Characteristics of people living with HIV who use community-based services in Ontario, Canada: implications for service providers.

Community-based AIDS service organizations (CBAOs) direct services to multiple-needs people living with HIV/AIDS who are less likely to use mainstream health promotion services. As people live longer with HIV, the potential to enhance quality of life increases, yet little is known about who uses CBAOs or how this use affects other health and social services. This study of people living with AIDS in Ontario, Canada (n = 297) examined the demographic and health-related characteristics of people with AIDS who do and do not use CBAOs and their patterns of mainstream service utilization. It found that users of CBAOs were significantly less healthy, less able to sustain normal activities, and more often depressed. They reported physical disabilities significantly more often. Their quality of life was also lower along certain dimensions. They were significantly poorer and more reliant on government income supports. They consumed significantly more nonhospital health and social services and had significantly higher out-of-pocket costs. These results suggest CBAOs are being accessed appropriately by those most vulnerable. In an effort to strengthen CBAO capacity to recognize and address depression and physical health problems prevalent among their clients, links to other mainstream health promotion and social services is recommended.     

基于社区的HIV/AIDS患者心理支持模式的研究

目的探讨基于社区HIV/AIDS患者心理支持模式。方法建立以社区为基础,由心理学专家、社区志愿者、社区医生、社区护士、患者家属等组成的心理支持团队,通过心理咨询、健康教育、反歧视宣传、同伴交流等活动,为HIV/AIDS患者提供心理关爱和情感支持。结果基于社区的心理支持模式,能有效地帮助HIV/AIDS患者走出心理困境、降低焦虑抑郁程度、提高生活满意度。采用患者单一条目自我评分法,心理支持前后焦虑抑郁和生活满意度的差异有统计学意义(P0.01)。结论建立以社区为基础的心理支持模式有着传统心理支持不可比拟的优势,对充分发挥社区在艾滋病防治方面的功能及动员社会力量控制艾滋病的传播有重要的现实意义。     

Symptom management in HIV/AIDS: advancing the conceptualization

For people living with HIV, symptoms related to the disease, comorbidities, and treatment side effects make symptom management essential. Poorly managed symptoms result in reduced medication adherence, disease progression, and lower quality of life. The Self-regulatory HIV/AIDS Symptom Management Model is a conceptual model that describes how persons living with HIV/AIDS manage their symptoms. The model links symptom experience, symptom management, social support, adherence, and health-related quality of life. It can assist nurses, through a multidimensional approach to illness management, to enhance symptom assessment, better understand factors influencing symptom experience, and to improve symptom management among people living with HIV/AIDS.     

Exploring the clinical nurse specialist role in an AIDS community-based organization

Although community-based organizations (CBOs) serving persons living with HIV/AIDS have proliferated, the role of advanced practice nurses in these CBOs has not been articulated. This article describes four components of the clinical nurse specialist (CNS) role in a CBO: a nutrition program for ambulatory persons living with HIV disease. The CNS educates clients about strategies to improve and maintain their health and manage complex treatment regimens in daily lives that are often chaotic and limited by severe financial constraints. As a member of a multidisciplinary team, the CNS provides a healthcare perspective in policy development and staff education for a predominantly social service agency.     

Quality of Life and the Concept of "Living Well" With HIV/AIDS in Sub-Saharan Africa

PURPOSE: To increase understanding of the meaning of quality of life for people living with HIV/AIDS in four countries in sub-Saharan Africa: Botswana, Lesotho, South Africa, and Swaziland. METHODS: Using a cross-sectional design and convenience sample, we administered a survey and collected data on demographic characteristics, measures of severity of illness, and perceptions of quality of life. The purposefully selected sample (N=743) consisted of community-based people living with HIV/AIDS in 2002. Based on the Wilson and Cleary framework for organizing variables related to quality of life, a hierarchical multiple regression was conducted with quality of life as the dependent variable. RESULTS: The sample of 743 persons was 61.2% female with a mean age of 34 years. Approximately 62 % of the sample reported having received an AIDS diagnosis. Ten predictor variables explained 53.2 % of the variance in life satisfaction. Those participants with higher life satisfaction scores were less educated, had worries about disclosure and finances, did not have an AIDS diagnosis or other comorbid conditions, had lower symptom intensity, had greater functioning, and had fewer health worries. None of these participants was taking antiretroviral medications at the time of this study. CONCLUSIONS: Several dimensions of the Wilson and Cleary model of quality of life were significantly related to life satisfaction for people living with HIV/AIDS in sub-Saharan Africa. Quality of life for this sample was primarily defined as overall functional ability and control over symptom intensity. These findings are similar to studies in developed countries that have shown the significant relationships among functional abilities, symptom control, and perceived quality of life. As antiretroviral medications become more available in these areas, community members and care providers can help clients realize the possibility of living well with HIV/AIDS, and can work with clients to improve functional ability and control symptom intensity to make living well a reality.     

