Understanding Expectations of, and Satisfaction with Deep Brain Stimulation of the Subthalamic Nucleus: patient and carer perspectives in Parkinson's disease

Abstract

This thesis is concerned with understanding the challenges faced by individuals living with Parkinson’s disease. The first section comprises a literature review of 26 studies examining the predictive relationship between patients’ symptoms and the level of burden reported by caregivers. Analysis of results suggests that whilst patient’s motor, psychiatric and cognitive symptoms are associated with caregiver burden, there is less evidence of a direct predictive relationship. A critique of studies’ methodologies highlights inconsistent measurement of caregiver burden and participant recruitment strategies that question the ecological validity of results. Clinical implications and directions for future research are addressed. The second section presents a qualitative study examining patient and caregiver perceptions of a neurosurgical procedure (deep brain stimulation) which aims to alleviate Parkinsonian motor symptoms. Through semi-structured interviews, this longitudinal study explores 8 patients’ and 6 respective caregivers’ expectations of surgery and their subsequent evaluations of its impact. Using Template Analysis, the study investigates whether participants’ evaluations of surgery overlap with themes deemed salient prior to surgery, and whether patients and carers differ in their accounts. Findings suggest some consistency in pre- and post-surgical discussions, with change in motor symptoms and quality of life deemed important. However, unanticipated difficulties with fluctuating symptom change and side effects impacted on satisfaction. Participants also evaluated the manner in which treatment was delivered. Patients and caregivers did not differ substantially in the themes discussed. Clinical implications of these findings are discussed as well as a critique of the study’s methodology, with directions for future research proposed.