Dissertation Yolanda Maria Chacon Gamez

Abstract

Parkinson’s disease (PD) is a complex and heterogeneous disease that has a major impact on the lives of patients and their family caregivers. It also poses a great challenge for healthcare professionals. Device-aided therapies such as deep brain stimulation (DBS) or medical pumps like the intrajejunal infusion of levodopa (known commercially as Duodopa® pump) have emerged as an option for PD patients who do not respond adequately to oral treatment. This thesis provides an in-depth look at the experience of suffering from PD while being treated with DBS or the Duodopa® pump (DP) including the perspective of family caregivers. Forty-four participants (twenty-four patients and twenty family caregivers) participated in the study that has led to this thesis. To conduct it, I have employed a multimodal methodology by means of narrative semi-structured interviews and drawings. This methodology helps participants, particularly those with difficulty articulating themselves, express their experience with the disease and their perception of the treatment. I believe that the use of drawings complementing semi- structured interviews offers additional insights into the participants’ perception of the disease and the treatment. I have developed my research within the framework of DIPEx (Database of Patients Experiences Research Initiative) and the results will be further presented on the Swiss website.

The study distinguishes four groups of experiences reported by the patients and their family caregivers that can be classified as follows: daily life and perception of PD and the effects of device-aided treatments; self-perception; social interaction and partnership/family dynamics; and the health needs of PD patients. I will begin by outlining a general introduction about PD, DBS, and DP. Then I will present the objectives of my research, my research questions and the methodology employed. The first chapter focuses on the importance of qualitative studies to explore possible changes in personality or identity due to DBS and the difficulties of measuring these concepts through quantitative methods. The second chapter focuses on the experiences of patients and family caregivers with PD and DP and illustrates their perception of the disease and the treatment. The third chapter delves into the participants’ experiences with PD and DBS. It presents seven themes: “Everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I still have Parkinson’s”, “DBS is not perfect” and “being different after DBS”. The last article addresses the experiences of PD patients treated with device-aided treatments and family caregivers with healthcare professionals. The analysis of these experiences allowed the identification of some of the unmet needs of PD patients and the three areas of work to focus on in order to better implement a patient-centred care model for PD patients in Switzerland. These three areas of work are: communication and engagement; organisation and professional experience; and respect for patients’ needs and preferences.

Yolanda Chacon