Developing a pain and palliative care programme at a US children's hospital

Although a number of successful adult combined pain and palliative care programmes exist worldwide, integrated paediatric pain and palliative care services are rare. This article reviews epidemiology, definition, symptom prevalence and myths in paediatric palliative care. It then describes the development of the Pediatric Pain and Palliative Care Programme at the Children's Hospitals and Clinics of Minnesota, USA. This paediatric service aims to control acute, chronic and recurrent pain in all in- and outpatients at the hospitals, with follow-up at home. The team also provides holistic, interdisciplinary care for children and teens with life-limiting or terminal diseases, and their families. It is the only paediatric hospice provider in the state of Minnesota. One of the advantages of an integrated Pain and Palliative Care Programme such as the one described in this article, may be the provision of care in a continuum from acute, chronic or recurrent pain to palliative care and hospice care. This example shows, that integrated paediatric pain medicine and palliative care programmes can be successfully implemented in a children's hospital setting.     

New guidance materials promote family-centered change in health care institutions

Nurses can play an important role as effective change agents in helping health care agencies and institutions recognize the need to move to more family-centered models, understand the benefits of a family-centered approach, and develop strategies for implementing family-centered care. The Institute for Family-Centered Care has identified a number of areas in which many institutions wish to make changes and has been developing guidance materials that explore possibilities, highlight hospitals that have incorporated changes, and provide practical strategies and useful materials to facilitate change. Topics covered in these guidance resources include the following: Developing Family-Centered Vision, Mission, and Philosophy of Care Statements; Developing and Sustaining a Patient and Family Advisory Council; Collaborative Design Planning; Creating Children's Advisory Councils; Creating and Enhancing Patient and Family Resource Centers; Creating Patient and Family Faculty Programs; Working with Seniors and their Families to Enhance Geriatric Care; and Changing Visiting Practices--Families as Partners.     

Improving the accuracy of specimen labeling.

Accurate specimen identification is a challenge in all hospitals. A mislabeled specimen can lead to devastating consequences for a patient. In an effort to decrease the risk of potential harm caused by labeling errors, Children's Hospitals and Clinics of Minnesota successfully implemented a Zero Tolerance Laboratory Specimen Labeling process. After months of studying, charting, networking, and communicating with all stakeholders the new process led to a 75% reduction in laboratory specimen labeling errors.     

Pitfalls in Spinal X-Ray Diagnosis

Local initiative is the key for improved health care in any community, large or small. In a rural area in Washington, staff members of a small hospital became involved in plans to improve health care in their community. They presented their needs to the Washington-Alaska Regional Medical Program. The Regional Advisory Group and the National Advisory Council approved the requests and granted support for postgraduate preceptorships, a coronary care unit, an educational program for laboratory technicians, and a medical television series for physicians.     

Evaluating ambulatory care: three approaches.

The article describes three approaches to establishing an ambulatory audit program for nursing. These approaches are variations of a single methodology--that of the Joint Commission on Accreditation of Hospitals--used by the University of Minnesota Hospitals and Clinics. The authors discuss three audit topics from ambulatory care; postkidney transplant; desensitization; and well child.     

Staff counseling specialist. Responding sensitively to workers

Due to changes in the health care environment that have expanded their role, nurse administrators have less opportunity to respond adequately to employee concerns. The position of staff counseling specialist was designed to assist nurse administrators at the University of Minnesota Hospitals and Clinics meet the increased demands of their staff. The staff counseling specialist provides a means of narrowing the gap between the staff and nurse executives by addressing employee concerns such as inadequate leadership, communication breakdown, dissonant physician-nurse relations, and other matters adversely affecting the work climate.     

Family integrated care; A Florence Nightingale Foundation scholarship and international journey of discovery for improvement in neonatal care. A review of services

Family Integrated Care (FICare) is a philosophy and model of care that supports parents in becoming active members of the team caring for their baby now living in the neonatal intensive care unit. As nurses with over 25 years' experience in neonatal care and an enthusiasm to always enhance care for infants and their families, the authors wished to see first-hand how this model of care works. After being awarded a travel scholarship by the Florence Nightingale Foundation with funding by The Sandra Charitable Trust to research and study implementation of the Family Integrated Care (FICare) model, FICare is currently being implemented in the NICU at Derriford Hospital, Plymouth Hospitals NHS Trust.     

University of Iowa Hospital and Clinics: outcomes management

Delivery of quality patient care and management of patient outcomes is critical to the success of academic medical centers in the ever-changing health care market. The University of Iowa Hospitals and Clinics (UIHC) promotes quality care through the provision of organizational structures and processes that are described in this article. In addition, quality of care and outcomes management are described by members in various roles within the UIHC health care system. It is the authors' belief that understanding quality from these various perspectives helps UIHC work across departments to achieve excellence in patient care.     

