2.1. Participants

Data were prospectively collected over a two-year period (January 2017–December 2018) on an inpatient pediatric palliative care unit. The pediatric palliative care unit is affiliated with a tertiary care children’s hospital and provides highly specialized pediatric palliative care for annually approximately N = 170 patients with mainly neurological underlying diseases and their families [24]. Opened in 2010, it was the first pediatric palliative care unit in Europe. A total of eight beds in single-patient rooms and a qualified multiprofessional team (e.g., consisting of physicians, nurses, and various therapists) that pursues a holistic bio-psycho-social-spiritual care approach were available.

Children and adolescents who met the following criteria were included: (a) LLC, (b) SNI, (c) age between 1–25 years, (d) inpatient stay of at least 7 days.

Families in acute crisis, children/adolescents whose life expectancy would most probably be less than four weeks, and patients whose parents refused to participate in the study were excluded. Since the data collected were intended to answer further questions beyond those of this study, one additional exclusion criterion (insufficient language skills of parents) needed to be defined during the study conduct. Ethical approval was obtained by the Ethics Committee of the Children’s and Adolescents’ Hospital Datteln (approval code: 2017/03/08/BZ1); all families provided informed consent to participate in the study.