Retention of clients in service under two models of home health care for HIV/AIDS.

OBJECTIVE: To determine if a Transprofessional, care-management approach (experimental group) produces different patterns of retention in home treatment as compared to a Traditional treatment approach (control group). The care-management approach utilizes an interdisciplinary mix of allied health professionals who adhere to a service delivery protocol based on active medical, surgical treatment (curative services) as well as on pain, symptoms, and emotional care (palliative services). Initially, the Transprofessional Model should lead to a greater retention rate in the program as patients bond to blended care managers, but in later stages clients needing hospice should be moved off-services resulting in lower retention rates in the medical-surgical home care venue. DATA SOURCES AND STUDY SETTING: Data were collected from 549 AIDS patients admitted for medical/surgical home-care services to the Visiting Nurse Association of Los Angeles (VNA-LA). Demographic and disease-specific data were collected from admitting records; service-utilization data were collected from the VNA-LA's computerized data system. STUDY DESIGN: Upon admission for home-care services, patients were randomly assigned to an experimental (Transprofessional) or control (Traditional) treatment group. Service levels were comparable. PRIMARY FINDING: In the earliest stages, Transprofessional patients tend to be more likely to stay in treatment, probably due to the greater bonding to the program. After about one year, the Transprofessional patients are more likely to leave the program as they are transitioned into hospice care. CONCLUSIONS: An integrated model of service delivery, which is based on interdisciplinary care-management and blended modalities of service, provides a quality of life enhancing and a cost-effective method in the provision of home-care services for terminally ill AIDS patients.     

The Transprofessional Model: Blending Intents in Terminal Care of AIDS

SUMMARY

Current terminal care services present dying patients and their families with a dichotomy in service delivery and the intent care between curative treatments and palliative treatments. This arbitrary dichotomy reduces patients' quality of life in many cases and robs patients and families of benefiting from the psychosocial aspects of treatment until the last few weeks of life. This article presents a blended model of care, the Transprofessional Model, in which patients receive both curative and palliative service throughout their care process. The blended intent model differs from traditional home care in that services are provided by a care coordination team composed of nurses and social workers; the traditional model of care is often case managed by a single, registered nurse. The combination of the multi-disciplinary approach to care coordination and training in both curative and palliative services in the Transprofessional Model demonstrates that this blended model of care produces a bio-psychosocial focus to terminal care as compared to a primary focus on curative services present in the traditional model of home care.     

艾滋病患者临终关怀工作模式和机制研究

摘要：目的　探索红十字会系统如何落实国务院艾滋病防治工作委员部门职责规定,深入开展艾滋病患者
临终关怀工作。方法　中国红十字会总会组建专家组,制定了调研计划,统一开发指导手册,在广西壮族
自治区南宁市、宁夏回族自治区银川市、四川省德昌县和资中县,四个点开展临终关怀试点和调研工作。
结果　共有１３６２人接受了调查,对７５ 例艾滋病患者接受临终关怀和照护。患者在接受过临终关怀服务
后,精神状态有了明显的改善,对死亡的恐惧感有所下降,心态也变得轻松舒缓。患者及家属通过本次临
终关怀服务,对临终关怀及其理念有了更深的了解,对为其提供临终关怀服务的医务人员及志愿者们深表
感激。结论　我国开展艾滋病患者临终关怀工作十分必要;红十字会系统开展艾滋病患者临终关怀工作可
行;红十字会系统开展艾滋病患者临终关怀工作具有独特优势,并已经积累了初步经验。建议在艾滋病防
治领域专项开展艾滋病患者临终关怀项目;红十字会系统全面参与,并协调多部门、社会组织、志愿者开
展艾滋病患者临终关怀工作;采取先试点,再推广的原则,在我国逐步推广艾滋病患者临终关怀服务。通
过宣传向大众普及死亡教育,同时告知社会,红十字会专项开展对艾滋病患者的临终关怀工作,待时机成
熟,建立专项基金,为爱心人士搭建捐助平台,为该项工作可持续发展奠定基础。
关键词：艾滋病;患者;临终关怀;模式和机制
中图分类号：Ｒ５１２．９１　　文献标识码：Ａ　　文章编号：１００９ ６６３９ （２０１４）０５ ０４２３ ０３     

A typology of service patterns in end-stage AIDS care: relationships to the transprofessional model.