Knowledge translation in family nursing: does a short-term therapeutic conversation intervention benefit families of children and adolescents in a hospital setting? Findings from the Landspitali University Hospital Family Nursing Implementation Project

In an effort to examine translation of family nursing knowledge to practice, the Landspitali University Hospital Family Nursing Implementation Project (2007-2011), was thoughtfully initiated in Reykjavik, Iceland and systematically evaluated. The mission was to implement family nursing in every department of the hospital. This publication is the first formal research report from this landmark project. The purpose of this research was to evaluate the effectiveness of a short-term therapeutic conversation intervention with families who were receiving health care services at the Children's Hospital at Landspitali University Hospital in Iceland related to childhood and adolescent acute and chronic illnesses. The therapeutic conversation was guided by Family Systems Nursing and used the Calgary Family Assessment and Intervention Models (Wright & Leahey, 2005, 2009). Families (N = 76) were randomly assigned to either an experimental group (short-term therapeutic conversation: n = 41) or to a control group (traditional care: n = 35). Parents in the experimental group reported significantly higher family support after the intervention, compared to the parents in the control group. Differences were noted between families experiencing acute versus chronic illnesses. Recommendations are made for conducting and designing intervention research with families experiencing the hospitalization of a child or adolescent.     

The perceived needs of Jordanian families of hospitalized, critically ill patients

The purpose of this study was to identify needs of Jordanian families of hospitalized, critically ill patients. The Critical Care Family Needs Inventory was introduced to 158 family members who were visiting their hospitalized, critically ill relatives. The findings revealed that > or = 80% of the family members perceived 16 need statements as important or very important. The participants ranked order needs for assurance, information and proximity the highest and needs for support and comfort the lowest. Specifically, the most important needs of the families were to receive information about the patients, to feel that the hospital personnel care about the patients and to have the information given in understandable terms. Results of this study indicated that Jordanian families had specific and identifiable needs. Providing families of critically ill patients clear, simple and updated information about the patients, and assuring them about the quality of care the patients receive, should be essential components of the critical care nursing delivery system.     

Development of a Canadian family medicine pharmacy practice experience programme

Faculties of Pharmacy in Canada must currently provide students with at least 16 weeks of structured pharmacy practice experience. In recent years, the College of Pharmacy at Dalhousie University in Halifax, Nova Scotia, Canada has been developing more practice experience sites in non-institutional settings. One of these is at the Department of Family Medicine at Dalhousie University. This paper describes the development and expansion of clinical pharmacy services in the Family Medicine Clinics, provided by one of the College's clinical faculty members. With those services in place, the clinical pharmacist was ready to begin precepting pharmacy students at the Family Medicine Clinics. A proposal for a family medicine pharmacy practice experience programme was written, accepted and piloted in 1994-95. Following the success of that initial trial, the programme has continued and expanded over the years. Evaluation from the programme participants indicates that experience allows the pharmacy student to successfully complete programme objectives and gain an appreciation for working with other health care professionals to optimize patient care. The Family Medicine Clinics also appreciate the contributions made by the pharmacy students and value the interaction between students training in pharmacy and residents in family medicine.     

山东省某三级甲等医院急诊病人家属迁移应激现状及影响因素

目的:对我院急诊转出病人家属迁移应激进行调查,并分析家属迁移应激水平的影响因素,旨在为预防和减轻家属的迁移应激提供理论指导。方法:随机选取2019年1月—10月在我院急诊转出的148例病人家属作为调查对象,使用一般资料调查表、ICU转出病人家属迁移应激量表对其进行调查。结果:急诊转出病人家属迁移应激总分为(56.21±6.57)分,条目得分为(3.12±0.52)分。多因素分析显示,家属的文化程度、性别、对病人病情的了解程度、有无照护经验、接诊时间和护理满意度是影响急诊转出病人家属迁移应激的因素(P<0.05)。结论:急诊转出病人家属的迁移应激处于中等偏上水平,文化程度低、女性、对病人病情不了解、无照护经验、接诊时间及护理满意度低的家属迁移应激水平较高。     

How family carers of people with dementia experienced their stay on an acute care facility and their own collaboration with professionals: a qualitative study

About one third of geriatric patients admitted to an acute care setting suffer from dementia as second diagnosis. For those patients, a hospital stay can negatively influence health outcomes and cause additional burden for families, because structure and organisation of acute care settings are often not adapted to dementia care. The purpose of this qualitative study was to explore the experiences of family members of people with dementia who were admitted to an acute geriatric care facility. Data were collected through interviews with 12 family members and a qualitative content analysis was carried out. Findings showed that, regardless of patients' signs of dementia, family members worried: Will she manage? Will her needs be met? Family members felt a special responsibility. They appreciated the rehabilitative and nursing care; most could subsequently relinquish responsibility and felt temporary relief. Collaboration with professionals was experienced in different ways: Family members were relieved and appreciative when involved, but disillusioned or disappointed when they thought that they were not understood and neglected. For some family members, quality of care and collaboration was related to the practice of individual professionals. It is recommended to reinforce interventions that are experienced positively by family members and to develop a team culture of active relationship building and collaboration with the families of patients with dementia.     

