Bereavement support for families whose child has died

Hindmarch, 2009 Russo, 2005 Zagdanski, 1994

Bereavement support for the parents and families of a child who has died is an integral part of paediatric palliative care. The general principles of bereavement support apply (see Bereavement support for adults and Bereavement support for children); additional considerations are discussed below.

Continuity of care can be helpful to families when a healthcare professional or team who provided support to the family while the child was ill continues to do so after the child’s death. However, this may not be possible if the child died suddenly (eg from trauma or infection), or was under highly specialised care. Information and resources regarding bereavement support should be provided before the child’s death.

Services that only provide bereavement support after a child’s death also play a role. Some families find it beneficial to speak to a bereavement counsellor who is new to the situation, particularly if they have had conflict or other challenges with their healthcare team.

Many children’s hospitals and hospices have bereavement support programs that offer ongoing contact with the family. Bereavement support may be coordinated through one of these programs, or by the family’s general practitioner, a community nurse, a social worker or a pastoral care or faith-based worker. All families have unique needs and a flexible approach is required to support those who require help. Providing information and resources regarding the experience of grief and responses to loss can be helpful.

It is important for a member of the healthcare team to contact the family after a child has died (eg by phone or visiting) and offer ongoing support that can be realistically maintained. Healthcare professionals often feel apprehensive about the level of distress they may encounter when first making contact with a grieving family after the death of a child, and may not know what to say or how to help. However, some form of contact (card, letter, phone call) is often appreciated.

When making a phone call to a grieving family, the following may be helpful:

Before contacting them, identify the names of the family members, including children (to help to identify who has answered the phone).
Offer condolences, and acknowledge the family is experiencing grief and that you are calling at a difficult time.
Listen actively, answer questions and follow up on any specific requests.
Enquire as to how family members are coping and managing. Offer support, if needed, but seek consent from family members before referring them to formal bereavement services or programs.
If unable to make contact during the day, consider calling in the evening, if feasible. Alternatively, leave a message on an answering machine, or send a card or letter.

Many parents find support within their own community, but not everyone has a good support network. Some families appreciate practical support, such as assistance with transport, childminding or meals. Support groups can be helpful—the shared experience of the death of a child builds trust and understanding, and creates bonds that can cut across differences in age, social status, education and religion. It can be helpful to hear others expressing similar thoughts and feelings, and to know they face similar difficulties. Groups may provide support for parents, siblings or grandparents.

While the bereavement period can be extremely difficult for families, with adequate support many families get through this period without specialist intervention. However, if family members have previously been connected with mental health services, it can be helpful to ensure such support continues.