Unveiling a fragile spirituality: Experiences of connectedness in pediatric palliative care

Introduction 23
what can happen in an end-of-life setting in the PICU is an advantage in establishing
contact with parents in an interview, but also construes the risk of bias; expectations
of parents’ experiences might influence the interviewing. This awareness was reason to
select parents randomly and to conduct the interviews as openly as possible.
THESIS OUTLINE
Chapter 2 reports the results of the pilot study investigating spiritual experiences of
bereaved parents in the context of oncology. We discuss the role of spiritual experiences
in the narrative construction of meaning after the loss of the child. The chapter includes
the description of a variety of examples of parents’ experiences of connectedness to
their deceased child, to which other chapters also refer.
In chapter 3 we focus on the dynamics of the PICU environment, addressing the significance
of parents’ connectedness to their child’s physical body in end-of-life care.
Chapter 4 describes both the existential distress of parents facing the imminent death
of their child and the meaning of experiencing genuine personal contact with health
care professionals.
In chapter 5, a special type of spirituality, which we named ‘fragile spirituality’, is described
in the perspective it offers to bereaved parents. The presence of spiritual notions
in the context of pediatric health care is underlined.
Chapter 6 explores theological reflections on the essence of this fragile spirituality as an
expression of lived spirituality.
Chapter 7, the General Discussion, explains the connection between the different findings
of the research project in the way they convey features or expressions of fragile
spirituality in the context of pediatric health care and theology. Recommendations are
presented for further research into existential and spiritual issues concerning patients,
parents and health care professionals.