Children referred for heart/heart-lung (HIHL) transplantation are desperately ill, and their impending death raises particularly painful issues for families and health professionals. The H/HL transplant team at Great Ormond Street Hospital for Children (GOSH) assessed 264 children since 1988, of whom 90 have been transplanted. A policy of shared care between GOSH and the local referring centre operated throughout. As in similar situations of serious ill health, maladaptive patterns are identified within the family and between the family and the health professionals teams involved. The patterns of avoidance and denial in the family are reflected in the functioning of teams, with potentially damaging effects, and are described in detail; we discuss various interventions designed to improve family and team functioning.
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