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ness “often joke that they should receive honorary medical or nursing licenses” (Hilden et al., 2001b, p. 168). Although the comment may be somewhat tongue-in-cheek, it highlights the complex tasks facing child patients and families—understanding and evaluating great amounts of information, advocating for needed information and services, making informed choices, directly providing care, monitoring a child’s status, and negotiating billing, insurance, program eligibility, and other bureaucratic processes. As one parent remarked, “It’s like you suddenly have a new small business to figure out and run on top of everything else going on.”
The family’s role in caregiving is increasingly being recognized, and more resources are being provided by hospitals, family support organizations, and other sources to help them perform this role effectively. Most practical resources appear to focus on caregivers for adults, especially elderly adults (see, e.g., ACP, 1997a,b; Karpinski, 2000; Meyer, 1998; Schmall et al., 2000; but see also CHI, 1991; Houts, 1997; Bayer Institute, 2001), although pediatric hospice programs and state and other programs for children with special needs also consider the needs of parents or other caregivers. Studies and experience suggest that many family caregivers receive little if any explicit training for what can be very demanding physical and emotional care responsibilities (Bull and Jervis, 1997; Levine, 1998; Driscoll, 2000; Rigoglioso, 2000).
In addition to providing information as described earlier in this chapter, Internet sites may suggest questions for parents to ask about the course of particular medical conditions, symptom management, and sources of assistance. Such prompting can help parents participate more effectively and fully in developing, understanding, and implementing their child’s care plan. Internet sites may also provide forums for people to seek and offer information about caregiving strategies.
Comprehensive guidance for family caregivers should cover physical and emotional problems and responses for child patients, parents, and siblings (e.g., isolation, depression, anxiety); spiritual resources; practical concerns (e.g., having advance care directives at hand when they are needed, managing health insurance, obtaining help from community agencies or volunteer groups); and bereavement. The next chapter examines the spiritual, emotional, and practical dimensions of care for the child and family.