特需病房的临终关怀服务

目的提高临终病人及家属的生活质量。方法建立家庭式临终关怀病房,控制癌症晚期病人的疼痛,制定个性化临终护理计划,做好基础护理和心理护理,给予临终病人家属心理支持,尊重其民族习俗和宗教信仰,遵照病人生前愿望进行尸体料理,帮助家属办理后续事宜。结果提高了临终病人生命质量,满足了病人的心理需要,病人及家属满意度较高。结论在特需病房实施的临终护理模式提高了服务质量和特需医疗服务信任度,扩大了特需医疗服务的影响力。     

Nursing Diagnoses of Burned Patients and Relatives' Perceptions of Patients' Needs

PURPOSE.  The aims of this study were to identify the nursing diagnoses of burn patients in the period 1 week before hospital discharge and to determine whether their relatives had similar perceptions of the patients' problems.
METHODS.  A qualitative case study was conducted with 10 burn patients and 10 family members. One week before hospital discharge, the nursing diagnoses of the patients and the relatives' perceptions of the patients' were identified and compared.
FINDINGS.  Thirty different diagnoses related to physical and psychosocial aspects were identified. The family members reported concerns mainly related to physical care, specifically wound care and prevention of infection, and psychosocial aspects, while patients were primarily concerned with the latter.
CONCLUSIONS.  Nursing diagnoses for these patients and their relatives' perceptions frequently overlapped; however, the emphasis of the families' attention was on the physical aspects.
IMPLICATIONS FOR NURSING PRACTICE.  Anticipating family members' perceptions about the patients' problems is important in order to promote strategies that will improve patient care after hospital discharge.     

Lived experience of critically ill patients' family members during cardiopulmonary resuscitation.

BACKGROUND: During resuscitative efforts, patients' family members are often barred from the patients' rooms and may never have the opportunity to see their loved ones alive again. Recently, the need to ask family members to leave the room is being questioned. Little is known about families' perceptions of cardiopulmonary resuscitation. OBJECTIVE: To describe the experiences, thoughts, and perceptions of family members of critically ill patients during cardiopulmonary resuscitation in the intensive care unit. METHOD: Six family members whose loved ones underwent cardiopulmonary resuscitation and survived consented to an audiotaped interview. During the interview, family members were asked to describe their experiences during the resuscitation. Interviews were transcribed and were analyzed for relevant themes by using Van Manen thematic analysis. RESULTS: One major theme emerged. Should we go or should we stay? Additionally, 2 subthemes emerged: What is going on? and You do your job. A model, the family's experience with cardiopulmonary resuscitation, was developed to reflect the research findings. CONCLUSIONS: During the period of resuscitation, healthcare professionals neglect to recognize that patients' family members are experiencing crisis along with the patients and that coping mechanisms are impaired. Moreover, the family members' informational and proximity needs are often ignored during this time of crisis. Addressing these needs through appropriate nursing interventions will become increasingly important as patients' family members begin to remain with their loved ones during cardiopulmonary resuscitation.     

Patients and families go on with life when a terminal illness enforces hospitalization: an interpretive phenomenological study

This interpretive phenomenological study explored patients' with a terminal illness and their family members' experiences of hospital end-of-life care. Findings show that patients and families led unique lives, and even when a terminal illness intruded and enforced a hospital stay, they held on to familiar practices. Patients and family members felt best cared for when healthcare providers supported them in their endeavors to go on with their usual life as much as possible. To achieve this, professionals are challenged to recognize patients and family members as persons and to integrate the latter's lived experiences in their care interventions.     

The vortex: families' experiences with death in the intensive care unit.

BACKGROUND: Lack of communication from healthcare providers contributes to the anxiety and distress reported by patients' families after a patient's death in the intensive care unit. OBJECTIVE: To obtain a detailed picture of the experiences offamily members during the hospitalization and death of a loved one in the intensive care unit. METHODS: A qualitative study with 4 focus groups was used. All eligible family members from 8 intensive care units were contacted by telephone; 8 members agreed to participate. RESULTS: The experiences of the family members resembled a vortex: a downward spiral of prognoses, difficult decisions, feelings of inadequacy, and eventual loss despite the members' best efforts, and perhaps no good-byes. Communication, or its lack, was a consistent theme. The participants relied on nurses to keep informed about the patients' condition and reactions. Although some participants were satisfied with this information, they wishedfor more detailed explanations ofprocedures and consequences. Those family members who thought that the best possible outcome had been achieved had had a physician available to them, options for treatment presented and discussed, andfamily decisions honored. CONCLUSIONS: Uncertainty about the prognosis of the patient, decisions that families make before a terminal condition, what to expect during dying, and the extent of a patient s suffering pervade families' end-of-life experiences in the intensive care unit. Families' information about the patient is often lacking or inadequate. The best antidote for families' uncertainty is effective communication.     