Economic evaluations of community-based care: lessons from twelve studies in Ontario

A series of 12 studies (five historic cohort and seven randomized trials) examined clients in community settings in Southern Ontario suffering from a variety of chronic physical and mental health conditions. These studies are appraised using a framework for evaluating possible outcomes of economic evaluation. In the 12 studies, sample composition and size varied. Each study was designed to quantify the well-being outcomes and expenditures associated with different community-based approaches to care provided in the context of a system of national health insurance. As a collective, these studies represent increasing methodological rigour. Multiple-perspective client well-being outcome measures were used. In two studies, caregiver burden also was analysed. A common approach to quantification and evaluation of expenditures for service consumption was used in all 12 studies. The nature of community-based health services (health vs. disease care orientation) was found to have direct and measurable impact on total expenditures for health service utilization and client well-being outcomes. In most cases, a recurring pattern of equal or better client outcomes, yet lower expenditures for use of community based health services, was associated with well-integrated health oriented services. Integrated services aimed at factors which determine health are superior when compared to individual, fragmented, disease oriented, and focused approaches to care. The main lessons from the 12 studies are that it is as or more effective and as or less expensive to offer complete, proactive, community health services to persons living with chronic circumstance than to provide focused, on-demand, piecemeal services. Complete services would have a psychosocial and mental health focus included with the physical care approach. Furthermore, people with coexisting risk factors (age, living arrangements, mental distress and problem-solving ability) are the ones who most benefit at lower expense from health oriented, proactive interventions.     

Ancillary services for individuals living with HIV/AIDS

Providing comprehensive care to those living with HIV/AIDS remains a daunting task. Access to early HIV medical care helps to delay an AIDS diagnosis, and ancillary services can help meet the non-medical needs of HIV-positive individuals, which can ultimately impact their ability to access medical care. Some research has been done measuring ancillary service provision and primary care entry and retention; however, due to the lack of a comprehensive system of care, it has been difficult to determine the true impact of ancillary service usage and health outcomes. Additional qualitative research examining ancillary service usage, health outcomes, and quality of life needs to be done to develop a standard model of appropriate and comprehensive HIV care.     

艾滋病高发区HIV/AIDS患者生活质量影响因素研究

目的 探讨广西HIV/AIDS患者的生活质量,对相关影响因素进行分析,为有效提高HIV/AIDS患者生活质量提供科学依据.方法 采用一般资料问卷、生活满意度量表(SWLS)、焦虑自评量表(SAS)和抑郁自评量表(SDS)对广西308例HIV/AIDS患者进行问卷调查.结果 生活满意度平均分为(16.43±5.00)分,总体评分偏低;共同居住人口年总收入、医疗付费方式和抑郁评分对HIV/AIDS患者生活满意度评分有显著影响,差异均有统计学意义(均P<0.05).结论 大多数HIV/AIDS患者目前生活质量偏低,医护人员应制定针对性护理干预措施,有效降低HIV/AIDS患者的负性情绪,提高其生活质量.     

