People with Parkinson's Disease (PPD): disease, stigma and the others

MARÍA DE LOS ANGELES BACIGALUPE

MOVEMENT DISORDERS

WILEY-LISS, DIV JOHN WILEY & SONS INC

Lugar: New York; Año: 2019 vol. 34 p. 244 - 244

0885-3185

Objective: Toshow what does it mean to be PPD and the relationship with their environmentfrom the point of view of the participants. Background: Movement DisordersScience can be benefited from qualitative studies to translate Basic Science toClinical Practice. It has been recognized the importance of what PPD and theirrelatives think not only in clinical contexts but also when PPD are going to beunder DBS. In clinical settings, what People with Parkinson´s Disease (PPD)feel about themselves and the others, their care and the treatment they receiveis as important as their motor status. Methods: Participants: 10 PPD whoattended the Parkinson?s Workshop Program (PWP -Medical School, NationalUniversity of La Plata) and some of their caregivers/spouses. Methods: focusgroup, informal and in-depth interviews and self-reports in the context of anongoing participant observation. Data collection and construction: verbatimtranscription and qualitative analysis with the assistance of the Atlas.ti 8.0.Results: The interviews and self-reports focused on how their lives were goingwith Parkinson?s (including the self, the other [partner] and the others[people with or without Parkinson], cfr. Agid et al, 2006), and the line ofconversation varied from the facts and feelings before and after diagnosis tothe marital situation after a Parkinson?s disease surgery. The focus groupstarted from the question What is Parkinson?s disease for you? The themesresulting from the more grounded codes were: (a) The concept of the illness:care and treatment, estrangement vs companion, physician attitude, reaction infront of diagnosis, anguish before receiving the diagnosis, and emotion ascause 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 parkinsonianbody: body-efficacy expectations and body image, impact of the symptoms, thelosses, stigma, self-steem, and blame. (d) The power to overcome the symptoms. Conclusions:The results showed that participants were concerned about how their diseasewere affecting their life and relationships, their feeling about theirparkinsonian body and how to cope with difficulties as a result of theirdisease. The physician and others? attitude, the treatment and their concept ofillness and disease played an important role to help them to improve theirquality of life.