Spirituality, Spiritual Distress and Experiences of Joy, Meaning and Growth Among Parkinson’s Disease Caregivers in the United States

Caregiving challenges of Parkinson’s disease can result in loss of faith, meaning, and spiritual distress. The purpose of this study is to describe Parkinson’s disease caregivers’ perceptions and experiences related to spiritual distress, sources of spiritual and religious support, acts, and experiences of growth, and finding meaning and joy in the midst of spiritual distress. We conducted semi-structured interviews with caregivers of persons with Parkinson’s disease (n = 16) and identified five themes: (a) Bearing witness to suffering underlies spiritual distress; (b) Prayers are pleas for “soul help”; (c) Spiritual guidance and support are important; (d) Faith and community are sources of spiritual support; and (e) Joy, meaning, and growth help to transcend spiritual distress. Interventions that target sources of spiritual distress and joy are needed.