Provision of effective, meaningful and appropriate care for families who have experienced stillbirth: a comprehensive systematic review protocol
Authors: Peters Micah D J , Riitano Dagmara , Lisy Karolina , Jordan Zoe , Pearson Alan , Aromataris Edoardo 
Published: December 2014

Review objective
The objective of this review is to identify effective, meaningful and/or appropriate non-pharmacological, psychosocial supportive care interventions and strategies for families to improve their psychological well-being following stillbirth.

Review questions

Review question 1

What are effective interventions and strategies for improving the psychological wellbeing of families who have experienced stillbirth?

Review question 2

What are family's experiences of interventions and strategies aimed at improving their psychological well-being following stillbirth?
Specifically, this question examines the meaningfulness of interventions and strategies experienced by parents and families following stillbirth.

Review question 3

What is the appropriateness of interventions and strategies aimed at improving the psychological well-being of families who have experienced stillbirth?
Specifically, this question examines the cultural appropriateness of interventions following stillbirth.1

Background
The arrival of a healthy, newborn baby is often eagerly anticipated by parents and families. Sadly, for some families the loss of a baby through stillbirth can turn a joyous and celebratory occasion into the cause of lasting and devastating psychological and emotional distress. In Australia, stillbirth is defined as the death of a baby after 20 weeks in-utero until immediately before birth.2 It is a relatively common phenomenon, with one in every 135 births in Australia resulting in stillbirth.3 Despite this high prevalence, however, there remains uncertainty regarding what care and support healthcare professionals can provide after a mother and her family experience a stillbirth, both in the hospital and once the family has returned home. For example, some authors argue that the now-common practice of encouraging families to form a bond with their stillborn baby, take photos and hold a funeral service may increase the parents' - and particularly the mother's - risk of developing post-traumatic stress disorder.4 Conversely, the literature indicates that parents who have not had contact with their stillborn baby,5 or who have suppressed their grief and received limited support and acknowledgment of their stillbirth experience, are also likely to suffer adverse psychological effects after the loss.6,7

The actions and behaviors of healthcare professionals following stillbirth have been considered, with some studies reporting that as a result of them being ill-equipped to appropriately work with families after stillbirth, parents and families do not receive the best standard of care.8

A recent Cochrane systematic review aimed to assess the effectiveness of support strategies for mothers, fathers and families after perinatal death, including stillbirth.9 The review aimed to locate randomized controlled trials that assessed any form of support aimed at encouraging acceptance of loss, bereavement counselling, or specialized psychotherapy or counselling for mothers, fathers and families experiencing perinatal death.9 The review was ultimately unable to include any trials due to the large loss to follow-up reported.9 Despite not including any experimental studies in a quantitative synthesis, the Cochrane review highlighted three key themes that are consistent in providing care for parents following stillbirth: respect for the individuality and diversity of grief, respect for the deceased baby and a recognition of the healing power and resilience of the human spirit.9 The authors of this review concluded that the development of practical guidance around the support for families affected by stillbirth cannot yet be provided by an examination of experimental evidence and trials alone.9 Accordingly, it is important that a systematic review of the existing literature is conducted that encompasses more than randomized controlled trials and seeks the best available evidence from other reputable quantitative study designs and qualitative research.
This review aims to locate, appraise, synthesize and present the best available evidence to identify the most effective, meaningful and/or appropriate psychosocial strategies and interventions for parents and families who have experienced stillbirth. From the results of this comprehensive systematic review of the best available quantitative and qualitative evidence, best practice, evidence-based guidance and recommendations will be developed so that more clear direction can be provided to healthcare professionals on effective, meaningful and appropriate strategies in delivering the type of care that is necessary to improve the psychological wellbeing of parents and families affected by stillbirth.

Definitions
Terms used to describe the death of a baby during pregnancy vary widely and commonly overlap. This has been noted in the literature and described as problematic by Murphy, Shevlin and Elklit in 2014.10 For the purposes of this review, stillbirth is defined as the death of a baby in utero at any time from 20 weeks until immediately before birth.11

Other common definitions can overlap with stillbirth. For example, intrauterine death and intrauterine fetal death are both terms commonly used interchangeably with stillbirth. Further definitions are described below. Many of these definitions have been taken from the Perinatal Society of Australia and New Zealand (PSANZ) Guidelines 2012.11

Antepartum death

Death of a baby before the onset of labor. This term can encompass stillbirth after 20 weeks or more of pregnancy but also covers death prior to 20 weeks.11

Early pregnancy loss

Pregnancy loss occurring before 20 completed weeks of gestation or of a fetus less than 400gm weight if gestation is unknown.7

Fetal death

Can encompass or be used interchangeably with "stillbirth".11

Intrapartum death

Death of a baby during labor. If a baby is born without signs of life, but also without maceration (skin and other changes that occur at varying lengths of time after death in the womb), there is a strong presumption that death occurred during labor. There are exceptions in both directions, which require judgement on the timing of death in relation to the presumed onset of labor.11

Miscarriage (see also "Early pregnancy loss")

Refers to the death of a baby before 20 weeks.12

Neonatal death

Death before the age of 28 completed days following live birth.11

Perinatal death

Can encompass stillbirth as well as neonatal death.11

Pregnancy loss or Involuntary Pregnancy Loss (IPL)

Involuntary death of a baby during pregnancy. Can also refer to miscarriage, ectopic pregnancy, fetal death and stillbirth depending upon timing.13

Termination of pregnancy

A term used to describe deliberate ending of a pregnancy with the intention that the baby will not survive. This is inclusive of termination for genetic and medical reasons as well as voluntary non-medical termination.11