Does palliative care improve quality? A survey of bereaved family members

Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Medicaid vs. non-Medicaid), and functional status (number of dependent activities of daily living). One hundred ninety eligible subjects were contacted and successful interviews were completed with 149 (78.4%) family members (54 palliative care and 95 usual care patients). Palliative care showed benefit, with 65% of palliative care patients' family members reporting that their emotional or spiritual needs were met, as compared to 35% of usual care patients' family members (P=0.004). Sixty-seven percent of palliative care patients' family members reported confidence in one or more self-efficacy domains, as compared to 44% of usual care patients' family members (P=0.03). Our study shows that palliative care consultation is associated with improved satisfaction, with attention to family and enhanced self-efficacy. Palliative care offers a unique approach by integrating the needs of the family into the care of the patient.     

Health professionals' perspectives of suicide in Taiwan

The ethnographic study on which this report is based investigated experiences among patients, their families, friends, colleagues, and health professionals following a suicide attempt. Misunderstanding and ineffective treatment are often based on different explanations of suicide held by patients, their families, and health professionals, even when they share culture and language. In this report we describe how suicide is perceived by psychiatric team members in one regional teaching hospital in northern Taiwan. Twenty-two staff members of the Department of Psychiatry participated in this study. "Making a diagnosis" characterized the psychiatric subculture around the care of suicidal patients. In addition, mental health professionals tended to differentiate the patient's condition through three main avenues: (a) psychotic symptoms versus personality problems, (b) low IQ and high educational level, and (c) high versus low lethality of method. These findings suggest that mental health professionals need to bridge the gap between their knowledge and understanding of suicide and patients' and patients' families' expectations for care and treatment.     

Noncompliance with medication regimens in severely and persistently mentally ill schizophrenic patients.

Medication noncompliance contributes significantly to recurrence of symptoms and readmission to the hospital of schizophrenic patients. The purpose of this study was to determine factors identified by patients, family members, and nurses for patients' noncompliance. The Health Belief Model provided a theoretical framework. The sample consisted of 11 triads with a noncompliant schizophrenic patient, a family member, and a primary nurse in each triad. A structured interview was developed to assess stated reasons for noncompliance and factors relating to the patient's illness, medication practices, stressors, life-style, and support systems. Results showed that many patients stated they did not need medication or needed less than the amount prescribed. Family members and nurses agreed that the majority of patients did not believe that they needed medication. When asked if they thought they had a mental illness, most patients denied that they were ill. Other stated reasons for noncompliance were drug/alcohol use, and, for one patient, medication side effects. Additional findings were patients' low self-esteem; lack of knowledge about medications; inability to identify stressors in patients' lives; inability to identify early symptoms of relapse; patients' need for support from families; and families' stress from patients' abusive, unpredictable behavior. Use of the Health Belief Model is appropriate to study noncompliance in mentally ill patients if perception of illness threat is assessed. Conclusions were that patients and families could benefit from more knowledge of schizophrenia and its treatment, more awareness of stressors and signs of relapse, and improved mutual problem solving. Studies are needed to assess the effects of patients' denial of illness, denial of need for medication, and self-image/self-esteem on medication noncompliance.     

Hospital experiences of young adults with congenital heart disease: divergence in expectations and dissonance in care.

BACKGROUND: Despite increasing survival for adults with congenital heart disease, little is known about hospitalization for young adult patients with this disease and for their families. Because of the complexity of the disease and its management during the life span, young adults are often hospitalized on both pediatric and adult units during a stay in the hospital. OBJECTIVES: To explore the experience of hospitalization of young adults with congenital heart disease, the experience of their families, and the views of the nurses who cared for these patients and to generate substantive theory on interactions between patients, patients' families, and nurses. METHODS: Semistructured interviews and naturalistic observations were conducted with young adults with congenital heart disease (mean age, 28.6 years), their family members, and nurses who cared for the patients during hospitalization (N=34). Dimensional analysis was used to analyze interviews and field notes from observations. RESULTS: A grounded theory was derived, explaining how the hospital context and relationships between patients, patients' families, and nurses affect patients' hospital experiences. Expectations differed among the groups, leading to dissonance in care, as exemplified by role confusion and power struggles over control of care. This dissonance resulted in interpersonal conflict, distrust, anxiety, and dissatisfaction with the care and caring experiences. CONCLUSIONS: Changes in hospital units, a better understanding of the healthcare needs of young adults with congenital heart disease, and acknowledgment of the expertise of patients and patients' families are needed to improve nursing care for these patients and their families.     

