AN EXPERIENCE REPORT OF A SUPPORT GROUP TO PATIENTS WITH PARKINSON’S DISEASE, FAMILY AND COMMUNITY CONDUCTED IN A PARKINSON ASSOCIATION OF RIO GRANDE DO SUL/BRAZIL (APARS) Neusa Chardosim1, Valéria Gonzatti1, Thaís Landenberger, 1 Irani de Lima Argimon 1 1Pontifícia Universidade Católica do Rio Grande do Sul (PUCRS), Porto Alegre/Brazil;
INTRODUCTION
RESULTS
Parkinson’s disease (PD) is a condition that degenerates the central nervous system and has a chronic and progressive course. It is defined by a severe reduction in the dopaminergic production at the substantia nigra, engendering motor symptoms – muscle rigidity, tremors, movement delay, and balance and gait disturbance – and non-motor symptoms – depression and sleep, memory and other disruptions. Living with the disease is consuming and demanding, both to the patients and to the family and carers. Hence the need to invest in alternatives to aid this population at different points in the course of the disease.
Participants were educated about the progress and main symptomatology of PD and encouraged to exchange experiences and share the difficulties in living with the disease. Considering the participants’ reports and attitudes, the meetings engendered positive understanding and acceptance of the disease, which is the first step do improve quality of life. We observed an improvement in participant’s ability to identify and manage the symptoms and confidence to expose their condition to the community, leading to a more active social life. The relatives proved to be better informed about the clinical condition of the PD and the symptoms involved, as well as more confident in care managements. They reported feeling supported and emotionally cared for by participating the groups.
OBJECTIVE The objective of this study is to present an experiment conducted in a Parkinson association of Rio Grande do Sul/Brazil, in which guidance about the disease, emotional support, comfort and solidarity are offered to the PD patients and family, considering their difficulties and needs.
METHODS SUPPORT GROUPS The groups comprised 3-20 participants with PD, with a free aspect (participants were allowed to join or leave at any moment). The encounters were arranged weekly, in one-hour sessions. The relatives were allowed to join the reunions once for month, whereas the group maintained the previous setting. The service was free charge and open to community and was advertised in the media and social media (e. g., radio, television, Internet). The present experiment occurred from March/2014 to March/2016. STAFF MEMBERS The groups were conducted by a psychologist and included, at some moments, assistance, incentive and technical support from voluntary professionals from myriad fields, such as: Neurobiology, Psychology, Gerontology, Physiotherapy, Nutrition, Occupational Therapy, Speech Therapy, and Justice. TECHNICS AND STRATEGIES The encounters had a therapeutic group format following the Operative Group logistic, which relies in Pichon Riviére’s theories, as well as Positive Psychology characteristics, modulating the participants’ self-esteem. Furthermore, the encounters assumed a psychoeducative character, considering the disorder, related symptoms, palliative care, and adequate treatment. Operative groups’ repercussions: • Support • Relationships’ strengthening • Improved staff-client communication • Improved solidarity • Learning • Comprehension of the condition • Engendering assertive attitudes • Improved understanding of one’s rights • Improved verbalization capacity • Creation of leisure and integrative activities
Excerpts from patients participating in the group: “The group gave me the joy of belonging to the community again” “Here, in the group, I feel comfortable, because I know I won’t be chastised. I feel like I belong” “The information I got in the group helped me cope with Parkinson’s disease” “If I paralyze during the group, no one will laugh at me, instead, they will help me continue” “Here I can laugh at my condition” “I found friends in the battle against Parkinson in this group” “The group brought me wisdom” “The group and the disease made me stronger” Motto of the APARS support group: “Living with Parkinson’s, not by Parkinson’s.” (Angela Garcia) “We are all angels with sole wings and we can only fly when embraced with each other” (Fernando Pessoa) CONCLUSION Throughout the intervention, It was observed that the participation and socialization in the groups and the patients and their families’ orientation about the disease, associated with the techniques used, contributed to the adherence and effectiveness of the PD treatment. Moreover, the patients were empowered in facing their reality, improving their quality of life. Psychological support is essential to overcome the emotional problems, accept the disease, cope with the physical and cognitive losses, and, above all, understand their feelings and emotions, which helps the patients and their families in not feeling lonely, suffering, and improves their self-esteem. REFERENCES 1.FERNANDES MT. Working with groups in Families Health: concepts and strategies for transcultural care. [Masters dissertation]. Belo Horizonte (MG): Nursing, Federal University of Minas Gerais; 2006. 2.HUTZ, C. S. (Eds.). Evaluation of positive psychology. Porto Alegre: Artmed 2014. 3.OSÓRIO LC. Groups, theories and practices: connecting to the era of groupality. Porto Alegre (RS): Medical Arts, 2000. 4.PICHON-RIVIERE, E. Theory of the bond. São Paulo: Martins Fontes, 1988. 5.PICHON-RIVIERE, E. The group process. São Paulo: Martins Fontes, 1998.
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