Living with Parkinson’s disease and connected to the duodopa pump: A qualitative study

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. The duodopa pump is one of the treatments options for advanced PD. The experience of patients with this treatment is largely unexplored, however. This study is based on the experiences of patients with PD as well as their family caregivers using the pump. We take a multimodal approach that includes 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. We believe that the use of drawings complementing semi-structured interviews offers additional insights into the participants’ perception of PD and the pump. In this article we focus on the following topics: the participants’ perception of PD and the pump, the reasons for choosing the pump over alternatives, and the advantages and disadvantages of this treatment for patients and family caregivers. Our findings show that the participants consider PD as a complex and unpredictable disease that changed their lives and affect everyone differently, while the pump makes the disease less changeable and more manageable.

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

“…This study identified four groups of experiences reported by the patients and their family caregivers that can be classified in the following way: daily life and perception of PD and the effects of device-aided treatments, self-perception, social interaction and partnership/family dynamics, and experiences with different healthcare professionals including the receipt of PD diagnosis and the specific health needs of PD patients [52]. Due to the enormous amount of data obtained with this study and the different research questions we had, we decided to divide the results into three articles answering different questions [52,53]. Therefore, this article will focus on the first three categories mentioned above that are related to the experiences of PD patients treated with DBS and their FCs.…”

“…The aim of DIPEx is to present to a wide public (patients, family caregivers, health professionals, and students) a wide spectrum of diverse perspectives about different illnesses and health conditions [56,57]. Therefore, the Selected Material of the presented data in this paper will be uploaded to the Swiss DIPEx website in 2022 (www.dipex.ch, accessed on 4 May 2021) [53].…”

“…The inclusion criteria were as follows: (i) patients diagnosed with PD or relatives providing care to a PD patient and (ii) patients treated with DBS for at least six months or family caregivers providing care to PD patients treated with DBS for at least six months. The following exclusion criteria were applied: (i) lack of legal competency, (ii) people expe-riencing moderate or severe dementia or experiencing substance addiction at the moment of the interview, (iii) and lack of physical and psychological resilience to participate in an interview or difficulties interacting with an interviewer [53]. The inclusion and exclusion criteria were first evaluated and applied by the healthcare professionals that helped us to recruit our participants.…”

“…We applied a multimodal approach that includes the conduction of narrative semistructured interviews and the collection of drawings. This multimodal methodology allows the collection of data about the experience with the disease and the treatment, incorporating both language-based and nonverbal communication to express their individual experiences and give them meaning [48,53,58]. We collected the data of the presented dataset, collecting drawings and conducting thirty-six interviews, of which thirty were conducted in 2019 and six took place in 2020.…”

“…Therefore, all interviews started with a narrative part to learn about the participants' individual experiences, which was introduced with the following question: "Could you explain your experience with PD and DBS since the beginning?". This question gave the participants great freedom to put their personal narrative into words [53].…”