Optimism, satisfaction with needs met, interpersonal perceptions of the healthcare team, and emotional distress in patients' family members during critical care hospitalization.

BACKGROUND: Families of critical care patients experience high levels of emotional distress. Access to information about patients' medical conditions and quality relationships with healthcare staff are high-priority needs for these families. OBJECTIVES: To assess satisfaction with needs met, signs and symptoms of acute stress disorder, interpersonal perception of healthcare staff, level of optimism, and the relationships among these variables in patients' family members. METHODS: Family representatives of 40 patients were administered a brief version of the Critical Care Family Needs Inventory, the Acute Stress Disorder Scale, the Brief Symptom Inventory, the Impact Message Inventory, and the Life Orientation Test shortly after admission of the patients to the intensive care unit and after discharge. RESULTS: Levels of dissociative symptoms associated with acute stress disorder were elevated in family members just after admission but decreased significantly after discharge. Needs the families thought were least satisfactorily cared for after admission involved lack of information. Interpersonally, attending physicians were viewed as more controlling than bedside nurses at admission; nurses were viewed as more affiliative than physicians both at admission and after discharge. At admission, higher optimism of the family members was strongly related to greater satisfaction with needs met, to perceptions of affiliation from physicians, and to perceptions of not being controlled by physicians. CONCLUSIONS: More interpersonal contact with medical staff can help meet the information needs of patients' families. Nurses may aid in families' adjustment by fostering a sense of optimism in family members and encouraging them to participate in the patients' care.     

Family member as a hospital patient: sentiments and functioning of the family

The aim of this pilot study was to find out how families experience the hospitalization of one family member and to chart the participation of the family in the treatment of the hospitalized family member. A questionnaire was used to gather data for the study and the three open-ended questions in the questionnaire were interpreted using content analysis. The study population (n = 70) was the family members of patients in the neurological wards of Tampere University Hospital. The study demonstrated a variety of negative sentiments in the families, such as worry, fear, shock, anxiety and depression at the hospitalization of their family member. The families also expressed neutral and positive sentiments, such as approval, relief and faith in the help given. Nearly 80% of the families' statements dealt with emotional responses. Changes in the everyday life of the family caused by the hospitalization of a family member were also reported, with most changes affecting the immediate family. Hospital visits gave a rhythm to family life. There were changes in the sharing of housework and taking care of affairs, as well as in relationships within the family. Family members spoke of their loneliness, fear and longing. External changes in family life were present in 13% of statements. Helping the patient in hospital involved functions like participation in nursing care, taking the patient to the cafeteria and rehabilitation. Only 20% of statements dealt with emotional support for the patient. Future research could broaden the perspective to include the views of patients, nurses and doctors on the reality of family nursing.     

重症监护病人家属需求分析

目的 :探讨重症监护病人家属的需求。方法 :对137例心脏外科手术监护室(CSICU)病人家属需求进行调查分析。结果 :重症监护室家属对护患沟通方面的需求高于其他方面需求 ,且与文化程度有关 (P <0 .0 5 ) ;家属心理需求中居首位的是希望获得医护人员对病人的关心 ;老年家属组承受的压力明显大于中青年组 (P <0 .0 5 )。结论 :护理人员应加强与病人家属的沟通 ,满足他们的需求 ,增强家属的应对能力     

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.     

Attitudes toward and beliefs about family presence: a survey of healthcare providers, patients' families, and patients.

