1. Steering Committee of the EAPC Task Force on Palliative Care . IMPaCCT: standards for paediatric palliative care in Europe. Eur J Palliat Care 2007; 14: 109–114.
Google Scholar2. Groh, G, Feddersen, B, Führer, M, et al. Specialized home palliative care for adults and children: differences and similarities. J Palliat Med 2014; 17: 803–810.
Google Scholar | Crossref | Medline3. Bergsträsser, E . [Paediatric palliative care: what is different in children compared to adults?]. Ther Umsch 2018; 75: 101–104.
Google Scholar | Medline4. Nolte-Buchholtz, S, Zernikow, B, Wager, J. Pediatric patients receiving specialized palliative home care according to German law: a prospective multicenter cohort study. Children 2018; 5: 66.
Google Scholar | Crossref5. Bösch, A, Wager, J, Zernikow, B, et al. Life-Limiting conditions at a University pediatric tertiary care center: a cross-sectional study. J Palliat Med 2018; 21: 169–176.
Google Scholar | Crossref | Medline6. Fraser, LK, Parslow, R. Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study. Arch Dis Child 2018; 103: 540–547.
Google Scholar | Crossref | Medline7. Zernikow, B, Hasan, C. Paediatric palliative care in children and adolescents. Palliativmedizin 2013; 14: 157–172.
Google Scholar8. Zernikow, B, Gertz, B, Hasan, C. Paediatric palliative care (PPC) – a particular challenge: tasks, aims and specifics. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2017; 60: 76–81.
Google Scholar | Crossref | Medline9. National Institute for Health and Care Excellence . End of life care for infants, children and young people with life-limiting conditions: planning and management. NICE guideline NG61. London: National Institute for Health and Care Excellence, 2016.
Google Scholar10. National Institute for Health and Care Excellence . End of life care for infants, children and young people: quality standard (QS160). London: National Institute for Health and Care Excellence, 2017.
Google Scholar11. Koch, KD, Jones, BL. Supporting parent caregivers of children with life-limiting illness. Children 2018; 5: 85.
Google Scholar | Crossref12. Lotz, JD, Daxer, M, Jox, RJ, et al. “Hope for the best, prepare for the worst”: a qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliat Med 2017; 31: 764–771.
Google Scholar | SAGE Journals | ISI13. Klarare, A, Rasmussen, BH, Fossum, B, et al. Experiences of security and continuity of care: patients’ and families’ narratives about the work of specialized palliative home care teams. Palliat Support Care 2017; 15: 181–189.
Google Scholar | Crossref | Medline14. Schütze, D, Engler, F, Ploeger, C, et al. Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents. BMJ Support Palliat Care. Epub ahead of print 5 January 2021. DOI: 10.1136/bmjspcare-2020-002576
Google Scholar | Crossref15. Davies, B, Gudmundsdottir, M, Worden, B, et al. “Living in the dragon’s shadow” fathers’ experiences of a child’s life-limiting illness. Death Stud 2004; 28: 111–135.
Google Scholar | Crossref | Medline16. Heller, KS, Solomon, MZ. Continuity of care and caring: what matters to parents of children with life-threatening conditions. J Pediatr Nurs 2005; 20: 335–346.
Google Scholar | Crossref | Medline17. Ulrich, L-R, Gruber, D, Hach, M, et al. Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) – work package II: palliative care for pediatric patients. BMC Palliat Care 2018; 17: 14.
Google Scholar | Crossref | Medline18. Breidenstein, G, Hirschauer, S, Kalthoff, H. Ethnografie dDie pPraxis der fFeldforschung [eEhtnography: the practice of fieldwork]. Konstanz: UVK/UTB, 2013.
Google Scholar19. Rosenthal, G . Interpretative sozialforschung: eine einführung. 5., aktualisierte und ergänzte auflage. Weinheim, Basel: Beltz Juventa, 2015.
Google Scholar20. Gemeinsamer Bundesausschuss . Richtlinie des Gemeinsamen Bundesausschusses zur Verordnung von spezialisierter ambulanter Palliativversorgung: SAPV-RL [Federal Joint Committee: Rule of procedure of the Federal Joint Committee on the provision of specialized outpatient palliative care in Germany], Bundesanzeiger, 2010.
Google Scholar21. Braun, V, Clarke, V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101.
Google Scholar | Crossref22. Ribbers, S, Wager, J, Hartenstein-Pinter, A, et al. Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: a qualitative interview study. Palliat Med 2020; 34(3): 309–318.
Google Scholar | SAGE Journals | ISI23. Ashcraft, LE, Asato, M, Houtrow, AJ, et al. Parent empowerment in pediatric healthcare settings: a systematic review of observational studies. Patient 2019; 12: 199–212.
Google Scholar | Crossref | Medline24. Jones, BL, Contro, N, Koch, KD. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring. Pediatrics 2014; 133(Suppl 1): S8–S15.
Google Scholar | Crossref | Medline | ISI25. Engler, J, Gruber, D, Engler, F, et al. Parents’ perspectives on hospital care for children and adolescents with life-limiting conditions: a grounded theory analysis of narrative interviews. J Palliat Med 2020; 23: 466–474.
Google Scholar | Crossref | Medline26. Melin-Johansson, C, Axelsson, I, Jonsson Grundberg, M, et al. When a child dies: parents’ experiences of palliative care-an integrative literature review. J Pediatr Nurs 2014; 29: 660–669.
Google Scholar | Crossref | Medline | ISI27. Klarare, A, Rasmussen, BH, Fossum, B, et al. Actions helping expressed or anticipated needs: patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams. Eur J Cancer Care 2018; 27: e12948.
Google Scholar | Crossref | Medline28. Arias-Casais, N, Garralda, E, Rhee, JY, et al. EAPC atlas of palliative care in Europe 2019. Vilvoorde: EAPC Press, 2019.
Google Scholar29. Radruch, L, Payne, S. White paper on standards and norms for hospice and palliative care in Europe: part 1: recommendations from the European Association for Palliative Care. Eur J Palliat Care 2009; 16: 278–289.
Google Scholar30. Craig, F, Abu-Saad Huijer, H, Benini, F, et al. IMPaCCT: standards pädiatrischer palliativversorgung in Europa. Schmerz 2008; 22: 401–408.
Google Scholar | Crossref | Medline31. Rapoport, A, Obwanga, C, Sirianni, G, et al. Not just little adults: palliative care physician attitudes toward pediatric patients. J Palliat Med 2013; 16: 675–679.
Google Scholar | Crossref | Medline