SOSYO-BİYO-TEKNİK BAKIM KOMPLEKSİ: TİP 1 DİYABETTE DİJİTAL SAĞLIK TAKİBİ
Year 2021,
, 110 - 145, 07.04.2021
Melike Şahinol
,
Gülşah Başkavak
Abstract
Tüm dünyada olduğu gibi Türkiye’de de sağlık sektöründeki teknolojik gelişmeler ve dijitalleşmenin bir yansıması olarak dijital öz-takip (digital self-tracking) teknolojilerinin kullanımı hızla yaygınlaşmaktadır. Bu tür teknolojiler kronik hastalıkların takibinde ve yönetiminde yaygın olarak kullanılmaktadır. Bu çalışmada dijital sağlık verisi üreten öz-takip (self-tracking) cihazı Sürekli Glikoz İzleme Sistemleri’ni (CGM) kullanan Tip 1 diyabetli (T1D) yetişkinlerin ve çocuğu olan ebeveynlerin teknoloji üzerinden farklılaşan bakım biçimlerine ve deneyimlerine odaklanıyoruz. T1D hastalığında dijital öz-takip teknolojisi kullanımının hastalık sürecinde güçlendirici (empowerment) ve güçlendirici olmayan (disempowerment) etkileri ile bu iki etki arasında gelgitler sonucunda ileriye dönük ne gibi sonuçlar ortaya çıkardığı sorusu tıp, beden ve teknoloji sosyolojisi perspektiflerinden araştırılmaktadır. Bu gelgit durumunu “sosyo-biyo-teknik bakım kompleksi” bağlamında dis_empowering olarak kavramsallaştırmaktayız. Araştırmanın verileri İstanbul, Ankara ve İzmir kentlerinde T1D hastalığını CGM ile takip eden yetişkinler ve çocuğu T1D’li olan aileler ile yapılan derinlemesine mülakatlara ve gözlemlere dayanmaktadır.
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- Meyer-Harrington, M. (2000). Care Work: Gender, Class, and the Welfare State. New York: Routledge
- Mol, A. (2000). What Diagnostic Devices Do: The Case of Blood Sugar Measurement. Theoretical Medicine and Bioethics, 21, 9-22.
- Mol, A. (2008). The Logic of Care: Health and the Problem of Patient Choice. London: Routledge.
- Moretti, V. ve Morsello, B. (2017). Self–Management and Type 1 Diabetes. How Technology Redefines Illness. Italian Journal of Science and Technology Studies, 8(1), 51-71.
- Morgan, H. (2016). ‘Pushed’ Self-Tracking Using Digital Technologies for Chronic Health Condition Management: A Critical Interpretive Synthesis. Digital Health, 2, 1-41.
- Moser, I. (2008). Making Alzheimer’s Disease Matter: Enacting, Interfering, Doing Politics of Nature. Geoforum, 39(1), 98-110.
- Paton, C., Hansen, M., Fernandez-Luque, L. ve Lau, A. Y. S. (2018). Self-Tracking, Social Media and Personal Health Records for Patient Empowered Self-Care. Yearbook of Medical Informatics, 21(01), 16–24.
- Pickup, J. ve Keen, H. (2002). Continuous Subcutaneous Insulin Infusion at 25 Years: Evidence Base for the Expanding Use of Insulin Pump Therapy in Type 1 Diabetes. Diabetes Care, 25(3), 593-598.
- Pols, J. (2003). Enforcing Patient Rights or Improving Care? The Interference of Two Modes of Doing Good in Mental Health Care. Sociology of Health & Illness, 25(3), 320-347.
- Poolsup, N., Suksomboon, N. ve Kyaw, A. M. (2013). Systematic Review and Meta-Analysis of the Effectiveness of Continuous Glucose Monitoring (CGM) on Glucose Control in Diabetes. Diabetology & Metabolic Syndrome, 5(39), 1-14.
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- Reckwitz, A. (2003). Grundelemente einer Theorie Sozialer Praktiken. Eine Sozialtheoretische Perspektive. Zeitschrift für Soziologie, 32(4), 282–301.
- Reckwitz, A. (2008). Subjekt. Bielefeld: Transcript-Verl.
- Ricciardi, L., Mostashari, F., Murphy, J., Daniel, J. G. ve Siminerio, E. P. (2013). A National Action Plan to Support Consumer Engagement Via E-Health. Health Affairs, 32(2), 376-384.
