Social poetics as processual engagement: Making visible what matters in social suffering

2020 ◽  
pp. 136346152096261
Author(s):  
Arlene M. Katz
Keyword(s):  
Lived Experience ◽  
Medical Training ◽  
Social Suffering ◽  
Senior Faculty ◽  
Innovative Program ◽  
Cultural Poetics ◽  
Experience Of Illness ◽  
Positive Engagement ◽  
Social Poetics ◽  
What Matters

Social and cultural poetics take us beyond language to an embodied sensibility. To explore the relevance of social poetics in medical training, this article uses as an exemplar an innovative program in geriatrics in a residency program in primary care. The program began with a series of meetings in which medical residents consulted community elders invited for their advice and wisdom on healthcare dilemmas as Senior Faculty, effectively becoming co-teachers and co-learners with one another. Through iterative reflection, residents, faculty and community elders all reported feeling struck by the unexpected responses and were often guided and called to action by them to ask new questions, to shift their stance, or offer greater accompaniment and care. These experiences illuminated what might otherwise have passed by unnoticed, particularly in regards to human suffering. The reflecting process made visible what mattered to each actor, shifting from negative assumptions and attitudes about older adults to a positive engagement with them, co-creating new possibilities for participants to articulate their lived experience of illness and healing. These are creative and moral acts, honoring the voices of those seldom invited to speak, resonating with them, acknowledging what matters to each participant, while taking into account wider issues of disparity and social justice.

scholarly journals The lived experience of medical training and emotional intelligence

2021 ◽  
pp. 1-4
Author(s):  
Michael A. Dewsnap ◽  
Alejandro C. Arroliga ◽  
Bobbie Ann Adair-White
Keyword(s):  
Emotional Intelligence ◽  
Lived Experience ◽  
Medical Training

32 Examining the key factors impacting on the implementation of an educational program on constipation in specialist palliative care

2018 ◽  
Vol 8 (3) ◽  
pp. 371.3-372
Author(s):  
S McIlfatrick ◽  
DHL Muldrew ◽  
E Carduff ◽  
M Clarke ◽  
J Coast ◽  
...  
Keyword(s):  
Palliative Care ◽  
Lived Experience ◽  
Educational Program ◽  
Complex Interventions ◽  
Successful Implementation ◽  
List Type ◽  
Social Suffering ◽  
Specialist Palliative Care ◽  
Key Factors ◽  
Services Research

IntroductionConstipation is one of the most common symptoms in patients in specialist palliative care (SPC) settings and can cause considerable physical psychological and social suffering for the patient and their family. Due to the high variability in constipation assessment and management in SPC settings questions exist around how to implement an educational program in practice to address this clinical gap.AimTo develop and test the feasibility and acceptability of a novel educational intervention for HCPs to manage constipation experienced by people in SPC settings.MethodUsing the MRC framework for complex interventions and guided by the consolidated framework for implementation research an online resource was developed considering the content context and processes for implementation.ResultsAssessment prevention and management were identified as the core aspects. Six sessions with theoretical content application to practice and reflection through interacting with colleagues were developed in line with the best available evidence. Incentives including an educational bursary and alignment with revalidation and support from senior management champions and the research team were identified as key elements needed successful implementation. Funding IT infrastructure and attitudes to the content have been flagged as potential barriers to success.ConclusionA six week blended program covering the key concepts for assessment and management of constipation in palliative care has been created. Content evidence from the literature and empirical data on the preferred structure and method of delivery as well as key considerations of the contextual factors have been identified as key factors for implementation.References. Craig P, et al.Developing and evaluating complex interventions: The new medical research council guidance. BMJ Clinical Research Ed2008;337(October):a1655. Available at: http://discovery.ucl.ac.uk/168426/. Damschroder LJ, et al. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implementation Science2009;4(50).. Friedrichsen M, Erichsen E. The lived experience of constipation in cancer patients in palliative hospital-based home care. Int J Palliat Nurs [Internet] 2004;10(7):321–5. Available from: http://search.ebscohost.com/login.aspx?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl?=13576321&AN=13991056&h=XKMF4r08srZuhDY0j7C95oLLyYKNHUcvoeEuhyXNnsIM2BI%2BEhmcY1pPP%2BN1pvrMzQ9Bn9b5j45X6WzyBRydEA%3D%3D&crl=c [Accessed: 2017 August 21]. Tvistholm N, Munch L, Danielsen AK. Constipation is casting a shadow over everyday life? A systematic review on older people’s experience of living with constipation [Internet]. Journal of Clinical Nursing2017;26:902–14. Available from: http://doi.wiley.com/10.1111/jocn.13422 [Accessed: 2017 August 21]

scholarly journals Advancing Health Equity in Digital Mental Health: Lessons From Medical Anthropology for Global Mental Health

