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- The primary health care provider is responsible for initiating psychosocial care, but other caregivers can also identify and draw attention to the need for psychosocial care. The interpretation of psychosocial care is made in consultation with the child, family and multidisciplinary team.
- Strive for as much continuity in care providers as possible. Keep in mind that this is important for confidence in the care and provides peace of mind for children and their parents or health care proivders.
- When having conversations with child and parents, such as when changes in the course of illness occur, it is important to:
- Allow time and space for emotions.
- Provide honest and open information appropriate for the child and family. Also provide space for those who do not want to know.
- Establish what the parents and child already know.
- With changes in the course of illness, give parents the opportunity and space to reflect with caregivers on how they will communicate with the child and siblings. Help parents by creating this space.
- Inform parents about potentially confrontational questions that child, siblings may ask. Explain that parents do not have to have ready answers and can use the questions to find out more about what is on the child, sibling's mind. Explain that parents do not have to hide their emotions from their child(ren). Children are usually perceptive to the feelings of their loved ones so hiding emotions can be confusing for a child. Explain to parents that they can explain to their children that they are grieving and can remain available to them.
- Be alert that children and parents have different needs regarding social and practical support and that these needs may change during the course of the illness. This may include the following:
- Social support including attention to parenting, relationship with spouse or partner or sibling support. If necessary, involve a (medical) social worker, a medical pedagogical employee, psychologist or spiritual counsellor. Also refer to peer to peer contact groups if necessary.
- Material support including housing, home modifications, aids for medication administration or mobility and transportation.
- Practical support such as access to respite care, attention to the work situation of parents or attention to the wishes of the child, family and loved ones. If necessary, engage wish foundations such as Make a Wish, Make a Memory, Living Memories Foundation.
- Educational support including attention to educational facilities at home and in the hospital.
- Financial support including attention to financial and organizational issues.
- Be alert that caregivers may also need social and practical support and spiritual support.
- Discuss necessary practical arrangements with parents or caregivers after their child’s death and provide them with written information. Emphasise that things may feel different after death and that arrangements can always be adjusted. These may include arrangements regarding:
- Care of the body.
- Funeral preparations.
- Postmortem examination.
- Relevant legal considerations, including:
- The involvement of a 'child death overview panel'.
- Mandatory notification of the coroner after death.
- Determination of the death.
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