Taking action in communities: women living with HIV/AIDS lead the way

For the past 5 years, a successful collaboration of a medical center, a community-based HIV/AIDS service organization, a university school of nursing, and women living with HIV/AIDS in an inner city community resulted in a series of educational programs1 for women living with HIV/AIDS, their family, friends and caregivers. These programs were intended to provide inner-city women who were living with HIV/AIDS with knowledge and new insights from the voices of their peers. Topics focused on their self-care and empowerment so that they could take control of their wellness and their health care while remaining in their community. The efforts made in launching the collaborative educational series created trusting relationships between academic, clinical, and community service agencies, professional caregivers, and the recipients of their care. The most significant contribution belonged to the women living with HIV/AIDS themselves: After the programming they turned their health and life experiences into "action" by planning a research project that will test the efficacy of an intergenerational HIV prevention program for adolescent women of color in their community in the future.     

Evaluation of services for people with HIV/AIDS in an inner-city health authority: perspectives of key service providers

This paper reports the findings of the first phase of a study designed to assess the needs of people with HIV and AIDS and the extent to which these needs are being met by services in Camberwell Health Authority in inner London The study involves collecting information and opinions from key service providers, clients with HIV/AIDS and their informal carers It is the service provider data which will be presented here Semi-structured interviews were conducted with 47 key service providers involved in the care and support of people with HIV/ AIDS in the Camberwell Health District Respondents were drawn from the local health services, local social services departments and a number of locally active voluntary organizations The aim was to gather respondents' views on their individual roles and the roles of the organizations they represented, the health and social needs of people with HIV/AIDS and the extent to which these were being met by current service provision and the co-ordination of services for people with HIV/AIDS The data showed that a broad range of services were utilized by people with HIV/AIDS, reflecting a wide variety of health and social care needs The majority of respondents felt that some of the needs of people with HIV/AIDS were similar to those of people living with other chronic illnesses (such as cancer) However, they also identified a number of problems which were either unique or more severe for people with the virus Services for people with HIV/AIDS were generally felt to be poorly coordinated and a number of areas of overlap and gaps in service provision were identified     

Evaluation of a community-based mental health drug and alcohol nurse in the care of people living with HIV/AIDS

There is a growing need for advanced practice mental health and drug and alcohol nursing roles in the care of people living with HIV/AIDS; however, limited publications address these domains. This study evaluated a community-based mental health drug and alcohol nurse role caring for people living with HIV/AIDS (Mental Health D&A Nurse) in a large not-for-profit district nursing organization providing care to people living with HIV/AIDS in an Australian city. Outcomes from a client assessment and 6–8-week follow-up by the Mental Health D&A Nurse are presented as captured by the Depression Anxiety Stress Scales (DASS 21), Alcohol, Smoking and Substance Involvement Screening Test (ASSIST), Health of the Nation Outcome Scales (HONOS) and WHOQoL BREF. Mean scores and caseness were analysed, and significant differences were found on the 'impairment' and 'social problems' subscales of the HONOS. Results of semi-structured interviews with clients describe effective and supportive mental health care and health-promoting education following visits by the Mental Health D&A Nurse. These positive findings support continuing implementation of the role within this community setting and indicate that even greater benefits will ensue as the role develops further. Findings are of interest to clinicians and policy makers seeking to implement similar roles in community-based HIV/AIDS care.     

Determinants of health-service use by low-income people.

Poverty influences health status, life expectancy, health behaviours, and use of health services. This study examined factors influencing the use of health-related services by people living in poverty. In the first phase, 199 impoverished users of health-related services in 2 large Canadian cities were interviewed by their peers. In the second phase, group interviews with people living in poverty (n = 52) were conducted. Data were analyzed using thematic content analysis. Diverse health-related services were used to meet basic and health needs, to maintain human contact, and to cope with life's challenges. Use of services depended on proximity, affordability, convenience, information, and providers' attitudes and behaviours. Use was impeded by inequities based on income status. To promote the health of people living in poverty, nurses and other health professionals can enhance the accessibility and quality of services, improve their interactions with people living in poverty, provide information about available programs, offer coordinated community-based services, collaborate with other sectors, and advocate for more equitable services and policies.     

Active client participation: an examination of self-empowerment in HIV/AIDS case management with women.

