Status quo of palliative care in pediatric oncology-a nationwide survey in Germany

Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73) German pediatric oncology units (response rate 97%) provided information on the timing of breaking bad news, place of death, orchestrating palliative care at home and on the ward, integration of services and staff, funding of palliative care, bereavement services for siblings and parents, educational needs, level of self-satisfaction, and designated integrated palliative care services for children with cancer. More than 60% of children with malignancies died as inpatients in 2000, fewer than 40% at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, and nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. Many health professionals working on pediatric cancer units in Germany provide palliative home care in their free time without any payment. They predominantly use their private vehicles and often are unclear about the legal background and insurance arrangements covering their provision of care. The data suggest an important need for education about palliative and end-of-life care. The majority of children dying from cancer in Germany do not have access to comprehensive palliative care services at home. Our study highlights the necessity of incorporating the palliative paradigm into the care of children with cancer. Barriers to its implementation must be identified and overcome.     

An overview of public sector financing for pediatric home care: Part 2

This article is the second of a two-part series providing an overview of the public sector financing plans for children who require pediatric services at home and in the community. It is intended to assist families and health care professionals in accessing services that would alleviate some of the costs of long-term care.     

An overview of public sector financing for pediatric home care: Part 1

This article is the first of a two-part series providing an overview of the public sector financing plans for children who require pediatric services at home and in the community. It is intended to assist families and health care professionals in accessing services that would alleviate some of the costs of long-term care.     

Developing a quality home care program for children

Many children who might have died or been institutionalized before can now be cared for in the home by their families with an increase in home care and high technology services. Home health agencies must respond to this need by initiating and developing quality pediatric home care programs.     

Factors influencing use of home care and nursing homes

AIM: This paper reports a study comparing the characteristics of patients who use home care services and those who are cared for in nursing homes, and identifying the factors that influence the use of these care settings. BACKGROUND: The increase in the functionally dependent older population has led to an increase in the number of nursing homes and home care agencies. It has become clear that, rather than disputing which is the better of these options, it would be better to determine the characteristics of patients who use the two long-term care services. Gaining an understanding of the unique characteristics of patients who are cared for by home care agencies and those who are cared for in nursing homes will be imperative for reforming and developing long-term care systems. METHOD: The research model was based on the Anderson Model of Health Services Utilization. Interviews were conducted with 99 stroke survivors from two home care agencies and four nursing homes, and their family members, between May and December 2001. RESULTS: The patient characteristics that predicted greater use of home care rather than nursing home services were: being married, poor physical function, impaired cognitive function, higher rates of comorbidity, various medical complications, and/or number of catheters (e.g. urinary catheter, naso-gastric tube). CONCLUSION: Contrary to the findings of previous studies conducted in countries with ageing populations, our findings indicate that in South Korea home care agencies, rather than nursing homes, provide care for severely impaired patients. This may be due to differences between countries in their long-term care systems and cultural attitudes toward end-of-life care. Our results will contribute to the development or reformation of long-term care systems in countries with ageing populations, and to the development of strategies for increasing access to these services.     

Bringing children home: bridging the gap between inpatient pediatric care and home healthcare

Pediatric home care is an emerging need. Eleven years ago, six community-based, not-for-profit home care agencies in New Hampshire and Vermont took action by progressively forming the Visiting Nurse Association Health System of Northern New England, Inc. (VNAHSNNE) workgroup to improve pediatric home care. The focus of a pediatric home care initiative called Bringing Children Home was created to provide enhanced training for pediatric nurses and bridge the gap between inpatient pediatric care and home care, thus improving home care for children with complex medical needs. The goal of the workgroup is to enhance the transition from hospital to home, ultimately providing improved quality care to the patient and the family.     

以家庭为中心儿科护理模式创建与评价

目的：探索以家庭为中心儿科护理模式,提升患儿及家长的满意度和患儿安全。方法：创建以家庭为中心儿科护理模式,包括制定以家庭为中心儿科护理政策,配备数量充足和资历合格的护理人员,明确总责护士和责任护士的具体职责,对临床护理人员进行以家庭为中心儿科护理理论和实践的培训与考核,研制工具以评价护理人员执行以家庭为中心护理措施的情况,评价以家庭为中心儿科护理模式的实施效果。结果：患儿家长对以家庭为中心儿科护理模式的总体满意度为93.5%,患儿安全指标如给药错误发生率、跌倒/坠床发生率明显下降。结论：把以家庭为中心儿科护理理念转化为行动,深入到儿科护理实践的方方面面是一个长期持久的过程。而在患儿危机时刻,让家长和孩子在一起更是一个巨大的挑战,需要医护人员和患儿家长共同努力。     

