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.

No abstract

Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.

Volunteerism after stillbirth has not been adequately explored despite recent advances in research on volunteering after trauma and the voluminous research on posttraumatic growth (PTG). Previous research on PTG, ''altruism born of suffering,'' and constructivist theories of grief, meaning, and social narrative provide applicable frameworks. Parents (N ¼ 191) in the present study were assessed for self-reported growth factors with the Posttraumatic Growth Inventory (PTGI) scale and gave narrative reports describing the importance of volunteering for them after their baby's death. Parents who volunteered after their baby's death self-reported significantly higher mean scores on the PGTI than parents who did not volunteer. Qualitative analysis with parents who volunteered only after their baby's death (n ¼ 39) discovered salient categories that confirm and connect theoretically similar explorations from prior research, and also illuminate new directions for research. Clinical implications and caveats are presented.

Adverse life events are associated with the often-terrifying REM sleep parasomnia of sleep paralysis (SP), but the impact of bereavement on SP has not been specifically examined. This exploratory, mixed-methods study ( N = 168) includes qualitative data from 55 participants who described factors they believed led to their SP. Of these, almost half with a traumatic loss listed death-related precipitants. In unadjusted (bivariate) negative binomial regression models, traumatic death, time since death, religiosity, and age estimated increased SP frequency in the prior month, prior year, or both. In multivariable models, traumatic death, time since death, and age estimated increased frequency in the prior month, prior year, or both. Unexpectedly, in all models, as compared to death ≥9 years earlier, prior month SP was greater with death 1–6 years earlier, but not <1 year earlier. Discussion includes the possible role of social constraints in traumatic grief trajectories and care provider recommendations.