ArticleCreating Evidence: Findings from a Grounded Theory of Memory-Making in Neonatal Bereavement Care in Australia
Introduction
The loss of an infant in the perinatal period places parents at increased risk of a range of adverse psychological outcomes. These may include complicated or prolonged grief responses (Kersting & Wagner, 2012; Koopmans, Wilson, Cacciatore, & Flenady, 2013; McSpedden, Mullan, Sharpe, Breen, & Lobb, 2017), depressive symptoms and anxiety (Heazell et al., 2016) and trauma-related outcomes such as Post-Traumatic Stress (Chung & Reed, 2017; Murphy, Shevlin, & Elklit, 2014). These clinically significant and prolonged grief and trauma responses highlight the importance of appropriate bereavement care in the context of perinatal loss.
While grief and trauma may result from any form of loss, the death of an infant before or soon after birth presents unique challenges. For example, the loss of an infant may threaten the identity of the individual as a parent (Crawley, Lomax, & Ayers, 2013; Lathrop & Van De Vusse, 2011). Parents who have experienced the death of their baby may experience disenfranchised grief due to a lack of social recognition of their infant as a ‘real’ and loved individual and their loss as legitimate (Cacciatore, 2013; Heazell et al., 2016)
Perinatal palliative care and bereavement guidelines recommend supporting parents to make memories with their babies. This can include collecting items that might hold significance for parents, such as items of clothing, hospital identification bands, or blankets and soft toys belonging to the infant (Australian College of Neonatal Nurses, 2010; British Association of Perinatal Medicine, 2010; National Association of Neonatal Nurses, 2015; Perinatal Society of Australia and New Zealand, 2019). These guidelines also recommend that clinicians offer to assist in taking photographs of the baby and family, and to create other mementos such as handprints or footprints.
While such practices have become common over the past 20 years, evidence for memory-making as a perinatal bereavement intervention remains limited. A scoping review by Thornton, Nicholson, and Harms (2019) revealed that while the collection or creation of mementos arose frequently as a finding within qualitative studies of parents' experiences of perinatal bereavement care, fewer studies examined specific memory-making interventions in detail.
Those studies that have explored bereavement photography have identified that parents are typically grateful for photographs provided by hospital staff, while parents who were not offered photographs frequently expressed regret following their loss (Alexander, 2001; Blood & Cacciatore, 2014a; Cacciatore & Flint, 2012). The collection or creation of mementos has also been identified in some studies as an important element of care for parents experiencing perinatal loss (Baughcum et al., 2017; Cacciatore & Flint, 2012; McGuinness, 2015; Shelkowitz, Vessella, O'Reilly, Tucker, & Lechner, 2015). While this literature provides some insight into the significance of photographs and mementos for bereaved parents, limited evidence exists to guide practice. The purpose of this study was to explore the significance of memory-making activities for parents experiencing the death of a neonate, and the impact that these activities have on parents' experience of bereavement.
Section snippets
Design and methods
This study was conducted using the grounded theory approach described by Corbin and Strauss (Corbin & Strauss, 2008; Strauss and Corbin, 1990, Strauss and Corbin, 2015). Grounded theory has been identified as being particularly useful where limited knowledge exists (Engward, 2013; Schreiber, 2001), and where generation of theory would be valuable (Merriam & Tisdell, 2015). Although there is an increasing body of research exploring perinatal bereavement, little is known about bereavement
Results
This study resulted in the development of a grounded theory titled “Affirmed Parenthood” (Fig. 1). The core category affirmed parenthood was supported by three key categories; “Being a parent”, “Being guided” and “Creating Evidence”. “Being a parent” included spending time with the baby before and after death, holding or touching the baby, and providing physical care. “Being guided” represented parents' need to be supported and encouraged throughout the process of memory-making. Finally,
Discussion
As discussed previously, there is considerable evidence that parents appreciate photographs of their baby, and that these photographs have a significant impact on parents' experience of grief. As with the participants in the current study however, research demonstrates that the content of such photos is important to parents. For example research indicates that photographs taken while the baby was alive are more acceptable to parents (Harvey, Snowdon, & Elbourne, 2008). In our study, multiple
CRediT authorship contribution statement
Rebecca Thornton:Conceptualization, Methodology, Data curation, Formal analysis, Investigation, Writing - original draft, Visualization.Patricia Nicholson:Conceptualization, Methodology, Writing - review & editing, Supervision.Louise Harms:Conceptualization, Methodology, Writing - review & editing, Supervision, Project administration.
Declaration of competing interest
None.
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