A Sociology of Medical Innovation:
Deep brain stimulation and the treatment of children with dystonia
Abstract Objective The research site
To explore the day-to-day social, ethical, and clinical challenges The research site is a paediatric ward in a large hospital within the
This doctoral research encountered by a specialist interdisciplinary medical team using UK. Here, an interdisciplinary medical team treats children with
project explores the day-to- deep brain stimulation to manage dystonia in children. severe neuromuscular conditions such as dystonia. DBS is one of
day challenges faced by a the treatments they offer. The youngest patient this team has
treated with DBS was four years old.
specialist medical team Background
using deep brain The team is made up of health professionals from a range of
stimulation (DBS) to treat What is deep brain stimulation (DBS)? backgrounds. It consists of:
children with severe DBS involves using constant electrical stimulation to reduce the • Two neurologists
dystonia. effects of pathological neural activity. DBS is currently being used • A psychologist
to treat Parkinson’s disease, essential tremor, dystonia, obsessive • A specialist nurse
compulsive disorder and major depression. • A physiotherapist
The application of DBS • An occupational therapist
poses significant Surgically implanted electrodes deliver electrical stimulation to a • A speech and language therapist
challenges to clinicians, specific region of the brain. These electrodes are connected to a
patients and policy makers. pulse generator (very similar to a cardiac pacemaker), implanted in Other health professionals work extensively with this team and will
the upper chest. also be included in this project. These include neurosurgeons,
While in most cases DBS is radiographers and administrative staff.
effective, clinical outcomes
can vary significantly
between patients. The rate Why is DBS sociologically interesting?
of adverse reactions is DBS provides an opportunity to explore how technologies are both
unknown, and in some shaped by, and influence, the social world.
patients DBS has induced
New technologies and therapies such as DBS can influence how
significant changes in mood individuals perceive their body and their sense of self, and can
and personality. It is not known exactly how DBS works, but it is thought that alter how they express agency.
constant electrical stimulation can mask the pathological neural
activity that causes various neuromuscular and neuropsychiatric For example, some commentators have argued that patients
This project uses qualitative disorders. undergoing DBS experience changes in mood and personality.
methods to explore how This raises some interesting questions:
such issues are dealt-with What is dystonia? • How do clinicians detect and define a “change in personality”?
• How do clinicians manage patients whose personality has
in-practice by health Dystonia is a neuromuscular condition. Pathological neural activity changed?
professionals. Fieldwork will causes muscles to contract violently or become rigid and stiff. • How do you determine whether a child’s personality has
commence in February changed?
Generalised dystonia usually begins in childhood, beginning in the
2012: medical team lower limbs before spreading to other parts of the body. DBS, like many new medical therapies, has also become subject to
members will be interviewed, media hype and speculation. Patients can also have unrealistic
and observations will be Large muscle groups are affected, often those in the legs and back. expectations of the therapy, and this can hinder the obtaining of
undertaken of team This can be painful and crippling for patients. informed consent. This also raises some interesting questions for
meetings and consultations While medications can provide relief for many patients, some • How are the expectations of patients managed in-practice?
with patients. require surgical intervention. Recently deep brain stimulation is • How do clinicians obtain informed consent from young patients
being offered to those with dystonia in a few specialist centres in and their parents when there is a great deal of uncertainly
North America, Europe and the UK. surrounding the therapy?
• How do clinicians communicate this uncertainty to patients
Methodology New technologies also prompt the formation of novel social groups.
Ethicists, for instance, have argued that DBS patients should be
An in-depth qualitative study of a specific medical offering DBS assessed and managed by specialist interdisciplinary medical
therapy to children will be undertaken. This approach will enable teams. Again, this raises some interesting questions:
an exploration of the complexity of the team’s day-to-day activities, • How do individuals from different disciplinary backgrounds work
and how team members make sense of their work. together?
• How are courses of action decided upon within an
Specifically, the following methods will be used: interdisciplinary setting?
John Gardner, PhD Candidate
• How does this interdisciplinary approach affect the experience of
Department of Sociology
1. Semi-structured interviews with members of the medical team patients?
Brunel University London
and associated health professionals. These will be used to • How well-suited are current policy and NHS structures to catering
draw out their own perspectives on using DBS to treat children. for such interdisciplinary teams?
2. Observations of routine meetings of the medical team. These are some of the questions that are addressed in this project.
Observations will provide a means to explore how By addressing these issues, this project will shed light on the
interdisciplinary collaboration and decision-making take place. relationship between technological innovation and wider social
3. Observations of routine consultations involving health
Centre for Biomedicine professionals, young patients, and patients’ caregivers. These
and Society observations will provide a means of witnessing the day-to-day
‘messiness’ of working with DBS therapy and with young
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