Pediatric palliative home care: experiece of bereaved parents with a hospital-based liaison team. (submitted)

Purpose: The KITES team of the University Hospital of Leuven is a hospital-based
liaison team that originated from a pediatric hemato-oncology unit and provides,
organises and coordinates palliative home care for terminally ill children, not limited
to cancer patients, and their families. We aimed to evaluate the support delivered by
the KITES-team, as seen by the involved parents.
Method: A retrospective cross-sectional mail survey was conducted among 124
parents of the 62 children who deceased between November 2004 and November 2008
while supported by the KITES-team. Parents were informed about the study aim and
design and were only included when they provided written informed consent to
participate
Results: Sixty-four of the 124 contacted parents consented to participate, of which 47
(73.4%) completed and returned the questionnaire Most parents found that different
professional caregivers were sufficiently involved in the palliative care. Eighty
percent of parents reported that their child died at home, 93.3% that their child died
at the planned place, and 91.1% was satisfied with the actual place of death. All
parents indicated that care was available to them 7 days per week and 24 hours per
day and 80.0% thought the KITES-team was involved on time. The great majority of
parents (respectively 93.1% and 85.7%) perceived quality of care delivered by
home nurses and general practitioners as good or very good. For 89.7% and 87.2%
of parents, the home nurse and the general practitioner usually or always paid
attention to their needs. Ninety-six percent of parents would use the KITES- team
again, and 90.7% were satisfied with the general course of their child's end-of-life
period.
Conclusion: Support as delivered by the KITES-team is related to high levels of
satisfaction amongst bereaved parents, and represents a feasible model for appropriate
pediatric palliative home care.