OBJECTIVE: To determine the relationship among 11 types of home health care services for patients with HIV/AIDS and to develop a terminal-care, service-usage profile of persons receiving such services. Services include the number of psychiatric nurse visits, Medical Social Work (MSW) visits, evaluation visits, physical therapy visits, occupational therapy visits, homemaker visits, home health aide visits, public health nurse visits, registered nurse (RN) visits, Licensed Vocational Nurse (LVN) visits, and Intravenous (i.v.) nurse visits. DATA SOURCES AND STUDY SETTING: Data were collected on 549 AIDS patients admitted for medical/surgical home-care services to the Visiting Nurse Association of Los Angeles (VNA-LA). The service utilization data were collected from the VNA-LA's computerized data system. STUDY DESIGN: The relationship among the service types was evaluated with principal component analysis. A service-usage profile was developed for patients using cluster analysis. To control for the variability in the amount of time that patients were on service, the number of days that patients were in the VNA-LA program and were actually receiving services was included as a factor that yielded a variable reflecting the number of each type of service that a patient received per day. PRINCIPAL FINDINGS: Five components were found to best describe the relationships among the service-type variables. These were identified as being: the Number of Evaluation Visits, the Number of Intensive Nursing Visits, the Number of Physical Therapy Visits, the Number of Psychosocial Visits, and the Number of Attendant Visits. Patients were found to cluster into 1 of 5 groups based on the type of service utilization profile that they received. The variables that appeared to have the most influence on this profile were the number of home health aide visits per day that the patient received, the number of RN visits that were made, the number of i.v. nurse visits that were provided, and the number of LVN visits that were made. CONCLUSIONS: Terminally ill AIDS patients receiving home health care services can be identified as having a service utilization profile. This profile can be used to evaluate more precisely the service areas in which costs for patient services differ. Individually assigned to an experimental Transprofessional Model of care had a different service utilization profile than those assigned to a Traditional Model of care.     

Patient and caregiver satisfaction with end-of-life care: does high satisfaction mean high quality of care?

The purpose of this study was to determine patient and caregiver satisfaction with a hospice program of care. The setting for the study was a home-care hospice in the southeastern United States that provides a full range of services for patients with life-limiting illness and supportive services for family caregivers. Two Likert-type instruments were used to determine satisfaction with staff, communication, education, information provided, symptom management, promptness with service, and overall satisfaction. Some 321 patients and 443 caregivers completed surveys over a two-year period of time. Data indicates the majority of patients and their caregivers were very satisfied with hospice services and the care they received. Providing quality care at the end of life is the goal of hospice. Satisfaction with delivery of care, management of symptoms, and communication with staff are all components of quality care and contribute to quality of life.     

The Effect of Inpatient Hospice Units on Hospice Use Post-Admission

ABSTRACT

The objective of this study was to determine whether having a hospice unit within the hospital increases the proportion of terminally ill patients who use hospice services (including home, nursing home, or inpatient hospice) post-admission. Using medical record data abstracted for 232 randomly selected patients with terminal cancer admitted to six community hospitals in Connecticut, we found that patients admitted to a hospital with a hospice unit were more likely to use hospice services (i.e., home hospice, nursing home hospice, or inpatient hospice) post-admission than patients admitted to a hospital without a hospice unit (unadjusted OR 5.7, 95% CI 3.1, 10.6). This effect persisted after adjusting for patient age, gender, marital status, documented discussions of prognosis, prior hospice use, and type of cancer.     