Case management has become increasingly popular as a means to alleviate the difficulties associated with accessing health care and social services. However, little information exists regarding models of case management specifically intended for work with HIV-positive women. This article explores the practices currently in use at an HIV/AIDS service agency to further define empowering practices employed by case managers working with HIV-positive women. Although a client's active participation in service plan development and delivery is widely regarded as the pathway to empowerment, findings indicate that "active participation" is not so readily defined; empowerment exists on a dynamic continuum with increasing levels of client participation. A model is presented that demonstrates the relationship of particular behaviors to client self-empowerment. Because the needs of clients with HIV/AIDS are continually fluctuating, and because case managers' behaviors will need to adapt accordingly, this model also incorporates the concept of balance as it pertains to HIV/AIDS case management.     

Predictors of quality of life in AIDS patients.

BACKGROUND: While much work has been completed in relation to measuring and defining the varying dimensions of quality of life in HIV/AIDS, very little research attention has been directed toward identifying factors that influence or enhance quality of life. OBJECTIVE: This study examined whether variables relating to demographic characteristics, severity of illness, psychological status, or level of engagement in nursing care would predict quality of life in persons with advanced or late stage HIV/AIDS. METHODS: A convenience sample of 162 hospitalized male and female patients with AIDS participated in this study. The participants completed the HIV Symptom Checklist, the Beck Depression Inventory, the HIV-QAM (a measure of changes in the status of hospitalized AIDS patients due to nursing care), and two measures of engagement in nursing care. The Living With HIV Scale was used as the measure of quality of life. The two components of this scale were analyzed independently. RESULTS: The strongest predictor of decreased quality of life scores was depression (accounting for 23% of the variance), with symptoms accounting for 9.75% and female gender accounting for an additional 8%. Two measures of patient engagement with nursing care providers contributed a total of 13.44% of the variance in quality of life scores. CONCLUSIONS: The findings emphasize the importance of recognizing and treating depression in persons with HIV/AIDS. The number of symptoms and their frequency also has a profound effect on quality of life. Although modest, study findings suggest that quality of life for an acutely ill, hospitalized patient with AIDS is enhanced through more active involvement or engagement in the process of nursing care.     

Mental health status and use of general medical services for persons with human immunodeficiency virus

BACKGROUND: Serious medical illness often is accompanied by psychological distress. Individuals experiencing mental disorders or symptoms have higher rates of morbidity and mortality, worse social functioning, and use of general medical services. OBJECTIVES: We sought to examine the association between mental health and use of general medical services for persons in care for HIV. DESIGN AND PARTICIPANTS: We used longitudinal data from the HIV Cost and Services Utilization Study (HCSUS), a nationally representative sample of 2267 HIV+ adults receiving care and who completed all 3 interviews during an 18-month period. MAIN OUTCOME MEASURES: Probability of use and general medical expenditures, by type of service. RESULTS: HIV+ individuals who screened positive for depression or had 5 or more mental health symptoms at baseline spent 20% to 25% more for general medical services in the following 12 months than HIV+ adults without mental health symptoms, after adjusting for disease severity and patient characteristics. Higher spending was largely the result of greater use of inpatient and emergency services. CONCLUSIONS: Psychological distress remains an independent predictor of general medical service use, although the magnitude of effect diminishes with better controls for physical well-being and previous service use. Identifying HIV patients with symptoms of affective or anxiety disorders may reduce overall treatment costs modestly.     

Community Health Nurses' AIDS Information Needs

Community health nurses (CHNs) provide direct nursing care to acquired immunodeficiency syndrome (AIDS) clients in their homes and in community settings such as clinics, long-term care facilities, and hospice facilities. Direct-care needs are exemplified in the case management of the client in the community. The case management of the AIDS client in the community can include direct care to prevent and control infections, to maintain nutrition and fluid status, to manage pain, to manage alterations in bowel and bladder elimination, to treat circulatory impairment, to treat the consequences of decreased activity and immobility, and to provide psychosocial and bereavement support and counseling. In addition, CHNs provide indirect care to clients and their families through such services as education, referral, and counseling. As part of case management, they provide education on the disease; financial, housing, and health resources; and referral to community AIDS services, centers, and support groups. CHNs are involved in AIDS prevention through public health education, counseling the public about sexual practices, counseling persons who have human immunodeficiency virus (HIV) infections, and AIDS-related complex (ARC), and making referrals to community resources for education, testing, and support. Prevention and education activities take place in health settings, social settings, and occupational or work settings.     

