Session Information
Date: Monday, June 20, 2016
Session Title: Quality of life/caregiver burden in movement disorders
Session Time: 12:30pm-2:00pm
Location: Exhibit Hall located in Hall B, Level 2
Objective: To estimate the contribution of a group meeting for newly diagnosed PD patients and their spouses.
Background: Parkinson’s disease (PD) is a common neurodegenerative disease that is highly stigmatized. The period following diagnosis is inevitably an emotional one for the patient and family which may lead to lack of motivation and poor compliance. Knowledge about various aspects of PD and sharing personal experiences related to PD were proposed to enable better quality of life and coping. In a single 3-hour group meeting, PD patients, all diagnosed within the past year, and their spouses were introduced to the clinical service of our movement disorders unit. The meetings were led by the service’s multidisciplinary team, comprised of neurologists, a psychiatrist, a nurse, a speech therapist a social worker (SW) and included 3 parts. Initially, a question was referred to all the participants: "with whom did you share the diagnosis?" followed by an activity with interactive cards "Cope" that aimed to create an emotional bonding by sharing each participant’s feeling with the rest of the group members. Finally, the patients and their spouses referred informative questions to the team members.
Methods: A retrospective study, based on a structured telephone survey performed by the SW.
Results: Three individual sessions each 3 hours long were held and included 24 PD patients (7 females, H&Y ≤2) and 16 spouses (13 females). Thirty-eight participants responded to the questionnaire (23 patients, 7 females, age 54-85 years and 15 spouses, 12 females, age 53-80 years). Twenty-six of them felt that the meetings contributed to the acquaintance with the multidisciplinary team, 30 reported that the meeting helped them feeling welcome at the clinic, 33 felt that the meeting contributed to their ability to discuss the PD diagnosis with friends and relatives, and 4 reported that friendships were formed at the meeting. When asked "what is the most important benefit that you obtained from the meeting?" 21 reported "information", 16 reported "support", 18 reported "getting to know the multidisciplinary team" and 4 reported "friendships".
Conclusions: Most participants felt that these meetings helped them to adjust more easily to the challenges of coping with the recent diagnosis of PD.
To cite this abstract in AMA style:
N. Geva, A. Hilel, Y. Manor, S. Arad, A. Ezra, N. Giladi, T. Gurevich. Group meetings for newly diagnosed Parkinson’s disease patients and their spouses: A preliminary experience [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/group-meetings-for-newly-diagnosed-parkinsons-disease-patients-and-their-spouses-a-preliminary-experience/. Accessed December 11, 2024.« Back to 2016 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/group-meetings-for-newly-diagnosed-parkinsons-disease-patients-and-their-spouses-a-preliminary-experience/