Experiences of parents of palliative care for their child with cancer.

The researchfield of pediatric palliative care is in its infancy. The - mostly
qualitative - studies that have been done show that there are certain aspects
of care that are of great importance to bereaved parents in the palliative
phase. Providing good care is of great influence for parents who lose there
child to cancer. Good communication, involvement in the care by the health care
professionals and continuity of care are all important. Besides good care
bereaved parents often mention spirituality as an important aspect in the last
phase of their child's life. In this study, spirituality is subdivided into
'religion', 'giving meaning to life and the death of the child' and 'hope'.

The aim of this study is to get more insight into the problems that can arise
in the palliative care for children with cancer, who are treated at Erasmus
MC-Sophia. A second aim is to get more insight into the level of spirituality
of bereaved parents at the end of their childs life and the role that health
care provides can potentially play in this. These factors will be adressed by
asking 100 bereaved parents to complete a questionnaire on this topic.

The aim of this study is to get more insight into the problems that can arise
in the palliative care for children with cancer, who are treated at Erasmus
MC-Sophia. A second aim is to get more insight into the level of spirituality
of bereaved parents at the end of their childs life. The effect of these
aspects on grief and depressive symptoms 3 to 9 years after the loss of a
child is our primary interest. Our secundair objective ist he investigation of
experiences (both positive and negative) of parents and there effect on their
psychological functioning at the moment.

The study design is observational. Parents will complete 3 questionnaires
(experiences, grief, depression) who will be sent to them. Parents complete the
questionairre separately from each other.

The study population, bereaved parents, may find some of the questions
upsetting. This group consists of potentially vulnerable people, who are in a
emotional situation.

Despite the possible emotional burden of this study it is of great importance
to get more insight in the quality of care from the Erasmus MC-Sophia. This
study has the potential of helping other parents who in the future will be in
the same situation. Earlier studies show that bereaved parents perceive the
participation in this kind of research to be valuable. (Dyregrov, K. (2004).
Bereaved parents' experience of research participation. Social science &
medicine 58, 391-400; Kreicbergs, U., Valdimarsdottir, U., Steineck, G., &
Henter, J.I. (2004). A population-based nationwide study of parents'
perceptions of a questionaire on their child's death due to cancer. The Lancet
364, 787-789.)