced Nursing 71, no. 4 (November 10, 2014): 922–32. http://dx.doi.org/10.1111/jan.12565.
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Benoot, C., K. Hannes, and J. Bilsen. "Couples’ Sexual Adjustment Process to Cancer: A Metasynthesis and Qualitative Study." Klinička psihologija 9, no. 1 (June 13, 2016): 88–89. http://dx.doi.org/10.21465/2016-kp-op-0059.
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Objective: Existing research on couples’ sexual adjustment to cancer lacks a clear theoretical framework which is necessary to underpin interventions supporting couples in such adjustment. Possibly as a result, current interventions show disappointing results. We therefore wanted to construct a conceptual framework of couples’ sexual adjustment to cancer, leading to theory-based and therefore more adequate interventions. Design and Method: We performed a meta-synthesis of 21 papers to arrive at a preliminary framework of sexual adjustment to cancer, using the techniques of meta-ethnography. This preliminary framework guided our qualitative study with 20 patients and partners with advanced cancer, using constructivist grounded-theory methodology. Results: The combination of these two methods led to a conceptual model of sexual adjustment, showing that couples engage in a combination of three different pathways: 1) a grieving pathway, in which sexual changes are depicted as one of the losses due to cancer; 2) a cognitive-restructuring pathway, in which sexual changes are depicted as normative and culturally determined in which their meaning need to be renegotiated; 3) a rehabilitation pathway, in which sexual changes are depicted as bodily dysfunctions which need medical treatment. Contextual factors influence this adjustment process, e.g. couples with advanced cancer emphasize the grieving process over the rehabilitation or restructuring process, as sexuality is often seen as a definite loss because of the irreversible character of the disease. Conclusions: For an intervention to be more effective it could be based on above conceptual framework, which emphasizes the multiple and flexible pathways a couple can take to adjust to sexual changes.
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Fordham, Florence Todd, Angela McCullagh, and Paddy Stone. "43 Decision making about prognoses in multidisciplinary teams: an ethnographic study." BMJ Supportive & Palliative Care 8, no. 3 (September 2018): 376.1–376. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.43.
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IntroductionThis study uses ethnographic methods to explore multidisciplinary team decision-making with a focus on prognoses at the end of life.Previous research highlights that patients carers and clinicians value accurate prognostication. Both the recognition of dying and communicating this to patients and carers were acknowledged as key unanswered research questions in the PeolcPSP.Providing quality palliative care requires different specialisms to meet the needs of the whole person – medically but also spiritually emotionally and socially. Multidisciplinary teams are considered vital to ensure that care is of the highest quality and that decisions made are evidence-based.AimThis study aims to understand how palliative multidisciplinary teams form collective judgements about prognoses.MethodsEthnography provided an appropriate methodology for this study as it facilitates the documentation of prognostic estimates in MDTs capturing insights into the perspectives and practices of team members exploring the influences of the structure location and nature of the meetings. Through observations and semi-structured interviews ethnography allowed an interrogation of the issues in decision-making.Results and next stepsPreliminary findings have highlighted that different disciplines use prognoses in diverse ways. For example social workers and discharge administrators use prognoses to fast-track care decisions and funding favouring an accurate numerical score whilst the medical team use prognoses as a suggestion of appropriate care preferring fluid descriptive terms.The findings will be used to will inform recommendations for future guidelines to MDTs to improve communication and decision making while discussing the prognoses of patients at the end of life.References. Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: A systematic literature review.Patient Education & Counseling2009;77(2):179–86.. Steinhauser KE, Christakis NA, Clipp EC, et al.Preparing for the end of life: Preferences of patients families physicians and other care providers. Journal of Pain & Symptom Management2001;22(3):727–37.. Kutner JS, Steiner JF, Corbett KK, et al. Information needs in terminal illness. Social Science & Medicine1999;48(10):1341–52.. Steinhauser KE., Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients family physicians and other care providers. JAMA2000;284(19):2476–82.. The Palliative and end of life care Priority Setting Partnership (PeolcPSP). Final Report (January 2015). https://palliativecarepsp.files.wordpress.com/2015/01/peolcpsp_final_report.pdf. Blazeby J, Wilson L, Metcalfe C, et al. Analysis of clinical decision making in multi-disciplinary cancer teams. Annals of Oncology2006;17:457–60.
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Weiner, Diane, and Mary Canales. ""It Is Not Just Diabetes": Engaging Ethnographic Voices to Develop Culturally Appropriate Health Promotion Efforts." American Indian Culture and Research Journal 38, no. 1 (January 1, 2014): 73–100. http://dx.doi.org/10.17953/aicr.38.1.e0264171h6330215.
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In this article, we examine cultural capital within the contexts of ethnography, community-based participatory research (CBPR), and holism. Because many chronic diseases such as cancer and diabetes are influenced by lifestyle choices in which culture plays a central role regarding perceptions of illness and health, it is important to understand how patients and their communities perceive these cultural factors. We outline how CBPR can be used as a strategy to explore these issues among Native Americans in the northeastern United States, whose perspectives and experiences have been less visible in the published literature. As a method, CBPR provides a context to "apply" cultural capital in the research arena, while holism, as a practice, provides an excellent exemplar of how cultural capital is manifested in the day-to-day lives of Native Americans. We also illustrate the ways in which health education programs are primarily influenced by medicalized perspectives of diabetes and cancer, which demand a singular view of what should be treated, as opposed to locally produced knowledge(s) that insist on a more integrative view of health and health needs. Finally, we highlight the challenges associated with these differences through the voices and perceptions of individuals in a number of Native communities, as together we attempted to build more comprehensive and culturally appropriate health promotion programs.
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McCutchan, Grace, Bahr Weiss, Harriet Quinn-Scoggins, Anh Dao, Tom Downs, Yunfeng Deng, Ha Ho, Lam Trung, Jon Emery, and Kate Brain. "Psychosocial influences on help-seeking behaviour for cancer in low-income and lower middle-income countries: a mixed-methods systematic review." BMJ Global Health 6, no. 2 (February 2021): e004213. http://dx.doi.org/10.1136/bmjgh-2020-004213.
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IntroductionStarting cancer treatment early can improve outcomes. Psychosocial factors influencing patients’ medical help-seeking decisions may be particularly important in low and lower middle-income countries (LMIC) where cancer outcomes are poor. Comprehensive review evidence is needed to understand the psychosocial influences on medical help-seeking for cancer symptoms, attendance for diagnosis and starting cancer treatment.MethodsMixed-methods systematic review registered on PROSPERO (CRD42018099057). Peer-reviewed databases were searched until April 2020 for studies assessing patient-related barriers and facilitators to medical help-seeking for cancer symptoms, diagnosis and treatment in adults (18+ years) living in LMICs. Quality of included studies was assessed using the Critical Appraisal Skills Programme tool. Data were synthesised using meta-analytic techniques, meta-ethnography or narrative synthesis as appropriate.ResultsOf 3963 studies identified, 64 were included. In quantitative studies, use of traditional, complementary and alternative medicine (TCAM) was associated with 3.60 higher odds of prolonged medical help-seeking (95% CI 2.06 to 5.14). Qualitative studies suggested that use of TCAM was a key barrier to medical help-seeking in LMICs, and was influenced by causal beliefs, cultural norms and a preference to avoid biomedical treatment. Women face particular barriers, such as needing family permission for help-seeking, and higher stigma for cancer treatment. Additional psychosocial barriers included: shame and stigma associated with cancer such as fear of social rejection (eg, divorce/disownment); limited knowledge of cancer and associated symptoms; and financial and access barriers associated with travel and appointments.ConclusionDue to variable quality of studies, future evaluations would benefit from using validated measures and robust study designs. The use of TCAM and gender influences appear to be important barriers to help-seeking in LMIC. Cancer awareness campaigns developed with LMIC communities need to address cultural influences on medical help-seeking behaviour.
