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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 takes place in consultation with the child, family and multidisciplinary team.
- Provide clear information to child and family (including siblings) about the emotional consequences that may be appropriate for the syndrome.
- Be alert that child and family (including siblings) may have problems in the areas of:
- Social emotional development.
- Cognitive development.
- Mental health.
- Be aware that it is important for a child to have the space and opportunities in activities and conversations to be able to express himself/herself appropriate to his/her developmental stage about the experience of his/her illness and impending death. Note that there may be developmental differences in emotional responses, experiences and understanding of death.
- If emotional burden persists, refer child and family to expert psychosocial care services to help with the processing of profound experiences and stress, and assist with coping and building resilience. Consider a medical pedagogical employee, medical social worker or a psychologist. To provide support for religious and spiritual suffering and answer questions on meaning, a spiritual caregiver may be consulted.
- Actively monitor the well-being of siblings and provide appropriate support including practical and social support, educational, psychological or cultural, spiritual and religious support.
- Keep in mind that other family members (e.g. grandparents) and loved ones (e.g. friends, boyfriends or girlfriends) who are important to the child and family may need support including practical and social support, educational, psychological or cultural, spiritual and religious support. Be aware that emotions of other family members and loved ones may also have a significant effect on child and family.
- Respond promptly to rapid changes in the child's condition, who may need rapid access to psychosocial support including practical and social support, educational, psychological or cultural, spiritual and religious support.
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