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

In pediatric palliative care parents are existentially affected in the end of life of their son or daughter. In their anguish and loneliness they have strong need for connectedness; first of all with their child but also with the health care professionals involved. Many parents connect not only physically to their child but also in expressions of a certain spirituality. This spirituality can be observed in special events that have meaning to parents; also in the mourning process. They speak of events that are considered as not coincidental; for example in experiences of the senses. A momentary experience of a meaningful event, connects them to their deceased child in a reality transcending way. This type of spirituality is fragile as it is not necessarily part of a meaning-system or worldview, nor is their a community to share these experiences. In vulnerable situations a transcending motion can be part of people's interpretive reality, indicating the presence of a fragile spirituality