Writing autohistoria-teoría: agency and illness in German life narratives by Evelyne Leandro and Mely Kiyak

Health concerns by migrants have been neglected in the German healthcare system, and they are impacted by discriminating discourses of othering. By analysing two autobiographical illness narratives by immigrants in contemporary Germany, this article exposes limitations in existing discourses of migration health and argues for more relational and affirmative theories of illness and care. Evelyn Leandro’s diary The Living Death: The Struggle with a Long-Forgotten Illness (2017) describes her own drawn-out therapy against leprosy as a Brazilian in Berlin. In Mr Kiyak Thought That the Best Part of His Life Will Start Now (2013), the Turkish-German journalist Mely Kiyak narrates her father’s experience with advanced lung cancer in a German hospital. Drawing on medical anthropology, postcolonial theory and material (eco)feminism, I argue that these narratives establish migrant health and agency in transnational assemblages that include chemotherapy, lungs and skin, family networks, healthcare providers, food cultures and health policies. These assemblages of illness are connected with the narratives’ hybrid and relational aesthetics and politics: similar to Gloria Anzaldúa’s practice of autohistoria-teoría, I show how Kiyak’s and Leandro’s life writing combines personal and communal storytelling with critical theorising to include diverse voices, languages, histories and identities. By transgressing identities of self and other, German and foreign, patient and physician, human and non-human, the narratives inspire a greater sense of the extent to which (all) bodies, histories, cultures, technology and medicine are entangled in a dense network of relations. This article envisions a relational and hybrid ontology and aesthetics of migration health and thereby intervenes into the growing field of transcultural medicine and medical humanities.

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Quickcard-Based Approach to Guiding Specific Nonpharmacological Treatments in a German Parkinson’s Network

Journal of Clinical Medicine ◽

10.3390/jcm9072272 ◽

2020 ◽

Vol 9 (7) ◽

pp. 2272

Author(s):

Linda Kerkemeyer ◽

Katharina Achtert ◽

Inga Claus ◽

Svenja Happe ◽

Jeannette Overbeck ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Healthcare System ◽

Healthcare Providers ◽

Occupational Therapists ◽

Feedback System ◽

Future Research ◽

German Healthcare System ◽

Interdisciplinary Network ◽

Nonpharmacological Treatments

Interdisciplinary care has been shown to be effective at optimizing the treatment of patients with Parkinson’s disease. An optimized collaboration between the various healthcare providers involved in the treatment process facilitates successful care. One of the main shortcomings in the German healthcare system is the limited and unstandardized communication between practitioners. The Parkinson’s network Münsterland+ (PNM+) is an interdisciplinary network of medical and non-medical experts involved in the treatment of Parkinson’s patients: neurologists, physiotherapists, occupational therapists, speech therapists, psychologists, Parkinson’s nurses, pharmacists, patients, and relatives. The PNM+ elaborates guideline-based therapy recommendations, provided as so-called “Quickcards”. Thereby, the communication of the treating neurologist and therapists is based on a coordinated feedback system and suggestions to adequately select and, if necessary, adjust the therapy. In the German healthcare system, with its fragmented structures, the PNM+ and its activities have been shown to enhance integration of the healthcare providers and thereby optimize the care of Parkinson’s disease patients. Future research should evaluate the effects and cost-effectiveness.

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Hard-Earned Wisdom

The Group ◽

10.1093/oso/9780190649562.003.0023 ◽

2018 ◽

Author(s):

Donald L. Rosenstein ◽

Justin M. Yopp

Keyword(s):

Terminal Illness ◽

Healthcare Providers ◽

Advanced Lung Cancer ◽

Single Fathers ◽

Healthcare Organizations ◽

Entire Family ◽

Non Profit ◽

Personal Connection ◽

The Family ◽

Seriously Ill

In 1994, Kenneth Schwartz, a forty-year-old healthcare attorney from Boston, was diagnosed with advanced lung cancer. At different times during his progressive illness, he was deeply moved by aspects of his care that were less strictly medical or technical: a calming visit from a nurse prior to surgery; a personal connection with an anesthesiology resident from his neighborhood; and, toward the end of his life, the kindness and perspective provided by his oncologist. Shortly before his death, Mr. Schwartz founded a non-profit organization to promote the kind of compassionate care that had meant so much to him. Two decades later, the Schwartz Center for Compassionate Healthcare reaches millions of patients and hundreds of thousands of caregivers to realize its founder’s vision of more humane care for the seriously ill. A cornerstone of the Center’s work is the Schwartz Rounds program, which brings healthcare providers from multiple disciplines together for frank discussions about the emotional and psychosocial challenges of caring for patients. More than five hundred healthcare organizations around the world host these ongoing, non-traditional conferences. A few years ago, the organizer of Schwartz Rounds at UNC invited us to lead an upcoming conference. She was aware of our work with the single fathers support group and wanted us to address the challenges that spouses face when caring for a partner with a terminal illness. At the next group meeting, we mentioned this request to the men and asked them for their advice. Each father had been an eyewitness to the end of his wife’s life and knew well how that heartbreaking time had impacted his entire family. Not surprisingly, they had a lot to say about end-of-life care and how it could be improved. Karl was particularly passionate. “I’ve actually thought about this a lot since Susan died. Obviously, the patient is the focus, but I think it’s also important for doctors to appreciate what the family goes through—especially when there are kids at home and the spouse is a co-parent. That dynamic alone influences so many things.”