Providing pediatric palliative care through a pediatric supportive care team

We expect children to live to adulthood; however, children do die. Some die from diseases they are born with, others from accidents or illnesses. The devastating effects associated with the death of a child can be lessened by providing palliative, hospice, and bereavement care. At St. John Hospital (SJH) in Detroit, MI, the services that provide care for children chartered the Pediatric Palliative Care Committee. The committee brought together staff from the inpatient pediatric unit, cancer center, home care, and hospice care services within the St. John Health System. Utilizing established staff and services, this group began to provide care for children with potentially life limiting illnesses in a coordinated, multidisciplinary team approach. The positive outcomes of this approach include an overall increase in patient and family satisfaction with care, a decrease in the number of emergency room visits and inpatient hospital stays, and an increase in patient and family informed decision making and goal setting. Positive outcomes for the staff include support in caring for children with life limiting illnesses and an increase in satisfaction with the care they provide.     

A comparative study of the financing, provision and quality of care in nursing homes. The approach of four European countries: Belgium, Denmark, Germany and the Netherlands

A comparative study of the financing, provision and quality of care in nursing homes. The approach of four European countries: Belgium, Denmark, Germany and the Netherlands As result of an increase in the numbers of frail elderly people, most European countries are facing problems with the financing and provision of services by nursing homes. At the same time, the expectations of quality of these services continue to rise. The main question investigated in this study was that of how countries approach the problems of financing and service provision by nursing homes and, at the same time, attempt to increase the quality levels in these institutions. The study was conducted in Belgium, Denmark, Germany and the Netherlands. A study was made of the relevant literature and questionnaires were sent to experts in each country. The four countries are addressing the problems of financing and sufficient service provision by controlling the use of nursing home services. In addition, financial problems are approached by extending co-payments, encouraging cheaper forms of care and putting pressure on nursing homes to operate at lower costs. Problems in the provision of care are addressed by applying more selective admission criteria and offering alternative forms of care outside the nursing home. As a result nursing home beds are used for those with the greatest care-dependency. Nursing home services are adjusted to rising quality expectations by offering a greater range of provision, decreasing the number of residents per room, improving comfort and improving the training of nursing staff. Another way to increase the quality of care is to separate the housing and service functions. Many nursing homes nowadays collaborate intensively with other facilities for the elderly to cope with all these problems and changes. The workload for nursing home staff has increased because of the increasing care-dependency of residents, the demand for higher quality of services and the financial problems.     

Where infants die: examination of place of death and hospice/home health care options in the state of Wisconsin

Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening condition are dying, (2) agency services available to dying infants and their families, and (3) utilization of these services for infants within the state of Wisconsin. We collected information from death certificates for infants whose cause of death was either congenital anomaly or condition of the perinatal period, such as hypoxic ischemic encephalopathy or prematurity. In addition, we surveyed all hospice and home health agencies in Wisconsin to determine their ability to serve and whether they were utilized for this same population. During 1992-1996 in Wisconsin, state records indicate that 2591 infants died: congenital anomalies or conditions of the perinatal period resulted in 1538 (60%) of these deaths. Of the 508 infant deaths from congenital anomalies, 46 (9%) occurred at home. Of the 1030 deaths from conditions of the perinatal period, 16 (1.5%) occurred at home. Only 36 (40%) of the 91 hospice/home health agencies that responded to our survey provided services to the pediatric population between 1992-1996. During this time, only 11 agencies provided care for 20 infant home deaths, comprising 32% of infant home deaths reported to the state in that same time period. In comparison to adults and older children, we found a low home death rate for infants with a life-threatening condition. To clarify these findings, we discuss barriers to infant home death.     

