ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_1

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

Although childhood is supposed to be a time of well-being, many of our nation's children have significant, continuing physical health problems that make them distinctly different from their healthy peers As a result, these children face special challenges as they grow up This article explores the implications of growmg up with a physical difference by focusing on four issues Why are physical differences important? To what extent can we appropriately generalize across diagnoses? What are the developmental and familial consequences of chronic health impairments? What can be done to improve the situation? The author discusses developments contributing to a heightened concern for these children and reviews objective data underlymg a noncategorial approach to childhood chronic illness Attention is paid to the consequences of a chronic illness for the child, the family, and the school--and how health care providers can minimize the negative consequences As a whole, the evidence indicates that chronically ill children and their families can be effectively helped within the context of care normally provided.

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_2

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

The chronic illnesses of childhood as a whole show similar trends in rates of incidence and prevalence, within this general class, subgroups of the illnesses have distinct epidemiological characteristics and different histories of response to improvements in medical technology This article selects 11 disorders as representative of the large class of childhood chronic illnesses It reviews trends in the contribution of these illnesses to the overall morbidity and mortality rates among children The current survival patterns for children with these illnesses are detailed in light of the probable demands generated for health care providers by similar patterns of survival It is likely that these children will place heavy demands on the health care system for the foreseeable future Epidemiological trends and improvements in survival patterns associated with these illnesses raise perplexing questions of resource allocation New knowledge is needed to address emerging problems.

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_3

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

Methodological problems make it difficult to determine whether or not the rate of separation or divorce among families caring for a child with a chronic life-threatening illness such as leukemia, spina bifida, or cystic fibrosis is higher than expected The best studies indicate that the probabilty of divorce is not higher, but some contradictory evidence suggests the need for further investigation Parents who divorce rarely attribute their separation to the child s illness Since 20% to 50% of parents report a strengthening of their marriage, research on effective family coping should receive high priority.

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_4

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

Even though survival rates have improved dramatically, childhood cancer remains a life-threatening illness How can patients and families be helped to deal with the chronic stressors inherent in such a disease? This article focuses on one aspect of this question promoting positive experiences at school It describes a workshop offered for the purpose of providing information about childhood cancer to public and private school teachers in Charleston, South Carolina Pre- and post-workshop assessments were done of the participants' knowledge of medical facts about childhood cancer, their attitudes toward children with cancer, their knowledge of the emotional impact of cancer on families, and their beliefs about how they would respond to a student with cancer The results are examined in terms of changes in the teachers' attitudes and objective knowledge and factors which predict the pre-workshop levels of those variables Finally, implications of the results are examined, in light of the utility and effectiveness of such an intervention as a means of "primary prevention".

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_5

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_6

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

Rural Efforts to Assist Children at Home (REACH) is a service/demonstration and training project designed to provide specialized health care and case management services to medically dependent children in a 16-county area in central Florida REACH nurses, acting as Health Care Coordinators, provide instruction, consultation, coordination, and supervision of health care services in collaboration with tertiary care physicians and services at the University of Florida Health Center Patients include infants, children, and adolescents with a wide variety of chronic illnesses including leukemia, muscular dystrophy, pulmonary disorders, failure to thrive, and seizure disorders In addition to extensive work with families in the home, the REACH program incorporates a feedback system for its nurses, a progress-oriented record system, carefully designed agreements between tertiary care centers and community agencies, and an innovative training program for its nurses REACH intends to serve about 1000 children during its 3-year demonstration phase Success will be based on careful monitoring of costs, family functioning, and school attendance lf successful, the project will provide a model for the structured utilization of health and social services for families with medically dependent children.

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_7

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

Pediatric Home Care (PHC) of Albert Einstem College of Medicine was designed as a special ambulatory care unit for children who are seriously or chronically ill and whose needs were not being met successfully through conventional programing Services include monitoring the patient's care, delivering direct services in the home, clinic, and hospital, teaching therapeutic programs to the family and patient, coordinating services, patient advocacy, health education, and supportive counseling Each patient has a core team consisting of a generalist pediatrician, a PNP, and the patient's family Visits are provided in the patient's home as needed, as well as in the traditional locations of the clinic, the inpatient units, and the PHC office The program accepts patients with serious medical problems and who face any of a series of other difficulties, including especially complex management problems that cannot be handled well in the customary outpatient settings, unstable family settings, or extended hospitalizations Because it is not restricted to any single type of disease, the PHC provides a model that is applicable in a wide range of medical and community settings Results of a program evaluation show that PHC is an effective intervention that has positive mental health outcomes and improves satisfaction with care.

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_8

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

Many children with chronic illness or handicapping conditions may not need continual or frequent institutional care, provided that suitable home care services are available Yet, planning and experimentation with the concept of pediatric home care is just begining on both the national and local levels and the concept of home care has yet to become widely understood and accepted As a result, health planners and policy makers often fail to realize the potential advantage of home care to children, to families, and to society Instead of seeing it as the most humane and effective way of caring for the chronically ill child, they see it as an increased financial burden They also lack the perspective needed to realize that home care is ultimately the most cost-effective health care alternative, since it involves investing in people rather than in buildings or equipment This report attempts to disseminate more widely the concept of home care by recounting a 2-year experience with a hospital-based pediatric home care service.

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_9

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor

摘要:

Chronically ill chidren tend to be sick on a short, repeated basis that is hard to anticipate Because of the short-term nature of each period of illness, these students are not eligible for traditional home teaching To address their special educational needs, the Chronic Health Impaired Program (CHIP) was developed In 1980, 547 students were enrolled When these children are unable to attend school, special CHIP teachers secure their homework and instruct them in the home or hospital The specific objectives of the program are (a) to increase school attendance, (b) to decrease the nonpromotion rate, and (c) to maintain academic achievement In addition, CHIP provides counseling, peer tutoring, and parenting services to children and families enrolled in the program Comparative test scores and absentee rates indicate success in achieving the program's goals.

ISSN:0273-9615    

DOI:10.1207/s15326888chc1202_10

出版商:Lawrence Erlbaum Associates, Inc.    

年代:1983

数据来源: Taylor