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3rd Global Conference
Making Sense of: Health, Illness and Disease
Monday 5th July - Friday 9th July 2004
St Catherine's College, Oxford
Conference Programme, Abstract & Papers
Session 4: Making Choices: Three
Views
Chair: Glenys Godlovitch
The Information Requirements of People With Cancer: Where to After
the ‘Patient
Information Leaflet’?
Claire Balmer
Senior Research Nurse,
Dorset Cancer Centre, Poole, Dorset, United Kingdom
Information-seeking is encouraged in today’s consumerist healthcare culture and the media is recognised as a key information source in contemporary society. However, there have been few attempts to analyse the way in which people utilise it for information about ill-health and medical care, either from the perspective of healthcare research or media studies. This paper presents a study in which naturalistic inquiry was employed to explore the extent and manner in which the media (including the internet) was utilised as an information source by people with cancer. The results reveal that the media was used considerably throughout the experience of living with cancer for the sample studied and it was seen as an important contributor to knowledge and facilitator for decision-making. The participants were not passive receivers of media messages but engaged with and interpreted the media depending on, for example, their particular needs at the time or their rating of the media source. Consumption of health information via the media was sometimes constrained by certain factors, such as the participants’ physical inability to access some sources at certain times. Furthermore, their needs were not always satisfied because media discourse and ‘newsworthiness’ restricted the reporting of what they were looking for. The study highlights the importance of the media as an information source for these people with cancer and reveals some of the inadequacies of information produced from a biomedical perspective. It calls for further research and a greater awareness of this phenomenon by healthcare workers.
Exploring the Meaning and Ethics of “Informed Choice” in
Midwifery Healthcare
Philippa Spoel
Department of English,
Laurentian University,
Sudbury, Ontario,
Canada
Within Canadian midwifery, “informed choice” constitutes
a guiding principle for ensuring that childbearing women are empowered
as active participants and primary decision-makers in the healthcare
process. By contrast with the medical concept of informed consent, in
which the term “consent” implies a giving of permission or
compliance to a higher authority, the midwifery concept of informed choice
suggests that women have the power or opportunity to choose among meaningful
alternatives. Ideally, the principle of informed choice supports a women-centred
ideology of healthcare in which midwives facilitate an ongoing process
of non-authoritarian exchange that enables women to function as knowledgeable,
empowered decision-makers.
However, the way in which this ideal, women-centred
meaning of informed choice is articulated by professional guidelines
for midwives reveals potentially problematic ethical tensions and ambiguities
within this healthcare principle. To better understand some of these
tensions and ambiguities, I will explore how midwifery’s interpretation
of informed choice is both different from but also, necessarily, influenced
by the broader healthcare context in which informed choice currently
functions as a privileged concept. In particular, this exploration will
focus on the privileged role of informed choice within a consumerist
ideology of healthcare and within the growing domain of genetic counseling.
Within these broader contexts, informed choice is based on ethical principles
and possesses ideological implications that at first glance seem to support
but on closer examination appear potentially at odds with the women-centred
ideal of midwifery healthcare. For example, what are the limits of “choice” in
the consumerist model? How does a consumerist approach detract from rather
than foster an empowering relationship of trust between the childbearing
woman and her midwife? Are mainstream bioethical principles such as “individual
autonomy” and “non-directiveness” that guide the genetic
counselling model of informed choice incompatible with midwifery’s
women-centred ideal? By exploring questions such as these, I hope to
show both the constraints and the possibilities for re-articulating the
principle of informed choice in midwifery (and potentially other domains
of healthcare) in terms that privilege an ethics of commitment, engagement,
and inter-subjectivity for the healthcare relationship.
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Paper - 
Challenging Notions of Risk and Rational Choice in Public Health: An Ethnographic
Perspective on Interventions and Families
Samantha Gottlieb
Johns Hopkins Bloomberg School of
Public Health,
Baltimore, MD, USA
The public health model of intervention currently prioritizes
changing individual behaviour and focuses on individuals’ failures
or successes in behaviour modification. Health interventions and social
institutions penalize those who operate outside their rules, without fully
acknowledging the complicated processes that lead individuals to their
circumstances. The predominant belief assumes given a certain amount of
knowledge or intervention, the behaviour associated with high risk can
change. Core models of behaviour change, such as the Theory of Planned
Behaviour or the Health Belief Model, focus tangentially on the individual’s
context and environment but place the burden of behaviour change on the
individual’s own “rational” choices.
This model of behaviour change, which focuses on individual responsibility,
has not yet demonstrated long-term change in social health behaviours.
Two
crucial elements revealed themselves in the ethnographic, in-depth interviews
with clients of a Baltimore drug and alcohol treatment center – the
pain of relationships and the effects of intervening social institutions
are key components in individuals’ drug use. Through one woman’s
interview, and as echoed in fifteen other interviews with women, I will
discuss the ways in which social interventions have shaped her life and
drug use. Family and the intricacies of situating relationships in a larger
social context are central to these women’s lives, but remain absent
in interventions. The pain and suffering articulated lead me to question
behaviour change assumptions in social and health interventions. Public
health is distinct from the natural sciences precisely because it engages
the social realm, expanding the ideas of health and science with their
interaction with environment, culture, and social norms; these qualities
suggest the potential to develop innovative policies and programs. The
fifteen interviews conducted suggest that a troika of family disruption,
social services and interventions, and social penalization do influence
drug use and determine the meaning of risk.