What do people with Parkinson’s disease and an associated voice disorder value about being part of a Parkinson’s disease voice support group?
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Background: As a consequence of the increasing prevalence of Parkinson’s disease (PD) there is a growing need to manage the communication and psychosocial difficulties PWPD face. These difficulties can partly be managed through belonging to support groups. There is a gap in the research regarding what PWPD and a voice disorder value being part of voice support groups. Aim: The aim of this study is to ascertain what members of a PD voice support group value about being part of the group. The purpose of this research is to elicit the participant’s core values and to explore the meanings behind these values. The study will help to determine the core values of most and least importance to the participants as well as similarities and differences between the participant’s values. Methods and Procedures: Eight semi-structured interviews were conducted with PWPD who belonged to a PD voice support group. These interviews elicited core values from the participants, which were ranked in order of importance. The elicited core values were grouped into five broad themes using thematic analysis. Outcomes and Results: The five broad themes that arose from the elicited values were: everyone is in the same boat; helping my voice; social life; meeting a mixture of PWPD and hope for the future. Overall, participants valued the friendships and encouragement in the group with most importance. Values held of least importance by the participants varied between each participant. Conclusions and Implications: The participants valued being part of a PD voice support group for different reasons. The values elicited from the participants demonstrate that the role of the voice support group extends beyond solely addressing the voice difficulty: it also provides support; friendship; a space to meet other PWPD at different stages of the disease and the ability to help future PWPD. This study will hopefully encourage support groups and Speech and Language Therapy services to carefully consider the values of the populations they serve, in order to manage the difficulties PWPD face in a person-centred and effective way.
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