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and hopes that might otherwise be unexpressed. With the child’s permission, these concerns may be communicated to parents and the care team.
Child-life specialists typically work “9 to 5” and, thus, are not available to support children, families, and physicians when crises arise outside those hours. Unlike psychiatrists but like nurses and, often, clinical social workers and clinical psychologists, child-life specialists cannot directly bill insurers for their services. In times of particular fiscal stress, their services are vulnerable to discontinuation.
Providers of bereavement care may come from a variety of backgrounds including social work, psychology, and nursing. Helping bereaved people may be a full-time responsibility or one aspect of the work of a chaplain, social worker, funeral director, hospice volunteer, or other interested individual.
Chaplains provide spiritual care to patients and families in hospitals and other care settings. They also provide emotional support and comfort and practical assistance to families coping with the death of a child (Sommer, 2001). As discussed in Chapter 5, provisions for spiritual care are part of hospital accreditation and Medicare hospice requirements. In general, however, the extent of chaplains’ involvement with dying children and their families is little documented or evaluated.
Hospital teachers provide individualized and group learning for patients well enough to leave their beds during the day. They also make rounds to help children who are confined to their rooms. Other teachers specialize in home tutoring. Hospital and home teachers can establish close relationships with children, who may feel comfortable sharing concerns with a home teacher rather than adding to their parents’ worries and stress (Weil, 2001). In addition, although such links are more the exception than the rule, videoconferencing and other technologies provide opportunities to help homebound children maintain contact with children, teachers, and resources at their regular school (Bowman, 2001).
Phlebotomists, respiratory therapists, physical therapists, and others who are skilled in working with small patients can reduce the physical and emotional distress caused by diagnostic and therapeutic procedures. Ideally, they will have equipment (e.g., needles and other intravenous equipment, breathing tubes, oxygen masks) appropriate for children of different sizes, and they will also develop skills in reassuring or distracting children and otherwise reducing their fears and anxieties. General hospitals with no pediatric unit are unlikely to have such specialized personnel and equipment.