- Rich, E., Miah, A. ve Lewis, S. (2019). Is Digital Health Care More Equitable? The Framing of Health Inequalities within England's Digital Health Policy 2010–2017. Sociology of Health & Illness, 41(S1), 31-49.
- Robinson, F. (2008). The Importance of Care in the Theory and Practice of Human Security. Journal of International Political Theory, 4(2), 167–188.
- Streisand, R., ve Monaghan, M. (2014). Young Children with Type 1 Diabetes: Challenges, Research, and Future Directions. Current Diabetes Reports, 14(9), 520.
- Schilling, L. S., Grey, M. ve Knafl, K. A. (2002). The Concept of Self-Management of Type 1 Diabetes in Children and Adolescents: An Evolutionary Concept Analysis. Journal of Advanced Nursing, 37(1), 87-99.
- Segall, A. (1976). The Sick Role Concept. Journal of Health&Social Behavior, 17(2), 162-169.
- Simon, F. ve Giovannetti, G. (2017). Managing Biotechnology: From Science to Market in the Digital Age. John Wiley & Sons.
- Stallwood, L. (2005). Influence of Caregiver Stress and Coping on Glycemic Control of Young Children with Diabetes. Journal of Pediatric Health Care, 19(5), 293-300.
- Strauss, A. ve Corbin, J. (1990). Grounded Theory: Grundlagen Qualitativer Sozialforschung. Weinheim Beltz, Psychologie Verlags Union (Özgün eser 1967 tarihlidir).
- Strübing, J. (2008). Grounded Theory: Zur sozialtheoretischen und epistemologischen Fundierung des Verfahrens der empirisch begründeten Theoriebildung. Wiesbaden: VS Verlag für Sozialwissenschaften.
- Sullivan-Bolyai, S., Deatrick, J., Gruppuso, P., Tamborlane, W. ve Grey, M. (2002). Mothers' Experiences Raising Young Children with Type 1 Diabetes. Journal for Specialists in Pediatric Nursing, 7(3), 93-103.
- Şahinol, M. (2010). Development of Neurotechnical Treatment with Brain Machine Interfaces in Chronic Stroke. Neurosociety... What is it with the brain these days? Konferasında sunulan bildiri. Oxford.
- Şahinol, M. (2016). Das Techno-Zerebrale Subjekt: Zur Symbiose von Mensch und Maschine in den Neurowissenschaften. Bielefeld: transcript.
- Şahinol, M. (2019). Collecting Data and the Status of the Research Subject in Brain-Machine Interface Research in Chronic Stroke Rehabilitation. Somatechnics, 9.2 (3), 244–263. doi:10.3366/soma.2019.0282
- Şahinol, M. ve Başkavak, G. (2020a). Between Empowerment and Disempowerment: A Qualitative Analysis of (Voluntary) Digital Health (Self-)Tracking in Turkey. (Yayınlanmamış rapor). Orient-Institut Istanbul for the German Federal Ministry of Health, Istanbul.
- Şahinol, M. ve Başkavak, G. (2020b). Türkiye’de Biyomedikalizasyon: Sağlığın Dijitalleşmesi ve Öz-Takip Pratikleri. A. Turanlı, M. Şahinol ve A.
U. Aydınoğlu (Ed.), Türkiye’de STS: Bilim ve Teknoloji Çalışmalarına Giriş içinde (s. 103-117). Istanbul: İTÜ Vakfı Yayınları.
- Şahinol, M. ve Kirschsieper, D. (2016). Die Privatheitskultur in Deutschland und der Türkei – untersucht an den Diskursen über Gesundheits-Apps. Smart New World Konferansında sunulan bildiri. Wien.
- Thomasgard, T. ve Metz, W. (1997). Parental Overprotection and Its Relation to Perceived Child Vulnerability. Journal of Orthopsychiatry, 67, 330-335.
Year 2021,
, 110 - 145, 07.04.2021
Melike Şahinol
,
Gülşah Başkavak
References
- Ajana, B. (2017). Digital Health and the Biopolitics of the Quantified Self. Digital Health, 3, 1-18.
- Alcántara-Aragón, V. (2019). Improving Patient Self-Care Using Diabetes Technologies. Therapeutic Advances in Endocrinology and Metabolism, 10, 1-11.
