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

Social and emotional support for perinatal grief

Care around loss - parent resources

Parents grieve the loss of their baby, as well as hopes and dreams for the future.⁶

Grief is an expected and normal response following the death of a baby. High levels of distress and multifaceted emotional responses are also a normal part of the grieving process for many parents and family/whānau members.⁴ Many bereaved individuals will have support from their existing social networks; and some parents will find benefit in engaging with peer support or professional counselling support options.^24,25

Perinatal loss can be associated with:

stigma and misperceptions^2,20,25
self-blame for their baby’s death
feelings of failure, shame, guilt, anger, and/or isolation^2,26
lack of acknowledgement of their baby, the extent of their loss, and their identity as bereaved parents leading to disenfranchised grief,²⁷ where parents feel their grief is not legitimate or socially acceptable to others.^4,20,28

It is essential to consider all those affected by each perinatal loss. Feelings of loss and grief are experienced by fathers/partners who also need validation and support.²⁹ Studies have shown men experience significant and persistent grief across all types of loss.^30,31 All fathers/partners need to be offered support immediately after the loss, and in the following months.³² It is also important to acknowledge and validate differences in grieving between partners, which can greatly affect communication and relationships.³³

It is also critical to recognise and validate the impact of perinatal loss on other family/whānau members such as other children and grandparents.^34,35 Grandparents have reported experiences of a ‘double grief’, as they often play a significant role in supporting their children through perinatal loss, while also experiencing grief for the loss of their grandchild. Grandmothers described their experiences of pregnancy loss as an ambiguous and compounded loss, with disenfranchisement.

“From the start my partner and I handled our baby’s death completely differently. I thought he should be upset, but he looked like he was okay.

One of the most helpful things I read was that the biggest strain on relationships isn’t that you’ve lost a child, but that you aren’t able to accept each other’s ways of grieving. Then I just thought to myself ‘All right, we are not going to grieve the same way.”

Parent quote from the Guiding Conversations booklet.

The quality of care and support that bereaved parents and families/whānau receive across the continuum of care directly affects their immediate and long-term wellbeing.^23,24,36 All parents and families/whānau should be offered support that is individualised and sensitive to their needs, culture, and circumstances.

It is important to avoid making assumptions about how parents will grieve or what supports they will need.²⁰ Providing details of sources of support at the earliest possible stage is beneficial to families/whānau who may feel a sense of isolation, especially in the early days following diagnosis.

Support and anticipatory guidance on what to expect should be offered at the time of breaking bad news and continue throughout the continuum of care.^9,37 See Section 3: Perinatal loss care for more information and best practice recommendations for breaking bad news.

Social support that is perceived as helpful is a significant predictor of positive bereavement outcomes.³⁸ Individual and group peer support has been reported as highly valued by bereaved parents and family/whānau members. Peer support can foster a sense of community and support, comfort and hope.^39,40 Bereavement support programs may also benefit family/whānau members, including grandparents and siblings.⁴¹ There is also some evidence that family/whānau support programs can help prevent post-traumatic stress symptoms for women who experience termination of pregnancy for medical reasons.^34,35

“The other thing about being supported by someone who had been through baby loss before, it showed that somehow life goes on and people can still develop and grow and maybe have other children afterwards as well. It is not like the end.”⁴²

“When you feel hopeless and have no idea what to do with such a devastating experience, it was good to know I have this.”

Bereaved mother, LWL participant, Australia 2022.

Support services for parents and families/whānau can often be limited or unavailable in rural regions, with long waitlists. Online and internet-based supports suit many, being readily accessible and usually providing anonymity and privacy.⁴³ The Living with Loss Program (LWL) developed by the Stillbirth CRE⁴⁴ is an evidence-based self-guided online program for parents in Australia who have experienced perinatal loss. LWL consists of flexible modules focused on normalising and validating the individual experience of grief and coping processes and is grounded in cognitive and behavioural approaches to bereavement, including mindfulness and compassion-focused therapy. In a randomised controlled trial, bereaved mothers who accessed the LWL program experienced significantly lower symptoms of psychological distress at the end of the 8-week study period, compared to those in usual care.⁴⁵

The public health model for bereavement support proposes three tiers of support according to level of need: (1) universal support, primarily provided by existing social supports (such as family/whānau, friends); (2) formal support options from the wider community for people with moderate needs; and (3) specialist support from mental health services for those identified as having complex needs.^36,46 While evidence on effective bereavement interventions is limited,³⁸ support should be targeted, accessible, and available across the continuum of care from the moment of bad news, through birth and postpartum, and through to any subsequent pregnancies and parenthood

Consensus-based recommendation 2.7

Normalise and validate parents’ individual experience of grief and loss. Support parents to express their concerns by confirming their feelings and having open discussions about their needs.

Be aware of potential differences in how partners and family/whānau members express grief.

Consensus-based recommendation 2.8

Acknowledge father/partner’s experience of loss and their identity as a parent. Provide tailored support services for fathers/partners including both formal and informal support options and referral to parent support organisations as required.

Consensus-based recommendation 2.9

Acknowledge the grief and loss of other family/whānau members, especially grandparents and other children (siblings), and offer appropriate support options.

