Maayke Hunfeld

246 Chapter 8 It should be possible to develop a scorings system which at least for the long-term outcome dichotomizes the outcome into ‘good’ or ‘poor’, based on the outcome set of P-COSCA, combined with domains of ICF-CY, such as participation and activities. However, it is unlikely that a scoring system is helpful in the clinical setting directly following CA for the individual parent/caregiver, patient, or clinician due to different values and norms about the meaning and consequences of an outcome. We have to accept this and we cannot change this. However, it is still our duty to inform parents as accurately as possible about their child’s expected prognosis, taking into account that percentages of good/poor outcome reflect a group and not an individual. It is inevitable that situations arise where clinicians and parents have diverging views regarding the acceptance of an expected poor clinical outcome with little to no functional recovery, possibly leading to parents’ distrust of the medical team. To avoid this situation, it is very important that clinicians should timely confer an accurate diagnosis and determine a prognosis. Furthermore, by implementing family-centered care, clinicians are able to explore the parent’s wishes for their child, and parents are better involved in the treatment of their child (76). This way, shared decision making can be achieved together with parents, and treatment goals and options can be determined (77). If disagreement persists, an ethicist, a religious consultant or social worker can be consulted. Sometimes a second opinion is required to reach consensus with parents. 4b.Outcome of family It is urgently necessary not only to assess the child’s outcome, but also that of parents and other family members. How do they appreciate life after such a major life event with many uncertainties and strains? Many family members suffer from psychosocial and social sequelae after hospital discharge, also known as ‘post-intensive-care syndrome-pediatric’ (PICS-p) (78). They will have to cope with their grieves and the trauma caused by the child’s hospital admission and the sorrow that their previously healthy child will not the same person anymore. The future perspective of their child or sibling can be completely different. Additionally, families end up in a new situation where their child or sibling has neurological sequelae with a big impact on every family member. The child may not be independent anymore and may need help in every daily activity. Relations within a family may change, which can for example result in disintegration due to divorce. Parents may not be able to return to their jobs and sometimes they even lose their jobs with all the financial consequences that this entails. On the other end of the spectrum, a life-threatening situation such as a pediatric OHCA can also bring more cohesion in the family. Parents are grateful that their child is still alive after this nerve-racking period (69).