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

General Discussion 129
concept in healthcare definitions of spirituality (Nolan, Saltmarsh, & Leget, 2011; Puchalski
et al., 2009), discloses deeper meaning in their reality. Parents’ experiences with the
child and caregivers are indications of the fragile spirituality we refer to, as they change
the feeling of that moment, lifting them out of their loneliness; if only for an instant.
THE IMPORTANCE OF BODILY CONNECTIONS
This connectedness finds its first and fundamental expression in physical contact between
parent and child. The biological attachments between parent and child are decisive
for a psychologically sound development in life (Bowlby, 1973). The stories parents
told in our study, confirmed that they started feeling a mother or father when they held
their new-born to their skin (Flacking et al., 2012). The physical connection to the critically
ill child in the PICU was also important to counterbalance the mental pain of seeing
the child’s body affected by treatment. Sometimes the child was almost unrecognizable
to the parent, which remained a painful memory. Physical connectedness enables parents
to ‘read’ their child’s mind and creates mutual, deep understanding between them.
Parents feel they know when the child is fighting or giving up. Physical signs are tokens
of this deep existential connection. The child opening the eyes shortly before dying is
interpreted as saying goodbye; it is understood as confirmation that the child is ready
to go. Contact is experienced that reaches beyond medical reality, with a deep spiritual
component that carries on after death. In the daily practice of the PICU, awareness of
this deep bond between the patients and their parents could facilitate communication.
Attentiveness to parents’ intuitive concerns of their child’s wellbeing, makes them feel
acknowledged as experts of their child and could give additional information on the
patient’s biomedical condition.
CONTACT WITH HEALTH CARE PROFESSIONALS
In the course of the research process, the existential connectedness between parents and
health care professionals came strongly to the fore. Especially nurses, present for hours
at the bedside and attending to all the child’s needs, witnessed the depth of parental
concerns. Of course, this is not always the case. Parents may be withdrawn or defensive,
a language barrier may stand in the way and not every nurse is sensitive to parental
concerns. Yet in many cases, mutual connectedness is established. This connectedness
mostly consists of moments of contact that may or may not develop into some form of
relationship. Connectedness may concern just a single moment. If a nurse or physician
at the bed of a critically ill child makes contact with the present parent through eye