When a patient goes home: Meaningful lessons in designing for the patient experience of Cervical Radiculopathy and Stroke paralysis

Presented in this paper are remarkably powerful learning experiences from two researchers in two separate studies. One dealing with the lived experience of patients suffering paralysis from stroke or brain haemorrhage and the other studying patients with Cervical Radiculopathy. Both cases originate in Denmark where recent measures have been initiated aimed at increasing rehabilitation of patients in their homes, but with a strong technology solution focus (P@H, 2013). The projects aims were similar; to explore the complex lived experience of patients so as to improve the experience (and efficacy) of home rehabilitation for people with these conditions. In this paper we not only share our practical experiences and lessons learned in pushing the boundaries of researching human experience but also how it deeply affected us as researchers in achieving the illusive, 'experience of understanding' - what it means to live with such medical conditions. In doing this we also expose some of the heartbreaking moments that arose as a result of research techniques we applied that caught us unprepared, but which produced insights so moving, unexpectedly candid and profound
Both studies adopted a hermeneutic phenomenological approach (Van Manen, 1997) but were applied differently as each case required. Both incorporated methods such as extreme researcher embodiment (experience prototyping), immersive field data gathering (utilising new digital technologies), unstructured in-situ conversations as well as observations during treatment processes. Data analysis was conducted through an intricate nine step process (Coxon, 2008) - interpreting patient's experiences, particularly the explication of deeper meaning structures hidden within their various communications.
This paper is primarily about sharing our stories of research highs, lows and lessons arising therefrom. We share insights gained in a process which shows the ineffectual nature of and opportunities lost in many normalised approaches to treatment. It is really about how to deeply understand patients in almost any sphere of health – to appreciate their viewpoint - to find new ways to bring the two worlds of treatment and treated together – harmoniously and productively.