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Shaw, Sara E., Lucas Martinus Seuren, Joseph Wherton, Deborah Cameron, Christine A'Court, Shanti Vijayaraghavan, Joanne Morris, Satyajit Bhattacharya, and Trisha Greenhalgh. "Video Consultations Between Patients and Clinicians in Diabetes, Cancer, and Heart Failure Services: Linguistic Ethnographic Study of Video-Mediated Interaction." Journal of Medical Internet Research 22, no. 5 (May 11, 2020): e18378. http://dx.doi.org/10.2196/18378.
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Background Video-mediated clinical consultations offer potential benefits over conventional face-to-face in terms of access, convenience, and sometimes cost. The improved technical quality and dependability of video-mediated consultations has opened up the possibility for more widespread use. However, questions remain regarding clinical quality and safety. Video-mediated consultations are sometimes criticized for being not as good as face-to-face, but there has been little previous in-depth research on their interactional dynamics, and no agreement on what a good video consultation looks like. Objective Using conversation analysis, this study aimed to identify and analyze the communication strategies through which video-mediated consultations are accomplished and to produce recommendations for patients and clinicians to improve the communicative quality of such consultations. Methods We conducted an in-depth analysis of the clinician-patient interaction in a sample of video-mediated consultations and a comparison sample of face-to-face consultations drawn from 4 clinical settings across 2 trusts (1 community and 1 acute care) in the UK National Health Service. The video dataset consisted of 37 recordings of video-mediated consultations (with diabetes, antenatal diabetes, cancer, and heart failure patients), 28 matched audio recordings of face-to-face consultations, and fieldnotes from before and after each consultation. We also conducted 37 interviews with staff and 26 interviews with patients. Using linguistic ethnography (combining analysis of communication with an appreciation of the context in which it takes place), we examined in detail how video interaction was mediated by 2 software platforms (Skype and FaceTime). Results Patients had been selected by their clinician as appropriate for video-mediated consultation. Most consultations in our sample were technically and clinically unproblematic. However, we identified 3 interactional challenges: (1) opening the video consultation, (2) dealing with disruption to conversational flow (eg, technical issues with audio and/or video), and (3) conducting an examination. Operational and technological issues were the exception rather than the norm. In all but 1 case, both clinicians and patients (deliberately or intuitively) used established communication strategies to successfully negotiate these challenges. Remote physical examinations required the patient (and, in some cases, a relative) to simultaneously follow instructions and manipulate technology (eg, camera) to make it possible for the clinician to see and hear adequately. Conclusions A remote video link alters how patients and clinicians interact and may adversely affect the flow of conversation. However, our data suggest that when such problems occur, clinicians and patients can work collaboratively to find ways to overcome them. There is potential for a limited physical examination to be undertaken remotely with some patients and in some conditions, but this appears to need complex interactional work by the patient and/or their relatives. We offer preliminary guidance for patients and clinicians on what is and is not feasible when consulting via a video link. International Registered Report Identifier (IRRID) RR2-10.2196/10913
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Robinson-Barella, A., A. Husband, R. Slight, and S. Slight. "Designing person-centred technologies to support patients undergoing cancer surgery: a pharmacist-led, qualitative study." International Journal of Pharmacy Practice 30, Supplement_2 (November 30, 2022): ii45—ii46. http://dx.doi.org/10.1093/ijpp/riac089.054.
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Abstract Introduction Lifestyle changes made during the pre-operative period can positively influence post-operative outcomes and the overall success of cancer surgeries.1 Digital technologies (including smartphone apps and fitness trackers) which support patients with physical activity and rehabilitation advice present an opportunity to support surgical patients remotely.2 However, little is known about the best way to design or provide these digital technologies in a person-centred manner. In order to develop effective digital strategies for this unique patient cohort, it is important to first understand in what way(s) do cardiothoracic cancer surgery patients want to be supported with technology.3 Aim To understand how digital technologies could be designed and delivered to better support patients undergoing cancer surgery, specifically: 1) what support do patients want from technologies, 2) how do they want to use them, and 3) when should they be implemented pre- and/or post-operatively? Methods The EQUATOR guidelines and COREQ checklist were followed. Pre- and post-operative patients attending cardiothoracic cancer surgery clinics within one large teaching hospital in the North of England were invited to take part. Purposive sampling was employed to recruit a representative sample of patients. Semi-structured interviews took place between September 2020-February 2021, during the coronavirus pandemic; interviews were conducted over the telephone or via video call-based software, and were audio-recorded and transcribed verbatim. Interviews included questions on participant surgical experience, behaviour change and perspectives on digital technologies. Reflexive thematic analysis enabled the development of themes from the data. QSR NVivo software (Version 12) facilitated data analysis. The Newcastle University Patient and Public Involvement and Engagement group had extensive input in the study design and conceptualisation. Ethical approval was obtained from the NHS Health Research Authority (HRA) and Care Research Wales (reference: 19/NE/0318). Results Sixteen participants were recruited; these included 9 females, with 6 interviews being ran via Zoom®, and an average age for all participants of 65-years (SD 8.29). Four themes were developed from the data that related to the design and delivery of person-centred technologies in order to best meet the needs of patients undergoing cardiothoracic cancer surgery; these centred on: (i) “getting the technology to tell me, guide me and encourage me”; (ii) “tracking me and supporting me to reach my goals”; (iii) “feeling comfort in knowing I’m not alone”; and (iv) “getting the timing right for me”. Discussion/Conclusion This study is one of the first in this patient cohort to involve pre- and post-operative participants. It provides key insights to address knowledge gaps relating to the design and optimisation of person-centred digital technologies for patients undergoing surgery for cardiothoracic cancer. We acknowledge some limitations with our work; whilst we did not sample participants by socioeconomic status, it is possible that different socioeconomic classes may have varied experiences with technologies. Our focus was solely cardiothoracic cancer surgery and thus findings may not be generalisable to other surgical procedures. These findings have the potential to shape and influence future work on the co-design and optimisation of person-centred digital health technologies in modern healthcare settings. References 1. Silver JK, et al. Cancer rehabilitation may improve function in survivors and decrease the economic burden of cancer to individuals and society. Work, 2013, 46(4):455-472. 2. Robinson A, et al. The effectiveness of digital technologies to support surgical patients in changing their health behaviours: a systematic review. BJS Open, 2021. DOI: 10.1093/bjsopen/zraa009. 3. Robinson A, et al. Digital and mobile technologies to promote physical health behaviour change and provide psychological support for elective surgical patients: a meta-ethnography and systematic review. JMIR mHealth and uHealth, 2020. 8(12): e19237. DOI: 10.2196/19237.