The development of a hospice junior volunteer program

In the United States, volunteer services are mandated by hospice Medicare guidelines; volunteers provide a very valuable service to patients, families, and other members of the interdisciplinary team. A hospice junior volunteer program can engage teens in the care of the dying in our communities. This article describes the development and implementation of a junior volunteer program at St. Thomas Hospice in Hinsdale, Illinois.     

‘Where do I go from here’? A cultural perspective on challenges to the use of hospice services

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non‐Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access‐to‐care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients (Māori, Pacific and Asian self‐identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non‐users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community.     

AIDS and hospice

Which AIDS patients should be admitted to hospice programs? Many health care professionals feel that any anti-viral drug or treatment directed against the opportunistic infections characteristic of AIDS to be incompatible with hospice philosophy. Others argue that inclusion of AIDS patients blurs the distinction between hospice and community service programs. We argue that achieving consensus on this issue is best served by focusing on the defining characteristic of hospice programs--the care of the dying. Consensus is not served by dwelling on the specific palliative or supportive measures used to achieve the hospice goal. We suggest a framework by which AIDS patients may be accommodated in existing hospice programs while maintaining hospice program integrity. It is further suggested that these may be used for the consideration of any patient for hospice care.     

Ownership, availability, and use of portable syringe drivers among hospices and home-care services

We ascertained the ownership, availability and extent of use of portable syringe drivers among 236 hospice in-patient units and home-care services for the terminally ill in the United Kingdom by means of a postal questionnaire (97% response rate). Only 11 hospices and home-care services did not use them. The rest owned a median number of 4 but had only 1 in use. However, the combined hospice with home-care services owned relatively more than either hospices or home-care teams (median number 6 compared to 3.5 and 4 respectively) and used relatively more than the others (estimated median 2 [95% CI: 1-2] compared to 1 [95% CI: 0-1] and 1 [95% CI: 1-2] respectively). The major determinants of ownership and use among units with an in-patient facility were supply factors such as the numbers of trained nurses in palliative care and doctor half-day sessions, whereas for home-care units the number of patients cared for daily was the most important determinant. There does not seem to be any unmet demand for portable syringe drivers among hospices and home-care services.     

Embracing a family-centred response to the HIV/AIDS epidemic for the elimination of pediatric AIDS

Abstract

There are 2.1 million children under the age of 15 living with HIV/AIDS, and 290,000 children died of AIDS in 2007. Despite recent increases in the number of adults on antiretroviral therapy (ART), the number of children receiving treatment remains inappropriately small, and prevention of mother to child transmission (PMTCT) efforts have been grossly inadequate. In sub-Saharan Africa, 14% of those in need of treatment are children, but only 6% of those are receiving treatment. Globally, only 23% of HIV-positive pregnant women have access to PMTCT programmes, which led to 420,000 new pediatric infections last year. Countries with comprehensive, integrated family-centred care programmes are better equipped to prevent and treat pediatric HIV/AIDS. True family-centred care offers prompt maternal and pediatric HIV diagnosis, antiretroviral prophylaxis, cotrimoxazole prophylaxis, and long-term ART for the entire family, as appropriate. Simple child health interventions, prompt treatment of opportunistic infections, nutritional supplementation and infant replacement feeding, as well as malaria treatment and prevention have been proven to synergistically improve pediatric HIV care and increase service uptake. To eliminate pediatric HIV/AIDS, national governments must embrace family-centred care, implement pediatric-friendly infrastructure, and train healthcare workers to treat children.     

