P3.I166: "Changing Focus": Parents Reflecting on Hope during Hospice through Photovoice

Background: Parents of children with cancer often say ‘hope’ influences coping, communication, and decision-making. The meaning, nature, and evolution of parental hope during hospice and bereavement remains underexplored. Participant-generated photo-elicitation methods like photovoice are well-suited to explore understudied, complex topics like hope as well as emotionally-rich experiences such as hospice. Presently, photovoice remains largely untapped as a tool for research and support among bereaved parents.

Methods: This qualitative photo-elicitation interview study aimed to explore bereaved parents’ reflections on hope during hospice. Parents were eligible if they 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. Parents were invited to participate in a study in which they could select 1-5 photos that depicted their experience of hope while their child was on hospice and then use the photographs as a springboard for discussion in a one-on-one interview. Parents who enrolled received standardized guidelines for how to select photos. Parents had 1-3 weeks to select photographs before the interview. Semi-structured interviews allowed participants to share their photos and reflections, describe factors that supported and 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 generation.

Results: 20 participants were interviewed and provided photographs. The photographs provided a source for deep discussion of ‘hope’ contextualized into experiences, memories, feelings, and decisions during hospice. Parents chose images that reflected their child’s unique personalities and evoked strong emotions, with parents expressing joy, laughter, and tears. Parents often described their hope as centered on their child’s ability to embrace life, joy, freedom, and peace in the face of progressive symptoms and bad news. Contextual factors related to hope included family, location of end-of-life care, and medical therapies or technology. Several parents emphasized the value of honest, compassionate, personalized communication from providers as an essential facilitator of hope. Parents sometimes acknowledged losing hope, while also explaining that hope is never fully lost, but may “change focus.” While all parents described reframing hope, the timing and means of reframing hope were different for each parent. The process of sharing photos was emotionally complex for participants, yet parents consistently described the experience as helpful, in that it was therapeutic, allowed them to share their child’s legacy, and provided an opportunity to serve the medical community and other families, thereby generating hope for the future.

Conclusion: Photovoice is useful for promoting reflection and exploring narratives about hope among bereaved parents. Parents’ reflections and narratives can inform future research, provider education, and family-centered interventions toward the goal of nurturing hope throughout the illness and bereavement journey.