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Chan, Lisa S., Mary Ellen Macdonald, Franco A. Carnevale, and S. Robin Cohen. "‘I’m only dealing with the acute issues’: How medical ward ‘busyness’ constrains care of the dying." Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 22, no. 5 (May 29, 2017): 451–68. http://dx.doi.org/10.1177/1363459317708822.
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Acute hospital units are a common location of death. Curative characteristics of the acute medical setting make it difficult to provide adequate palliative care; these characteristics include an orientation to life-prolonging treatment, an emphasis on routine or task-oriented care and a lack of priority on emotional engagement with patients. Indeed, research shows that dying patients in acute medical units often experience unmet needs at the end of life, including uncontrolled symptoms (e.g. pain, breathlessness), inadequate emotional support and poor communication. A focused ethnography was conducted on an acute medical ward in Canada to better understand how this curative/life-prolonging care environment shapes the care of dying patients. Fieldwork was conducted over a period of 10 months and included participant-observation and interviews with patients, family members and staff. On the acute medical ward, a ‘logic of care’ driven by discourses of limited resources and the demanding medical unit created a context of busyness. Staff experienced an overwhelming workload and felt compelled to create priorities, which reflected taken-for-granted values regarding the importance of curative/life-prolonging care over palliative care. This could be seen through the way staff prioritized life-prolonging practices and rationalized inconsistent and less attentive care for dying patients. These values influenced care of the dying through delaying a palliative approach to care, limiting palliative care to those with cancer and providing highly interventive end-of-life care. Awareness of these taken-for-granted values compels a reflective and critical approach to current practice and how to stimulate change.
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Plona, Zachary, Lina Ngao, Benjamin Monteagudo, Hunter Hutchinson, Jennifer Schultz, Youseph Yazdi, PhD, MBA, and Soumyadipta Acharya. "337 Innovation Opportunities within Lymphedema." Journal of Clinical and Translational Science 6, s1 (April 2022): 62. http://dx.doi.org/10.1017/cts.2022.190.
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OBJECTIVES/GOALS: Lymphedema is a chronic, debilitating disease characterized by progressive swelling due to lymphatic dysfunction. Lymphedema affects 5+ million people in the US, commonly as a consequence of cancer treatment. We identified the most relevant needs within lymphedema based on clinical impact, commercial viability, and technological feasibility. METHODS/STUDY POPULATION: A narrative review of lymphedema management was performed through a combination of literature review via English language PubMed, landscape determination for current solutions and primary ethnography. Lymphedema-focused physicians, patients, physical therapists and researchers were interviewed on Needs were identified and clustered based on common themes. These clusters were further refined through an iterative process of systematic scoring and expert evaluation. Clusters were evaluated on their potential for clinical and commercial impact as well as technical feasibility. RESULTS/ANTICIPATED RESULTS: General clusters identified included improved diagnostic modalities, curative treatment, disease knowledge among non-specialized clinicians and increased insurance coverage. 3 primary needs were determined to represent the best opportunities for technological innovation. There is a need for a quantitative method of evaluating lymphedema. This would allow for both improved tracking of progression for patients undergoing conservative management, and for better evaluation of surgical outcomes. Oncologists and surgeons need a method of prophylaxis in order to decrease the rate of lymphedema development following cancer treatment. Physicians need a method for early diagnosis of subclinical lymphedema to enable early intervention through proactive screening rather than reactive management. DISCUSSION/SIGNIFICANCE: Increasingly medical device design has moved towards a “bedside to benchtop” model where technology development is targeted based on critical needs within the clinical environment. Identification of these critical needs will serve as to guide future technological innovation in creating clinically impactful advancements.
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Rapport, Frances, James Smith, Tracey A. O’Brien, Vanessa J. Tyrrell, Emily VA Mould, Janet C. Long, Hossai Gul, and Jeffrey Braithwaite. "Development of an implementation and evaluation strategy for the Australian ‘Zero Childhood Cancer’ (Zero) Program: a study protocol." BMJ Open 10, no. 6 (June 2020): e034522. http://dx.doi.org/10.1136/bmjopen-2019-034522.
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IntroductionEffective implementation of a research Program requires an actionable plan to guide execution. To assess the actionability and success of that plan, both scientific and implementation elements must be taken into account. The aim of this study is to assess the ‘Zero Childhood Cancer Personalised Medicine Program’ (the Zero Program), an Australian first-ever and most comprehensive personalised medicine programme for children with high-risk or relapsed cancer, in terms of its structure, process and implementational effect.Methods and analysisWe will assess Program delivery mechanisms. The development of the implementation and evaluation strategy will concentrate on the work of the Zero Program as a complex whole. This includes the structure of collaborative links across stakeholder groups involved in Program development and delivery, changes to collaborative relationships over time and the impact of group working on Program outcomes. We are applying a mixed-methods design including: a rapid ethnography (observations of stakeholder interactions and informal conversations), Program professionals’ completion of a rapid health implementation proforma and a social network analysis. Formative evaluations of the implementation science effects, applying feedback techniques, for example, Formative Evaluation Feedback Loops and the Zero Program professionals’ feedback, will determine where Program tailoring may be needed. A repeat of the social network analysis downstream will examine network changes over time, followed by an expert panel using the expert recommendations for implementing change to assess the integration of implementation strategies into the Program structure. A summative evaluation of the Program will bring the research elements together, leading to comprehensive data triangulation and determining the sustainability and implementational effects of Program delivery.Ethics and disseminationEthical approval for this study has been granted by Hunter New England Research Ethics Committee, New South Wales, Australia (approval ref: 2019/ETH12025). Knowledge translation will be achieved through publications, reports and conference presentations to healthcare professionals, patients, families and researchers.Trial RegistrationNCT03336931; Pre-results.
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Shaw, Sara, Joseph Wherton, Shanti Vijayaraghavan, Joanne Morris, Satya Bhattacharya, Philippa Hanson, Desirée Campbell-Richards, et al. "Advantages and limitations of virtual online consultations in a NHS acute trust: the VOCAL mixed-methods study." Health Services and Delivery Research 6, no. 21 (June 2018): 1–136. http://dx.doi.org/10.3310/hsdr06210.
