“Most Prized Possessions”: Photography as Living Relationships within the End-of-Life Care of Newborns

Abstract

This article reports findings from a phenomenological inquiry into how parents experience End-of-Life (EOL) photography around the death of their newborn in the neonatal intensive care unit (NICU) and in their lives beyond the hospital. The study involved semi-structured interviews with 10 parents who had experienced the death of their newborn within the last five years in the same NICU setting. All parents had participated in EOL photography, having photos taken by nurses, by themselves, and/or by volunteer professional photographers. Through an Interpretive Phenomenological Analysis, the theme of "living relationships" emerged, revealing the photography as valued more than for the photos as "mementos," but further as an activity grounding relationships and fostering interaction between families, newborns, and care-providers; these findings provide insight into how parents came to see their EOL photos as "prized possessions." The article is concluded with a discussion on a Model for Photographing Living Relationships.

The Power and Potential of Photography as a Therapeutic Modality for Children with Life-Impacting Illnesses

“…support 13,14 and have even been incorporated into end-of-life care guidelines, 15 to our knowledge, our photography impact survey serves as the first quantitative evidence of photography's therapeutic potential. Further, we characterized the nature of photography's impact.…”

“…18 Of late, patients have moved from behind the camera to in front of it. While these professional photography sessions have substantial anecdotal support 13,14 and have even been incorporated into end-of-life care guidelines, 15 to our knowledge, our photography impact survey serves as the first quantitative evidence of photography's therapeutic potential. Further, we characterized the nature of photography's impact.…”

“…In addition to patient-produced photographs, professionally-produced portraits of children and their families have gained popularity in children's hospitals across the U.S. These photographs have been described as “living relationships”, “mementos”, and “prized possessions” 13 and are among the leading personal choices at neonatal end of life. 14 In fact, photography was recently incorporated into a clinician's guide to end-of-life care published by Frontiers in Pediatrics .…”

The viability and appropriateness of using visual methods in end of life research to foreground the experiences of people affected by financial hardship and deprivation

“…Examples from perinatal palliative care, where it has been used as a means of legacy building 39 and to aid the grieving process, involved discussing pre-existing professional imagery with bereaved parents rather than the research team collaborating with a professional photographer to make new images as we did in our project. 40 More substantive books of images of dying taken by professional photographers do exist, but have not been taken as part of research projects. [2][3][4][5]…”

Memory Making in Neonatal End‐Of‐Life Care

“…Photographs that depicted the interaction between parent and child were considered especially valuable by parents, particularly where these captured instances of caregiving (Branchett & Stretton, 2012;Martel & Ives-Baine, 2014). Photos that were taken without medical equipment, such as endotracheal tubes, intravenous lines or monitoring were also found to be valuable (Harvey et al, 2008;Kavanaugh & Moro, 2006;Martel & Ives-Baine, 2014), especially as these often represented the parents' first unobstructed view of their baby. In addition, photos that were as close as possible to "normal" baby photos were found to be preferred by the parents (Martell & Ives-Baine, 2014).…”