Objective: The purpose of this study was to identify perceived facilitators and barriers for better communication with family member among people with Parkinson’s disease (PD).

Background: Living with PD means they face different situations every day. Their loss of body control threats to independent lifestyle. Therefore, daily routine care involves the family member who is the closest caregiver for the everyday management of the disease. Active communication between patients and their family will impact on treatment outcome, functional independence, and quality of life.

Methods: Data were collected via three rounds of focus group interviews with 22 people with PD. Major questions were follows: “What was the change in your family dynamic since you were diagnosed as PD?”, “What is the perceived facilitators and barriers in communicating with your family member?”, “What might be done to improve communication for you and your family?” In order to conduct focus group interview, structured questions were used and then, field notes, audio recording and video recording were conducted. Debriefing notes were referred for analysis the data.

Results: Three main themes and six sub-themes were revealed. The first theme ‘empathy and emotional support’ included one sub-themes: lack of support and empathy for PD. The second theme ‘PD-related knowledge sharing’ included three sub-theme: insufficient knowledge on PD-related issues, mood swing in people with PD and lack of knowledge about PD medication such as side effect. The third theme ‘interpersonal role change’ included two sub-themes: position in family-shifting role and ambivalent feeling to family member. These findings showed that PD diagnosis is a highly critical event to patients and the family member.

Conclusions: People with PD need to share the experience of PD with the family members. Through enhancing communication between patients with PD and their family, multidisciplinary healthcare professionals can assist family members to support people with PD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/perceived-facilitators-and-barriers-in-communicating-with-family-member-among-people-with-parkinsons-disease-a-focus-group-study/