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

Introduction 17
in the PICU and extend our investigations to include similar features of meaning finding
in the additional mourning process.
COMMON GROUND OF HEALTH CARE, PSYCHOLOGY
AND PRACTICAL THEOLOGY
Interest in paramedical fields of research has increased since the World Health Organization
recognized psychological, social and even spiritual insights as vital dimensions of
palliative care (World Health Organization). The relevance of different dimensions of
health care has also been brought forward by Machteld Huber and colleagues. Health is
more than physical wellbeing; it includes dimensions such as social and mental health,
but also dimensions of meaning and quality of life (Huber et al., 2011).
The fact that this research project focused on the lived practice of parents whose child
died in the PICU, implies that we deal with medical, psychological and spiritual (theological)
issues. Although these three scientific fields differ in content, perspective and
methods, they are all relevant in the exploration of meaning in end-of-life situations.
Existential impact of treatment
In end-of-life care in the PICU the parent of a critically ill child has the same existential
concerns as those encountered in other palliative situations: fear, distress and feelings
of hopelessness and meaninglessness, especially when looking finitude and death in
the face (Bruce, Schreiber, Petrovskaya, & Boston, 2011; Kissane, 2012). Feeling lonely
is one of the consequences of caring for a sick son or daughter (Sand & Strang, 2006).
Existential questions are being raised: ‘Why is this happening to me, to us, to my child?’.
Personal identities are shaken. Parents struggle with their parenting role in the face of
the imminent death of their own flesh and blood (McGraw et al., 2012).
Looking for meaning
Psychological research has made clear that meaning making is important, in the confrontation
with the irreversibility of death (Keesee, Currier, & Neimeyer, 2008; Neimeyer,
2002). Meaning making is connected with the ability to make sense of events, of finding
coherence and on the other hand significance in what happens (Janoff - Bulman &
Frantz, 1997). This focus on meaning is often connected with the cognitive effort to accommodate
the experiences to an overall meaning system. Chrystal Park differentiates
between situational and global meaning-making efforts of the mourner. When loss and
pain are incongruent with upholding a meaningful worldview, the mourner is thought