Patient Perspective

This paper analyses the phenomenon of epistemic injustice within contemporary healthcare. We begin by detailing the persistent complaints patients make about their testimonial frustration and hermeneutical marginalization, and the negative impact this has on their care. We offer an epistemic analysis of this problem using Miranda Fricker’s account of epistemic injustice. We detail two types of epistemic injustice, testimonial and hermeneutical, and identify the negative stereotypes and structural features of modern healthcare practices that generate them. We claim that these stereotypes and structural features render ill persons especially vulnerable to these two types of epistemic injustice. We end by proposing five avenues for further work on epistemic injustice in healthcare.

Forthcoming in David Coady and Miranda Fricker (eds.), Applied Epistemology, a special issue of the Journal of Applied Philosophy

This study presents a discourse analysis of falls prevention among older people in a context of a falls clinic. Data are based on an empirical study of the ways in which fall prevention was realized and managed in a falls clinic at the political, recruitment and treatment level. Despite massive information and investment in falls prevention programs, many still drop out or decline to participate in such programs. The study explores how discourses cross swords in the domain of falls prevention. We identify two main discourses in the field: Discourses of Active aging opposed to discourses of old age as disease. In discourses of active aging falls are constructed as preventable and not necessarily related to old age; in discourses of old age as disease falls are constructed as a disease of old age. Specific agent positions are created within discourses. Discourses of ative aging construct self-responsible citizens who are physically active and motivated to participate in falls prevention programmes; discourses of old age as disease on the other hand construct “fall patients” who accept being passive in the health care system. Older citizens who are not in need of treatment or less physically active are excluded from the discourses. Future falls-prevention strategies might try to invite different perspectives on aging and physical activities to improve participation rates in falls prevention programmes.

This study presents a discourse analysis of falls prevention among older people in a context of a falls clinic. Data are based on an empirical study of the ways in which fall prevention was realized and managed in a falls clinic at the political, recruitment and treatment level. Despite massive information and investment in falls prevention programs, many still drop out or decline to participate in such programs. The study explores how discourses cross swords in the domain of falls prevention. We identify two main discourses in the field: Discourses of active aging opposed to discourses of old age as disease. In discourses of active aging falls are constructed as preventable and not necessarily related to old age; in discourses of old age as disease falls are constructed as a disease of old age. Specific agent positions are created within discourses. Discourses of active aging construct self-responsible citizens who are physically active and motivated to participate in falls prevent...

Within the specialty of Ophthalmology increasing emphasis is being placed on the use of innovative technologies and devices. From the specialist's perspective the primary goal of cataract surgery should be about obtaining the best possible outcome (i.e., eagle-eye vision without the need for glasses). However, is this really what the patient needs and wants? Or would he or she be more satisfied with a doctor who invests more time on personal needs and preferences? Perhaps more focus should be shifted away from high-tech quality of care to more subjective standards of outcome from the patient's perspective leading to reassuring patient education and counseling.
This dissertation deals with the general identification of determinants of patient satisfaction after cataract surgery. More specifically, quality of care and surgery-related anxiety were explored from the doctor's and the patient's perspective.

A qualitative report of users' experiences of home telemonitoring in COPD (Chronic Obstructive Lung Disorder) in Lothian Region. This research, with patients, carers, nurses, physiotherapists and GPs provided an early insight into the experience of the players in a new approach to managing chronic disease, and was designed to inform the design and development of a larger study of the techical, clinical, social, organisational, and usability issues.

The Ontario SPOR Support Unit’s Patient Partnership Working Group (PPWG) has commissioned a patient-led study to investigate patient views on “ladders of engagement” frameworks, using IAP2’s Public Participation Spectrum (IAP2 Spectrum) as an example. Objectives of the study include determining what relevance such frameworks hold for patients and discovering if there is opportunity to reimagine a framework from a patient perspective. To gain insights into these questions, eight (8) patients were interviewed, the findings of which are discussed in this paper.

Conversations with engaged patients revealed diverse motives, preferences, and intentions related to engaging in research. The participants had differing understandings of key concepts such as partnership, meaningfulness, and what constitutes ‘good’ engagement. As a result, the interviewed patients did not relate easily to the IAP2 Spectrum. They felt it did not accurately reflect their experiences, and some thought it was not a desirable or helpful model from their perspective. Some patients were in agreement, however, that the IAP2 Spectrum may be useful in familiarizing newly engaged patients with researchers’ views on engagement.

