Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies.
This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7.
A predominant theme to emerge was 'participation in health research to access health services.' Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a "trial and error" process akin to research, which further blurred the boundaries between research and treatment.
Our findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or treatment. Those with low health status may be more vulnerable to potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findings also indicate the need for boundary work in order to better differentiate treatment and research. It is important however to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about the possible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that the primary purpose of research is to gain new knowledge yet they also identified a range of actual health benefits arising from their participation.
The 2004 terror attack on a school in Beslan, North Caucasus, with more than 1300 children and their families taken hostage and 334 people killed, ended after extreme violence. Following the disaster, many survivors with blast ear injuries developed complications because no microsurgery services were available in the region. Here, we present our strategies in North Ossetia to strengthen subspecialty surgical care in a region of instable security conditions. Disaster modifies disease burden in an environment of conflict-related health-care limitations. We built on available secondary care and partnered international with local stakeholders to reach and treat victims of a humanitarian disaster. A strategy of mutual commitment resulted in treatment of all consenting Beslan victims with blast trauma sequelae and of non disaster-related patients. Credible, sustained partnerships and needs assessments beyond the immediate phases after a disaster are essential to facilitate a meaningful transition from humanitarian aid to capacity building exceeding existing insufficient standards. Psychosocial impacts of disaster might constitute a barrier to care and need to be assessed when responding to the burden of surgical disease in conflict or post-conflict settings. Involving local citizen groups in the planning process can be useful to identify and access vulnerable populations. Integration of our strategy into broader efforts might strengthen the local health system through management and leadership.
In previous issues of this journal, Carol Gilligan's original concept of mature care has been conceptualized by several (especially Norwegian) contributors. This has resulted in a dichotomous view of self and other, and of self-care and altruism, in which any form of self-sacrifice is rejected. Although this interpretation of Gilligan seems to be quite persistent in care-ethical theory, it does not seem to do justice to either Gilligan's original work or the tensions experienced in contemporary nursing practice.
A close reading of Gilligan's concept of mature care leads to a view that differs radically from any dichotomy of self-care and altruism. Instead of a dichotomous view, a dialectical view on self and other is proposed that builds upon connectedness and might support a care-ethical view of nursing that is more consistent with Gilligan's own critical insights such as relationality and a practice-based ethics. A concrete case taken from nursing practice shows the interconnectedness of professional and personal responsibility. This underpins a multilayered, complex view of self-realization that encompasses sacrifices as well.
When mature care is characterized as a practice of a multilayered connectedness, caregivers can be acknowledged for their relational identity and nursing practices can be recognized as multilayered and interconnected. This view is better able to capture the tensions that are related to today's nursing as a practice, which inevitably includes sacrifices of self. In conclusion, a further discussion on normative conceptualizations of care is proposed that starts with a non-normative scrutiny of caring practices.
In its examination of American Medical Aid to Russia, this article shows how the best of intentions can have the potential to go horribly awry. It argues that the competing binary forces of international collaboration and goodwill versus political tensions and uncertainty combined to create an environment wherein actors and agents inhabited an ever changing and unpredictable international stage. Could American philanthropic organisations and individuals overcome political volatility, financial restrictions and ideological barriers? Just what would it take to establish an American hospital in Moscow, the Bolshevik seat of power? The attempt to establish the hospital proved to be an exercise in patience, persistence and prudence (although not always in equal measure). This article shows that international cooperation, while undoubtedly complicated, was certainly possible. The flow of information, materiel and personnel between the United States, Germany and Russia proved that good intentions, trust and a will to help others were valued. The history of American Medical Aid to Russia also demonstrates that the Quaker role of facilitator and interlocutor was vital in establishing a relationship of trust between Soviet Russia and the United States. This article discusses the difficulties that philanthropic organisations faced when navigating the choppy international waters of the early 1920s and highlights the rewards of successfully doing this. It argues that basic human relationships and trust were just as, if not sometimes more, important than ideology in determining the tenor of early US-Soviet relations.
It can be argued that living altruistic donors should remain anonymous and should not express preferences in the selection of organ recipients. This study aimed to describe the views of transplant physicians in France and Québec regarding these issues. A total of 27 French and 19 Québec renal transplant physicians took part in individual, semi-directed interviews. Almost all of the physicians agreed that anonymity is mandatory in living altruistic donation (LAD). Regarding the issue of directed donation, most of the French physicians (78%) were opposed to any form of the practice, compared to only a third of their Québec colleagues (32%). We found that these positions were embedded in their respective cultural, legal and social contexts. These results afford a better understanding of these complex issues in two different cultural contexts, and will be useful in the development of international guidelines for LAD.
The issue of artificial feeding for patients with dementia who refuse feeding by hand is a wrenching emotional problem that can cloud clinical judgement. It is helpful to apply an analytic approach to decision making. There are five steps: gathering a comprehensive clinical database; defining the goal of treatment; knowing the treatment options available, their burdens and potential benefits; understanding the law; and defining the moral framework in which care is being given. Such an approach can be used to formulate a plan of treatment in the best interests of incompetent elderly patients who cannot speak for themselves.
Cites: McGill Law J. 1981;26(4):847-7911650592
Cites: Can Med Assoc J. 1979 Nov 3;121(9):1175-90159118
Cites: Ann Intern Med. 1982 Aug;97(2):231-417049032
Cites: Nursing. 1983 Jan;13(1):47-516549673
Cites: Arch Surg. 1983 Aug;118(8):913-46409054
Cites: Br Med J (Clin Res Ed). 1983 Nov 26;287(6405):1589-926416514
The impetus for this qualitative study was the premise expressed by lay people that nursing terminally ill cancer patients must be depressing and difficult to cope with. Its focus was nurses' stress and coping strategies, both secular and religious. Data was collected using a narrative life-story approach, and then Lazaruz and Folkman's coping theory and Pargament's theory on the psychology of religion were used during the analysis of the data. Several factors were identified, related to the individual and group levels, that influence a nurse's identity and professional development. A person's life orientation was suggested as a first concept for developing a professional paradigm that includes caritas as a main orienting factor. Directed by the nurse's secular and religious orientation, competence develops, making it possible to understand, analyze, manage, and appreciate the significance of the professional work of caring.