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Care Around Stillbirth and Neonatal Death (CASaND) Clinical Practice Guideline

Leaving hospital and ongoing support

Parents require immediate support in the initial stage of their grief, and pathways to ongoing support in their community once they have left hospital. However, parents often report that the support they received is inadequate.71 The Lancet Ending Preventable Stillbirth series highlighted the unmet needs of bereaved parents following hospital discharge, with 31% of women describing their post-hospital care after stillbirth as poor.72 Lack of care and follow-up support is likely to compound parents’ grief and contribute to feelings of isolation and loneliness.73,74,75

Leaving hospital can be a time of mixed emotions for parents. Some parents want to leave as soon as possible, while others may feel they are leaving a place that holds many precious memories of their baby.

Guiding Conversations booklet.

Appropriate discharge planning is essential to ensure that bereaved parents are supported in their transition from hospital to home. It is important that healthcare professionals are sensitive to parents’ needs at hospital discharge and ensure that parents are not left feeling abandoned or uncared for. Leaving hospital without their baby is highly distressing for parents. Every effort should be made to ensure that parents are emotionally supported as they leave hospital. It is important that parents are not faced with potentially confronting interactions, delays, or chance meetings or environments that may be a source of distress (for example walking past nursery, being in a lift with expectant parents).

Communication between hospital- and community-based healthcare professionals is an important part of continuity of care, and this needs to occur in a streamlined and standardised way. Follow-up with bereaved parents provides healthcare professionals an opportunity to connect them with additional support services and community resources if needed.76

In Australia, the Red Nose Hospital to Home Program is available to bereaved parents and family/whānau members for up to three months following the death of a baby. Thisprogram is designed to provide emotional and practical support for bereaved parents as they make the transition from hospital to home in the early phases of their grief. Support may include assistance with hospital discharge, accompanying parents to medical appointments, helping parents lodge paperwork such as birth and death registrations, and re-integrating parents with their employment or other general activities. Evaluation shows that the Program has made a meaningful difference to bereaved parents as demonstrated by high levels of satisfaction with the support received and significant improvements in domains of wellbeing that are known to be adversely affected following the death of a baby when parents are at most risk of isolation and psychological distress.77

No one is expecting you to go back to your old self, before the loss of Bub. No one is expecting you to get over it and move on quickly. .

Jiba Pepeny (Star Baby) booklet

In Australia, parents and their partners may be entitled to compassionate leave, parents or carer’s leave, bereavement leave or parental leave and unpaid special maternity leave.78 Returning to work after the loss of a baby can be a daunting prospect for parents because of concern about colleagues’ reactions, being exposed to triggers of grief, or general feelings of tiredness and reduced concentration.78 Workplace leaders may struggle to understand the sensitivities around perinatal loss or to know how to provide support. The Pink Elephants Support Network provides training and support for workplace leaders to support employees who experience perinatal loss.79 It is essential that parents and family/whānau members, including grandparents, are provided with a range of support options.

Red Nose provides specialised grief and loss support services in Australia, including support for healthcare professionals. The Red Nose Hospital to Home Program is a peer support program that provides emotional and practical support to parents for up to three months following the death of a baby.75 SMS4Dads is a text-based messaging service to support bereaved fathers. Bears of Hope also provide a range of support options including professional grief counselling and peer support such as parent workshops and father-specific support weekends. Miracle Babies Foundation also have a 24/7 peer support helpline NurtureLine for bereaved parents following newborn loss. The Pink Elephants Support Network provides peer support programs (including Peer Support Live Chat), emotional support resources for parents following early pregnancy loss, including workplace programs to better support parents returning to work. The Perinatal Loss Centre maintains a therapist register to enhance access to counselling support across Australia. The Centre for Perinatal Psychology provides a national directory of psychologists with expertise in counselling and support around perinatal loss. The Centre of Perinatal Excellence has an online directory that can be filtered by location to show perinatal mental health services in Australia. PANDA and Gidget Foundation offer a range of mental health and wellbeing support options for parents in Australia.

In Aotearoa New Zealand, parents and families/whānau who experience perinatal loss can receive support from a range of support groups, organisations, and resources. Whetūrangitia is an online resource for parent information. Sands New Zealand is a nationwide parent-run network for bereaved parents that offers face-to-face support (group meetings and one-on-one) and online and print resources, as well as providing memory making services in most hospitals. Baby Loss NZ also provides memory making services. Miscarriage Support and Miscarriage Matters provides online resources and best practice recommendations. See the Baby Loss Directory for more support options. PADA – Perinatal Anxiety and Depression Aotearoa is an advocacy and awareness organisation supporting best practice in perinatal mental health and wellbeing. 

Consensus-based recommendation 3.23

Discuss with parents prior to hospital discharge, their preferences for advising relevant healthcare professionals involved in their care (for example general practitioner [GP], other community-based services) of the baby’s death or impending death so that existing appointments are cancelled, and other types of appropriate follow-up are activated.

  • Document processes and decisions to ensure handover is contemporaneous and accurate.

Consensus-based recommendation 3.24  

Discuss the birth and death registration process with parents and family/whānau prior to their leaving hospital and ensure parents understand what is required of them.

  • Provide parents with written information about the registration process, including where, how, and when parents are required to register their baby’s birth and death.
  • Ensure parents are aware that there is no fee to register, and they can choose to purchase a birth certificate at the time, or later.

Consensus-based recommendation 3.25

Ensure parents are supported as they physically leave the hospital setting. For example, a healthcare professional or other support person should be available to accompany parents from the hospital to their mode of transport.

Consensus-based recommendation 3.26

Ensure parents leave hospital with contact details for 24-hour follow-up support and are provided with culturally and linguistically appropriate information about ongoing sources of support including parent support organisations.

Evidence-based recommendation 3.27

Evidence quality: moderate confidence

Ensure parents receive follow-up calls or visits, as required, from an appropriately skilled healthcare professional.

Evidence-based recommendation 3.28

Evidence quality: moderate confidence

Ask parents about their social and emotional wellbeing at all postnatal care appointments and appropriately refer to support services where needed.

  • Ensure sufficient time is available in all follow-up appointments with bereaved parents to enquire about their social and emotional wellbeing.
  • Provide information about future pregnancy planning and reproductive health at appropriate time points throughout their care and follow-up, including family planning if desired. See Section 5: Care in subsequent pregnancies

Communication with parents about findings of investigations

Parents should be assured that everything possible will be done to understand the cause of their baby’s death and that this will include standard investigations and a review of the care provided to facilitate improvements to future care.77 Refer to Section 6: Investigations for perinatal death for more information about communication and follow-up with parents.

Postnatal care and physical recovery
Section 3 references
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Western Pacific Regional Office of the International Stillbirth Alliance
Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

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Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine

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