Correlates of depression among rural women living with AIDS in Southern India

Although depression may be commonly experienced by persons living with AIDS, it may be challenging for health care providers to identify persons who are suffering from depression symptoms, particularly if they are living in the more isolated rural areas of India. The purpose of this study is to assess correlates of depression among women living with AIDS in rural Andhra Pradesh, India. A total of 68 rural women living with AIDS (WLA) completed baseline data and were assessed by means of structured instruments. Regression modeling revealed that disclosure avoidance and making at least six health care visits in the last six months were all associated with depression. Further, living with a spouse was associated with lower depressive symptom scores. Stigma was not found to be associated with depression. Understanding correlates of depression can lead the way toward designing culturally-tailored interventions that can mitigate disclosure avoidance and improve the health of women. A more comprehensive health focus may be needed to empower the women to seek quality care for both physical health, as well as mental health, symptomatology.     

Mediation analysis of health‐related quality of life among people living with HIV infection in China

The effects of stigma, social support, and depressive symptoms on health‐related quality of life are well documented in the literature, but how these psychological factors interact with each other, and the combined effects when taken together on the health‐related quality of life for people living with HIV, remain unclear. This cross‐sectional study investigated 114 people living with HIV who were taking antiretroviral medication using the HIV/AIDS‐related Stigma Scale (Chinese version), the Social Support Rating Scale, the Center for Epidemiological Studies Depression Scale, and the Medical Outcomes Study–HIV health survey. Multiple linear regression analyses were used to examine the mediation effect of the psychosocial factors on health‐related quality of life. Results showed that stigma and social support did not have direct effects, but indirect effects on health‐related quality of life through a full mediation effect of depressive symptoms. The results indicate that interventions targeting depression might be the most effective approach to improving health‐related quality of life among people living with HIV who are taking antiretroviral medication in China.     

2008年全国艾滋病病毒感染者/艾滋病患者随访管理情况及数据质量分析

目的了解2008年全国艾滋病病毒感染者/艾滋病患者(HIV/AIDS)随访管理现状及其数据质量。方法于2009年1月下载艾滋病综合防治数据信息系统中的历史数据库,包括网络直报病例报告卡和随访表。对相关数据进行统计分析。结果截至2008年年底,累计报告现存活的HIV/AIDS患者的管理比例为44.1%;随访管理比例较低的HIV/AIDS的人口学特征主要有:男性、未婚、15~34岁年龄组、公共场所服务等流动性大的职业、民族为彝族和维吾尔族;通过注射吸毒途径感染的随访管理的比例低,仅为32.7%。在随访到的HIV/AIDS中,有7.4%的人在首次随访干预后仍存在不安全性行为。随访表整体填报较好,在涉及干预和关怀救助内容方面存在部分数据缺失和逻辑错误。结论针对处于性活跃期、注射吸毒途径感染以及彝族和维吾尔族两个少数民族的HIV/AIDS的随访管理是今后工作的重点之一;在加强随访干预工作的同时,要不断提高随访数据质量。     

Physical and psychosocial health in family caregiving: a comparison of AIDS and cancer caregivers

The objectives of this study were to compare cancer and AIDS family caregivers in regard to their physical and emotional health. The sample consisted of 26 caregivers of persons with cancer or AIDS. Study participants completed a questionnaire that included measures of depression, grief, symptoms of stress, caregiving demands, interpersonal relationships, health status, and quality of life. The data revealed that both AIDS and cancer caregivers reported high levels of stress and depression as compared to community norms. No significant differences were found between AIDS and cancer caregivers for any of the scale scores; however, the two groups differed on several individual subscales. Cancer caregivers demonstrated higher social functioning and were more likely to report that the work of caregiving itself disrupted their ability to socially engage with others. In contrast, AIDS caregivers were more likely to report that their own health limited their ability to socialize. Even though AIDS caregivers experienced less family support than cancer caregivers, they reported more rewards from caregiving. Results suggest that support delivered to caregivers emphasize a more inclusive approach to program delivery, versus a disease-specific perspective, in order to increase the depth and breath of services provided to families undertaking these challenges.