Pediatric advance care discussions between health care professionals and parents of children with a life-limiting disease: A qualitative interview study

Pediatric advance care discussions between health care professionals and parents of children with a life-limiting disease: A qualitative interview study

Daxer M; Monz A; Heitkamp N; Hein K; Knochel K; Jox R; Borasio GD; Fuhrer M

Palliative Medicine

2018

semi structured interview; child; clinical article; conference abstract; conversation; data analysis; emotion; female; Germany; health care personnel; human; male; medical information; palliative therapy; perception; writing

Background: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element to successful pediatric advance care planning (pACP). Yet, they are considered as challenging by all participants. Research objective: We aimed to investigate the perception of ACDs from the perspective of both HCPs and parents and to gain more details on obstacles, barriers and helpful communication strategies during the course of ACDs. Methods: Design: We used an ethnographic approach including (1) participant observation of ACDs between HCPs and parents, and (2) semi-structured interviews with all participants after the discussion. Conversation analysis and descriptive coding were used for data analysis. Setting/participants: We observed 15 discussions and conducted 31 interviews with 15 HCPs and 20 parents of eleven children cared for by three different palliative care teams in southern Germany. Results: HCPs evaluated the quality of ACD based on their perception of the emotional state and capacity of self-reflection of parents, and on the degree of correspondence between the HCP's and the parents' perspectives. In contrast, parents' evaluation focused on (1) perceived support in deciding upon medical treatment for their child, (2) the HCPs understanding of their family situation and (3) the structure provided by HCPs throughout the conversation. They appreciated when HCPs did not have time restrictions and stressed the importance of confidence and sympathy towards their discussion partners. Knowing each other made the discussion easier for parents and HCPs. Both sides supported the idea of two HCPs from different professions participating in ACD, even though parents preferred that physicians lead the conversation in order to provide them with the necessary medical information. Conclusions: HCPs and parents perceive ACD differently. Parents wish for structure and clear instructions that help them to prepare and decide for future crisis situations. Therefore, HCPs should adapt the structure of their ACDs to the parents' needs. In addition, our findings suggest that ACD should be conducted by HCPs familiar to family and child.

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August 2018 List