The Parted Sea: Bereaved Parents Reflecting on Hope during Hospice through Photovoice
Allie Superdock MD, Joanna Luttrell MA, CCLS, CPMT, and Erica Kaye MD, MPH, St. Jude Children's Research Hospital, Memphis, TN; Veronica Colmenares BA, University of Louisville School of Medicine, Louisville, KY; and Meaghann Weaver MD, MPH, U.S. Department of Veteran's Affairs, Washington, D.C.,University of Nebraska Medical Center, Omaha, NE
Background
Parents of children with cancer identify hope as a factor that influences coping, communication, and decision-making. The meaning, nature, and evolution of parental hope during hospice and bereavement remains underexplored. Photovoice is a participatory research method that uses participants’ photographs as a springboard for discussion about complex topics. Photovoice is an ideal but underutilized method for exploring lived experiences related to hope and hospice.
Methods
This qualitative photo-elicitation interview study aimed to explore cancer bereaved parents’ reflections on hope during hospice. Eligible parents were >18 years old, English- or Spanish-speaking, and the parent of a child who was treated at the study institution, received hospice care, and died 6-24 months prior to enrollment. Participating parents were invited to select 1-5 photos that depicted their experience or perception of hope when their child was on hospice and then use the photographs as a springboard for discussion in a one-on-one interview. Parents received standardized guidelines for how to select photos and had 1-3 weeks to review and choose photographs before engaging in the semi-structured interview. During the interview, participants were encouraged to share their photos and reflections, describe factors that supported and/or challenged their hope, and suggest ideas for how their experience could inform bereavement care and medical practice. Transcripts underwent reflexive thematic analysis, including iterative cycles of memo-writing, coding, and theme construction, to generate salient themes. Initial inductive analysis revealed notable depth and breadth of parents’ reflections on how their religious or spiritual worldview influenced their experience of hope, engendering further rounds of reflexive thematic analysis to identify sub-themes pertaining to religion and spirituality.
Results
20 bereaved parents engaged in interviews and provided photographs to support discussion. Five themes were generated from initial thematic analysis: 1) hope changes focus, 2) hope radiates from the child, 3) awareness of loss casts a shadow, 4) beliefs, spirituality, and worldview are a lens through which hope is seen, and 5) supportive clinicians see and honor the family’s hope. All parents described how their spirituality, religious beliefs, culture, and context colored their perspective and reflections on hope. Perspectives included Protestant Christian, Catholic Christian, Hindu, and non-religious. For most parents, their beliefs were described as an unchanging pillar throughout their child’s treatment, end-of-life, and their subsequent bereavement. Parents illustrated how their expectations about miracles, scripture, and prayer shifted focus over time, often allowing parents to find sanctity and meaning amid grief. Parents acknowledged how their child’s death impacted their faith, beliefs, and practices. Parents harnessed a variety of resources to seek or maintain coherence between their lived experience of hope and their spiritual beliefs, including community, spiritual care providers, prayer, ritual, scripture, and time in nature. While support and guidance from others was usually considered helpful, parents sometimes felt external pressure to be hopeful or to refocus their hope in a direction they were not ready for.
Discussion
Photovoice interviews provided a platform for deep, generative reflection on hope among bereaved parents. Using the themes generated during analysis, we propose 4 dimensions for the lived experience of evolving hope: focus, light, darkness, and lens. These dimensions may be useful for clinicians seeking to assess and support hope and may provide a basis for hope-centered interventions in future work. Notably, in this study, religious and spiritual beliefs served as a lens that allowed parents to see and reflect on how hope and joy might co-exist with despair and grief. The parent narratives generated through collaborative photo-centered dialogue illustrate how seeking to understand and honor a families’ core beliefs or values can build the foundation of a supportive clinician-family relationship. Parents’ reflections also emphasized that promoting hope without acknowledging grief may be unhelpful for some families. Future work should explore the relationship between hope and spiritual distress and consider how clinicians and spiritual care providers can support families who struggle to reconcile their experience of hope with their beliefs.
