Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

住院患者关怀体验的质性研究

目的了解患者在住院期间对护理人员提供关怀服务的体验,帮助护理管理者更好地认识患者的需要和护理服务的效果,为提高护理服务质量提供依据。方法 2011年12月至2012年5月,采用目的抽样法选取某三级甲等医院内科、外科、妇产科、肿瘤科的住院患者24例,运用现象学研究方法对其进行观察和深度访谈,将记录的资料按Colaizzi步骤进行分析。结果对访谈结果进行分析,提炼出的5个主题为:护患人文关怀认知不足、护士服务态度良好、护理关怀服务质量参差不齐、护士对患者心理支持不足、服务硬环境有欠缺。结论护理管理者应加强培养护士的人文关怀意识,提高护士的关怀能力,同时重视对护士的人文关怀,从而使护士更好地为患者提供关怀性服务。     

The specialist palliative care nurse: a qualitative study of the patients' perspective

BACKGROUND: Relatively little is known about patients' perceptions of the work and role of the specialist palliative care nurse. Understanding the patients' perspective can help to evaluate services, improve quality of care, and identify misunderstandings. OBJECTIVES: To explore the experiences of those who said that they had a 'terminal illness', focusing on patients' perceptions of the work and role of these nurses. DESIGN: Qualitative study with narrative interviews. SETTING: England and Wales. PARTICIPANTS: Forty-one people recruited through those working in hospices, community nurses, general practitioners, support groups, a national newspaper, and a conference on palliative care. Twenty-five people talked about the work of specialist palliative care nurses. METHOD: Interviews were fully transcribed; followed by a thematic analysis with constant comparison. RESULTS: Patients valued the nurses' work, particularly their advice on practical matters, information given about their disease, emotional support, advice on symptoms, and help with communication. They were glad that help was readily available. However, some patients who had been referred to the service did not realise that specialist palliative care nurses may be involved at a relatively early stage in a person's illness, and sometimes felt distressed by an early referral. One woman felt she had not had the emotional support she needed and another knew of women who had been upset because these nurses had discussed topics such as place of death 'too early'. However, people recognised the difficulties nurses faced in their work. CONCLUSIONS: Although our study differs from other studies, particularly in the way people were recruited, our findings support previous studies that have shown that specialist palliative care nurses are highly valued by those who have a terminal illness. It is important for people to understand that these nurses may be involved from the time of diagnosis and that roles have changed.     

413名护理人员对现代护理角色取向的调查分析

目的 了解二级甲等医院的护理人员对现代护理角色取向认识情况以及比较不同教育水平和工作环境的护士对护理角色取向认识情况。方法 用现代护理角色取向认识量表，对两所二级甲等医院413名护理人员进行调查。结果 护士对现代护理角色取向的认识差异无显著性。结论 需重视对护士现代护理观念的教育，促进其角色转变。提示护理教育和培训要增加现代护理观念和实践方面的内容，对护理管理者如何运用新观念、新思路、新方法培养复合型护理人才具有一定意义。     

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.     

广州地区29例血友病患儿家庭治疗及护理现状调查

目的了解广州地区血友病患儿家庭治疗与护理现状,提高家庭治疗与护理水平。方法对广州市血友病治疗中心登记在册的29例广州地区血友病患儿及其父母进行问卷调查,主要内容为患儿一般情况、2006年家庭治疗与护理现状及FISH评分（Functional Independence Score in Hemophilia）。结果只有少数血友病患儿开展凝血因子家庭注射,凝血因子使用量明显不足,治疗效果与血友病患儿家庭护理状况不佳、血友病患儿未能获取有效社会支持有关。结论血友病专业医护人员在指导家庭治疗和护理服务方面只发挥了有限的作用,对血友病患者的健康教育和护理与国际水平相比存在很大差距,缺乏有经验的血友病专业护士．缺少必要的医疗资源,未能建立起紧密的医患合作关系。     

Feasibility and Acceptability of Providing Nurse Counsellor Genetics Clinics in Primary Care

An increasing number of children are likely to be referred for genetic investigations as a wider range of tests becomes available. Despite the growing expectation that nurses in primary care will provide support to parents of children referred for genetic investigation, previous studies have highlighted the limited support from staff in these services. The aim of this study was to investigate the contribution of health visitors (public health nurses) to supporting parents of children referred for genetic investigation.
A questionnaire based survey of 345 health visitors was undertaken across Northern Ireland during Nov–December 2003 wit ha response rate of 56.2% ( n  = 194). Many health visitors were unsure of the location of the regional clinical genetics service and overall respondents reported limited contact with staff from these services. The majority of health visitors were not informed that children on their caseload had an appointment. It was found that health visitors did not routinely visit parents of children referred for genetic investigation and viewed this as the responsibility of the regional genetics services. Furthermore their confidence in supporting parents was significantly related to their previous contact with genetic services and knowledge of genetics in relation to their role as health visitors.     

