Objective: To show what does it mean to be PPD and the relationship with their environment from the point of view of the participants.

Background: Movement Disorders Science can be benefited from qualitative studies to translate Basic Science to Clinical Practice. It has been recognized the importance of what PPD and their relatives think not only in clinical contexts but also when PPD are going to be under DBS. In clinical settings, what People with Parkinson´s Disease (PPD) feel about themselves and the others, their care and the treatment they receive is as important as their motor status.

Method: Participants: 10 PPD who attended the Parkinson’s Workshop Program (PWP -Medical School, National University of La Plata) and some of their caregivers/spouses. Methods: focus group, informal and in-depth interviews and self-reports in the context of an ongoing participant observation. Data collection and construction: verbatim transcription and qualitative analysis with the assistance of the Atlas.ti 8.0.

Results: The interviews and self-reports focused on how their lives were going with Parkinson’s (including the self, the other [partner] and the others [people with or without Parkinson], cfr. Agid et al, 2006), and the line of conversation varied from the facts and feelings before and after diagnosis to the marital situation after a Parkinson’s disease surgery. The focus group started from the question What is Parkinson’s disease for you? The themes resulting from the more grounded codes were:(a) The concept of the illness: care and treatment, estrangement vs companion, physician attitude, reaction in front of diagnosis, anguish before receiving the diagnosis, and emotion as cause or consequence of the disease.(b) The self and the environment: self-description of the symptoms, the other (partner) and the others (family, friends, others with PD), and relationships with the PWP.(c) The parkinsonian body: body-efficacy expectations and body image, impact of the symptoms, the losses, stigma, self-steem, and blame.(d) The power to overcome the symptoms.

Conclusion: The results showed that participants were concerned about how their disease were affecting their life and relationships, their feeling about their parkinsonian body and how to cope with difficulties as a result of their disease. The physician and others’ attitude, the treatment and their concept of illness and disease played an important role to help them to improve their quality of life.

References: [1] Agid Y, Schüpbach M, Gargiulo M, Mallet L, Houeto JL, Béhar C, Maltête D, Mesnage V, Welter ML. Neurosurgery in Parkinson’s disease: the doctor is happy, the patient less so? J Neural Transm 2006, (Suppl 70): 409-414. [2] Estrada Gamarra AH, Silva Molski C, Hilbig A, Kern Valentini C, Widniczck Striebel VL, de Mello Rieder CR. Evaluation of body image and self-concept and their correlation with depressive symptoms in Parkinson’s Disease. Arq Neuropsiquiatr 2009, 67(3-A):585-90. [3] Guests G, Namey EE, Mitchell ML. Collecting Qualitative Data [E-book]. SAGE. 2013. [4] Soundy A, Stubbs B, Roskell C. The experience of Parkinson’s disease: a systematic review and meta-ethnography. ScientificWorldJournal 2014, 2014:613592. doi: 10.1155/2014/613592. [5] Suzukamo Y, Ohbu S, Kondo T, Kohmoto J, Fukuhara S. Psychological adjustment has a greater effect on health-related quality of life than on severity of disease in Parkinson’s disease. Mov Disord 2006, 21(6):761-766. doi: 10.1002/mds.20817.

« Back to 2019 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/people-with-parkinsons-disease-ppd-disease-stigma-and-the-others/