Voices of care: navigating difficult conversations among caregivers and individuals with Parkinson's disease

This study explores the experiences of informal caregivers in navigating difficult conversations with individuals living with Parkinson's disease, and other key figures such as family members and health professionals.

Utilizing a post-positive paradigm and inductive approach, we conducted semi-structured interviews with seven caregivers to gain in-depth insights into their experiences.

Findings reveal that Parkinson's disease introduces layers of complexity to navigating difficult conversations, which evolve over the disease's progression. Conversations were categorized across three dimensions: degree of interaction, response orientation, and emotional valence, resulting in a biaxial framework of difficult disclosures, frank conversations, relational conversations, and planful conversations. Key mediating factors shaping these conversations included relationship strength, individual skills, personality traits, faith, and preparation efforts.

Our findings offer valuable insights for clinicians, highlighting the importance of supporting caregivers in these difficult conversations. By understanding the dimensions and mediating factors involved, clinicians can provide tailored guidance and resources, fostering more effective communication strategies. This knowledge can enhance clinical practice by promoting a collaborative approach where both caregivers and individuals with Parkinson's disease feel supported and understood throughout their interactions.