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Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents
  1. Dania Schütze1,
  2. Fabian Engler1,
  3. Cornelia Ploeger1,
  4. Lisa-R Ulrich1,2,
  5. Michaela Hach3,
  6. Hannah Seipp4,
  7. Katrin Kuss4,
  8. Stefan Bösner4,
  9. Ferdinand M Gerlach1,
  10. Marjan van den Akker1,5,
  11. Antje Erler1 and
  12. Jennifer Engler1
  1. 1Institute of General Practice, Goethe University Frankfurt, Frankfurt am Main, Germany
  2. 2German Federal Rehabilitation Council (BAR e. V.), Frankfurt am Main, Germany
  3. 3Professional Association of Specialized Outpatient Palliative Care in Hesse, Wiesbaden, Germany
  4. 4Department of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Germany
  5. 5Department of Family Medicine, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands
  1. Correspondence to Dania Schütze, Institute of General Practice, Goethe University Frankfurt, Frankfurt am Main 60590, Germany; schuetze{at}allgemeinmedizin.uni-frankfurt.de

Abstract

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.

  • home care
  • paediatrics
  • communication
  • supportive care
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Footnotes

  • Contributors DS and L-RU collected the data, which DS, JE and FE analysed and interpreted. DS and JE were the principal authors and responsible for the draft of the manuscript, which was critically revised by all authors. L-RU, MH, SB, FMG and AE contributed towards developing the overall ELSAH Study design and applied for funding. DS, MvdA, JE, HS, KK and CP made substantial contributions to the conception of the manuscript. All authors read and approved the final manuscript.

  • Funding The study is being funded by the innovation fund ('Innovationsfonds') of the Federal Joint Committee in Germany (grant number: 01VSF16006).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The ethics committee of the Johann Wolfgang Goethe University in Frankfurt/Main approved the study on 10 April 2017 (ID: 142/17).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement 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.

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