Hein-etal2018
| Hein-etal2018 | |
|---|---|
| BibType | ARTICLE |
| Key | Hein-etal2018 |
| Author(s) | Kerstin Hein, Anna Monz, Marion Daxer, Nari Heitkamp, Kathrin Knochel, Ralf Jox, Gian Domenico Borasio, Monika Führer |
| Title | Challenges in pediatric advance care discussions between health care professionals and parents of children with a life-limiting condition: a qualitative pilot study |
| Editor(s) | |
| Tag(s) | EMCA, Pediatrics, Advanced care planning, Germany |
| Publisher | |
| Year | 2018 |
| Language | English |
| City | |
| Month | |
| Journal | Journal of Pain and Symptom Management |
| Volume | 56 |
| Number | 6 |
| Pages | e131 |
| URL | Link |
| DOI | 10.1016/j.jpainsymman.2018.10.419 |
| ISBN | |
| Organization | |
| Institution | |
| School | |
| Type | |
| Edition | |
| Series | |
| Howpublished | |
| Book title | |
| Chapter | |
Abstract
Objectives Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed to (1) identify challenges during pediatric advance care discussions and (2) explore the perception of participants about pACP with the final goal of (3) developing a pACP conversation guideline.
Methods We used an ethnographic approach including (1) participant observation of the initial session of pediatric advance care discussions and (2) semi-structured interviews with all participants. Data were analyzed through conversation analysis (Depperman 2008) and the coding method of Saldaña (2016). Triangulation of data sets allowed the reconstruction of cases considering different viewpoints.
Results We observed 15 discussions and conducted 31 interviews with 15 professionals and 20 parents of 11 children cared for by three different palliative care teams in Germany. Reconstruction of cases revealed the following challenges: (1) opening and guiding discussions in a way that provides structure and maintains parental cooperation, (2) talking about death and dying, (3) dealing with parental expertise, and (4) coping with different perspectives on pACP. Different perspectives were observed between parents and professionals, within the couple, and within the professional team. Differences encompassed dissimilar aims associated with pACP, different ideas about the respective roles in decision making, diverging interpretations about the main focus of discussions, and differences in moral judgments.
Conclusions Providing a clear structure, establishing collaborative communication, and developing a common ground of discussion are essential elements at the beginning of pACP. They constitute the fundament of subsequent shared decision-making.
Notes