Healthcare utilization is substantial for patients with type 2 diabetes in primary care: A patient-level study in a Swedish municipality

Background: The national health service in the Republic of Ireland is one of a number of European health services currently undergoing significant reform. Out-of-hours primary care has been at the forefront of this process of change, and although patients appear satisfied, the complexity of their response to changes in out-of-hours care has not been fully explored. Objective: To conduct an analysis of qualitative data collected during a recent study of patients’ satisfaction with out-of-hours care in order to explore the full range of patients’ views and experiences. Methods: All patients contacting a family-doctor out-of-hours cooperative over a designated 24-day period were forwarded a postal questionnaire. The questionnaire contained a section giving the patient the opportunity to add qualitative comments concerning their experience. The data were analysed according to the principles framework analysis using Nvivo software. Results: Analysis of the data resulted in the development of the following thematic categories: service availability, service accessibility, efficiency, continuity of care and quality of care. There was a range of views, both positive and negative, apparent around these themes, with evidence of patients engaging in careful decisions and “trade-offs” in respect of their options for out-of-hours care.

Conclusion: Patients hold a range of views that suggests the complexity around patient satisfaction with out-of-hours care. A qualitative methodological approach can compliment current approaches to the evaluation of patient satisfaction, facilitating the exploration of the full range of patients’ views and experiences.     

Outreach,Mental Health,and Case Management Services: Can They Help to Retain HIV-Positive and At-Risk Youth and Young Adults in Care?

Objectives: To assess the impact of outreach, mental health, and case management services on retention in primary care of HIV+ and at-risk youth and young adult clients of the Boston HAPPENS program, a comprehensive adolescent HIV prevention and care network of agencies. Methods: Providers at 8 urban sites used standard data forms at each visit to collect background and service receipt information on at-risk clients aged 12–24 years. Data were aggregated across all visits for each client to create summary variables for the number of times each client received each type of service. The retention measure was the number of days between a client's first and last visits during the 4-year data collection period. Kaplan–Meier survival curve and Cox proportional hazards regression analyses were used to assess the association between receipt of the support services of interest and the retention measure. Results: The median retention times were 21 days for male clients (range, 0–1406, N = 512), and 26 days for female clients (range, 0–1577, N = 914). Among males, 45% were retained beyond a month, 24% beyond a year, and 10% beyond 2 years. Similar proportions of females were retained beyond a month and a year, but more females were retained beyond 2 years (15%). After adjusting for other covariates, both male and female clients had significantly longer retention times if they received q2 outreach contacts, or case management at q3 visits. Among males, receipt of mental health counseling at q2 visits also increased retention times. Conclusions: These findings suggest that provision of outreach, mental health, and case management services can improve retention in care of at-risk youth and young adults.     

Hospice Care: What Services Do Patients and Their Families Receive?

OBJECTIVE: To determine the degree to which patients and families enrolled with hospice received services across key categories of palliative care, the extent of hospice-level variability in services delivered, and changes over time in services delivered. DATA SOURCE: Nationally representative sample of 9,409 discharged patients from 2,066 hospices in the National Home and Hospice Care Survey. STUDY DESIGN: Observational, cross-sectional study conducted from 1992 to 2000. The primary outcome is the receipt of services across five key categories of palliative care: nursing care, physician care, medication management, psychosocial care, and caregiver support. DATA COLLECTION: Data were obtained via interview with the hospice staff member most familiar with the patient's care, in conjunction with medical record review. PRINCIPLE FINDINGS: In 2000, 22 percent of patients enrolled with hospice received services across five key categories of palliative care. There was marked variation across hospices in service delivery. One-third of hospices provided patients and families services in one or two of the five key categories of palliative care, whereas 14 percent of hospices provided services across five key categories of palliative care. In multivariable analysis, the odds of receiving any additional hospice service was significantly greater in later compared with earlier years (odds ratio=1.10, 95 percent confidence interval 1.01-1.20). Nevertheless, the percentages of patients in 2000 receiving medication management (59 percent), respite care (7 percent), and physician services (30 percent) remained low. CONCLUSIONS: Hospice care for patients and families varies substantially across hospices. Whereas some hospices provide services across the key categories of palliative care, other hospices do not provide this breadth of services. Greater understanding of the causes of variation in service delivery as well as its impact on patient and family outcomes and satisfaction with end-of-life care is a critical subject for future research. Changes in Medicare's reimbursement policies may help hospices increase the range of services provided to patients and families.     

