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Abstract
Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context. As part of a secondary analysis, data derived from two qualitative primary studies on FCs' burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement. Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs' experiences: "Connectedness," "Religious Faith," "Transcendence," "Hope," and a fifth overarching aspect which we named "Ongoing integration of spiritual experience." Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs' narratives. In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs' problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.
Highlights
Spirituality remains an increasingly distinct subject of reflection within various disciplines, including palliative care
There is widespread recognition that the spiritual dimension should be incorporated into palliative care (Vilalta et al, 2014; Gijsberts et al, 2019; Best et al, 2020), little is known about how spirituality is experienced by these patients’ informal caregivers
As per the consensus definition (Puchalski et al, 2009, 2014), adopted by the European Association for Palliative Care (EAPC), “Spirituality is the dynamic dimension of human life that relates to the way persons experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred” (Best et al, 2020)
Summary
Spirituality remains an increasingly distinct subject of reflection within various disciplines, including palliative care. There is widespread recognition that the spiritual dimension should be incorporated into palliative care (Vilalta et al, 2014; Gijsberts et al, 2019; Best et al, 2020), little is known about how spirituality is experienced by these patients’ informal caregivers. As per the consensus definition (Puchalski et al, 2009, 2014), adopted by the European Association for Palliative Care (EAPC), “Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred” (Best et al, 2020)
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