As a way to more easily talk about and analyze patient views, the participants were identified as belonging to one of three groups: patients who volunteer to provide their perspectives and feedback; patients with pre-existing professional-level research experience who volunteer their skills; and patients who seek to shape the practice of patient engagement by providing consulting to researchers and health institutions and organizations. Sorting the participants in this way was instructive as it helped to illuminate some of the tensions within the engaged patient community, particularly as they relate to the increasing “professionalization” of patients. In particular, participants were divided on whether meaningful contribution to engagement activities requires full partnership with researchers. In addition, there was concern among some participants that research-related training for patients may affect patients’ abilities to maintain their unique patient perspectives, considering the intensive socialization into research practice that training provides. Another notable finding was that some participants felt that patients who advise on the practice of patient engagement do not necessarily represent the views and preferences of all engaged patients.

While there are no easy solutions to resolving these tensions, this study helps to shed light on patient views on engagement in research and offers ideas for further investigation.

Does DBS change a patient's personality? This is one of the central questions in the debate on the ethics of treatment with Deep Brain Stimulation (DBS). At the moment, however, this important debate is hampered by the fact that there is relatively little data available concerning what patients actually experience following DBS treatment. There are a few qualitative studies with patients with Parkinson's disease and Primary Dystonia and some case reports, but there has been no qualitative study yet with patients suffering from psychiatric disorders. In this paper, we present the experiences of 18 patients with Obsessive-Compulsive Disorder (OCD) who are undergoing treatment with DBS. We will also discuss the inherent difficulties of how to define and assess changes in personality, in particular for patients with psychiatric disorders. We end with a discussion of the data and how these shed new light on the conceptual debate about how to define personality.

AIM. To describe patient participation in decision making during nursing
care from patients’ and nursing staff’ perspectives.
METHODS. The sample consisted of medical and surgical patients (n =
300) and the nursing staff (n = 118) working in the respective wards in
three general hospitals. A questionnaire was used for the study; data were
collected from April 2009 to September 2010. Data were analyzed by an
exploratory factor analysis.
RESULTS. Patient participation was recorded at a medium level during
nursing care, although it was rated as important from both patients and
nursing staff. Exploratory factor analysis revealed the factor structure for
the planning and implementation of the nursing care. Providers and
receivers of nursing care perceived participation in a similar way. Interpersonal
interaction was supported from older and less educated patients,
as well as from university-educated nurses. Patient participation was
greater in practical aspects of care and limited in technical medical issues
and supportive services.
CONCLUSIONS. Patient participation, although moderate, was evident
during nursing care in hospital settings. Paternalism in the decisionmaking
process was the dominant trend, whereas interpersonal interaction
between the parties was recognized as a prerequisite for planning
nursing care.

A common strategy in the early days of the German Democratic Republic was the exter-nalisation of social issues as remnants of former political systems, e.g. Capitalism. In 1950, the socialist party argued that “[w]e need to see that the question of prostitution and begging will settle itself through our societal development to such an extent that it will not be a problem anymore”.  This line of arguments was also valid for alcohol abuse. As for people with sexually transmitted diseases, alcoholism was highly moralised and seen as opposing socialist ideals. Even in 1979, a legal expert proclaimed at the conference of abstinent alcoholics and drug addicts that “[a]buse and addiction are always and in the first place consecutive symptoms of personal guilt and human failure”.  However, at this time a shift had occurred already, moving away from individualising alcohol addiction as ‘social deviance’. Now, alcoholism was conceptualised as a disease according to the change in the WHO guidelines. In this paper, I will show how the changing mentalities and concepts of alcoholism influenced the social and medical treatment of patients with an addiction in the former East German state. For this endeavour, patient and secret police files, pictures and material from educational campaigns, as well as ego documents will be utilised. I will argue that the state politicised ‘alcoholics’ and prevented self-aid groups as they were seen as a potential opposition and thus limited the therapy opportunities for patients.

This paper is a short report on my PhD thesis, with the same title, in which I demonstrated how stories told by medical students and patients within or when reflecting on their encounters are used to construct identities in relation to each other. The findings have a number of implications for the practice of clinical teaching and learning.

In this paper, we argue that ill persons can suffer from epistemic injustice in the sense articulated by Miranda Fricker (2007). Ill persons can suffer testimonial injustices because they are regarded as cognitively unreliable, emotionally compromised, or existentially insecure in ways that render their testimonies suspect. Ill persons can also suffer hermeneutical injustices because their efforts to engage in the collective project of sharing and interpreting their experiences are often compromised by the entrenched norms and prejudices of contemporary healthcare. These kinds of injustices can arise for both somatic and mental illness and we identify how they arise from the presumptive claims about the epistemically privileged status of healthcare professionals. We close the paper by proposing that phenomenology can play an important role in ameliorating both kinds of epistemic injustice by helping to close the gaps in collective hermeneutical resources which otherwise prevent ill ...