Unveiling a fragile spirituality: Experiences of connectedness in pediatric palliative care
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ABSTRACT<br />
Spiritual <strong>care</strong> is recognized as a relevant dimension <strong>of</strong> health <strong>care</strong>. In the context <strong>of</strong><br />
<strong>pediatric</strong> <strong>palliative</strong> end-<strong>of</strong>-life <strong>care</strong>, <strong>spirituality</strong> entails more than adher<strong>in</strong>g to a spiritual<br />
worldview or religion. Interviews with parents whose critically ill child died <strong>in</strong> the <strong>pediatric</strong><br />
<strong>in</strong>tensive <strong>care</strong> unit revealed features <strong>of</strong> a <strong>spirituality</strong> that is fragmentary and full <strong>of</strong><br />
contradictions. This type <strong>of</strong> <strong>spirituality</strong>, which we refer to as <strong>fragile</strong>, speaks <strong>of</strong> parents’<br />
<strong>connectedness</strong> with the deceased child and the hope <strong>of</strong> some k<strong>in</strong>d <strong>of</strong> reunit<strong>in</strong>g after<br />
one’s own death. Acknowledg<strong>in</strong>g that fragments <strong>of</strong> <strong>spirituality</strong> can be part <strong>of</strong> parents’<br />
experiences <strong>in</strong> their child’s end-<strong>of</strong>-life stage can be a mean<strong>in</strong>gful contribution to compassionate<br />
<strong>care</strong>.
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