The business of palliative medicine--Part 3: The development of a palliative medicine program in an academic medical center

Palliative medicine is the total continuing care of patients with cancer. Most resources for cancer care focus on curative attempts while often ignoring the symptoms created by the disease and its treatment. Attempts at curative treatment of the malignancy must be coupled with pain and symptom relief psychosocial and spiritual care, and support for the patient and family extending from the time of diagnosis through the bereavement period. To accomplish this important goal, we must establish comprehensive palliative medicine programs in cancer centers throughout the world. These programs must include education, research, and patient care and must work through an interdisciplinary team. The Cleveland Clinic Foundation palliative medicine program (PMP) is composed of a primary inpatient service, consult service, outpatient clinic, hospice homecare, and cancer homecare services. In this article, we describe the structure and development of the program and suggest future avenues for growth.     

REPORT FROM ITALY

Background: Increasing numbers of family caregivers are confronted with caring for a demented, community-dwelling relative. Living with, caring for, and supervising a demented older relative places a heavy burden on the involved family members. In particular, primary caregivers report increased strain, feelings of depression, and decreased general wellbeing as a direct consequence of care giving. Since the most common cause of failure of a home-care situation appears to be caregiver burnout, detecting critical, negative changes in the wellbeing of the caregiver is important. Methods: In a nationwide, cross-sectional study by the Belgium Social Security Board, a population of demented older patients and their care-giving relatives was investigated. The care situation and characteristics of demented, older patients and their caregivers were inventoried, and their effects on the wellbeing of caregivers were evaluated. Results: Approximately 30% (n = 28) of caregivers of demented, older relatives were depressed. Depression occurred independently of objective care characteristics and the mental and physical state of the demented patient. Rather, it was related to coping mechanisms and to the perceived burden reported by the caregiver.

Conclusion: Offering support and counsel to caregivers is an important issue in efficiently maintaining home-care situations.     

Bereaved Hospice Caregivers' Views of the Transition to Hospice

This study was conducted to explore the communication process between patients, caregivers, and health care professionals, including social workers, through which the decision to choose hospice occurred. Ten bereaved hospice caregivers of patients over age 60 receiving home hospice services participated in this qualitative (phenomenological) study. They represented a range of patient and caregiver characteristics such as age, ethnicity, diagnoses, length of hospice service use, and caregiver relationship to patient. A semi-structured interview guide was used to capture key components in the end-of-life communication process, including discussions caregivers had with health care professionals regarding patients' diagnoses, prognoses, end-of-life care treatment options, and eventual referral to hospice. Themes that emerged included: involvement of health care professionals, relationship with physicians, involvement of patients in decisions, content of discussion, understanding of hospice, and suggestions for improvement. Physicians and social workers were noted to be most involved in the communication, decision making, and transition to hospice; however, a need exists for a more coordinated approach to discussing end-of-life care options with seriously ill patients and their families.     

The effects of an HIV project on HIV and non-HIV services at local government clinics in urban Kampala

Background

HIV/AIDS is a major public health concern in Uganda. There is widespread consensus that weak health systems hamper the effective provision of HIV/AIDS services. In recent years, the ways in which HIV/AIDS-focused programs interact with the delivery of other health services is often discussed, but the evidence as to whether HIV/AIDS programs strengthen or distort overall health services is limited. The aim of this study was to examine the effect of a PEPFAR-funded HIV/AIDS program on six government-run general clinics in Kampala.

Methods

Longitudinal information on the delivery of health services was collected at each clinic. Monthly changes in the volume of HIV and non-HIV services were analyzed by using multilevel models to examine the effect of an HIV/AIDS program on health service delivery. We also conducted a cross-sectional survey utilizing patient exit interviews to compare perceptions of the experiences of patients receiving HIV care and those receiving non-HIV care.