BACKGROUND: Although some healthcare providers remain hesitant, family presence, defined as the presence of patients' family members during resuscitation and/or invasive procedures, is becoming an accepted practice. Evidence indicates that family presence is beneficial to patients and their families. OBJECTIVES: To describe and compare the beliefs about and attitudes toward family presence of clinicians, patients' families, and patients. METHODS: Clinicians, patients' families, and patients in the emergency department and adult and neonatal intensive care units of a 300-bed urban academic hospital were surveyed. RESULTS: Surveys were completed by 202 clinicians, 72 family members, and 62 patients. Clinicians had positive attitudes toward family presence but had concerns about safety, the emotional responses of the family members, and performance anxiety. Nurses had more favorable attitudes toward family presence than physicians did. Patients and their families had positive attitudes toward family presence. CONCLUSIONS: Family presence is beneficial to patients, patients' families, and healthcare providers. As family presence becomes a more accepted practice, healthcare providers will need to accommodate patients' families at the bedside and address the barriers that impede the practice.     

Challenges to end of life care in the acute hospital setting

BACKGROUND: Research exploring patients' care and treatment preferences at the end of life (EOL) suggests they prefer comfort more than life-extension, wish to participate in decision-making, and wish to die at home. Despite these preferences, the place of death for many patients is the acute hospital, where EOL interventions are reported to be inappropriately invasive and aggressive. AIM: This paper discusses the challenges to appropriate EOL care in acute hospitals in the UK, highlighting how this setting contributes to the patients' and families' care and treatment requirements being excluded from decision-making. METHODS: Twenty-nine cancer nurse specialists from five hospitals participated in a grounded theory study, using observation and semi-structured interviews. Data were collected and analysed concurrently using the constant comparative method. RESULTS: EOL interventions in the acute setting were driven by a preoccupation with treatment, routine practice and negative perceptions of palliative care. All these factors shaped clinical decision-making and prevented patients and their families from fully participating in clinical decision-making at the EOL.     

A mixed method study to compare use and experience of hospital care and a nurse-led acute respiratory assessment service offering home care to people with an acute exacerbation of chronic obstructive pulmonary disease

BACKGROUND: Over the past 10 years hospital at home schemes for the treatment of an acute exacerbation of Chronic Obstructive Pulmonary Disease have proliferated throughout developed countries. For selected patients treatment at home is no less advantageous in terms of readmission rates and length of stay than treatment in hospital. Although care at home might seem to be a more desirable option than admission to hospital, little is known about care preferences and how people exercise service choice. OBJECTIVES: 1. to determine patients' recent use of and satisfaction with health care services during exacerbations of Chronic Obstructive Pulmonary Disease. 2. To determine and compare patients' and families' perceived future care preferences. 3. To complete an in-depth exploration of care experiences and preferences with a subset of respondents and their families. DESIGN: A mixed method design was used consisting of a postal survey and in-depth qualitative interviews with a subset of questionnaire respondents. SETTING: An outreach service provided by a large university hospital within Scotland, UK. PARTICIPANTS: One hundred and four out-patients registered with the Acute Respiratory Assessment Service and who had experienced hospital inpatient care during the past year, and their families. A subset of respondents was invited to take part in qualitative interviews. RESULTS: The majority of respondents indicated a preference for the home care service, and this was positively associated with high coping skills. There was a strong relationship between personal and family preferences. There was no linear relationship between a clinical measure of severity of lung disease and service use or care preferences. Results from the qualitative interviews endorsed and explained these findings. CONCLUSIONS: A range of factors combined to influence service use at a particular point in time, implying a need for increased self-management support from nurses and increased service provision.     

Impact of a prolonged surgical critical illness on patients' families.

BACKGROUND: Long-term effects on patients' families after a prolonged stay in a surgical intensive care unit are unclear. We hypothesized that illnesses requiring more than 7 days' stay in the surgical intensive care unit would have significant, long-lasting effects on patients' families that would be related to patients' functional outcome. METHODS: All patients who stayed in the general surgery intensive care unit 7 days or more between July 1, 1996, and June 30, 1997, were enrolled. A total of 128 patients met the entry criteria, and families of surviving patients were interviewed at baseline and 1, 3, 6, and 12 months later. Maximum dysfunction/impact was compared with patients' functional outcome. RESULTS: Significant disturbances in the families' lives occurred throughout the 12 months of this study. Almost 60% of responding families provided a moderate or large amount of caregiving between 1 and 9 months after a prolonged illness, 44.9% had to quit work after 1 month, and more than 36.7% of families had lost savings after 1 year. Some families moved to a less expensive home, delayed educational plans, or delayed medical care for another family member. CONCLUSIONS: An acute surgical illness that results in a prolonged stay in an intensive care unit has a substantial effect on patients' families that is maximal between 1 and 3 months and parallels the patient's functional outcome. Systems that provide support to both patients and their families should be emphasized in the hospital and after discharge.