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Healthcare for Trans*gender People in Germany: Gaps, Challenges, and Perspectives

Frontiers in Neuroscience ◽

10.3389/fnins.2021.718335 ◽

2021 ◽

Vol 15 ◽

Author(s):

Nora Guethlein ◽

Melina Grahlow ◽

Carolin A. Lewis ◽

Stephan Bork ◽

Ute Habel ◽

...

Keyword(s):

Healthcare System ◽

Gender Dysphoria ◽

Mental Distress ◽

Healthcare Professionals ◽

Waiting Times ◽

Healthcare Providers ◽

Medical Personnel ◽

Medical System ◽

German Healthcare System ◽

Gender System

People whose gender does not correspond to the binary gender system, i.e., trans∗gender people, face two main problems when it comes to healthcare in Germany: (1) They often suffer from general psychiatric comorbidities as well as specific and significant mental distress due to gender dysphoria, and (2) the German healthcare system lacks sufficiently educated and clinically experienced medical personnel who are able to provide specialized healthcare. Aside from transition, it often is extremely difficult for trans∗gender people to get access to and be integrated into the medical system. Stigmatization and pathologization in treatment are widespread, as are long waiting times for specialized healthcare providers who are often only accessible to those trans∗gender people willing to travel long distances. Frequently, trans∗gender people face further difficulties and barriers after transition, as some healthcare professionals fail to provide suitable care (e.g., gynecological consultation for transmen). The ICD-11 German Modification (ICD-11-GM), which should be routinely used by 2022, implements a depathologization of trans∗gender people in the medical system. This paper compares the issues related to health and healthcare of trans∗gender people in Germany with those in other European countries. We review the care offered by specialized centers with regard to treatment of and support for trans∗gender people. We conclude with specific proposals that may contribute to establish an improved, up-to-date, gender-sensitive healthcare system.

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What patients with lung cancer with comorbidity tell us about interprofessional collaborative care across healthcare sectors: qualitative interview study

BMJ Open ◽

10.1136/bmjopen-2019-036495 ◽

2020 ◽

Vol 10 (8) ◽

pp. e036495

Author(s):

Jasmin Bossert ◽

Johanna Forstner ◽

Matthias Villalobos ◽

Anja Siegle ◽

Corinna Jung ◽

...

Keyword(s):

Lung Cancer ◽

Information Exchange ◽

Qualitative Content Analysis ◽

Healthcare Providers ◽

Active Role ◽

Advanced Lung Cancer ◽

Care Providers ◽

Qualitative Interview Study ◽

Registration Number ◽

Communication Approach

BackgroundPatients with lung cancer with comorbidity often require treatment and care by different health professionals, in different settings and at different points in time during the course of the disease. In order to organise and coordinate healthcare efficiently, effective information exchange and collaboration between all involved care providers are required. The aim of this study was to assess the views of patients with advanced lung cancer with comorbidity regarding coordination of treatment and care across healthcare sectors.MethodsThis qualitative study, as part of the main study, The Heidelberg Milestones Communication Approach, used face-to-face guide-based semistructured interviews with patients with advanced lung cancer and their informal caregivers to explore cross-sectoral information exchange and collaboration in Germany. All generated data were audio-recorded, pseudonymised and transcribed verbatim. Data analysis was performed using qualitative content analysis to structure data into themes and subthemes. All data were managed and organised in MAXQDA.ResultsIn 15 interviews, participants reported that cross-sectoral collaboration functioned well, if treatments occurred as planned. However, treatment gaps were experienced, especially regarding medication and regimen. As a result, participants felt insecure and obliged to take responsibility for the coordination of healthcare. Patients reported to be in favour of an active patient role but felt that healthcare coordination should still be a responsibility of a care provider. A more intensive information exchange, potentially by using an electronic platform, was expected to strengthen cross-sectoral collaboration.ConclusionPatients with lung cancer are uncertain about their role in the coordination of treatment and care across healthcare sectors. Healthcare providers should be more aware of care recipients’ willingness of taking on a more active role in healthcare coordination.Trial registration numberDRKS00013469.

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