Preloss and bereavement care

 DO

• The primary care provider is responsible for initiating bereavement care conversations. In consultation with child, family and multidisciplinary team including primary care providers, it is ensured that the desired bereavement care conversations take place.
• Loss is what parents experience as loss; this can vary from person to person. Be alert to loss experiences from the time the child is suspected of a serious condition until well after the child's death. 
• Be alert to parents' experiences of loss, even some professional interventions may feel like a step backwards to parents and thus a loss. Provide support if parents need it.
• During the end of life of their child and in crisis situations, parents usually try to remain strong to support their child and to cope with the situation. During this period, parents may deeply suppress their own emotions. Assist and support parents to cope at this time. 
• Explain to parents what normal grief reactions to expect from themselves and other people. Grief reactions are normal reactions in an abnormal situation. 
• Offer parents emotional peace of mind during the palliative phase. Designate one or two caregivers who will talk with parents about their feelings of loss and grief if the parents have the capacity to do so. Be sensitive to what the parents need, for example, is their coping more loss-oriented or recovery-oriented. Other caregivers can keep the atmosphere lighter and less serious unless parents initiate a deeper conversation.
• Be quick to recognise signals from parents, such as questions or comments, that parents want to talk about loss or deeper concerns.
• Whenever possible, discuss parents' wishes, the child's prognosis, and loss at arranged times. This ensures that parents know when to prepare emotionally for such a conversation and when parents should not expect it.
• Make parents feel safe and secure in their child's palliative journey by: seeing and acknowledging the child, approaching parents as equal partners, not making decisions apart from parents, and keeping parents fully informed.
• Actively offer initiatives or information to parents about possible support in terms of choices that can be made, making memories, loss and grief, and support options for parent and family.
• Discuss how parents want to say goodbye to their child. Consider cultural differences. Discuss whether there are religious aspects that are important in dealing with loss and mourning and what caregivers can do/contribute in that regard.
• Prepare parents for winding down and stopping support from regular caregivers and transferring care. Ensure that parents continue to feel supported immediately after the death and the ensuing bereavement period, and that parents know how they can access additional support. 
• Provide space for parents to have multiple bereavement conversations with caregivers who were involved in their child's care before, during and after death. Because children receive care and treatment in different settings, this may require multiple conversations with different caregivers. Ensure the presence of familiar caregivers who can reflect on the child's life and identity, answer questions, and go through the illness and death process and the process of decision-making. 

 DO

• Explore with parents whether or not and how they want to talk to their children about the approaching end of life and death.
• Explain to children in developmentally appropriate ways what is going on and what will happen.
• Give the child the opportunity to talk about their emotions and feelings to a trusted adult outside the family. 
• Involve siblings at the time of death by giving them a meaningful task appropriate to their developmental age and level of responsibility.
• Help children regulate and normalise emotions by assigning words to behavioural expressions of emotions.
• Help siblings find a way to adequately express their emotions.
• Children grieve intermittently. At times they experience the loss and at other times the loss does not exist for a while. Support children in this and also accept that children quickly turn their attention to other activities.
• Children’s conceptualisation of death changes and develops as they mature. As a result, after several months or years, a child may have to process new aspects of their grief and new questions may arise.