Taking Responsibility

Ovarian Cancer Patients’ Perspectives on Delayed Healthcare Seeking

in Anthropology in Action
Author:
Susanne Brandner Hospital Dueren susanne.brandner@googlemail.com

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Wiebke Stritter Charité Universitätsmedizin Berlin wiebke.stritter@charite.de

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Jacqueline Müller-Nordhorn Charité Universitätsmedizin Berlin jacqueline.mueller-nordhorn@charite.de

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Jalid Sehouli Queen Charlotte’s and Chelsea Hospital chfotopoulou@gmail.com

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Christina Fotopoulou Charité Universitätsmedizin Berlin jalid.sehouli@charite.de

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Christine Holmberg Charité Universitätsmedizin Berlin christine.holmberg@charite.de

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Abstract

Patient-related diagnostic delay has been established as an analytical category in cancer research. This category has come under critique because it postulates linear cause-and-effect explanations of delayed care-seeking. These explanations are based on a one-dimensional idea of causality that neglects the processual character and the contextual situatedness of bodily experiences and care-seeking decisions. Using a notion of causality that is both process-oriented and context-sensitive, this article aims to understand ovarian cancer patients’ stories on delayed healthcare seeking. It uses data from a qualitative interview study that investigated ovarian cancer patients’ illness and healthcare-seeking experiences. We suggest that the interviewees’ retrospective perspective generated a multilayered notion of diagnostic delay that differs from the definition of patient-related delay commonly used in the literature. Our analysis shows how interviewees negotiate current social discourses on health and (social) responsibility, and thereby situate themselves and their healthcare seeking within a broader socio-economic and political context.

Contributor Notes

Susanne Brandner works as a physician at the Department of Gynaecology, Obstetrics and Oncology, Hospital Dueren. She holds a doctorate in Medicine and a Master of Social Anthropology. Her main re-search interests focus on the interface of gynaecologic oncology and medical anthropology. E-mail: susanne.brandner@googlemail.com

Wiebke Stritter works as a psychologist and research associate at the Department of Paediatrics, Division of Oncology and Haematology and is a PhD candidate at the Institute of Public Health both at the Charité Universitätsmedizin Berlin. Her main re-search interests are in health service research and integrative medicine primarily in paediatric oncology. E-mail: wiebke.stritter@charite.de

Jacqueline Müller-Nordhorn is a physician and a professor of Public Health at the Institute of Public Health, Charité – Universitätsmedizin Berlin. In 2015 she became ASPHER (Association of Schools of Public Health in the European Region) president. Her research focuses on health services research, particularly cardiovascular diseases and cancer, and evidence-based prevention. E-mail: jacqueline.mueller-nordhorn@charite.de

Jalid Sehouli is a gynaecological oncologist and the director of the Department of Gynaecology at the Charité Universitätsmedizin Berlin. He is the head of the European Competence Center for Ovarian Cancer and a member of the executive boards of several national and international medical societies in gynaecological oncology. E-mail: jalid.sehouli@charite.de

Christina Fotopoulou is a consultant gynaecological oncologist at Queen Charlotte’s & Chelsea Hospital, London, UK. She was the leading consultant and vice director of the Clinic for Gynaecology at the Charité in Berlin. She has also been the principal coordinator of the European Competence Centre for Ovarian Cancer. E-mail: chfotopoulou@gmail.com

Christine Holmberg holds a doctorate in Anthropology and a Master of Public Health in Epidemiology. She is senior researcher at the Institute of Public Health, Charité- Universitätsmedizin Berlin, where she established and heads a research group dedicated to understanding and improving health decision-making, illness experience and knowledge circulation. E-mail: christine.holmberg@charite.de

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  • Andersen, R. S. (2010), ‘Anthropological Perspectives in the Biomedically Defined Problem of “Patient Delay”’, in The Taste for Knowledge: Medical Anthropology Facing Medical Realities, (ed.) S. Fainzang, H. E. Hem and M. B. Risør (Aarhus: Aarhus University Press), 5768.

    • Search Google Scholar
    • Export Citation
  • Andersen, R. S. and M. B. Risør (2014), ‘The Importance of Contextualization: Anthropological Reflections on Descriptive Analysis, Its Limitations and Implications’, Anthropology and Medicine 21: 345356.

