“Understanding Why She Had to Leave Me”: The Role of Faith, Religion, and Spirituality in Narratives of Parents Grieving the Loss of a Child to Cancer
Alexandra Superdock, MD, St. Jude Children's Research Hospital, Memphis, TN; Yenny Yang, University of Tennessee Health Sciences Center, Memphis, TN;
Mariela Trejo, University of Maryland School of Medicine, Baltimore, MD; Lindsay Blazin, MD, MPH, Riley Children's Health, Indianapolis, IN, Indiana University Health, Indianapolis, IN; Justin Baker, MD, Stanford Medicine, Palo Alto, CA; Holly Spraker-Perlman, MD, MS, Primary Children's Hospital, Salt Lake City, UT, University of Utah, Salt Lake City, UT; and Erica Kaye, MD, MPH, St. Jude Children's Research Hospital, Memphis, TN
Background
Religion and spirituality play distinct, integral roles in how many people experience illness, death, and grief. The role of religion and spirituality in the experience of parents grieving the loss of a child to cancer remains underexplored. In this study, we aim to describe how bereaved parents talk about religion & spirituality when reflecting on their experiences.
Methods
This qualitative descriptive study is part of a larger mixed methods study on grief and bereavement among parents of children who died of cancer. Thirty participants whose children died of cancer one to three years prior to participation completed a one-on-one semi-structured telephone interview about their experience with bereavement. Interviews were recorded and transcribed verbatim. Interview transcripts underwent qualitative thematic analysis, including coding, codebook development, memoing, and thematic synthesis. Content pertaining to religion, faith, God, and spirituality were included under the code ‘Faith’ and subsequently underwent further in-depth content analysis to identify major and minor themes.
Results
Of the 30 parent interviews analyzed, 28 interviews contained content coded as pertaining to ‘Faith.’ Three major narrative themes arose regarding parents’ bereavement experiences: 1) life after death, 2) divine control (subthemes: God is/is not in control; making sense of suffering and death), and 3) evolution of spirituality and religious life after loss. There was significant diversity within each theme, with some parents expressing diametrically opposite views on what they found supportive versus challenging. Within the context of these three themes, participants discussed specific practices, including prayer, journaling, and church attendance. A fourth minor theme arose regarding intersections of faith and health care. Some parents described how meaningful it was when they were able to connect with their nurse or physician over their faith, regardless of whether the provider shared their specific religion. Parents described how relationships with other patient families could be at times a source of support and at other times a source of frustration. Feelings of frustration, dismissal, and judgement arose when parents interacted with other patient families who placed a different emphasis on faith, hope, and prayer.
Discussion
Many bereaved parents interpret and express their journey in terms of spiritual beliefs, questions, and imagery. This phenomenon is not exclusive to those who identify as religious, and parents’ spiritual experiences may or may not align with their established religious beliefs and practices. The diverse, interdisciplinary health care community—including healthcare clinicians, chaplains, volunteers, and other patient families—plays a variety of significant roles in parents’ spiritual narratives throughout their child’s illness. After losing a child, most parents in this study described navigating their spiritual challenges largely in isolation from community, with few identifying specific organized support systems. The desire for a sense of purpose (whether determined by God or by man) was pervasive. For many parents, losing their child represented a time where beliefs about ‘purpose’ (the meaning of the child’s life, the reason for suffering, the role of the parent, etc.) were questioned or reframed. As parents navigate the spiritual process of redefining meaning in the face of loss, the potential role for integrated efforts between faith communities, medical communities, and peer networks warrants further exploration.
Conclusion
Understanding the most common religious and spiritual themes within bereavement narratives can help frame supportive practices and interventions. Because spiritual needs during bereavement are highly diverse and personal, there will not be a one-size-fits-all intervention. Nevertheless, the absence of support systems represents a gap in bereavement care and more work is needed to identify specific needs and possible support interventions.
Religion and spirituality play distinct, integral roles in how many people experience illness, death, and grief. The role of religion and spirituality in the experience of parents grieving the loss of a child to cancer remains underexplored. In this study, we aim to describe how bereaved parents talk about religion & spirituality when reflecting on their experiences.
Methods
This qualitative descriptive study is part of a larger mixed methods study on grief and bereavement among parents of children who died of cancer. Thirty participants whose children died of cancer one to three years prior to participation completed a one-on-one semi-structured telephone interview about their experience with bereavement. Interviews were recorded and transcribed verbatim. Interview transcripts underwent qualitative thematic analysis, including coding, codebook development, memoing, and thematic synthesis. Content pertaining to religion, faith, God, and spirituality were included under the code ‘Faith’ and subsequently underwent further in-depth content analysis to identify major and minor themes.
Results
Of the 30 parent interviews analyzed, 28 interviews contained content coded as pertaining to ‘Faith.’ Three major narrative themes arose regarding parents’ bereavement experiences: 1) life after death, 2) divine control (subthemes: God is/is not in control; making sense of suffering and death), and 3) evolution of spirituality and religious life after loss. There was significant diversity within each theme, with some parents expressing diametrically opposite views on what they found supportive versus challenging. Within the context of these three themes, participants discussed specific practices, including prayer, journaling, and church attendance. A fourth minor theme arose regarding intersections of faith and health care. Some parents described how meaningful it was when they were able to connect with their nurse or physician over their faith, regardless of whether the provider shared their specific religion. Parents described how relationships with other patient families could be at times a source of support and at other times a source of frustration. Feelings of frustration, dismissal, and judgement arose when parents interacted with other patient families who placed a different emphasis on faith, hope, and prayer.
Discussion
Many bereaved parents interpret and express their journey in terms of spiritual beliefs, questions, and imagery. This phenomenon is not exclusive to those who identify as religious, and parents’ spiritual experiences may or may not align with their established religious beliefs and practices. The diverse, interdisciplinary health care community—including healthcare clinicians, chaplains, volunteers, and other patient families—plays a variety of significant roles in parents’ spiritual narratives throughout their child’s illness. After losing a child, most parents in this study described navigating their spiritual challenges largely in isolation from community, with few identifying specific organized support systems. The desire for a sense of purpose (whether determined by God or by man) was pervasive. For many parents, losing their child represented a time where beliefs about ‘purpose’ (the meaning of the child’s life, the reason for suffering, the role of the parent, etc.) were questioned or reframed. As parents navigate the spiritual process of redefining meaning in the face of loss, the potential role for integrated efforts between faith communities, medical communities, and peer networks warrants further exploration.
Conclusion
Understanding the most common religious and spiritual themes within bereavement narratives can help frame supportive practices and interventions. Because spiritual needs during bereavement are highly diverse and personal, there will not be a one-size-fits-all intervention. Nevertheless, the absence of support systems represents a gap in bereavement care and more work is needed to identify specific needs and possible support interventions.