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BackgroundThere is much enthusiasm from clinicians, industry and the government to utilise digital technologies and introduce alternatives to face-to-face consultations.Objective(s)To define good practice and inform digital technology implementation in relation to remote consultations via Skype™ (Microsoft Corporation, Redmond, WA, USA) and similar technologies.DesignMultilevel mixed-methods study of remote video consultations (micro level) embedded in an organisational case study (meso level), taking account of the national context and wider influences (macro level).SettingThree contrasting clinical settings (Diabetes, Antenatal Diabetes and Cancer Surgery) in a NHS acute trust.Data collection and analysisMacro level – interviews with 12 national-level stakeholders combined with document analysis. Meso level – longitudinal organisational ethnography comprising over 300 hours of observations, 24 staff interviews and analysis of 16 documents. Micro level – 30 video-recorded remote consultations; 17 matched audio-recorded face-to-face consultations. Interview and ethnographic data were analysed thematically and theorised using strong structuration theory. Consultations were transcribed verbatim and analysed using the Roter interaction analysis system (RIAS), producing descriptive statistics on different kinds of talk and interaction.ResultsPolicy-makers viewed remote video consultations as a way of delivering health care efficiently in the context of rising rates of chronic illness and growing demand for services. However, the reality of establishing such services in a busy and financially stretched NHS acute trust proved to be far more complex and expensive than anticipated. Embedding new models of care took much time and many resources, and required multiple workarounds. Considerable ongoing effort was needed to adapt and align structures, processes and people within clinics and across the organisation. For practical and safety reasons, virtual consultations were not appropriate for every patient or every consultation. By the end of this study, between 2% and 20% of all consultations were being undertaken remotely in participating clinics. Technical challenges in setting up such consultations were typically minor, but potentially prohibitive. When clinical, technical and practical preconditions were met, virtual consultations appeared to be safe and were popular with both patients and staff. Compared with face-to-face consultations, virtual consultations were very slightly shorter, patients did slightly more talking and both parties sometimes needed to make explicit things that typically remained implicit in a traditional encounter. Virtual consultations appeared to work better when the clinician and the patient knew and trusted each other. Some clinicians used Skype adaptively to support ad hoc clinician-initiated and spontaneous patient-initiated encounters. Other clinicians chose not to use the new service model at all.ConclusionsVirtual consultations appear to be safe, effective and convenient for patients who are preselected by their clinicians as ‘suitable’, but such patients represent a small fraction of clinic workloads. There are complex challenges to embedding virtual consultation services within routine practice in the NHS. Roll-out (across the organisation) and scale-up (to other organisations) are likely to require considerable support.LimitationsThe focus on a single NHS organisation raises questions about the transferability of findings, especially quantitative data on likely uptake rates.Future researchFurther studies on the micro-analysis of virtual consultations and on the spread and scale-up of virtual consulting services are planned.FundingThe National Institute for Health Research Health Services and Delivery Research programme.
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Aquino, Verônica Vrban, and Márcia Maria Fontão Zago. "The meaning of religious beliefs for a group of cancer patients during rehabilitation." Revista Latino-Americana de Enfermagem 15, no. 1 (February 2007): 42–47. http://dx.doi.org/10.1590/s0104-11692007000100007.
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The objective of this exploratory study was to identify how religion influences the survival of a group of cancer patients. The study consisted of an ethnographic case with the participation of six laryngectomized male and female patients between 51 and 72 years old, who had been operated on two to five years earlier. Data were collected by semistructured interviews and analyzed on the basis of the concepts of culture and religion. The results were synthesized into three descriptive categories: the moral representation of cancer, religious beliefs about the cancer trajectory, and negotiation with religion for survival. These categories give rise to the meaning "the hope for a second chance", which emphasizes the importance of religion as part of the support networks that articulate with the patient's coping with the stigma of cancer, with the hope for cure, and with the ways of organizing everyday life, during survival.
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Buiting, Hilde M., Marleen A. C. van Ark, Otto Dethmers, Emma P. E. Maats, Jogien A. Stoker, and Gabe S. Sonke. "Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands." BMJ Open 9, no. 3 (March 2019): e024450. http://dx.doi.org/10.1136/bmjopen-2018-024450.
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ObjectiveAdvances in oncology increasingly result in protracted disease trajectories for patients with incurable cancer. In this disease phase, patients are aware of the incurable nature of cancer although they are not yet approaching the last phase of life. We explored the challenges for patients confronted with protracted incurable cancer.DesignEthnographic study (2015–2017) based on conversations with patients, observations at a day-care unit and a selection of information from the medical records of patients who died during the study period.SettingThe day-care unit of a comprehensive cancer centre in the Netherlands.ParticipantsNineteen patients with stage IV breast cancer (in remission, >1 year after diagnosis) and 11 patients with stage IV lung-cancer (in remission, >6 months after diagnosis).ResultsIn patients who had died during the study period, the treatment response often fluctuated between stable, remission and progression throughout the course of the disease. Patients reported that this fluctuation could be overwhelming. However, as patients grew accustomed to having protracted incurable cancer, the distress associated with fluctuations (perceived in scan results) slowly faded. Patients reported that cancer became part of who they were. At the day-care unit, most patients talked about their disease in an optimistic or neutral way and expressed delight in life. They often expressed gratefulness for the possible prolongation of life, expressed hope and tried to stay optimistic. This was frequently reinforced by optimistic doctors and nurses. Relatives, however, could downplay such optimism. Moreover, some patients acknowledged that hope was qualified by their personal challenges regarding their disease.ConclusionsIn situations where tumours remained in remission or were stable for extended periods, patients grew accustomed to having cancer. At the day-care unit, medical professionals typically encouraged an attitude of being hopeful and optimistic, which could be downplayed by relatives. More research is warranted to explore this protracted disease phase and this optimistic view among healthcare professionals.
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Garrett, Sarah B., Thea M. Matthews, Corey M. Abramson, Christopher J. Koenig, Fay J. Hlubocky, Christopher K. Daugherty, Pamela N. Munster, and Daniel Dohan. "Before Consent: Qualitative Analysis of Deliberations of Patients With Advanced Cancer About Early-Phase Clinical Trials." JCO Oncology Practice 16, no. 1 (January 2020): e56-e63. http://dx.doi.org/10.1200/jop.19.00256.
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PURPOSE: Patients with advanced cancer and oncologists deliberate about early-phase (EP) trials as they consider whether to pursue EP trial enrollment. We have limited information about those deliberations and how they may facilitate or impede trial initiation. This study describes these deliberations and their relationship to trial initiation. PATIENTS AND METHODS: We collected longitudinal, ethnographic data on deliberations of patients with advanced cancer at two academic medical centers. We used constant comparative and framework analyses to characterize the deliberative process and its relationship to trial initiation. RESULTS: Of 96 patients with advanced cancer, 26% initiated EP enrollment and 19% joined a trial. Constant comparative analysis revealed two foci of deliberation. Setting the stage focused on patient and physician support for EP trial involvement, including patients’ interest in research and oncologists’ awareness of trials and assessment of patient fit. Securing a seat focused on eligibility for and entrance to a specific trial and involved trial availability, treatment history, disease progression, and enrollment timing. Patients enrolled in a trial only when both stages could be successfully navigated. CONCLUSION: Ethnographic data revealed two foci of deliberation about EP trial enrollment among patients with advanced cancer. Physician support played a consequential role in both stages, but enrollment also reflected factors beyond the control of any specific individual. Insights from this study, combined with other recent studies of trial enrollment, advance our understanding of the complex process of EP trial accrual and may help identify strategies to improve rates of participation.
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Ragosta, Summer, Ivelyn Harris, Ntim Gyakari, Emmanuel Otoo, and Alex Asase. "Participatory Ethnomedicinal Cancer Research with Fante-Akan Herbalists in Rural Ghana." Ethnobiology Letters 6, no. 1 (July 21, 2015): 66–79. http://dx.doi.org/10.14237/ebl.6.1.2015.253.
