Improving the quality of life for individuals with DBS through clinical care, education, research and innovation
DBSNA is proud to launch the new DBS Patient Journey Booklet for Parkinson's disease.
The DBS patient journey booklet came out of a larger research thesis conducted at The Royal College of Art and Imperial College London as part of the Healthcare & Design MRes course. My thesis attempted to examine the patient experience of deep brain stimulation therapy and to understand what design methods and interventions might best positively enhance a patient’s experience. User centred design thinking and ethnographic methods, such as participatory action research, were used to explore and investigate the field and uncovered that communication and how information is relayed plays a key role in the patient’s overall experience and expectations of the therapy.
The research gathered insights from eleven Parkinson patients. These past patients had had DBS therapy between 2013 and 2020. Within this cohort, the timeline from diagnosis to receiving DBS therapy ranged from 7 to 16 years. Other key stakeholders engaged with were clinical team members, including three consultant neurosurgeons, four specialist nurses and a consultant neurologist.
What is unique about this booklet is that it was co-created with past patients and clinicians through a series of workshops and interviews. The lived experience and expertise of the participants were central to its formation. For the final delivery phase of this booklet, I was fortunate enough to have graphic designer Jazzy Olive as a collaborator and co-designer. Jazzy has a passion for using her graphic design skills in the healthcare arena and is also an MRes/MSc Healthcare & Design student at the same institutions.
-Christina Yianni (Healthcare & Design Researcher)