Improving end-of-life care: gathering suggestions from family members

Tertiary care centers are criticized for not providing a peaceful death experience. This qualitative study was undertaken to ascertain suggestions family members (N = 29) might have to improve the situation. Family members made three major suggestions where the negative effects of the complex hospital system might be ameliorated when caring for dying patients: facilitate improved interaction between the dying patient and the family; improve interactions between caregivers and patients/families; and create a setting, or milieu, more conducive to these interactions. Further, family members related an overwhelming need to be close physically to their dying loved one; to be given permission, instruction, and opportunities to touch their loved one; to receive more information from caregivers; and to have their and their loved one's personhood acknowledged and respected. Thus, nurses should engage in respectful, personalized conversations with patients and families that allow them to define the dying experience they desire.     

A critical pathway for meeting the needs of families of patients with severe traumatic brain injury.

Family members of patients recovering from severe traumatic brain injuries have needs that are best met through early assessment and proactive intervention. A critical pathway addressing the needs of families during the acute and postacute phases of hospitalization was developed and implemented in the neuroscience intensive care and step-down units of a university hospital. A team of 10 neurosurgical nurses used and evaluated the program.     

Opinions of families,staff, and patients about family participation in care in intensive care units

PurposeThe aims of the study were to assess opinions of caregivers, families, and patients about involvement of families in the care of intensive care unit (ICU) patients; to evaluate the prevalence of symptoms of anxiety and depression in family members; and to measure family satisfaction with care.Materials and MethodsBetween days 3 and 5, perceptions by families and ICU staff of family involvement in care were collected prospectively at a single center. Family members completed the Hospital Anxiety and Depression Scale (HADS) and a satisfaction scale (Critical Care Family Needs Inventory). Nurses recorded care provided spontaneously by families. Characteristics of patient-relative pairs (n = 101) and ICU staff (n = 45) were collected. Patients described their perceptions of family participation in care during a telephone interview, 206 ± 147 days after hospital discharge.ResultsThe numbers of patient-relative pairs for whom ICU staff reported favorable perceptions were 101 (100%) of 101 for physicians, 91 (90%) for nurses, and 95 (94%) for nursing assistants. Only 4 (3.9%) of 101 families refused participation in care. Only 14 (13.8%) of 101 families provided care spontaneously. The HADS score showed symptoms of anxiety in 58 (58.5%) of 99 and of depression in 26 (26.2%) of 99 family members. The satisfaction score was high (11.0 ± 1.25). Among patients, 34 (77.2%) of 44 had a favorable perception of family participation in care.ConclusionsFamilies and ICU staff were very supportive of family participation in care. Most patients were also favorable to care by family members.     

Who's Teaching Whom? A Study of Family Education in Brain Injury

Acquired brain injury affects every aspect of life-cognition, emotional response, physical ability, and behavior. Although the changes affect the person with the brain injury most directly, people who provide care also experience changes. Family members play a critical role in the long-term rehabilitation of a person with a brain injury. The demands involved can deplete the most resourceful of families. Therefore, they must have multiple resources available to them to ensure the best possible outcome for the brain-injured member. A formalized family education program is an important resource in helping family members understand the brain injury and their ability to cope with and assist in the rehabilitation process (Maitz & Sachs, 1995). This article reports a qualitative study that measured the perceptions of 15 families that received an educational program about the care of a person with a brain injury.     

Follow-up of rape victims in a family practice setting.

Health care for rape victims traditionally has been crisis oriented, focused solely upon the victim, and provided either by a gynecologist or psychiatrist. A family practice health team, working in a county hospital, offered rape victims and their families crisis counseling in the emergency room, and follow-up care in a family practice clinic. Follow-up of victims markedly increased from 8% before initiation of the program to 86% afterward. Family members of more than half of the victims seen on follow-up received treatment. A wide range of health needs of both victims and their families, not identified in the emergency room, was identified on follow-up visits. In this way emergency care of the rape victim often became an entry point into the health care system. Rape must be viewed as a family's as well as victim's health problem, often demanding a broader service than can be offered by a gynecologist or psychiatrist alone.     

The initiative for pediatric palliative care: an interdisciplinary educational approach for healthcare professionals

There is growing empirical evidence that the U.S. healthcare system fails to meet the needs of children with life-threatening conditions and their families. The confluence of several recent developments has created a critical window of opportunity for improving clinical practice and institutional effectiveness in pediatric palliative care. This article presents an innovative, comprehensive approach to pediatric palliative care education that was developed by the Initiative for Pediatric Palliative Care, a consortium of seven academic children's hospitals, Education Development Center, the National Association of Children's Hospitals and Related Institutions, the New York Academy of Medicine, the Society of Pediatric Nursing, and the Association of Medical School Pediatric Department Chairs. The approach is based on needs assessment research with clinicians and parents and reflects a commitment to culturally respectful, family-centered care of children with life-threatening conditions. The pedagogy combines principles of adult education, includes families as teachers, and integrates affective and cognitive dimensions to enhance learning.