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CHAPTER FOUR: Clinical Advocacy
- Johns Hopkins University Press
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89 Clinical Advocacy Advocating clinically for individual children and their families comes naturally to child health providers. The office, the ward, the nursery, are comfort zones. Nonetheless, it is at the clinical level that many physicians and nurses feel dissatisfied, and even disgruntled, about their inability to make a difference. They worry that they cannot alleviate suffering stemming from family, economic, community-based, and societal influences. The cardiac surgeon thinks to himself, “I know that mom is depressed, but what can I do about it?”The nurse in the neonatal intensive care unit asks, “How can our team be sure that this newborn will be safe at home, when we suspect that his father is a drug addict?” The on-call doctor scans the numerous emergency room visit and notes, “This kid keeps coming in with injuries, but I am powerless to get the slum landlord to fix up that apartment.” The pulmonary fellow consulting on the chronic care service muses,“Isn’t that something? This family has all the money in the world, but if we don’t find a better way to help the parents with the day-to-day care of this youngster on the respirator, their world is going to fall apart.” Across the country, child health providers are creating models to improve and expand clinical care to involve not only the child’s condition but also the family’s situation and the community’s resources.1 Successful responses involve pediatricians with public health,social services,and education. When practitioners venture outside the clinic they discover opportunities to work with others on systems that diminish health and developmental threats to children. In this chapter, let us look first at intervention, tools, and models within traditional health care settings, then at models beyond the clinic walls that enhance service availability through partnerships. Together, these models constitute the “medical home,” which brings together all the elements of a comprehensive, coordinated approach to care for individual children and their families. 4 90 Child Health in America Traditional Health Care: The Basics In 1978 in Alma Ata in the USSR physicians from around the world met with representatives of the World Health Organization and UNICEF to define the principles of health care delivery.2 The meeting culminated in the introduction of the “4As” methodology. Using the Alma Ata system, providers are asked, Is the health care you are offering accessible and affordable , available and appropriate? At the most basic level, child health advocacy is about answering yes to all four. Accessibility Patients may have trouble gaining access to health facilities for a wide variety of reasons,including the location of the practice.Practice sites with limited parking and accessibility to public transportation may be hard to reach. In some major urban areas, safety issues may present real accessibility barriers.If there is active gang warfare near a health center,parents may be reticent to come to the clinic for well child care. It is not unreasonable for families to miss their children’s shots for fear of being shot. Even the best-placed setting may be inaccessible. Clinics and offices in buildings built before the Americans with Disabilities Act may have no accommodation for baby strollers, wheelchairs, portable suction machines , oxygen tanks, or IV poles.3 Fortunately, the act’s regulations are improving accessibility for children as much as they are for others; pediatricians can even obtain handicapped license plates for the parents of children with disabilities. Language barriers are the most common accessibility issue. When families cannot grasp what is being asked of them, cannot answer the clinicians’ questions, cannot convey their concerns or understand what medicines and regimens are being prescribed,how accessible is the health care? Bringing in the community to help can make an enormous difference ; in Boston, for example, translators from Jewish Family Services accompany Russian immigrant families to well child and sick care appointments . Even though no clinic can accommodate ten or fifteen different languages, it can provide translated information for the predominant language groups. A baby book in both English and Spanish, for example, is distributed by the publicly funded Massachusetts Healthy Start program .4 Private agencies also produce such materials. For instance, the Alina Health System and U-Care of Minnesota have published books on infant feeding in Laotian, Vietnamese, and Hmong.5 A telephone-based interpreter service is also available, and even though discussing health [3.142.142.2] Project MUSE (2024-04-17 19:48...