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An ethnomedicinal study was initiated with herbalists in coastal Central Region Ghana to explore how cancer is defined, diagnosed, and treated within a traditional Fante-Akan context. The participatory, service-oriented investigation included international collaboration with herbalists and traditional plant experts. On-site meetings informed community leaders and members of project intent and methods, guided protocol, and gauged critical support. To provide immediate educational and economic opportunities, hands-on activities with villagers transferred academic and applied skills. Ethnographic interviews and voucher specimen collections were conducted with seven herbalists. Plant samples were dried and housed locally in a community herbarium cabinet constructed in Kormantse. Ten cancer ethnopharmacopoeia plants were identified, most of which are species considered native to tropical Africa. Fante Akan herbalists listed various types of cancers they treat with herbal remedies, along with ethnomedicinal descriptions of disease etiology, diagnoses, and treatments. The most common cancer type mentioned was “breast cancer.” Topical application was the most often cited method of administering remedies. Researchers established key contacts in the Kormantse, Salt Pond, and Elmina communities, and identified local and international research collaborators for a proposed interdisciplinary project focused on longitudinal case studies with herbalists, patients, and medical physicians.
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Sidenius, Anne, Helle Ploug Hansen, Ole Mogensen, Martin Rudnicki, and Tine Tjørnhøj-Thomsen. "Temporality and timework: Danish endometrial cancer patients’ experiences of an accelerated cancer patient pathway." Time & Society 29, no. 3 (March 29, 2020): 866–91. http://dx.doi.org/10.1177/0961463x20912848.
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Early diagnosis and rapid treatment are deemed essential in relation to cancer. In 2007, Denmark implemented accelerated cancer patient pathways with predetermined time frames to reduce waiting time. In this article, based on fieldwork with observations at two hospitals and ethnographic interviews, we examine temporal experiences of the cancer patient pathway for endometrial cancer of the uterus at stage I. Results show that while the cancer patient pathway helps suspend thoughts of death it also brings a sense of timely confusion and concerns about whether disease has spread. This ambivalence is linked to a political discourse of cancer in general as acute and a clinical, biomedical framing of endometrial cancer in particular as “good” due to its slow growth. We demonstrate how women customize their temporal experiences to accelerate or decelerate time and argue that waiting is not necessarily a passive state. We emphasize the need for professionals to be aware that the cancer patient pathway time and subjective patient time are not always synchronized.
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Buiting, Hilde M., Remco de Bree, Linda Brom, Jennifer W. Mack, and Michiel W. M. van den Brekel. "Humour and laughing in patients with prolonged incurable cancer: an ethnographic study in a comprehensive cancer centre." Quality of Life Research 29, no. 9 (April 6, 2020): 2425–34. http://dx.doi.org/10.1007/s11136-020-02490-w.
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Kim, Kyounghae, Katherine Heinze, Jiayun Xu, Melissa Kurtz, Hyunjeong Park, Megan Foradori, and Marie T. Nolan. "Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography." Western Journal of Nursing Research 40, no. 12 (August 17, 2017): 1861–84. http://dx.doi.org/10.1177/0193945917723010.
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The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.
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Gibbon, Sahra. "Translating genomics: cancer genetics, public health and the making of the (de)molecularised body in Cuba and Brazil." História, Ciências, Saúde-Manguinhos 23, no. 1 (March 2016): 95–112. http://dx.doi.org/10.1590/s0104-59702016000100007.
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Abstract This article examines how cancer genetics has emerged as a focus for research and healthcare in Cuba and Brazil. Drawing on ethnographic research undertaken in community genetics clinics and cancer genetics services, the article examines how the knowledge and technologies associated with this novel area of healthcare are translated and put to work by researchers, health professionals, patients and their families in these two contexts. It illuminates the comparative similarities and differences in how cancer genetics is emerging in relation to transnational research priorities, the history and contemporary politics of public health and embodied vulnerability to cancer that reconfigures the scope and meaning of genomics as “personalised” medicine.
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Merrild, Camilla Hoffmann, and Rikke Sand Andersen. "Disengaging with the cancerous body." Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 25, no. 1 (May 10, 2019): 21–36. http://dx.doi.org/10.1177/1363459319848049.
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In recent years, the organisation of healthcare in many welfare states is gradually moving towards an individualised and responsibility-driven self-care and use of healthcare services. Departing in this restructuring of care, this article explores how bodies are experienced and how care is sough, by socially disadvantaged cancer patients. Based on repeated ethnographic interviews with 10 socially deprived cancer patients in Denmark, the article illustrates that socially disadvantaged cancer patients often experience their bodies and move between feeling fine and feeling sick in a disjunctive manner engulfed by the practicality of getting through the day. From a critical phenomenological perspective, we argue that this way of being in the world appears counterfactual to welfare expectations of proactive attention to the body, and contemporary moves towards increased individual responsibility for preventing serious disease and monitoring the body.
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Høybye, Mette Terp, Pia Riis Olsen, Helena Eva Hansson, David Spiegel, Henrik Bennetsen, and Ewen Cheslack-Postava. "Virtual environments in cancer care: Pilot-testing a three-dimensional web-based platform as a tool for support in young cancer patients." Health Informatics Journal 24, no. 4 (November 28, 2016): 419–31. http://dx.doi.org/10.1177/1460458216678442.
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Bringing virtual environments into cancer support may offer a particular potential to engage patients and increase adherence to treatment. Developing and pilot-testing an online real-time multi-user three-dimensional platform, this study tested the use of an early prototype of the platform among adolescent and young adult cancer patients. Data were collected with an online questionnaire and using ethnographic methods of participant observation. The adolescent and young adult patients tested basic features of the virtual environment and some conducted brief in-world interactions with fellow patients during hospitalization. They had no reservations about using the technology and shared their ideas about its use. Our pilot test pointed to a number of areas of development for virtual environment applications as potential platforms for medical or behavioral interventions in cancer care. Overall, the results demonstrate the need for high user involvement in the development of such interventions and early testing of intervention designs.
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Uhrenfeldt, Lisbeth, and Mette Terp Høybye. "Lived experiences and challenges of older surgical patients during hospitalization for cancer: An ethnographic fieldwork." International Journal of Qualitative Studies on Health and Well-being 9, no. 1 (January 2014): 22810. http://dx.doi.org/10.3402/qhw.v9.22810.
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Sulaiman, Szariannie, and Noor Azlan Mohd Noor. "The Utilisation of Traditional Medicine among Young Malay Breast Cancer Patients." Malaysian Journal of Social Sciences and Humanities (MJSSH) 6, no. 10 (October 10, 2021): 358–64. http://dx.doi.org/10.47405/mjssh.v6i10.1088.
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This is a qualitative study examining the utilisation pattern of traditional medicine among young Malay women breast cancer patients. The study has shown that there is an increasing number of breast cancer patients to opt for traditional medicine in searching for a cure. To address the issue, an ethnographic fieldwork was carried out in Klang Valley and several selected areas of Selangor. Thirteen (13) young Malay breast cancer patients were selected as informants for this study by employing purposive snowballing technique. Guided by semi-structured interview schedule, a series of in-depth interviews, phone and online interviews and participant observation were conducted at various settings to capture informants’ health seeking behaviour. It is evident that traditional medicine is still prevalent as one of the treatment options among breast cancer patients. They strongly believed that relying on a single treatment for chronic illness like breast cancer is insufficient. In relation to this, traditional healers and health practitioners such as bomoh and ustaz were consulted by Malay informants either as an alternative or complementary for a cure. Several treatment methods such as herbal remedies for oral consumption, air penawar (healing water) for drinking and bathing and specific item such as an egg for surgery-like procedure were prescribed to treat the cancer-related symptoms suffered. In most instances, majority of the patients were guided by family and friends’ suggestions towards the utilisation of traditional medicine.
