Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents
Title
Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents
Creator
Schütze D; Engler F; Ploeger C; Ulrich Lisa-R; Hach M; Seipp H; Kuss K; Bösner S; Gerlach Ferdinand M; van den Akker M; Erler A; Engler J
Identifier
Publisher
BMJ Supportive & Palliative Care
Date
2022
Subject
Care Team; Outpatient; Parent Collaboration; Pediatric
Description
Objective In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents’ experiences and their demands of collaboration with SOPPC teams.Methods We conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data.Results Parents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents’ need for specialised professional assistance and their simultaneous empowerment by SOPPC teams.Conclusions Parents’ perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.No data are available. Our data protection protocol guarantees patients and providers that data will be analysed and used only within the ELSAH project and by researchers of the study team. Therefore, we cannot provide any data.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Citation List Month
January List 2023
URL Address
Collection
Citation
Schütze D; Engler F; Ploeger C; Ulrich Lisa-R; Hach M; Seipp H; Kuss K; Bösner S; Gerlach Ferdinand M; van den Akker M; Erler A; Engler J, “Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents,” Pediatric Palliative Care Library, accessed December 3, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18572.