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Clinical Director, University of Central Florida College of Medicine
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Greater child and family satisfaction with their health care resource centers, family advocacy groups, and family fac-. This can be done cesses, gains in health literacy, and more effective priority with outcome measures, qualitatively and quantitatively. Respect that individual differences do occur and that they may be different from our own. There Next, we need to acknowledge that emotional, social, has been much published about specifc cultural groups. No individual training program can pos ing in difcult circumstances, bring important and unique sibly address all the differences that are possible within strengths to their health care experiences. More efective methods of teaching cultural efec ?Family-centered care is a service delivery model that in tiveness include processes for a much broader conceptual cludes the manner in which the services match the needs 1 approach. All have common themes: self-assessment, culturally family-centered care, it is not widespread. Heath care profes efective knowledge of language, and the ability to apply sionals must adopt new practices and policies, and families the knowledge at both interpersonal and systems levels. Harry recommends an approach that is a habit of refec Today there are many government agencies that have tive practice that will lead to efective parent?professional been instituted around family-centered care initiatives. The fed organizations provide recommendations that include train eral government will continue to look at funding systems ing programs to educate professionals both pre and post for programs and enact legislation to ensure that principles professionally about their role in fostering family-centered are being respected. Historically, these agencies began in an attempt to our delivery of Physical Therapy Examination, Assessment educate professionals around principles of family-centered and Intervention, it will serve to improve all aspects of the care. This confer ence set the stage for initiatives nationwide for recogniz ing the value of family-centered care in our health system. She lives with her mother, father, two plan for bringing the powers of families into our health brothers, one sister, grandmother, aunt, and four cousins in a care system. They have learned 14 follows : 12 Chapter 1 Providing Family-Centered Care in PediatriC PhysiCal theraPy to speak English, but it is not their primary language spoken at gave them suggestions for how she could play a more active role home. She rarely leaves the house Clinic visits were not frustrating anymore as the team took a except to go to church, where she is carried and doesn?t have new approach to making recommendations to the family. Her family takes her Points to Ponder regularly to the major medical center for all her medical care. Was the team being family centered when they first worked with the professionals have recommended a special educational Roselyn and her family? The family has declined such a placement Why was the family so resistant to the recommendations that and prefers to homeschool her. How should the team proceed with their recommendations as Many professionals who have seen Roselyn have tried to Roselyn gets older?
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Amant5 1Internal medicine, University Hospitals Gasthuisberg, 2Hematology Department, 3Oncology Department, University Hospital of Ioannina, Hellas 4Obstetrics, University Hospitals Gasthuisberg, 5Leuven Cancer Institute, Gynecologic Oncology, University Hospitals Gasthuisberg, Belgium 1. Introduction Cancer and especially hematological cancer during pregnancy is infrequent and its management is difficult for patients and their families, but also for their physicians since two lives with different priorities have to be considered. Treatment should adhere the standard treatment for the specific type and stage of cancer. Small adaptations can be considered in order to avoid adverse effects on fetal development. This chapter reviews the available data regarding the different aspects of diagnosis and especially chemotherapeutical treatment of hematological cancer during pregnancy. First we will discuss the general approach of a woman diagnosed with cancer during pregnancy. Second we will give a quick overview of chronic leukemia, Hodgkin and non Hodgkin disease during pregnancy and a more extended overview of acute leukemia during pregnancy. In addition, the physiological changes associated with pregnancy can mask certain laboratory abnormalities that are typically present in patients with hematological disorders (simple anemia of pregnancy, leukocytosis or gestational thrombocytopenia may temporarily hide a more serious hematological process such as leukemia) (Sadural and Smith, 1995; Doll et al. The risk of spontaneous abortion is comparable with that of normal miscarriage and there is no significant increase in the risk of maternal death, birth defects or late neurodevelopmental delays (Cohen-Kerem et al. The possible embryonic or fetal damage from radiation may be classified into two principal types. Firstly, the deterministic radiation effects, such as mental retardation and organ malformations, which arise above a threshold dose of 0. They generally manifest many years later (so-called ?late effects) and cannot definitively be associated to the radiation exposure. Examples of these effects include cancer induction and genetic effects (in the offspring of irradiated individuals). These effects do not occur in relation to a certain threshold, but it is the probability of the effect that increases with administered dose. Several studies have shown no increase in abortion, growth retardation or congenital malformation from diagnostic exposures below 10cGy (at any time during gestation)(Doll et al. The estimated fetal dose from routine radiologic diagnostic procedures is less than 10 cGy. The probability of developmental damage or childhood cancer due to embryonic-fetal irradiation of 1cGy does not exceed one in 1000, and may be only one in 10 000 or even less. These figures are very low when compared to the overall 4 6% rate of birth defects in the general population (Fenig et al. Gadolinium adds to sensitivity and specificity but crosses the placenta resulting in high fetal concentrations.