- Allen, N. ve Gupta, A. (2019). Current Diabetes Technology: Striving for the Artificial Pancreas. Diagnostics (Basel), 9(1), 1-16.
- Aujoulat, I., Marcolongo, R., Bonadiman, L. ve Deccache, A. (2008). Reconsidering Patient Empowerment in Chronic Illness: A Critique of Models of Self-Efficacy and Bodily Control. Soc Sci Med, 66(5), 1228-1239.
- American Diabetes Association. (2007). Standards of Medical Care in Diabetes—2007. DiabetesCare, 30, 4-41.
- Bergemann, L. ve Frewer, A. (2018). Autonomie und Vulnerabilität in der Medizin: Menschenrechte-Ethik-Empowerment: transcript Verlag.
- Bergenstal, R. M., Tamborlane, W. V., Ahmann, A., Buse, J. B., Dailey, G., Davis, S. N., . . . ve Wood, A. (2010). Effectiveness of Sensor-Augmented Insulin-Pump Therapy in Type 1 Diabetes. New England Journal of Medicine, 363(4), 311-320.
- Bowes, S., Lowes, L., Warner, J. ve Gregory, W. (2009). Chronic Sorrow in Parents of Children with Yype 1 Diabetes. Journal of Advanced Nursing, 65(5), 992-1000.
- Burnham, J. C. (2014). Why Sociologists Abandoned the Sick Role Concept. History of the Human Sciences, 27(1), 70-87.
- Bury, M. (1991). The Sociology of Chronic Illness: A Review of Research and Prospects. Sociology of Health & Illness, 13(4), 451-468.
- Charmaz, K. (1990). ‘Discovering’ Chronic Illness: Using Grounded Theory. Social Science & Medicine, 30(11), 1161-1172.
- Conrad, P. (1990). Qualitative Research on Chronic Illness: A Commentary on Method and Conceptual Development. Social Science & Medicine, 30(11), 1257-1263.
- Corbin, J. ve Strauss, A. (1985). Managing Chronic Illness at Home: Three Lines of Work. Qualitative Sociology, 8(3), 224-247.
Deloitte. (2017). Personalized Health: Preparing for Tomorrow’s Healthcare. Erişim 20.11.2019.
- https://www2.deloitte.com/content/dam/Deloitte/nl/Documents/life-sciences-health-care/deloitte-nl-personalized-health-uk-version.pdf.
- Foucault, M. (1988). Technologies of the Self. L. H. Martin, H. Gutman ve P. H. Hutton (Ed.), Technologies of the Self: A seminar with Michel
- Foucault içinde (s. 16-49). Amherst: The University of Massachusetts Press.
- Freidson, E. (1970). Profession of Medicine: A Study of the Sociology of Applied Knowledge. New York: Dodd Mead.
- Funnell, M. M. ve Anderson, R. M. (2004). Empowerment and Self-Management of Diabetes. Clinical Diabetes, 22(3), 123-127.
- Guadagnoli, E. ve Ward, P. (1998). Patient Participation in Decision-Making. Soc Sci Med, 47(3), 329-339.
- Gugutzer, R. (2012). Verkörperungen des Sozialen: Neophänomenologische Grundlagen und Soziologische Analysen. Bielefeld: transcript.
- Gugutzer, R. (2015). Soziologie des Körpers. (5. bs.). Bielefeld: transcript.
- Gugutzer, R. (Ed.) (2006). Body Turn: Perspektiven der Soziologie des Körpers und des Sports. Bielefeld: Transcript.
- Gugutzer, R., Klein, G. ve Meuser, M. (2017). Handbuch Körpersoziologie (Cilt 1): Grundbegriffe und theoretische Perspektiven. Wiesbaden: Springer-Verlag.
- Haraway, D. (1995). Ein Manifest für Cyborgs: Feminismus im Streit mit den Technowissenschaften. D. Haraway (Ed.), Die Neuerfindung der Natur içinde (s. 33-72). Frankfurt [u.a.]: Campus-Verl.
- Haraway, D. (1997). Syntactics: The Grammar of Feminism and Technoscience. D. Haraway (Ed.), Modest_Witness@ Second_Millenium:
- FemaleMan© _Meets_ OncoMouse™. Feminism and Technoscience içinde (s. 1-45). New York/London: Routledge.