    • Search Google Scholar
    • Export Citation
  • Andersen, B. L., J. T. Cacioppo and D. C. Roberts (1995), ‘Delay in Seeking a Cancer Diagnosis: Delay Stages and Psychophysiological Comparison Processes’, British Journal of Social Psychology 34: 3352.

    • Search Google Scholar
    • Export Citation
  • Bankhead, C. R., S. T. Kehoe and J. Austoker (2005), ‘Symptoms Associated with Diagnosis of Ovarian Cancer: A Systematic Review’, BJOG 112: 857865.

    • Search Google Scholar
    • Export Citation
  • Birnbacher, D. (2001), ‘Philosophical Foundation of Responsibility’, in Responsibility: The Many Faces of a Social Phenomenon, (ed.) A. E. Auhagen and H. W. Bierhoff (London: Routledge), 923.

    • Search Google Scholar
    • Export Citation
  • Brandner, S., J. Müller-Nordhorn, W. Stritter, C. Fotopoulou, J. Sehouli and C. Holmberg (2014), ‘Symptomization and Triggering Processes: Ovarian Cancer Patients’ Narratives on Prediagnostic Sensation Experiences and the Initiation of Healthcare-Seeking’, Social Science & Medicine 119: 123130.

    • Search Google Scholar
    • Export Citation
  • Buddeberg, E. (2011), Verantwortung im Diskurs: Grundlinien einer Rekonstruktiv-Hermeneutischen Konzeption Moralischer Verantwortung im Anschluss an Hans Jonas, Karl-Otto Apel und Emmanuel Lévinas (Berlin: Walter de Gruyter).

    • Search Google Scholar
    • Export Citation
  • Conrad, P. (2007), The Medicalization of Society: On the Transformation of Human Conditions into Treatable Disorders (Baltimore: Johns Hopkins University Press).

    • Search Google Scholar
    • Export Citation
  • Donahue, J. M. and M. B. McGuire (1995), ‘The Political Economy of Responsibility in Health and Illness’, Social Science & Medicine 40: 4753.

    • Search Google Scholar
    • Export Citation
  • Dworkin, S. L. and F. L. Wachs (2009), Body Panic: Gender, Health, and the Selling of Fitness (New York: New York University Press).

  • Einstein, G., A. Au, J. Klemensberg, E. M. Shin and N. Pun (2012), ‘The Gendered Ovary: Whole Body Effects of Oophorectomy’, Canadian Journal of Nursing Research 44: 717.

    • Search Google Scholar
    • Export Citation
  • Evans, J., S. Ziebland and A. McPherson (2007), ‘Minimizing Delays in Ovarian Cancer Diagnosis: An Expansion of Andersen’s Model of “Total Patient Delay”’, Family Practice 24: 4855.

    • Search Google Scholar
    • Export Citation
  • Ferrell, B., S. Smith, C. Cullinane and C. Melancon (2003), ‘Symptom Concerns of Women with Ovarian Cancer’, Journal of Pain and Symptom Managements 25: 528538.

    • Search Google Scholar
    • Export Citation
  • Fitch, M., K. Deane, D. Howell and R. E. Gray (2002), ‘Women’s Experiences with Ovarian Cancer: Reflections on Being Diagnosed’, Canadian Oncology Nursing Journal 12: 152168.

    • Search Google Scholar
    • Export Citation
  • Gray, G. C. (2009), ‘The Responsibilization Strategy of Health and Safety: Neo-liberalism and the Reconfiguration of Individual Responsibility for Risk’, British Journal of Criminology 49: 326342.

    • Search Google Scholar
    • Export Citation
  • Guttman, N. and W. H. Ressler (2001), ‘On Being Responsible: Ethical Issues in Appeals to Personal Responsibility in Health Campaigns’, Journal of Health Communication 6: 117136.

    • Search Google Scholar
    • Export Citation
  • Harper, E. A. and G. Rail (2012), ‘“Gaining the Right Amount for My Baby”: Young Pregnant Women’s Discursive Construction of Health’, Health Sociology Review 21: 6981.

    • Search Google Scholar
    • Export Citation
  • Jayde, V. and M. Boughton (2012), ‘The Diagnostic Journey of Ovarian Cancer: A Review of the Literature and Suggestions for Practice’, Contemporary Nurse 41: 517.

    • Search Google Scholar
    • Export Citation
  • Klawiter, M. (2002), ‘Risk, Prevention and the Breast Cancer Continuum: The NCI, the FDA, Health Activism and the Pharmaceutical Industry’, History and Technology 18: 309353.