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Triratnawati, Atik, and Dewi Novyantari. "Mitos dan Pengetahuan Masyarakat Desa Tentang Kanker Payudara." Jurnal Kesehatan Reproduksi 7, no. 3 (January 22, 2021): 150. http://dx.doi.org/10.22146/jkr.59838.
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Background: Breast cancer is a scary disease among the society. Myths related to breast cancer that still exist in society will affect their preventive behavior.Objective: To identify the knowledge and myths in society about breast cancer.Method: This ethnographic study used participatory observation and in-depth interviews with 12 informants consisting of 3 breast cancer patients and 9 non-breast cancer survivors in Jlegiwinangun Village, Kutowinangun, Kebumen, Central Java.Results and Discussion: Breast cancer was considered a frightening disease that can be caused by heredity, eating patterns, and unhealthy behavior. The existing of breast cancer myths, which dispread verbally is indicated that myths is important as preventive behavior.Conclusion: Knowledge and myths of breast cancer in Jlegiwinangun Village are a part of preventive behavior. The existing of myths are indicated the limited insight and information related aetiology, cure and prevention to breast cancer.Kata kunci: myths, community knowledge, village, breast cancer
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Tredinnick-Rowe, John. "The semiotics of breast cancer: Signs, symptoms, and sales." Semiotica 2019, no. 227 (March 5, 2019): 187–210. http://dx.doi.org/10.1515/sem-2016-0107.
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AbstractThis paper analyses the immunological response of breast cancer patients through the lens of medical semiotics. From this perspective both psychological and physiological symptoms are treated as a set of transitive signs. The symptomatic journey of breast cancer patients was documented through an ethnographic engagement with a breast cancer charity. This journey consists of diagnosis, treatment and remission, where both the physical and psychological trauma maybe irreversible. Equally the genetic disposition of each patient and the variability of the treatment give rise to a plethora of possible immunological responses. The case study organization provided both therapeutic treatment but also sold oncology products to its patients, matching the products’ composition to the specific immunological responses caused by breast cancer treatment, e.g., brittle skins or hair loss, etc. This paper explores how the varied and transient nature of immunological semiosis is identified and commoditized into an economic process. This challenging social context is of interest from a semiotic stand point because it offers a singular paradigm to explain the evolution of signs and symptoms into sales.
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Shamir, Ronen. "Preventicum: The osmotic space of health." Current Sociology 65, no. 4 (March 27, 2017): 492–510. http://dx.doi.org/10.1177/0011392117694070.
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Ethnographic observations at an early-detection centre for cancer serve as a basis for theorising the spatiality of preventive medicine. Based on insights from both the sociology of health and the sociology of space, the article outlines a re-spatialisation of health by articulating the concept of osmotic-spatiality: spatial-temporal arrangements which transform health into a personal task and an individual achievement, producing the subjectivity of ‘healthy patients’.
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Husaini, Asmah. "THE ROLE OF NURSES IN PROVIDING PALLIATIVE CARE FOR DYING CANCER PATIENTS: A META-ETHNOGRAPHIC SYNTHESIS." BMJ Supportive & Palliative Care 4, Suppl 1 (March 2014): A1.3—A2. http://dx.doi.org/10.1136/bmjspcare-2014-000654.3.
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Oureilidis-DeVivo, Barbara. "An ethnographic study illuminating the effect of endogenous and exogenous uncertainty on tumor board decision making." Journal of Clinical Oncology 38, no. 15_suppl (May 20, 2020): e19156-e19156. http://dx.doi.org/10.1200/jco.2020.38.15_suppl.e19156.
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e19156 Background: Hospital tumor boards (TBs) exist to help multidisciplinary specialists determine the best treatment plan for patients through multidisciplinary input and evidence-based treatment recommendations. However, decision-making processes and outcomes vary and may not consistently follow a linear, rational decision-making process or represent evidenced-based clinical guidelines. The ad hoc nature of multidisciplinary cancer teams can create limitations in interoperable functioning, especially in ambiguous environments. Methods: This qualitative ethnographic study explores levels of patient situational complexity under TB review within different structural dynamics in a group and describes how TBs cope with uncertainty when making treatment decisions. The study reports on original research and used ethnographic methods in 44 tumor boards at seven research hospitals in the United States and United Kingdom. Results: Results show TB decision-making process and outcomes are obstructed by the level of situational complexity in each patient’s case depending on the social dynamics of the group. Conclusions: Although multidisciplinary teams provide the benefit of variety in backgrounds and expertise, this structural diversity can also lead to limitations in the actual functioning of a group. By exploring the variations in this decision-making process, a deeper understanding can be reached of how oncology physicians make decisions about the clinical pathway for cancer patients and how this affects TB functionality.
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Atobrah, Deborah, and Akosua Adomako Ampofo. "Expressions of Masculinity and Femininity in Husbands’ Care of Wives with Cancer in Accra." African Studies Review 59, no. 1 (April 2016): 175–97. http://dx.doi.org/10.1017/asr.2016.2.
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Abstract:This article explores the care that husbands in Accra, Ghana, provide for wives who have been diagnosed with cancer. Making use of an inductive, qualitative approach, the study analyzes observations of and in-depth ethnographic interviews conducted with five married female cancer patients and their husbands over a ten-month period. The results suggest a strong association among husbands’ care, wives’ responses to husbands’ care, and cultural ideals of femininity and masculinity. The findings suggest that husbands’ selective and often limited gender-based investments in unpaid care work make their sick wives exceedingly vulnerable in a context in which care for the terminally ill takes place predominately in familial settings.
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Torres-Blasco, Normarie, Eida Castro, Iris Crespo-Martín, Karina Gonzalez, Emely Perez Ramirez, Olga Garduño, and Rosario Costas-Muñiz. "Comprehension and acceptance of the Meaning-Centered Psychotherapy with a Puerto Rican patient diagnosed with advanced cancer: A case study." Palliative and Supportive Care 18, no. 1 (November 27, 2019): 103–9. http://dx.doi.org/10.1017/s1478951519000567.
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AbstractBackgroundMeaning-centered psychotherapy (MCP) is a structured psychotherapeutic intervention that aims to improve existential and spiritual well-being in patients with advanced cancer. To validate it, several efficacy studies with predominantly non-Hispanic white patients have been done. Puerto Ricans residing on the island are a largely overlooked segment of the US Latinx population. They have a strong national identity and are embedded in a collectivist culture which shares the Spanish language, cultural traditions, and an emphasis on familism, a cultural factor that values the role of the family in ensuring the well-being of its members.ObjectiveThe purpose of this study is to present a case study focused on a Puerto Rican advanced cancer patient who underwent MCP to assess the comprehension and acceptance of the MCP intervention.MethodWe used a mixed-methods study design that included the taking of ethnographic notes, and pre- and post-test assessments of the scores the patient received on all the measures (using validated scales). The ethnographic notes were analyzed to determine the participant's comprehension and acceptance of the MCP intervention. Content analysis was performed on the ethnographic notes by three independent coders using a deductive coding approach. Pre- and post-interview assessments were conducted to explore changes in distress, spiritual well-being, and self-perceived quality of life.ResultsA Latino patient with stage III cancer, low income, and low literacy skills showed low comprehension of the concepts of meaning, the finite, legacy, and moderate comprehension and acceptance of the concepts of the search for hope, purpose in life, connecting with life, courage, life's limitations, and sources of meaning. However, the patient showed high comprehension of death and dying (i.e., meaningful death). The patient showed low acceptance of death and dying concepts and high acceptance of the integration of family members into the therapy.Significance of ResultsAdditional studies are needed to address cultural themes and to improve the comprehensibility and acceptance of the manual's content and the central MCP concepts. The findings suggest that MCP has the potential of being a feasible form of psychotherapy for Latinx patients suffering from distress, low spiritual well-being, and low self-perceived QOL.