- Institute of Medicine. (2001). Crossing the Quality Chasm: A New Health System for the Twenty-First Century. Washington: National Academy Press.
- International Diabetes Federation. (2009). Diabetes Atlas (4 bs.). Brussels: International Diabetes Federation.
- Kelleher, D. (1988). Diabetes. London: Routledge.
- Krošel, M., Švegl, L., Vidmar, L.ve D. Dinevski, D. (2016). Empowering Diabetes Patient with Mobile Health Technologies. W. Bonney (Ed.), Mobile Health Technologies - Theories and Applications içinde (s. 31-56). Rijeka: InTech.
- Latour, B. (1996). On Interobjectivity. Mind, Culture, and Activity, 3(4), 228-245.
- Litton, J., Rice, A., Friedman, N., Oden, J. ve Lee, M. M. (2002). Insulin Pump Therapy in Toddlers and Preschool Children with Type 1 Diabetes Mellitus. The Journal of Pediatrics, 141(4), 490-495.
- Mair, F. S. ve May, C. R. (2014). Thinking about the Burden of Treatment. British Medical Journal, 349, 6680–6681.
- Mauss, M. (2010). Gabentausch, Todesvorstellung, Körpertechniken. Wiesbaden: VS Verlag für Sozialwissenschaften (Özgün eser 1950 tarihlidir).
- May, C. R., Eton, D. T., Boehmer, K., Gallacher, K., Hunt, K., MacDonald, S., . . . Richardson, A. (2014). Rethinking the Patient: Using Burden of Treatment Theory to Understand the Changing Dynamics of Illness. BMC Health Services Research, 14(1), 281.
- McAllister, M., Dunn, G., Payne, K., Davies, L. ve Todd, C. (2012). Patient Empowerment: The Need to Consider It As a Measurable Patient-Reported Outcome for Chronic Conditions. BMC Health Services Research, 12 (157), 1-8.
- Meyer-Harrington, M. (2000). Care Work: Gender, Class, and the Welfare State. New York: Routledge
- Mol, A. (2000). What Diagnostic Devices Do: The Case of Blood Sugar Measurement. Theoretical Medicine and Bioethics, 21, 9-22.
- Mol, A. (2008). The Logic of Care: Health and the Problem of Patient Choice. London: Routledge.
- Moretti, V. ve Morsello, B. (2017). Self–Management and Type 1 Diabetes. How Technology Redefines Illness. Italian Journal of Science and Technology Studies, 8(1), 51-71.
- Morgan, H. (2016). ‘Pushed’ Self-Tracking Using Digital Technologies for Chronic Health Condition Management: A Critical Interpretive Synthesis. Digital Health, 2, 1-41.
- Moser, I. (2008). Making Alzheimer’s Disease Matter: Enacting, Interfering, Doing Politics of Nature. Geoforum, 39(1), 98-110.
- Paton, C., Hansen, M., Fernandez-Luque, L. ve Lau, A. Y. S. (2018). Self-Tracking, Social Media and Personal Health Records for Patient Empowered Self-Care. Yearbook of Medical Informatics, 21(01), 16–24.
- Pickup, J. ve Keen, H. (2002). Continuous Subcutaneous Insulin Infusion at 25 Years: Evidence Base for the Expanding Use of Insulin Pump Therapy in Type 1 Diabetes. Diabetes Care, 25(3), 593-598.
- Pols, J. (2003). Enforcing Patient Rights or Improving Care? The Interference of Two Modes of Doing Good in Mental Health Care. Sociology of Health & Illness, 25(3), 320-347.
- Poolsup, N., Suksomboon, N. ve Kyaw, A. M. (2013). Systematic Review and Meta-Analysis of the Effectiveness of Continuous Glucose Monitoring (CGM) on Glucose Control in Diabetes. Diabetology & Metabolic Syndrome, 5(39), 1-14.
- Rammert, W. (2007). Technik, Handeln und Sozialstruktur: Eine Einführung in die Soziologie der Technik. W. Rammert (Ed.), Technik - Handeln - Wissen içinde (s. 11–36). Wiesbaden: VS Verlag für Sozialwissenschaften | GWV Fachverlage GmbH Wiesbaden.
