Enhancing Caregiver Communication: Development of a Conceptual Framework for Navigating Difficult Conversations in Parkinson's Disease Care

Research Objectives: To develop an innovative conceptual framework designed to deconstruct and categorize difficult conversations in Parkinson's disease care.

Design: This was a qualitative study framed using the paradigm of constructivism and methodology of American phenomenology. Participants engaged in two rounds of individual semi-structured, in-depth interviews.

Setting: Interviews were conducted online using the videoconferencing software Zoom with participants from the general community of a mid-sized Canadian city.

Participants: Seven informal care partners (4 females, 3 males) with lived experience providing care to individuals with Parkinson's disease, were recruited from a pre-established care partner database using a maximum variation sampling approach based on sex and geographic location.

Interventions: Interviews were undertaken to gain a nuanced understanding of participants’ experiences with navigating difficult conversations. Interviews were conducted by a single interviewer with an educational background in Health Sciences and were digitally recorded and transcribed verbatim using NVivo transcription.

Main Outcome Measures: Inductive line by line coding was completed by two members of the research team with resulting codes and themes refined through ongoing team meetings.

Results: Participants described having to navigate four distinct categories of difficult conversations: "Important Conversations," which hold deep personal significance; "Frank Conversations," marked by direct candid communication; "Difficult Disclosures," involving sensitive revelations; and "Advocacy," where discussions centre around advocating for the care recipient's needs. A biaxial conceptual framework was developed to organize these conversations into three primary dimensions that range on continuums from monological (one-sided) to dialogical (both parties contributing), from non-action-oriented (not expected to lead to change) to action-oriented (a hoped-for tangible outcome exists), and from high emotional valence (very meaningful to either or both parties) to low emotional valence (less meaningful).

Conclusions: This framework has practical implications for healthcare professionals, educators, and support groups aiming to improve communication training and support for care partners. While its development is an important initial step, further research is essential to validate and refine its applicability across diverse care partnerships and cultural contexts before widespread implementation is advised.

Author(s) Disclosures: The authors have no conflicts to declare