Elsevier

Journal of Pediatric Nursing

Volume 53, July–August 2020, Pages 29-35
Journal of Pediatric Nursing

Article
Creating Evidence: Findings from a Grounded Theory of Memory-Making in Neonatal Bereavement Care in Australia

https://doi.org/10.1016/j.pedn.2020.04.006Get rights and content

Highlights

  • Mementos provide evidence to affirm the life of the baby and the role of the parent.

  • Significant mementos included candid non-medicalised photographs and tactile items.

  • Creating evidence was critical to parents' experience of bereavement.

Abstract

Purpose

Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.

Design and methods

We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.

Results

“Creating evidence” emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.

Conclusions

Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.

Practice implications

Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.

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.

References (38)

  • British Association of Perinatal Medicine. (2010). Palliative care (supportive and end of life care) a framework for...
  • J. Cacciatore

    The unique experiences of women and their families after the death of a baby

    Social Work in Health Care

    (2010)
  • J. Cacciatore et al.

    Mediating grief: Postmortem ritualization after child death

    Journal of Loss and Trauma

    (2012)
  • Canadian Pediatric Society

    Guidelines for health care professionals supporting families experiencing a perinatal loss

    Paediatrics & Child Health

    (2001)
  • H.-Y. Chen et al.

    Using a synthesised technique for grounded theory in nursing research

    Journal of Clinical Nursing

    (2009)
  • M. Chung et al.

    Posttraumatic stress disorder following stillbirth: Trauma characteristics, locus of control, posttraumatic cognitions

    Psychiatric Quarterly

    (2017)
  • A. Cooney

    Rigour and grounded theory

    Nurse Researcher

    (2011)
  • J.M. Corbin et al.

    Basics of qualitative research: Techniques and procedures for developing grounded theory

    (2008)
  • R. Crawley et al.

    Recovering from stillbirth: the effects of marking and sharing memories on maternal mental health.

    Journal of Reproductive and Infant Psychology

    (2013)
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