'I'm worried about getting water in the holes in my head': A phenomenological psychology case study of the experience of undergoing deep brain stimulation surgery for Parkinson's disease.

ABSTRACT

OBJECTIVES: Deep brain stimulation (DBS) is a form of biotechnological surgery which has had considerable success for the motor improvement of Parkinson's disease and related disorders. Paradoxically, this observed motor improvement is not matched with improved psychosocial adjustment. This study contributes to a small but growing body of research aiming to understand this paradox. We conclude by discussing these aspects from a phenomenological and health psychology understanding of decision-making, human affectivity, and embodiment. DESIGN: A hermeneutic phenomenological case study. METHODS: Semi-structured interviews with one woman with Parkinson's disease were carried out paying particular attention to (1) how the decision to have the procedure was made and (2) the affective experience in the time periods immediately prior to the procedure, shortly after and 1 month later. RESULTS: The thematic structure derived from the hermeneutic phenomenological analysis comprises the following experiential aspects Making the decision 'I was feeling rather at a dead end with my Parkinson's'; Shifting emotions and feelings 'Terrified, excited, disappointed, overjoyed'; Embodied meaning 'This extraordinary procedure where they were going to drill holes in my head'. CONCLUSIONS: This research has elucidated the complexity of decision-making, the emotional landscape, and specific bodily nature of the experience of DBS. It has suggested implications for practice informed by both existential-phenomenological theory and health psychology. Statement of contribution What is already known on this subject? Deep brain stimulation (DBS) is a newly developed form of biotechnological surgery and research indicates a mismatch between motor success and psychosocial adjustment. Most studies focuses on life post-DBS and there is relatively little research on how people make the decision to have the procedure, what their experience is of undergoing it including its emotional aspects. What does this study add? This study demonstrates that making decisions with respect to health and illness is complex and best understood as a form of embodied cognition. Findings indicate that the experience of undergoing DBS surgery is one of multiple emotions, especially fear and feelings of 'unhomelikeness'. This study highlights the relevance of a lifeworld, people-centered and humanizing approach to helping health care professionals support people through an illness/treatment trajectory.