Providing home care services in a for-profit environment

It is no surprise that politics and ideology will determine the future of home health and long-term care. Those same forces will also dictate whether home care services will become more or less dependent upon federal support. At the moment the prospects are not promising. Over the last several years our national reimbursement policies have pointed toward more and more stringent use of Medicare home health care benefits, despite the assumptions (and the data) that prospective payment systems might legitimately increase their use. The implementation of tight cost limits, consolidation to ten regional fiscal intermediaries, and increased claim denials have signaled home care agencies that cost containment is the aim of the present conservative administration. Private insurance companies, however, have begun to examine the prospects for long-term care and home care policies. Presently, most home care benefits are available through employment-based policies, which, of course, are nearly useless to the elderly, the major users of home care services. But what if businesses provided more comprehensive health care policies so that their employees could have better protection in the case of long-term illnesses? What if the giant corporation such as IBM, Xerox, General Electric, General Motors, and so forth, established programs to underwrite the cost of long-term care? What if private insurance companies attempted to spread the risks among thousands of policy holders so that long-term care insurance premiums were affordable to most older Americans? Rather than new sources of funding, it is more reasonable to expect that the financing of home care services will be reshaped by innovative reimbursement strategies. The future will probably bring prospective, resource-sensitive, or capitated schemes. There are no easy remedies. We must secure the participation of all sectors of our country--both public and private--in a cooperative endeavor. And at the same time we are struggling to reshape the home care financing system, we must continue the effort to reshape the delivery system itself, because the two go hand-in-glove. It is only then that we can begin to allay one of the major deficiencies of our present health care system--the enormous gap in providing and paying for home health care.     

End-of-life nursing education consortium for pediatric palliative care (ELNEC-PPC)

Pediatric nurses must often care for children with life-threatening illness. Although the child may be a neonate with multiple organ failure, a young adolescent diagnosed with HIV, or a 7-year-old child involved in a serious bicycle accident, pediatric nurses are an essential part of the interdisciplinary team that plans, organizes, implements, and manages the care of these children and their families. To date, more than 600 pediatric nurses have attended a national End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) training program. Many of these nurses have returned to their institutions dedicated to making a difference in the palliative care provided to children and their families. Because pediatric palliative care education is so important, many trainers have incorporated ELNEC-PPC into their nursing orientation, annual competencies, and undergraduate and graduate nursing education. They are developing standards of care and serve on key hospital/hospice committees, such as policy, education, clinical care, and ethics committees. This article showcases various activities of ELNEC-PPC trainers and demonstrates their commitment to improve pediatric palliative care not only in their institutions but also on local, state, national, and international levels.     

The impact of social stressors and social networks on pediatric medical care use

Substantial differences in the use of pediatric medical resources reinforce the need for identifying and understanding factors that influence the use of medical services for children. This research assesses the simultaneous impact of sociodemographic characteristics, health attitudes and beliefs, psychologic distress, social stressors, and social networks on the use of pediatric acute care services during a 12-month period. Using a prospective longitudinal study design, data were obtained on 513 children and their families enrolled in a prepaid group practice. Linear modeling results showed that health attitudes and social networks were important predictors of acute care utilization in addition to child's age, birth order, baseline health status, and ethnic group. The authors were able to show significant effects for network size, dispersion, and tendency to use one's network members. Individuals with large nondispersed networks are more likely to use pediatric health services, apparently due to the transmission of the networks' pro-medical care health beliefs. Also the tendency to call on network members modifies an individual's propensity to seek care for minor pediatric medical problems and can make a difference by as much as 1.6 visits per year per child for acute care episodes.     

An Introduction to Pediatric Home Health Care

purpose . To provide an overview of the delivery of home health care services to pediatric patients
population . All pediatric patients
conclusions . Institution-based nurses are integral in making referrals for home health care services and assuring home health care agencies have the needed information for providing seamless services.
practice implications . Institution-based nurses are the first line in the transition to home and are key members in making the transition happen without unnecessary difficulty for the child and family. This article presents pragmatic information about home health care agencies and how they operate so that institution-based nurses can maximize the benefit their pediatric patients receive from home health care.     

Quality in pediatric nursing care: children's expectations

Children's perceptions of pediatric nursing care have not been systematically taken into account in the development of the quality of care. Usually, parents have evaluated children's care and its quality. The purpose of this study was to examine children's expectations concerning the quality of pediatric nursing care by interviewing 20 preschool and 20 school-aged children in Finland. Twenty of them had insulin-dependent diabetes mellitus (IDDM) and visited the hospital on a regular basis, and 20 were treated on a surgical ward for a short period. Using content analysis, the interviews were coded and categories and subcategories identified. The children's expectations concerning the quality of nursing care were related to the nurse, nursing activities, and environment. They expected the nurses to be humane and reliable, have a good sense of humor, and wear colorful clothes at work. Both the nurses and the parents were expected to take part in nursing activities. The children expected from nurses, in particular, entertainment, educational, caring, and safety activities, while parents were expected to relieve fears and longing and to provide company. The children also emphasized the role of other children as part of good care. The results demonstrate that children are capable of offering valuable insights into the quality of pediatric nursing care. The results open new avenues for strengthening children's perspectives on pediatric nursing.     

