Challenges of relatives in expressing their perspectives in triadic palliative care conversations: A qualitative study among relatives of patients with chronic obstructive pulmonary disease or chronic heart failure.

OBJECTIVE: Develop an understanding of the challenges experienced by relatives of patients with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF) in exploring and expressing their perspectives in triadic (provider-patient-relative) palliative care conversations (TPC conversations). METHOD: Qualitative, explorative study using purposive sampling to create diversity in demographic variables of relatives. Semi-structured interviews were performed using a topic list. All interviews were audio-recorded, transcribed verbatim, and thematically analysed. RESULTS: Ten relatives participated in this study. In TPC conversations they find it challenging to express 1) what living with the disease is like for their loved one, 2) what has changed for themselves, 3) what is on their mind, and 4) what they would like to get from or need in TPC conversations. Relatives experience these challenges when they feel unseen by healthcare professionals and/or when they experience or perceive their participation in these conversations is not desired or appropriate. CONCLUSION: Relatives find it challenging to express their own perspectives as well as those of their loved one.