The course of the histiocytic disorders is unpredictable. The natural history and response to treatment is variable and uncertain. As development proceeds, the impact of the illness and its treatment can range from negligible to increasingly complex. Each patient and family brings a unique complement of strengths and vulnerabilities to dealing with a life-threatening illness. Children and adults with permanent severe late effects pose unique and, sometimes, disheartening challenges. These challenges include neuropsychologic deficits (Whitsett et al., 1999; Nanduri et al., 2003), in particular, retardation, and neuropsychiatric conditions, such as uncontrollable sexual excitement or emotional labiality. Unfortunately, these patients may respond sub-optimally or not at all to specialized medical or psychologic management approaches.

In a previous publication, Simms and Warner (1998) describe a framework for understanding and responding to the psychosocial needs of children with the commonest of the histiocytic disorders, Langerhans cell histiocytosis (LCH), and their families. Providers are encouraged to use five cardinal points when addressing psychosocial concerns. The five points are:

1. Attend to the provider–family relationship.

2. Emphasize that LCH imposes changes on family life.

3. Recognize that LCH can affect normal development.

4. Build collaborative relationships with family members.

5. Focus on competence (i.e. the ability to cope).

This framework is applicable to difficult clinical situations associated with the histiocytic disorders, in particular, noncompliance, permanent severe consequences, and death.