Parents' perceptions of quality health care

PURPOSE: To examine differences in definitions of health care quality and the importance of indicators of quality between consumers with dependent children and consumers with no dependents. STUDY DESIGN AND METHODS: This was an exploratory study using a convenience sample of 229 consumers--96 with one or more dependent children and 133 with no dependent children. Consumers were asked four open-ended questions as to their definitions of health care and nursing care quality. Consumers then rated the importance of 27 indicators of quality care. RESULTS: There were no differences between parents with dependent children and other consumers in how quality care was defined. Important indicators of quality nursing care to parents with children were: Being cared for by nurses who are up to date, well informed, and certified in their specialty; being able to communicate with the nurse; spending enough time with the nurse; and teaching by the nurse. Although having access to midwives was of lowest importance to consumers overall, it was significantly more important to subjects with children (p < 0.05). Getting care and services when needed was also more important to parents than to consumers without children (p = 0.05). Parents gave more importance to their interactions with the nurse than did subjects without children (t = 1.93, df = 229, p = 0.05). CLINICAL IMPLICATIONS: Parents and consumers without children have similar views of what constitutes quality nursing care--having nurses who are concerned about them and their children, demonstrating caring behaviors and staying attentive to their needs, being competent and skilled, communicating effectively, and providing the teaching needed for managing their own and their family's health problems.     

Expanding nurses' roles in telemedicine & genetics services

This article presents nursing roles in telemedicine and genetics services. Telemedicine offers a promising solution to delivering comprehensive genetics services to children and families when travel, distance, and shortage of genetics professionals interfere with access. Nurses are already using telemedicine to provide nursing and healthcare services but have become involved in the delivery of genetics services via telemedicine only recently. Involving nurses in the development of telemedicine systems for genetics services is essential as they serve as a vital link between the patient, the healthcare system, and the community. Some of the emerging nursing roles in telemedicine include genetic family-health risk assessment, evaluation and counseling at the advanced practice level and at the primary care level, referral, participation in genetic evaluation and counseling, and family- and community-based care coordination and management. The Genomics Nurse Case Coordinator role as described by is presented as a means of further expanding the maternal-child health nursing role in supporting women and families to manage their own genomic health. Telemedicine offers nurses an opportunity to assure and provide quality genetic healthcare tailored to the individual and family's specific needs within their own community.     

The developing role of children's nurses in community palliative care

This article addresses some of the contemporary issues in relation to providing palliative care for children in Ireland, particularly focusing on the creation of the specialist palliative care nursing outreach posts. The recent publication of an Irish national policy on palliative care for children with life-limiting illness is welcome news for paediatric nurses in Ireland. Children are valued members of society and have a right to receive quality health care and support appropriate to meet both children and the families' precise needs. However, community services for children with life-limiting illnesses remain inadequate, with many parents and families struggling to provide palliative care for children in the home. Currently, community nurses, who are not always registered children's nurses, are providing palliative care for children at the end of life. These nurses may not fully understand the specific needs of critically or chronically ill children and their families. In addition, there are no specific palliative care educational programmes in Ireland with regard to end-of-life care for children. The challenges of providing palliative care to children and their families in relation to symptom control, controversial ethical and legal issues, and emotional and practical support, mean that advanced knowledge is required in order to progress the agenda and thus provide excellence in children's palliative care in Ireland. It is important that the agenda is moved forward so that children and their families requiring palliative care and nursing support do not suffer from a lack of professional provision for their needs.     

Engaging Beyond the Bedside Nurses in a Large Pediatric Health Care System

Health care systems have a growing need to expand the nursing role to meet the needs of the patients and the community they serve. As the nursing role expands beyond clinical operations, there is a greater gap in connecting with other nursing colleagues. Additionally, engaging all nurses throughout health care systems is a challenging task for nursing leaders. This article offers a systematic way to identify and engage nurses working in positions beyond the bedside (BTB) within a large health care system. Nursing leaders implemented an initiative to connect BTB nurses to the chief nursing officer and the nursing strategic plan. Nursing leaders created innovative ways to engage, connect, and professionally develop BTB nurses within the healthcare system.     

Building the Information Infrastructure Required for Managed Care

Purpose: To describe the information used by health care purchasers, policymakers, and administrators when making the decisions required in a managed-care environment and what the profession must do to develop an information infrastructure to demonstrate its contribution to patient outcomes.
Scope: Managed care has created a competitive environment for all health care organizations in which they must offer the best value for their dollar. The purchasing processes germane to managed care rely heavily on information for the selection of cost-effective providers and the provision of efficient care. lnformation used in these processes is derived from transaction systems that largely describe physician and other health care worker's services, but not nursing care. Data analysis by computers requires that data be obtained using a standardized language. Currently, nursing lacks a unified approach to the use of a standardized nursing language.
Conclusions: Individual nurses, nurse managers, executives, and educators should strive to develop an information infrastructure that will overcome barriers. Nurses should both adopt a unified approach to a standardized language, and develop a nationwide information infrastructure that will demonstrate nursing's contribution to patient outcomes.     