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Halpin, Sean, Kathleen Len, and Michael Konomos. "Talking about Complimentary and Alternative Medicine: A Conversation Analysis Study." Innovation in Aging 5, Supplement_1 (December 1, 2021): 833–34. http://dx.doi.org/10.1093/geroni/igab046.3053.
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Abstract Multiple Myeloma (MM) is a clonal plasma cell malignancy characterized by low blood counts and increased risk of infection, and primarily afflicts older adults. Although MM is incurable, advances in treatment, including autologous stem cell transplant (ASCT) has improved the lifespan of patients. MM patients commonly use over-the-counter complementary and alternative medicines (CAM) alongside conventional cancer therapies which, often without recognition by health care practitioners, may impact their treatment. Using data from an 18-month ethnographic study, we applied conversation analysis to examine 1180 minutes of audio-recordings to describe how patients and nurses interacted about CAM during ASCT education visits. Patients (n=12) had a median age of 62 years (IQR= 54-73), were mostly white (n=12, 75%), male (n=9, 56%), and had a moderate score on the FACT-G7 of 15 (IQR= 10-20). All patients had a caregiver present during their visit. Nurses (n=3) were aged 39 (IQR= 29-49) all with at least five years providing care to patients with blood cancers. Results suggested that nurses rarely provided direct feedback about CAM modalities, instead providing brief responses, and moving on to other topics. Excerpts were categorized into three groups, (1) demonstration of implicit epistemic authority, (2) demonstration of deferred epistemic authority in patient-initiated conversations, and (3) demonstration of deferred epistemic authority in nurse-initiated conversations. Understanding how conversations surrounding CAM are navigated can provide insights into patient-communication in general, and methods for improving ASCT education.
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Henrikson, Nora B., Matthew P. Banegas, Leah Tuzzio, Catherine Lim, Jennifer L. Schneider, Callie Walsh-Bailey, Aaron Scrol, and Stephanie M. Hodge. "Clinical workflows to support cost-of-care conversations: Multisite design study." Journal of Clinical Oncology 36, no. 30_suppl (October 20, 2018): 168. http://dx.doi.org/10.1200/jco.2018.36.30_suppl.168.
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168 Background: Patients prefer to discuss costs in the clinical setting, but current workflows are not designed to support cost-of-care conversations. Methods: We conducted a human centered design study to identify clinical workflows that optimize cost of care conversations. We conducted ethnographic observations at primary care departments or oncology clinics at two integrated health systems, assessing barriers and facilitators to discussing costs with patients. We then designed three unique patient experiences of having financial concerns addressed in the clinic setting. We refined these experiences following in-person patient interviews (n = 20). All data was synthesized into (1) a set of clinical workflow requirements and (2) journey maps describing sample workflows for the three patient experiences. Results: Most patient cost concerns take one of three unique pathways, each with workflow implications: (1) informing clinical decision-making, such as alternative treatment selection, mode of administration, or therapy sequence; (2) planning and budgeting concerns for therapy; and (3) addressing immediate financial hardship. Workflow requirements include organizational recognition of the need for clinic-based cost of care conversations; access to cost and benefits data to support each conversation pathway; clear team member roles and responsibilities for addressing cost of care concerns, including the role of the physician; pursuit of a patient experience that includes a clinical culture where cost questions are normal and each patient's values, preferences, and privacy are respected; patients know who to go to with cost questions; patients' concerns are documented to minimize repetition to multiple team members; and patients learn their expected OOP costs before treatment begins. Conclusions: Clinic-based workflows for cost-of-care conversations that optimize patients’ care experience require organizational commitment to addressing cost concerns, clear roles and responsibilities, appropriate and complete data access, and a team-based approach.
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Muniz, Rosani Manfrin, and Marcia Maria Fontão Zago. "The oncologic radiotherapy experience for patients: a poison-drug." Revista Latino-Americana de Enfermagem 16, no. 6 (December 2008): 998–1004. http://dx.doi.org/10.1590/s0104-11692008000600010.
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The study aimed at understanding the patients' experience with oncologic radiotherapy. The anthropological interpretative approach and the ethnographic method guided the investigation. Ten patients took part in the study. They were of both genders, within the age range from 34 to 80 years old and monitored during radiotherapy treatment. Data were collected through semi-structured interviews, participative observation and medical records. The analysis of the respondents' statements allowed for the identification of the units of meaning: The encounter with radiotherapy, the body as a vehicle for radiotherapy action and alternative healthcare practices that relieved the effects of the treatment. We understand that the oncologic radiotherapy experience meant the need to submit to a therapy with a characteristic of a poison-drug, which causes fear, but was necessary, whether the goal was cure or even cancer survival.
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Palmer, Nynikka R., Janet K. Shim, Celia P. Kaplan, Dean Schillinger, Sarah D. Blaschko, Benjamin N. Breyer, and Rena J. Pasick. "Ethnographic investigation of patient–provider communication among African American men newly diagnosed with prostate cancer: a study protocol." BMJ Open 10, no. 8 (August 2020): e035032. http://dx.doi.org/10.1136/bmjopen-2019-035032.
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IntroductionIn the USA, African American men bear a disproportionate burden of prostate cancer (PCa) compared with all other groups, having a higher incidence and mortality, poorer quality of life and higher dissatisfaction with care. They are also less likely to receive guideline-concordant treatment (eg, undertreatment of aggressive disease). Inadequate patient–provider communication contributes to suboptimal care, which can be exacerbated by patients’ limited health literacy, providers’ lack of communication skills and time constraints in low-resource, safety net settings. This study is designed to examine the communication experiences of African American patients with PCa as they undertake treatment decision-making.Methods and analysisUsing an ethnographic approach, we will follow 25 African American men newly diagnosed with PCa at two public hospitals, from diagnosis through treatment decision. Data sources include: (1) audio-recorded clinic observations during urology, radiation oncology, medical oncology and primary care visits, (2) field notes from clinic observations, (3) patient surveys after clinic visits, (4) two in-depth patient interviews, (5) a provider survey, and (6) in-depth interviews with providers. We will explore patients’ understanding of their diagnoses and treatment options, sources of support in decision-making, patient–provider communication and treatment decision-making processes. Audio-recorded observations and interviews will be transcribed verbatim. An iterative process of coding and team discussions will be used to thematically analyse patients’ experiences and providers’ perspectives, and to refine codes and identify key themes. Descriptive statistics will summarise survey data.Ethics and disseminationTo our knowledge, this is the first study to examine in-depth patient–provider communication among African American patients with PCa. For a population as marginalised as African American men, an ethnographic approach allows for explication of complex sociocultural and contextual influences on healthcare processes and outcomes. Study findings will inform the development of interventions and initiatives that promote patient-centred communication, shared decision-making and guideline-concordant care. This study was approved by the University of California San Francisco and the Alameda Health System Institutional Review Boards.