Conclusion
The findings of this photo-narrative interview study underscore the complex, evolving nature of family hope during hospice and bereavement, highlighting how religion and spirituality can shape a parent’s unique journey. Understanding how parents conceptualize hope in the face of profound stress and anticipatory grief may help clinicians better communicate with and support families across the illness course and during bereavement.
Parents of children with cancer identify hope as a factor that influences coping, communication, and decision-making. The meaning, nature, and evolution of parental hope during hospice and bereavement remains underexplored. Photovoice is a participatory research method that uses participants’ photographs as a springboard for discussion about complex topics. Photovoice is an ideal but underutilized method for exploring lived experiences related to hope and hospice.
Methods
This qualitative photo-elicitation interview study aimed to explore cancer bereaved parents’ reflections on hope during hospice. Eligible parents were >18 years old, English- or Spanish-speaking, and the parent of a child who was treated at the study institution, received hospice care, and died 6-24 months prior to enrollment. Participating parents were invited to select 1-5 photos that depicted their experience or perception of hope when their child was on hospice and then use the photographs as a springboard for discussion in a one-on-one interview. Parents received standardized guidelines for how to select photos and had 1-3 weeks to review and choose photographs before engaging in the semi-structured interview. During the interview, participants were encouraged to share their photos and reflections, describe factors that supported and/or challenged their hope, and suggest ideas for how their experience could inform bereavement care and medical practice. Transcripts underwent reflexive thematic analysis, including iterative cycles of memo-writing, coding, and theme construction, to generate salient themes. Initial inductive analysis revealed notable depth and breadth of parents’ reflections on how their religious or spiritual worldview influenced their experience of hope, engendering further rounds of reflexive thematic analysis to identify sub-themes pertaining to religion and spirituality.
Results
20 bereaved parents engaged in interviews and provided photographs to support discussion. Five themes were generated from initial thematic analysis: 1) hope changes focus, 2) hope radiates from the child, 3) awareness of loss casts a shadow, 4) beliefs, spirituality, and worldview are a lens through which hope is seen, and 5) supportive clinicians see and honor the family’s hope. All parents described how their spirituality, religious beliefs, culture, and context colored their perspective and reflections on hope. Perspectives included Protestant Christian, Catholic Christian, Hindu, and non-religious. For most parents, their beliefs were described as an unchanging pillar throughout their child’s treatment, end-of-life, and their subsequent bereavement. Parents illustrated how their expectations about miracles, scripture, and prayer shifted focus over time, often allowing parents to find sanctity and meaning amid grief. Parents acknowledged how their child’s death impacted their faith, beliefs, and practices. Parents harnessed a variety of resources to seek or maintain coherence between their lived experience of hope and their spiritual beliefs, including community, spiritual care providers, prayer, ritual, scripture, and time in nature. While support and guidance from others was usually considered helpful, parents sometimes felt external pressure to be hopeful or to refocus their hope in a direction they were not ready for.
Discussion
Photovoice interviews provided a platform for deep, generative reflection on hope among bereaved parents. Using the themes generated during analysis, we propose 4 dimensions for the lived experience of evolving hope: focus, light, darkness, and lens. These dimensions may be useful for clinicians seeking to assess and support hope and may provide a basis for hope-centered interventions in future work. Notably, in this study, religious and spiritual beliefs served as a lens that allowed parents to see and reflect on how hope and joy might co-exist with despair and grief. The parent narratives generated through collaborative photo-centered dialogue illustrate how seeking to understand and honor a families’ core beliefs or values can build the foundation of a supportive clinician-family relationship. Parents’ reflections also emphasized that promoting hope without acknowledging grief may be unhelpful for some families. Future work should explore the relationship between hope and spiritual distress and consider how clinicians and spiritual care providers can support families who struggle to reconcile their experience of hope with their beliefs.
Conclusion
The findings of this photo-narrative interview study underscore the complex, evolving nature of family hope during hospice and bereavement, highlighting how religion and spirituality can shape a parent’s unique journey. Understanding how parents conceptualize hope in the face of profound stress and anticipatory grief may help clinicians better communicate with and support families across the illness course and during bereavement.