Help in Managing Disruptions in Family, School, and Work Life

As described in Chapters 1 and 2, cancer and its treatment and sequelae can limit the ability of patients and families to perform their usual personal roles and their roles in the family and the larger society. Unaddressed, these limitations can lead to emotional and mental health problems for both patient and family, and the inability to accomplish developmental tasks, such as attaining educational goals and establishing and maintaining social relationships, and to perform meaningful work inside and/or outside of the family. A number of services are aimed at addressing these problems. These include services to assist patients who are disabled in performing routine activities of daily living; to assist patients in dealing with cognitive impairments and educational difficulties; to support families and other caregivers in dealing with the emotional, physical, and other stresses of caregiving; and to provide patients and their families with legal protections afforded by such laws as the Americans with Disabilities Act and the Family and Medical Leave Act. As is true for the services described above, evidence in support of the effectiveness of these services varies.

Assistance with activities of daily living Personal care services (e.g., services to help patients bathe, dress, use the toilet, and groom themselves), as well as homemaker and chore services, are designed to help compensate for temporary or permanent inability to perform these tasks due to fatigue, pain, or loss of function. These services are often provided by families and other sources of informal support (Hayman et al., 2001) and, as with the material and logistical resources described above, are often available to some extent as well through the Medicaid and Medicare programs, the Older Americans Act, and free-standing home health agencies reimbursed through third-party insurers or out-of-pocket purchase by consumers. Also as with the provision of material and logistical resources, these services have long-standing and wide acceptance, and the committee did not review evidence for their effectiveness.

Cognitive and educational assistance As described in Chapter 1, cognitive impairment—manifest, for example, in a decreased ability to pay attention and concentrate, short-term memory loss, diminished language ability, decreased information processing speed, and diminished visual–motor integration and spatial abilities—has been well documented in children and adults treated for cancer (Anderson-Hanley et al., 2003; IOM and NRC, 2003; Matsuda et al., 2005; Stewart et al., 2006). The nature of this impairment may differ depending on the patient, the type of cancer, and the treatment regimen. Cognitive impairment associated with treatment for breast cancer, for example, appears to occur in fewer than half of patients and is mild and

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