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If the patient to be transferred is a neonate, the family should be given an opportunity to see and touch the neonate before the transfer. A transport team member should meet with the family to explain what the team will be doing 88 Guidelines for Perinatal Care en route to the receiving hospital. The patient, personnel, and all equipment should be safely secured inside the transport vehicle. Patient Care and Interactions the following important components of patient care needed for either a mater nal patient or a neonate during transport should be implemented. The following components of care are specific for either a maternal patient or a neonate: Maternal patients. Uterine activity of maternal patients and fetal heart rates should be monitored before and after transport; continuous uterine activity or fetal heart rate monitoring during transport should be individualized. Neonates should be kept in a neutral thermal environment and should receive appropriate respiratory support and additional monitoring, such as assessment of oxygen saturation and blood glucose, as clinically indi cated. On arrival at the receiving hospital, the following activities are recom mended. The receiving staff should be prepared to address any unresolved prob lems or emergencies that involved the transported patient. On completion of the patient transfer, the transport team or other desig nated personnel should immediately restock and re-equip the transport vehicle in anticipation of another call. Transfer for Critical Care ^ the care of any pregnant women requiring intensive care unit services should be managed in a facility with obstetric adult and neonatal intensive care unit capabilities. Guidelines for perinatal transfer have been published and follow the federal Emergency Medical Treatment and Labor Act guidelines. In the event that maternal transport is unsafe or impossible, alternative arrangements for neonatal transfer may be necessary. The minimal monitoring required for a critically ill patient during transport includes continuous pulse oximetry, electrocardiography, and regular assess ment of vital signs. Patients who are mechanically ventilated must have endotra cheal tube position confirmed and secured before transfer. In the obstetric patient, left uterine displacement and supplemental oxygen should be applied routinely during transport. The utility of continuous fetal heart rate monitor ing or tocodynamic monitoring is unproven; therefore, its use should be individualized. Return Transport Infants whose conditions have stabilized and who no longer require specialized services should be considered for return transport. Transporting the patient back to the referring hospital is important for the following reasons. It allows the family to return to their home, often permitting more fre quent interactions between the family and the infant. Economic barriers, including those imposed by managed care organizations, that restrict or raise barriers to this movement of neonates are detriments to 90 Guidelines for Perinatal Care optimal patient care.
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Bhat and colleagues Deborah Bubela and Rebecca Landa is these five include Diane Versaw-Barnes, Heather Baj an overdue and needed addition, and I appreciate the three Atkinson, Kathy Coultes, Elliot Greenberg, all graduates of coauthors eagerness to participate. Emilie Aubert also up the entry-level program, and Kirsten Hawkings Malerba, a dated Chapter 12, as noted above. Management, has been completely written and revised I would be remiss if I did not acknowledge the support by Michael DiIenno a new author to the 5th edition. Notable completed the chapter on time despite becoming a new dad among these folks has been Mr. John Larkin, our Managing and taking on a major increase in professional responsibili Editor, who has nudged, pushed, cajoled, encouraged, but ties, and I appreciate his ability to juggle several daunting never nagged?and been largely responsible for the ultimate projects. To each and all of the folks above Adolescents by Elliot Greenberg and Eric Greenberg is a I ofer my heartfelt appreciation and thanks. Aubert 11 Autism Spectrum Disorders and Physical Therapy 403 3 Assessment and Testing of Infant Anjana bhat, Deborah bubela, and rebecca Landa and Child Development 69 Kirsten H. Malerba 12 Adaptive Equipment and Environmental Aids for Children with Disabilities 423 Emilie J. Kalisperis, and Kathleen Miller-skomorucha 14 Sports Injuries in Children and Adolescents 501 6 Spina Bifida 247 Elliot M. Greenberg Elena tappit-Emas 15 Juvenile Idiopathic Arthritis 541 7 Traumatic Injury to the Central Nervous System: Brain Injury 301 susan E. Geddes 18 Children with Obesity and the Role of the Index 735 Physical Therapist 641 Kathy Coultes Chapter 1 Providing Family-Centered Care in Pediatric Physical Therapy Elena M. Spearing Family-Centered Care providing Family-Centered Intervention Barriers to Providing Family-Centered Care Cultural Desire Families response to Medical Illness and Disability Cultural Awareness Culture Cultural Knowledge Diversity versus Sensitivity Cultural Skill Influences on Cultural Identity Benefits to providing Family-Centered Care Culture and Parental Expectations Summary the Cultural Response to Illness the Cultural Response to Disability the Cultural Response to Death and Dying children family households has decreased over the past Family-centered care 20 years despite increases in the total number of family households. The number of single-parent families, dual he notion of family-centered care was frst presented income families, adoptive families, same-sex-parent families, in the 1980s. This philosophy of care then spread Additionally, there is a ?melting pot of various cultural to cancer units, maternity wards, mental health units, and identities represented in the United States. Census various adult health care practices, where it is referred to Bureau reported that the minority population continues to as patient-centered care. Family-centered care is a philoso grow to an all-time high in 2012, with more people speaking phy recognizing that the family plays a vital role in ensuring languages other than English outside the home. Family-centered est growing racial categories continue to be Asian and Pacifc care also empowers the family to participate fully in the 3 Islander, Hispanic, and ?other. It additional challenges to health care providers who care for supports families in this role by building on the family mem 4,5 1,2 people with varying cultural and ethnic backgrounds. Historically, there has been a change in the developmen Family-centered care is the foundation of pediatric physi tal theory behind how pediatric physical therapy is provided cal therapy. This change has resulted in a shift from a re must address both the child and the caretaker when we in fex hierarchy model where a child develops on the basis of teract with a child receiving physical therapy. Similarly, pediatric care has today come in all confgurations and sizes and are not all shifted from being child focused, as in the 1980s, to currently traditional, married, two-biologic parent families.
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