- Reckwitz, A. (2003). Grundelemente einer Theorie Sozialer Praktiken. Eine Sozialtheoretische Perspektive. Zeitschrift für Soziologie, 32(4), 282–301.
- Reckwitz, A. (2008). Subjekt. Bielefeld: Transcript-Verl.
- Ricciardi, L., Mostashari, F., Murphy, J., Daniel, J. G. ve Siminerio, E. P. (2013). A National Action Plan to Support Consumer Engagement Via E-Health. Health Affairs, 32(2), 376-384.
- Rich, E., Miah, A. ve Lewis, S. (2019). Is Digital Health Care More Equitable? The Framing of Health Inequalities within England's Digital Health Policy 2010–2017. Sociology of Health & Illness, 41(S1), 31-49.
- Robinson, F. (2008). The Importance of Care in the Theory and Practice of Human Security. Journal of International Political Theory, 4(2), 167–188.
- Streisand, R., ve Monaghan, M. (2014). Young Children with Type 1 Diabetes: Challenges, Research, and Future Directions. Current Diabetes Reports, 14(9), 520.
- Schilling, L. S., Grey, M. ve Knafl, K. A. (2002). The Concept of Self-Management of Type 1 Diabetes in Children and Adolescents: An Evolutionary Concept Analysis. Journal of Advanced Nursing, 37(1), 87-99.
- Segall, A. (1976). The Sick Role Concept. Journal of Health&Social Behavior, 17(2), 162-169.
- Simon, F. ve Giovannetti, G. (2017). Managing Biotechnology: From Science to Market in the Digital Age. John Wiley & Sons.
- Stallwood, L. (2005). Influence of Caregiver Stress and Coping on Glycemic Control of Young Children with Diabetes. Journal of Pediatric Health Care, 19(5), 293-300.
- Strauss, A. ve Corbin, J. (1990). Grounded Theory: Grundlagen Qualitativer Sozialforschung. Weinheim Beltz, Psychologie Verlags Union (Özgün eser 1967 tarihlidir).
- Strübing, J. (2008). Grounded Theory: Zur sozialtheoretischen und epistemologischen Fundierung des Verfahrens der empirisch begründeten Theoriebildung. Wiesbaden: VS Verlag für Sozialwissenschaften.
- Sullivan-Bolyai, S., Deatrick, J., Gruppuso, P., Tamborlane, W. ve Grey, M. (2002). Mothers' Experiences Raising Young Children with Type 1 Diabetes. Journal for Specialists in Pediatric Nursing, 7(3), 93-103.
- Şahinol, M. (2010). Development of Neurotechnical Treatment with Brain Machine Interfaces in Chronic Stroke. Neurosociety... What is it with the brain these days? Konferasında sunulan bildiri. Oxford.
- Şahinol, M. (2016). Das Techno-Zerebrale Subjekt: Zur Symbiose von Mensch und Maschine in den Neurowissenschaften. Bielefeld: transcript.
- Şahinol, M. (2019). Collecting Data and the Status of the Research Subject in Brain-Machine Interface Research in Chronic Stroke Rehabilitation. Somatechnics, 9.2 (3), 244–263. doi:10.3366/soma.2019.0282
- Şahinol, M. ve Başkavak, G. (2020a). Between Empowerment and Disempowerment: A Qualitative Analysis of (Voluntary) Digital Health (Self-)Tracking in Turkey. (Yayınlanmamış rapor). Orient-Institut Istanbul for the German Federal Ministry of Health, Istanbul.
- Şahinol, M. ve Başkavak, G. (2020b). Türkiye’de Biyomedikalizasyon: Sağlığın Dijitalleşmesi ve Öz-Takip Pratikleri. A. Turanlı, M. Şahinol ve A.
U. Aydınoğlu (Ed.), Türkiye’de STS: Bilim ve Teknoloji Çalışmalarına Giriş içinde (s. 103-117). Istanbul: İTÜ Vakfı Yayınları.
- Şahinol, M. ve Kirschsieper, D. (2016). Die Privatheitskultur in Deutschland und der Türkei – untersucht an den Diskursen über Gesundheits-Apps. Smart New World Konferansında sunulan bildiri. Wien.
- Thomasgard, T. ve Metz, W. (1997). Parental Overprotection and Its Relation to Perceived Child Vulnerability. Journal of Orthopsychiatry, 67, 330-335.