10.2196/28555 ◽  
2021 ◽  
Vol 8 (8) ◽  
pp. e28555
Author(s):  
Ellen Elizabeth Kozelka ◽  
Janis H Jenkins ◽  
Elizabeth Carpenter-Song
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Medical Anthropology ◽  
Global Mental Health ◽  
Digital Health ◽  
Health Needs ◽  
Mental Health Needs ◽  
Health Care Models ◽  
Care Models ◽  
Experience Of Illness

Digital health engenders the opportunity to create new effective mental health care models—from substance use recovery to suicide prevention. Anthropological methodologies offer a unique opportunity for the field of global mental health to examine and incorporate contextual mental health needs through attention to the lived experience of illness; engagement with communities; and knowledge of context, structures, and systems. Attending to these diverse mental health needs and conditions as well as the limitations of digital health will allow global mental health researchers, practitioners, and patients to collaboratively create new models for care in the service of equitable, accessible recovery.

scholarly journals Story, dialogue and caring about what matters to people: progress towards evidence-enriched policy and practice

2020 ◽  
Vol 16 (4) ◽  
pp. 597-618 ◽  
Author(s):  
Nick Andrews ◽  
John Gabbay ◽  
Andreé Le-May ◽  
Emma Miller ◽  
Alison Petch ◽  
...  
Keyword(s):  
Older People ◽  
Lived Experience ◽  
Social Care ◽  
Approaches To Learning ◽  
Participatory Action ◽  
Learning And Development ◽  
Policy And Practice ◽  
Care Services ◽  
Five Elements ◽  
What Matters

Background: Evidence-based practice in social care and health is widely promoted. Making it a reality remains challenging, partly because practitioners generally see practice-based knowledge as more relevant than empirical research. A further challenge regarding the creative, contextual use of research and other evidence including lived experience and practice-based knowledge is that practitioners, especially in frontline care services, are often seen not as innovators, but recipients of rules and guidelines or followers of pre-determined plans. Likewise, older people are not generally recognised as co-creators of knowledge, learning and development but as passive recipients of care, or objects of research.Aims: This study aimed to address the above issues, through a collaborative and appreciative endeavour involving researchers; social care and health practitioners; managers; older people and carers in 6 sites across Wales and Scotland.Methods: We used participatory action research methodology, applying a dialogic storytelling approach, which enabled participants to explore and address 7 already published research-based ‘Challenges’ regarding what matters most to older people with high-support needs.Findings: Participants discovered and addressed five elements required in developing evidence-enriched practice; the creation of supportive and relationship-centred research and practice environments; the valuing of diverse types of evidence; the use of engaging narratives to capture and share evidence; the use of dialogue-based approaches to learning and development; and the recognition and resolution of systemic barriers to development.Discussion and conclusion: Although existing literature covers each element, this project was novel in collectively exploring and addressing all five elements together, and in its use of multiple forms of story, which engaged hearts and minds, positive outcomes were achieved.

scholarly journals Do chronic heart failure symptoms interact with burden of treatment? Qualitative literature systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. e047060
Author(s):  
Rosalynn C Austin ◽  
Lisette Schoonhoven ◽  
Mike Clancy ◽  
Alison Richardson ◽  
Paul R Kalra ◽  
...  
Keyword(s):  
Heart Failure ◽  
Chronic Heart Failure ◽  
Lived Experience ◽  
Self Care ◽  
Eligibility Criteria ◽  
External Resources ◽  
Burden Of Treatment ◽  
Registration Number ◽  
Patients Experience ◽  
Experience Of Illness