Consensus-based recommendation 2.10

Offer parents culturally and linguistically appropriate information about perinatal grief and what to expect, to review when they are ready.

Consensus-based recommendation 2.11

Provide parents and family/whānau members with information and opportunities for social and emotional support including peer support, professional counselling and psychology services, and other bereavement support services.

Mental health considerations

The death of a baby has a profound impact on short-and long-term psychological, social, and emotional outcomes for bereaved parents.⁴⁷ Grief is an expected and normal response to the death of a baby; however, the wellbeing of bereaved parents and family/whānau depends greatly on how their individual grief process is supported.

Grief, and sometimes depressive symptoms, are a common experience following the death of a child and should be viewed as normal.⁴⁷

Following the death of a baby, parents are at increased risk of high levels of anxiety, depression, severe symptoms of post-traumatic stress, and prolonged grief years later,^48,49 which can extend into subsequent pregnancies and parenthood.^47,50 Risk factors for adverse mental health outcomes such as major depressive disorder, generalised anxiety disorder, and post-traumatic stress disorder include a history of a previous mental health diagnosis,^23,24,51 limited social support, relationship difficulties and breakdown, societal stigma, and blame and isolation.^28,52-57

Taking care of your body, your mind and spirit will support you in your grief and support you to heal at your own pace.

Jiba Pepeny (Star Baby) booklet.

Grief and depression share similar features and may be experienced simultaneously. This can complicate standard mental health screening and assessments for bereaved parents and family/whānau members.⁵¹ It is important to be aware whether bereaved parents or family/whānau members appear to be struggling with co-occurring mental health difficulties that require referral to professional support. While each family will need individual consideration depending on their circumstances, discussion with parents may be considered appropriate around more prolonged and severe symptoms of distress, substance use, and thoughts around suicide.⁵⁸

Social and emotional interventions have been found to be effective in reducing depression and anxiety among parents after perinatal loss.⁵⁹ Offers of psychological support may be valued by some parents as they imply recognition of loss, particularly to those parents at risk of disenfranchised grief.⁶⁰ In an Australian study examining the impact of bereavement services on the progression to complicated grief, 75% had a perinatal post-traumatic stress disorder (PTSD) score that indicated the need for support from mental health services, with 43% meeting the criteria for complicated grief.⁶¹ Women whose PTSD scores were in the highest quartile were most likely to access services. This requires grief training of hospital staff, and for referral to bereavement services to be offered after hospital discharge.⁶¹ Perinatal loss also increases a woman’s risk for major depressive disorder with 60–70% of women meeting diagnostic criteria for grief-related depression up to one year after their baby’s death, and a further half of those women experiencing depression for at least four years post loss.^2,62 The role of family/whānau support following stillbirth can also be helpful in mediating maternal anxiety and depression,⁶³ with social support also often mediating to help reduce PTSD symptoms following perinatal loss.^64,65

While not all bereaved parents will require or access formal psychological support, they all need information about the range of support options available, including professional services (such as counsellors, psychologists) with expertise in perinatal loss. It is also important to consider geographic limitations and availability and accessibility to support services for each family/whānau.⁶⁶

Red Nose provides specialised grief and loss support services in Australia, including support for healthcare professionals. The 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.⁴² Red Nose together with SMS4Dads provide 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.

Consensus-based recommendation 2.12

Establish and use referral pathways to ensure appropriate ongoing professional support for parents who may be at risk of developing mental health problems (for example post-traumatic stress), particularly parents who have pre-existing mental health conditions.

Other considerations

Many circumstances can add to the complexity of parents’ grief experiences and heighten the need for sensitivity and understanding from healthcare professionals.

Multiple births: Parents of twins or higher order births may experience conflicting emotions when one or more of their babies die and one or more survive. This can be compounded by the surviving twin being unwell and being in neonatal intensive care. Common emotions may include guilt relating to the amount of time spent with a deceased baby, feeling torn between spending time with their living and deceased babies. Acknowledging such conflicting feelings is important, to validate both the baby who has died and the parents’ grief for that child, particularly when the response of others may be to focus on the surviving baby (see Guiding Conversations booklet).
Maternal illness: If a woman is unwell following the birth, every effort must be made to ensure appropriate and timely communication to ensure she is kept informed and involved in decision making.⁶⁷ Opportunities for the woman to have access to her baby and to delay decisions where possible need to be considered and discussed with the woman, her partner/support person and other family/whānau members as appropriate.
Maternal death: While maternal death is rare in countries such as Australia and Aotearoa New Zealand,^68,69 it has an overwhelming impact on families/whānau. There is an increased incidence of previous experience of maternal death in refugee and some immigrant populations, affecting their care requirements. In the case of both maternal death and perinatal death, the impact on the remaining parent is devastating and requires expert individualised care.
Previous loss experiences: Parents’ responses to the death of a baby may be intensified by previous experiences of loss, including miscarriage, perinatal or child death, and difficulties conceiving.⁷⁰ Some parents may have clear ideas regarding the way in which they choose to manage the death of their baby due to previous experience. It is important for healthcare professionals to respect parents’ wishes, provide appropriate support and information, and be guided by the parent’s response.

Approach to care

Provision of culturally responsive care