整体护理病历中常见问题及分析

目的 探讨整体护理病历中存在的问题并分析其原因。方法 随机抽样整体护理病历60份,分为A组(工作5年以上护士书写)和B组(工作5年以下护士书写),每组病历30份,进行统计分析。结果 从护理资料收集、护理诊断及护理计划等方面,B组发生错误的百分率均高于A组,并以护理诊断最为明显。结论 加强护理诊断训练及年轻护士的培养和指导是提高整体护理病历质量的关键。     

Planning a Continuum of Care in Child Psychiatric Nursing A Collaborative Effort

A guide for providing a continuum of care for children in need of psychiatric services from the least restrictive services (outpatient care), to a moderately restrictive setting (partial hospitalization), to the most restrictive setting (inpatient care) is described. Movement along the continuum is facilitated by the nurse case manager. Concepts from three theoretical frameworks are integrated to define goals, criteria, and expected outcomes for each level of care along the continuum. They are Neuman's (1982) systems model for nursing practice and education, Caplan's (1961) model for primary prevention of mental disorders in children, and Frances, Clarken and Perry's (1984) differential therapeutics. The continuum provides a guide for nurses and other health care providers to achieve high quality care as economically as possible. It also enhances self-care and self-responsibility for families of disturbed children by offering a sequential graded system of care along the health-illness continuum.     

A review of prison health and its implications for primary care nursing in England and Wales: the research evidence

Aims and objectives. To provide a systematic overview of the policy and practice literature concerned with the primary healthcare needs of prisoners in England and Wales and to address the implications of these health needs for nurses working in prisons. Background. The recent reorganization of the prison healthcare system, which has brought prison health services in England and Wales within the National Health Service, has major implications for the role of prison nurses. Nurses in prisons are increasingly providing services to promote the health of prisoners, in addition to making assessments of health need and treating health problems. Methods. The review examined literature from 1995 to date using standard review techniques adapted to be both sensitive and inclusive and with high recall because of the unexplored nature of primary health care in prisons. Results. Findings are identified in three main areas: the general health needs of prisoners, health promotion and chronic disease management. In all these areas, the health needs of the prison population are much greater than the community as a whole, resulting in a high demand for primary care services in prison. However, the prison setting can militate against providing good primary care services in prison. Conclusions. More research has been carried out into the health needs of prisoners than into the provision of primary care nursing services in prisons. Further research is needed into primary care nursing in prison to meet the health needs of prisoners effectively. Relevance to Clinical Practice. With the reorganization of prison health services, health provision in prisons is increasingly primary care focused. This presents new challenges to nurses working in prison to provide a primary care service, which meets the identified health needs of prisoners.     

There really is a difference: home care competencies

BACKGROUND: More nurses are turning to home care agencies as sources of employment because of mergers, alliances, and increased emphasis on outpatient services. The unique differences in the home care nursing role necessitate adequate orientation and ongoing competency validation. METHOD: A review of relevant nursing literature was conducted. The author also relied on her experiences as a home care educator. RESULTS: Nurses who enter the specialty of home care nursing can expect to learn specific competencies that are unique to home care. CONCLUSION: Specific competencies unique to home care are proposed. There is scant published research regarding home care competencies to date.     

Primary care groups and trusts: a threat or an opportunity for the development of community-based nursing in England

AIMS OF THE STUDY: To examine the role of Primary Care Groups and Trusts (PCG/T) in relation to nurses working in general practice and community health services. BACKGROUND: Over the past two decades there have been rapid changes in the numbers and roles of nurses working in primary care and community based settings. The establishment of Primary Care Groups offers health care professionals, including nurses, the chance to develop local primary care services and to integrate community and primary care nursing. These developments may offer opportunities or pose threats to nursing staff. RESEARCH METHODS: Data are drawn from a longitudinal study of a randomly selected sample of Primary Care Groups in England (n = 72). In a second survey of Groups carried out in autumn/winter 2000, Primary Care Group chairs and chief officers were interviewed by telephone. RESULTS: Response rates were 97% for both chairs and chief officers (69 of each). Chairs indicated that in most areas Primary Care Groups were consulting with local nurses to develop policy. Fifty-seven (85%) reported that investment in nursing staff and nursing services was a high priority in their area. Twenty-eight (41%) indicated that nurse-led services designed to increase patient access had already been established in their area, and 20 (29%) were planning new nurse-led services. Many developments had been initiated by Primary Care Groups. Initiatives to integrate community and general practice based staff were underway in most areas. CONCLUSIONS: Primary Care Groups and Trusts are initiating changes in general practice and community based services which are likely to have long-term and important implications for nurses in terms of their roles, conditions of work and future careers. It is important that nurses are consulted and are involved in developing and implementing policy change.     

Child Care Health Consultation: An Ecological Model

ISSUES AND PURPOSE. To present an ecological model of child care health consultation that defines the role of the health consultant as a resource and advocate within child care programs, as well as a supportive link among families, child care providers, and the healthcare system.
CONCLUSIONS. Nurses have provided health consultation to child care programs for more than 30 years and represent the majority of health consultants nationally. Pediatric nurses and advanced practice nurses are well prepared to shape and lead the development of this emerging role.
PRACTICE IMPLICATIONS. With expertise in caring for children, understanding families, and care across systems, pediatric nurses and advanced practice nurses should engage in current state and national efforts to develop child care health consultatits.