Results

All HIV service indicators showed a positive change after the HIV program began. In particular, the number of HIV lab tests (10.58, 95% Confidence Interval (C.I.): 5.92, 15.23) and the number of pregnant women diagnosed with HIV tests (0.52, 95%C.I.: 0.15, 0.90) increased significantly after the introduction of the project. For non-HIV/AIDS health services, TB lab tests (1.19, 95%C.I.: 0.25, 2.14) and diagnoses (0.34, 95%C.I.: 0.05, 0.64) increased significantly. Noticeable increases in trends were identified in pediatric care, including immunization (52.43, 95%C.I.: 32.42, 74.43), malaria lab tests (1.21, 95%C.I.: 0.67, 1.75), malaria diagnoses (7.10, 95%C.I.: 0.73, 13.46), and skin disease diagnoses (4.92, 95%C.I.: 2.19, 7.65). Patients’ overall impressions were positive in both the HIV and non-HIV groups, with more than 90% responding favorably about their experiences.

Conclusions

This study shows that when a collaboration is established to strengthen existing health systems, in addition to providing HIV/AIDS services in a setting in which other primary health care is being delivered, there are positive effects not only on HIV/AIDS services, but also on many other essential services. There was no evidence that the HIV program had any deleterious effects on health services offered at the clinics studied.

     

以家庭和社区为基础的农村艾滋病病毒感染者/病人及其家属关怀模式

[目的]探索和建立对农村艾滋病病毒感染者和病人关怀和支持的工作模式,提高目标人群的生活质量,减少艾滋病病毒在感染者家庭夫妻间经性传播及非婚性传播,促进艾滋病的预防控制。[方法]社区(乡村)医生参与干预和关怀的服务;开展自愿咨询检测;培训同伴教育者(志愿者);提供感染者家庭生产支持与救助,孤儿关怀与救助,加强部门间的合作。[结果]项目覆盖24个乡,完成了大量干预、关怀、培训工作,达到了预期的要求。[结论]初步探索出了在农村地区对艾滋病病毒感染者和病人进行关怀和支持的工作模式。     

深圳市居民安宁疗护接受意愿及其影响因素研究

目的 调查深圳居民接受安宁疗护及同意家人接受安宁疗护的意愿程度,了解居民对安宁疗护目的及推广阻力的认知情况,为推进安宁疗护工作提供参考。方法 采用在线问卷对深圳居民进行横断面调查,无序多分类logistic回归模型分析深圳居民接受安宁疗护及同意家人接受安宁疗护的影响因素。结果 共回收问卷5 007份,剔除无效问卷后,得到有效问卷4 772份,有效率为95.3%。深圳居民对安宁疗护的个人接受意愿和同意家人接受意愿分别为70.2%和66.2%。七成居民赞同安宁疗护的目的为减轻痛苦或缓解压力,认为安宁疗护推广的首要阻力是费用过高或医保不覆盖、以及宣传和推广不到位。平均月收入较低的居民,个人接受安宁疗护（AOR = 0.83, 95%CI: 0.69～0.99）和同意家人接受安宁疗护（AOR = 0.81, 95%CI: 0.69～0.95）的意愿均更低;有过家人朋友接受安宁疗护经历的居民,个人接受安宁疗护（AOR = 1.47, 95%CI: 1.24～1.75）和同意家人接受安宁疗护（AOR = 1.45, 95%CI: 1.23～1.71）的意愿均更高。此外,影响个人接受安宁疗护意愿的危险因素还包括受教育程度较低（AOR = 0.66, 95%CI: 0.47～0.92）,保护因素还包括安宁疗护服务意向地点为家庭（AOR = 1.28, 95%CI: 1.05～1.56）。结论 深圳居民对安宁疗护的个人和家庭接受意愿均较高,但受到月收入、教育程度、亲身经历和服务意向地点等因素的影响。开展宣传推广和生命教育活动,组织安宁疗护志愿服务,完善安宁疗护收费和居家服务体系,将有助于提升城市居民对安宁疗护的接纳意愿。