    • Search Google Scholar
    • Export Citation
  • Koldjeski, D., M. K. Kirkpatrick, M. Swanson, L. Everett and S. Brown (2005), ‘An Ovarian Cancer Diagnosis-seeking Process: Unraveling the Diagnostic Delay Problem’, Oncology Nursing Forum 32: 10361042.

    • Search Google Scholar
    • Export Citation
  • Lundell, H., J. Niederdeppe and C. Clarke (2013), ‘Public Views about Health Causation, Attributions of Responsibility, and Inequality’, Journal of Health Communication 18: 116130.

    • Search Google Scholar
    • Export Citation
  • Lupton, D. (1995), The Imperative of Health: Public Health and the Regulated Body (London: Sage).

  • Martin, E. (1987), The Woman in the Body: A Cultural Analysis of Reproduction (Boston: Beacon Press).

  • Maxwell, J. A. (2012), ‘The Importance of Qualitative Research for Causal Explanation in Education’, Qualitative Inquiry 18: 655661.

    • Search Google Scholar
    • Export Citation
  • Minkler, M. (1999), ‘Personal Responsibility for Health? A Review of the Arguments and the Evidence at Century’s End’, Health Education and Behaviour 26: 121140.

    • Search Google Scholar
    • Export Citation
  • Nichter, M. and J. Thompson (2006), ‘For My Wellness, Not Just My Illness: North Americans’ Use Of Dietary Supplement’, Culture, Medicine and Psychiatry 30: 175222.

    • Search Google Scholar
    • Export Citation
  • OECD (2014), ‘Family Database: Time Use for Work, Care and Other Day-to-day Activities’, http://www.oecd.org/els/family/LMF2_5_Time_use_of_work_and_care.pdf(accessed 2 April 2016).

    • Search Google Scholar
    • Export Citation
  • Puhl, R. M. and C. A. Heuer (2009), ‘The Stigma of Obesity: A Review and Update’, Obesity 17: 94164.

  • Robert Koch Institut (RKI) (2003), ‘Gesundheitsberichterstattung des Bundes. Themenheft 14 – Gesundheit Alleinerziehender Mütter und Väter’, http://www.gbe-bund.de/pdf/Heft14.pdf(accessed 21 January 2016).

    • Search Google Scholar
    • Export Citation
  • Robert Koch Institut (RKI) (2013), ‘Krebs in Deutschland 2009/2010’, http://www.gekid.de/Doc/krebs_in_deutschland_2009_2010.pdf(accessed 6 March 2016).

    • Search Google Scholar
    • Export Citation
  • Robertson, A. (2000), ‘Embodying Risk, Embodying Political Rationality: Women’s Accounts of Risks for Breast Cancer’, Health, Risk & Society 2: 219235.

    • Search Google Scholar
    • Export Citation
  • Rose, N. (2006), The Politics of Life Itself (Princeton, NJ: Princeton University Press).

  • Roy, S. C. (2008), ‘“Taking Charge of Your Health”: Discourses of Responsibility in English-Canadian Women’s Magazines’, Sociology of Health & Illness 30: 463477.

    • Search Google Scholar
    • Export Citation
  • Schmidt, H. (2007), ‘Personal Responsibility for Health-developments under the German Healthcare Reform 2007’, European Journal of Health Law 14: 241250.

    • Search Google Scholar
    • Export Citation
  • Scott, S. E., E. A. Grunfeld, J. Main and M. McGurk (2006), ‘Patient Delay in Oral Cancer: A Qualitative Study of Patients’ Experiences’, Psycho-Oncology 15: 474485.

    • Search Google Scholar
    • Export Citation
  • Smith, L. K., C. Pope and J. L. Botha (2005), ‘Patients’ Help-seeking Experiences and Delay in Cancer Presentation: A Qualitative Synthesis’, Lancet 366: 825831.

    • Search Google Scholar
    • Export Citation
  • Strauss, A. and J. Corbin (1990), Basics of Qualitative Research: Grounded Theory Procedures and Techniques (London: Thousand Oaks, Sage).

    • Search Google Scholar
    • Export Citation
  • Yadlon, S. (1997), ‘Skinny Women and Good Mothers: The Rhetoric of Risk, Control, and Culpability in the Production of Knowledge about Breast Cancer’, Feminist Studies 23: 645677.

    • Search Google Scholar
    • Export Citation

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