Best practice in bereavement photography after perinatal death: qualitative analysis with 104 parents

Abstract

BackgroundPostmortem memento photography has emerged in Western hospitals as part of compassionate bereavement care for parents facing perinatal death. Many parents endorse this psychosocial intervention, yet implementation varies greatly and little research on parents’ specific needs guides health care professionals. Parents are in crisis and vulnerable after the death of their child, thus best practice is crucial. This study contributes 104 parents’ experiences and opinions toward the understanding of best practice in perinatal bereavement photography.MethodsParents who experienced the perinatal death of their child were recruited from U.S.-based bereavement organizations and social media sites. Volunteers completed an anonymous internet survey with open- and closed-ended questions. Direct recommendations and pertinent statements regarding the process of postmortem photography were analyzed for thematic content in keeping with conventional content analysis. Recurrent themes and sub-themes were counted to identify response patterns.ResultsOf 93 parents with pictures, 92 endorsed them. Of 11 without pictures, nine wanted them. Parents made a variety of recommendations regarding appropriate psychosocial support, the consent process, obstacles to photography, logistics of photography, and material aspects of photographs themselves. Overall, parents wanted many pictures and much variety. Some wanted professional photography while others wanted support for taking their own pictures. Parents wanted guidance from staff who respected their particular needs. Many said decisions were difficult during their crisis. Parents who were initially resistant expressed current appreciation for pictures or expressed regret that they had not participated. Parents recommended that professionals strongly encourage parents to create memento photos despite parents’ initial reservations. Persistent cultural reasons against photography emerged in one case. Quotes by parents illuminate themes and enable respondents to speak directly to health care professionals.ConclusionsParents overwhelmingly support postmortem bereavement photography when conducted sensitively, even if imperfectly executed. Providers significantly influence parents during their crises; mindful, patient-centered care with appropriate respect for difference is necessary. Providers must understand the importance of postmortem photographs to parents who have limited opportunity to capture memories of their child. Hospitals should provide education and support for this important psychosocial intervention.Electronic supplementary materialThe online version of this article (doi:10.1186/2050-7283-2-15) contains supplementary material, which is available to authorized users.

Counseling for personal care options at neonatal end of life: a quantitative and qualitative parent survey

“…Furthermore, they look to their healthcare providers for guidance on how to accomplish this, and expressed wishes and regrets related to what did not occur in terms of memories and bonding. These findings are consistent with research suggesting that parents want options for memory making and encouragement from healthcare providers if they are initially hesitant, and regret what they did not do, for example in the realm of bereavement photography [ 28 ]. Additionally, they expressed the need to feel supported, respected and nurtured in the process.…”

Prácticas de atención a la familia en duelo ante la muerte del neonato en la unidad de cuidado intensivo neonatal

“…Los rituales post mortem son reportados por la literatura como una forma de facilitar los recuerdos [19][20][21][22] , aunque se desconoce hasta qué punto estas acciones pueden ayudar el proceso de duelo 20 . En su revisión sistemática Gold y Cols 21 describen varias prácticas relacionadas con la generación de recuerdos, entre ellas la fotografía postmortem, ver y sostener al bebé y desarrollar ceremonias privadas.…”

“…La fotografía postmortem tiene un lugar privilegiado. Blood y Cacciatore 19 comentan que la utilización de la fotografía postmortem tiene un gran valor; perder la oportunidad de tomar una fotografía en el momento de crisis podría ser irremediable y una fuente de arrepentimiento. Estos mismos autores en otro artículo, concluyeron que entre más joven sea el infante, más dados van a estar los padres a esta práctica 23 .…”

Morir antes de nacer. Experiencias de madres, padres y profesionales ante la situación de muerte fetal tardía

“…A wide range of literature exists about best practices in bereavement during perinatal death Blood and Cacciatore, 2014 ). However, the so-called facilitative and non-facilitative actions are not exempt from controversy or conflicting opinions, such as the relationship between contact with the newborn and its subsequent implications on the mother's mental health .…”

“…Data were collected through three focus groups between February 2012 and March 2014. Focus groups allow researchers to explore the nature and effects of ongoing social discourse, of social practice, and collective meaning making ( Barbour, 2007;Kamberelis and Dimitriadis, 2011 ). Focus groups are suitable in interpretive phenomenology because they foster the enrichment of data brought about by the interaction of participants and are useful to researchers for cross-checking and clarification ( Bradbury- Jones et al, 2009 ).…”