ACT--for pediatric palliative care

There are approximately 400,000 children living in America with life-threatening conditions, and every year approximately 55,000 children die. Many of these children suffer at the time of their death due to lack of aggressive symptom management. While curative medicine is always the primary goal of treatment, there may come a time when parents must choose another option of care for their child. Aggressive Comfort Treatment (ACT) is the option that will make the difference in the life and loss of a child. ACT proposes aggressive symptom management with attention to psychosocial and spiritual needs. Allowing the individual and family to have a voice in the dying process, palliation is pursued just as aggressively as cure once was. In support of ACT, the American Academy of Pediatrics (AAP) recommends the development and broad availability of pediatric palliative care services (AAP, 2007). Promoting life enhancement rather than life extension, ACT will have a monumental impact on the care of a dying child.     

Strategies for improving pediatric services in Japan

The shortage of pediatricians and emergency medical care for children is an issue of great concern in Japan. This study attempts to identify the problems in children's medical care and their causes. With multiple secondary data sources, we found that over 80% of outpatient pediatric services were provided by clinics, that over 95% of clinics were closed on holidays, Sunday, and Saturday night, that among the children's illnesses respiratory ailments were dominant and were generally acute and required immediate treatment or consultation, and that the revenue rates from providing services for children were lower than those for adults. That fewer clinics are open on Saturday night, Sunday and holidays, and workday evenings may be the main reason why it is difficult for children to find pediatric services outside of normal working hours. Lower revenue rates may be one of the key reasons why the number and rate of clinics and hospitals providing pediatric services continue to decline, and fewer physicians are willing to provide services for children. The findings in this research would provide important information of multiple dimensions for the governments to make efforts to improve pediatric services in Japan. Our proposition is to prompt pediatric specialists and internists who can treat pediatric cases in clinics to provide pediatric service systematically and alternatively at night, and to adjust the fee-for-service scales of pediatric services.     

Pediatric palliative care: a conceptual analysis for pediatric nursing practice

Although there have been significant advances in medical technology, thousands of children continue to die annually. Pediatric palliative care is a relatively new field and has not been well defined in the literature. Therefore, the purposes of this article were to provide a concept analysis of pediatric palliative care that presents pediatric nurses with fundamental information regarding this concept and to increase their ability to understand, identify, provide, and subsequently meet and enhance the needs of those children with a life-limiting illness and their families. With this enhanced understanding of pediatric palliative care, pediatric nurses will continue to improve and provide quality, safe nursing care for this vulnerable population of children with life-limiting illnesses.     

小儿急性胰腺炎的围术期护理

[目的]总结小儿急性胰腺炎的围术期护理措施。[方法]回顾性分析8例急性胰腺炎惠儿行手术治疗的临床资料。[结果]本组病人均顺利完成手术,术后痊愈7例,并发胰腺假性囊肿1例。[结论]加强小儿急性胰腺炎的围术期护理是手术成功的重要保障。     

The older adult: a comparison of long-term care in Glasgow and San Francisco

Population trends show an increasing proportion of people older than 65 years of age. This report aims to describe the facilities/services accessible to the older adult living in Glasgow, Scotland and in San Francisco, United States of America. This comparative study serves to develop a broader understanding of what is involved in the process of ageing, and describes how these two cities are responding to the needs of older people. Long-term caring provision is complex and involves multiple agencies, often leaving both lay and professional individuals ill-informed as to which services exist and how best to use them. The nurse can be instrumental in providing information, viable alternatives and services. In this article, options available for caring of the older adult and financing of care are discussed along with a number of recommendations based on observations described, data collected and literature researched. With the advent of care being provided in the community, there is now a continuum of services ranging from independent living at home to dependent care in hospital. Whether an individual remains at home depends on the availability and affordability of, and access to, other resources/facilities. Creative alternatives are needed for care of the older adult in this millennium. This report describes the need for an integrated system of care, which can adjust to variations in clients' needs. Progressive care facilities, intergenerational sharing, community volunteer service programmes for the older person and Edenizing are a few recommendations discussed by the authors.