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Buiting, Hilde M., Femke Botman, Veerle Busink, Elzbeth Oomen, and Vincent K. Y. Ho. ""Everything that is not curative is now palliative": A nurse perspective." Journal of Clinical Oncology 36, no. 34_suppl (December 1, 2018): 127. http://dx.doi.org/10.1200/jco.2018.36.34_suppl.127.
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127 Background: Advances in oncology increasingly result in protracted disease trajectories for patients with incurable cancer. This phase can be described as advanced / metastatic cancer and in which anti-cancer treatment should control symptoms, slow disease progression, and/or prolong life. It poses new challenges for patients and their doctors; it is unknown how and which disease labels are used by nurses. Methods: Qualitative ethnographic study, based on in-depth interviews with 13 oncology nurses at the day-care unit in a Dutch comprehensive cancer hospital. Results: A substantial number of nurses reported not to know whether patients were treated with a curative or palliative intent, and to follow a patient-centred approach. Other nurses clearly demarcated palliative patients, and some distinguished "real palliative patients" from patients with long-standing incurable cancer. When nurses were explicitly asked about medical terminology, many nurses were not very positive about the term "palliative". They considered this to be an old term, e.g. "Now everything that is not curative is palliative". Moreover, the term "palliative" could have an ambiguous/threatening meaning, especially for patients. Whereas nurses often associated the term "palliative" with alleviating symptoms, for patients this term was frequently associated with the approaching death. Most nurses therefore preferred not to use the term "palliative" in front of the patient; but only amongst nurses themselves. Since nurses had not previously been provoked to think about other terms, they were unsure whether "chronic" was the right term. Some indicated that cancer was rather different compared to other chronic diseases, others felt unsure when to use the term "chronic" at all. Conclusions: According to nurses, the use of specific medical terms such as "chronic" to describe the situation of patients in protracted disease trajectories is unclear. Although they acknowledge differences across the palliative care continuum, they refrain from using the word "palliative" in front of the patient. Nurses’ awareness of the disease stage (curative/palliative/ "chronic") might be important to optimise to patients’ specific needs in every disease phase.
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Therond, Clara, Anne Lanceley, Sahra Gibbon, and Belinda Rahman. "The narrative paradox of the BRCA gene: an ethnographic study in the clinical encounters of ovarian cancer patients." Anthropology & Medicine 27, no. 4 (February 3, 2020): 449–64. http://dx.doi.org/10.1080/13648470.2019.1663784.
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Hamilton, David Winston, Benjamin Heaven, Richard Thomson, Janet Wilson, and Catherine Exley. "How do patients make decisions in the context of a multidisciplinary team: an ethnographic study of four head and neck cancer centres in the north of England." BMJ Open 12, no. 8 (August 2022): e061654. http://dx.doi.org/10.1136/bmjopen-2022-061654.
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ObjectivesTo describe how patients are engaged with cancer decisions in the context of multidisciplinary team (MDT) and how MDT recommendations are operationalised in the context of a shared decision.DesignEthnographic qualitative study.SettingFour head and neck cancer centres in the north of England.ParticipantsPatients with a diagnosis of new or recurrent head and neck cancer; non-participant observation of 35 MDT meetings and 37 MDT clinics, informal interviews, and formal, semistructured interviews with 20 patients and 9 MDT staff members.MethodsEthnographic methods including non-participant observation of MDT meetings and clinic appointments, informal interviews, field notes and formal semistructured interviews with patients and MDT members.ResultsMDT discussions often conclude with a firm recommendation for treatment. When delivered to a patient in clinic, this recommendation is often accepted by the patient, but this response may result from the disempowered position in which they find themselves. While patient behaviour may thus appear to endorse clinicians’ views that a paternalistic approach is desired by patients (creating a ‘cycle of paternalism’), the rigidity of the MDT treatment recommendation can act as a barrier to discussion of options and the exploration of patient values.ConclusionsThe current model of MDT decision-making does not support shared decision-making and may actively undermine it. A model should be developed whereby the individual patient perspective has more input into MDT discussions, and where decisions are made on potential treatment options rather than providing a single recommendation for discussion with the patient. Deeper consideration should be given to how the MDT incorporates the patient perspective and/or delivers its discussion of options to the patient. In order to achieve these objectives, a new model of MDT working is required.
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Fishler, Kristen P., Erin H. Breese, Lauren Walters-Sen, and Michelle L. McGowan. "Experiences of a Multidisciplinary Genomic Tumor Board Interpreting Risk for Underlying Germline Variants in Tumor-Only Sequencing Results." JCO Precision Oncology, no. 3 (December 2019): 1–8. http://dx.doi.org/10.1200/po.18.00216.
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PURPOSE Although analyzing germline and tumor samples concurrently provides the best opportunity for differentiating between germline and somatic mutations, tumor-only sequencing is becoming increasingly common in clinical care. The purpose of this study is to assess how a multidisciplinary genomic tumor board (MGTB) evaluated patients’ tumor-only sequencing results and made genetics referrals. With limited professional society guidance on how to manage pathogenic mutations identified via tumor-only sequencing, this study contemplates the professional knowledge and skills necessary to have represented on an MGTB to interpret these results in context of potential germline findings. METHODS Qualitative interviews with MGTB members and an ethnographic case study of a breast cancer MGTB at a National Cancer Institute cancer center were examined. RESULTS This MGTB discussed 34 cases of women with advanced-stage breast cancer over 13 months. Interviews and observations of MGTB meetings indicated that members of the MGTB contemplated whether variants were germline or somatic and potential for identification of germline cancer predisposition. On the basis of existing professional society guidelines, 18 patients would be eligible for germline testing. However, the MGTB only referred 11 patients (61%) for additional germline testing, and the remaining seven patients (39%) were not referred, raising questions about the kind of genomic expertise needed on an MGTB to optimize results interpretation and referrals. CONCLUSION To ensure adequate interpretation, recommendation, and communication of tumor sequencing results, an MGTB should include professionals with knowledge and experience in clinical translation of tumor sequencing, testing methodology, molecular pathology, cancer biology, genomic pathways, germline variant interpretation, evaluation of family history, and application of professional recommendations for germline testing after tumor-only sequencing. These skills may not be held by a single professional on an MGTB.
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Vedelø, Tina Wang, Jens Christian Hedemann Sørensen, and Charlotte Delmar. "”Being Alone Surrounded by Healthcare Providers”—Exploring an Integrated Brain Cancer Pathway From a Patient Perspective: A Longitudinal Case Study." International Journal for Human Caring 23, no. 1 (March 1, 2019): 23–39. http://dx.doi.org/10.20467/1091-5710.23.1.23.
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A longitudinal single case study was conducted to identify and describe in-depth the context bound experiences and needs of information, communication, and support during a 9-month hospital journey of a patient with a malignant brain tumor going through a standardized Integrated Brain Cancer Pathway. Patients suffering from malignant brain tumors often have a reduced ability to process information and communicate their needs. A qualitative analysis of 25 patient interviews and extensive ethnographic field notes revealed that the patient experienced being alone, although surrounded by healthcare providers, and had to develop strategies to manage the responsibility given in the pathway.