state Medicaid and Title V programs are highly variable in what they cover or support.
Many families also face daunting practical challenges in identifying and coordinating multiple professional and other providers of care for a child with extensive medical and other needs. Some health maintenance organizations (HMOs) and integrated health systems reduce these burdens by themselves providing most or all of the needed services and personnel and by maintaining a unified information system to support record keeping, appointments, referrals, and other tasks. Whether they are employed by health plans, hospitals, or other organizations, discharge planners, case managers, and other paid personnel can assist families with some of the practical aspects of coordinating care. (These personnel also serve cost-containment goals, for example, helping to shorten hospital stays.)
As noted in the 1997 Institute of Medicine (IOM) report, the practical often overlaps with the physical, emotional, and spiritual dimensions of caring, and the three latter dimensions also mix with each other. For example, for a child experiencing hair loss or other changes in appearance related to chemotherapy, advice—particularly perhaps from someone with personal experience—about using wigs, scarves, or turbans or even about “making baldness a fashion statement” may help both emotionally and practically.
Box 5.2 provides examples of the many dimensions of practical support for children and families who are living with a child’s life-threatening medical condition. A number involve the goal of helping the child and family maintain a normal life to the extent possible. Others concern the family’s caregiving responsibilities, ready access to important information, and preparation for crises and for the child’s death. When a child is seriously ill, outside support with such matters aids the child by aiding the parents.
Opportunities for practical support continue after a child’s death. Particularly when a child has died suddenly without forewarning, the aftermath can be filled not only with emotional trauma and grief but also with bureaucratic requirements related to the hospital’s release of the body, the medical examiner’s jurisdiction, and other matters. Families may welcome assistance with the array of practical issues associated with funeral arrangements. When a child’s death is anticipated, some practical matters can be planned in advance, but the particular circumstances of a child’s death may still present unforeseen problems.
Given the diversity of child and family characteristics and circumstances, needs for practical assistance will vary enormously as will the challenges of meeting these needs. Although fundamental goals and principles may be consistent, strategies that meet the needs of affluent, well-educated, and stable families are unlikely to fit the single, barely literate, erratically employed parent with unstable family and personal relationships who lives in poverty in an unsafe neighborhood. Parents in the latter situa-