ObjectiveExplore the interaction between patient experienced symptoms and burden of treatment (BoT) theory in chronic heart failure (CHF). BoT explains how dynamic patient workload (self-care) and their capacity (elements influencing capability), impacts on patients’ experience of illness.DesignReview of qualitative research studies.Data sourcesCINAHL, EMBASE, MEDLINE, PsycINFO, Scopus and Web of Science were searched between January 2007 and 2020.Eligibility CriteriaJournal articles in English, reporting qualitative studies on lived experience of CHF.Results35 articles identified related to the lived experience of 720 patients with CHF. Symptoms with physical and emotional characteristics were identified with breathlessness, weakness, despair and anxiety most prevalent. Identifying symptoms’ interaction with BoT framework identified three themes: (1) Symptoms appear to infrequently drive patients to engage in self-care (9.2% of codes), (2) symptoms appear to impede (70.5% of codes) and (3) symptoms form barriers to self-care engagement (20.3% of codes). Symptoms increase illness workload, making completing tasks more difficult; simultaneously, symptoms alter a patient’s capacity, through a reduction in their individual capabilities and willingness to access external resources (ie, hospitals) often with devasting impact on patients’ lives.ConclusionsSymptoms appear to be integral in the patient experience of CHF and BoT, predominately acting to impede patients’ efforts to engage in self-care. Symptoms alter illness workload, increasing complexity and hardship. Patients’ capacity is reduced by symptoms, in what they can do and their willingness to ask for help. Symptoms can lower their perceived self-value and roles within society. Symptoms appear to erode a patient’s agency, decreasing self-value and generalised physical deconditioning leading to affective paralysis towards self-care regimens. Together describing a state of overwhelming BoT which is thought to be a contributor to poor engagement in self-care and may provide new insights into the perceived poor adherence to self-care in the CHF population.PROSPERO registration numberCRD42017077487.

scholarly journals Lived Experience of the Social Suffering of the Parents with Autism Spectrum Disorder (ASD) Child

2019 ◽  
Vol 19 (72) ◽  
pp. 243-282
Author(s):  
ansar khougar ◽  
ali asghar Asgharnejad ◽  
Hadi Ranjbar ◽  
Mojgan Lotfei ◽  
Mitra Hakimshoushtari ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Lived Experience ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Social Suffering ◽  
The Social

scholarly journals Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia

2021 ◽  
Vol 8 (1) ◽  
Author(s):  
Kristin Margrethe Heggen ◽  
Henrik Berg
Keyword(s):  
Lived Experience ◽  
Evidence Based Practice ◽  
Evidence Based ◽  
Epistemic Injustice ◽  
Clinical Knowledge ◽  
Healthcare Settings ◽  
Clinical Encounters ◽  
Illness Experiences ◽  
Patients Experience ◽  
Experience Of Illness

AbstractThe aim of this paper is to analyze epistemic interactions in healthcare practices. In clinical encounters, participants exchange and interpret knowledge. Patients suffering from fibromyalgia often report that healthcare professionals do not take their testimonies and interpretations seriously. Such experiences will be explored using the concept of epistemic injustice. Epistemic injustice is wrong done to someone in their capacity as a knower. In healthcare settings, epistemic injustice occurs when patients experience an unjustified discrediting as unreliable informants of their own illness experiences. First, we will argue that patients’ epistemic marginalization can be reframed as an epistemological problem. There is a gap between patients’ lived experience of illness and professionals’ conceptualization of illness as disease. This gap leads to two distinct conceptualizations, possibly causing harm to patients’ capacity as first-hand knowers. Second, we will analyze epistemic injustice in light of the dominant model of knowledge translation in medicine and healthcare, namely evidence-based practice (EBP). EBP intends to diminish the gap between scientific knowledge and clinical practice. EBP prioritizes knowledge obtained through clinical research over other forms of clinical knowledge and has the potential for harmful epistemic devaluation of patients’ stories.

Leadership development in undergraduate medical education: evaluation of students’ perceptions of a student-selected leadership module

BMJ Leader ◽  
2020 ◽  
Vol 4 (3) ◽  
pp. 141-143
Author(s):  
Ann LN Chapman ◽  
Ross Christie ◽  
Ross Lamont ◽  
Marta Lewandowska ◽  
Luan Tong ◽  
...  
Keyword(s):  
Medical Education ◽  
Leadership Development ◽  
Lived Experience ◽  
Personal Development ◽  
Core Curriculum ◽  
Medical Training ◽  
Education Evaluation ◽  
The Core ◽  
Medical Leadership ◽  
The University

BackgroundThere is increasing recognition of the importance of leadership development within undergraduate medical training. One method of doing this is through student-selected components (SSCs), optional modules that allow students to explore an area in greater depth than in the core curriculum. An SSC in medical leadership has been offered at the University of Glasgow since 2015. We evaluated students’ perceptions of this SSC.MethodsStudents are required to submit a written reflective report on the SSC. These were analysed thematically to determine students’ lived experience. Respondent validation and independent anonymised feedback to the university were used for triangulation.ResultsStudents reported that the SSC allowed them to experience aspects of healthcare not encountered elsewhere in their training. Three themes were derived from the analysis, relating to SSC structure, areas of learning and personal development/impact. Students recognised that leadership development is important within the curriculum and felt that it should be available to all medical students.ConclusionThis evaluation of students’ perceptions of a leadership SSC identified characteristics of the module that were felt by students to be valuable in leadership development and will support development of similar leadership modules at undergraduate and postgraduate levels.

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