The structure of everyday self-care decision making in chronic illness

As health care reform strategists increasingly recognize the critically important potential of effective everyday self-care decision making for reducing the burden of illness and the strain on health service systems, we must find ways to understand and support it. In this study, the authors investigate persons with expertise in self-care management of type 2 diabetes, HIV/AIDS, and multiple sclerosis to understand how everyday self-care decision making is learned and experienced. They used interview, think-aloud, and focus groups to construct an account of how persons affected by these chronic diseases make decisions in relation to the choices in their everyday lives and learn to manage the untoward effects of these conditions according to their unique contexts and values. The findings form a conceptual foundation for ongoing inquiry into this complex phenomenon and provide insights that might assist clinicians to understand more fully the responses and attitudes of those they serve.     

Ministering to persons who face death. Practical guidance for care givers of persons making end-of-life treatment decisions

It is time care givers learn how to minister effectively and sensitively to those making end-of-life treatment decisions. To do so, care givers need to be aware of the various meanings death and dying hold. Culture, religion, past experiences with death and dying, and current situations can all influence the way persons perceive death and dying. Sensitivity to who the patient and family are, to how they perceive the disease or illness, and to how this perception influences their ability to achieve their life goals is a critical care-giving skill. Sensitivity, however, need not result in value neutrality or tolerance. Care givers should not be mindless executors of patient or family demands. Care givers must learn to talk honestly with patients and families about how a particular disease is most likely to progress and about the types of decisions they are likely to need to make. And then care givers need to present options, remaining sensitive to the patients' beliefs, values, and interests. Persons who care for the dying will face three types of patients, who will require different types of responses. The three types are patients who welcome death, patients who accept death, and patients who fight death. For all types of patients, care givers must keep the care patient centered and responsive to patients' priorities; facilitate informed decision making; promote communication among the patient, family, and healthcare team; support autonomous decision making; mediate conflicts; and offer spiritual counseling.     

Changing the culture of dying. A new awakening of spirituality in America heightens sensitivity to needs of dying persons

Americans increasingly believe there are material solutions to all problems. Though we once accepted death as a part of life, we now think that--with enough technology--death can be controlled and postponed. Throughout this century, we have moved the dying process from the home to institutional settings. But institutions have a tendency to push all care to its logical end, which leads to alienation, fragmentation, and diminishment. Alienation is the result of the isolation and regimentation found in acute and skilled nursing care facilities. When care givers are indifferent to patients' pain, or do not know how to control it, they further impair the ability of dying persons to interact with others. Care for the dying person, "system by system, organ by organ," as is typical in institutional settings, fragments the dying process into a series of medical events. And, finally, institutionalized care often results in a diminishment of respect by care givers, who may come to view the dying person more as an object of academic interest than as a human whose spiritual needs may transcend physical ones. Such behavior has begun to show us the human costs of denying death and is contributing to a reawakening of spirituality in this country. The devastating effects of alienation, fragmentation, and diminishment can be ameliorated by a heightened sensitivity to the dying person's spiritual needs. With the proper supports, the dying process can be relocated from institutions to the home. Specialized training can educate healthcare professionals about palliative care and human needs at the end of life. We can rehumanize dying persons by first rehumanizing their care givers, specifically addressing the issues of stress and burnout on the job. Ultimately, the way we give care at the end of life reflects broader issues in U.S. culture. Only when communitarian values replace individualistic ones will resources be reallocated in a manner that best serves the most people. Only then will physicians, nurses, and other care givers receive rewards for supporting the dying person when tests and treatment are no longer needed.     

Women's work: volunteer AIDS care giving in northern Thailand

Because persons with AIDS in Thailand usually are cared for by their families, and because government AIDS policy relies upon this assistance for the care of the country's sick, the research reported here addressed the questions: Who are the home and community care givers for PWA? What kind of care do they give? And, What is the impact of care giving on the care giver(s)? Informants were drawn in 1998-99 from a long-term birth cohort study of a non-clinical urban population in the country's province of highest AIDS mortality, ChiangMai. The study was part of a larger, exploratory ethnographic study of the interplay among health, reproduction and development among persons born in 1964 and their mothers that I began in 1973. Findings include that among care-givers, parents, overwhelmingly mothers, and wives considered it their place, duty and moral benefit to care for adult children or husbands sick with AIDS.     

Women's Work: Volunteer AIDS Care Giving in Northern Thailand

SUMMARY

Because persons with AIDS in Thailand usually are cared for by their families, and because government AIDS policy relies upon this assistance for the care of the country's sick, the research reported here addressed the questions: Who are the home and community care givers for PWA? What kind of care do they give? And, What is the impact of care giving on the care giver(s)? Informants were drawn in 1998–99 from a long-term birth cohort study of a non-clinical urban population in the country's province of highest AIDS mortality, Chiang Mai. The study was part of a larger, exploratory ethnographic study of the interplay among health, reproduction and development among persons born in 1964 and their mothers that I began in 1973. Findings include that among care-givers, parents, overwhelmingly mothers, and wives considered it their place, duty and moral benefit to care for adult children or husbands sick with AIDS.     

Safeguarding patients' dignity. The revised directives discuss spiritual and professional considerations

The Catholic health ministry recognizes that caring for the spiritual nature of a person is a high priority. The rights of patients and residents in their relationship with care givers are also important. These topics are treated in Parts 2 and 3, respectively, of the Ethical and Religious Directives for Catholic Health Services. This article focuses on those directives. Directive 10 says pastoral care should be available to all persons in a Catholic healthcare facility, no matter their religious affiliation. Directives 12 to 20 are concerned with the reception of the sacraments of baptism, penance, anointing, and communion by Catholics. Directive 21 discusses the appointment of priests and deacons to the pastoral care staff. Directive 23 reminds care givers that respect for human dignity must inform all Catholic healthcare. Directives 24 and 25 discuss norms for responding to advance directives and the responsibilities of surrogates. Directives 26 to 28 are concerned with free and informed consent on the part of patients and surrogates. Directives 29 to 30 say care givers have a moral obligation to preserve a patient's anatomical and functional integrity. Directive 31 discusses the ethical limits on medical research, and Directive 33 discusses therapeutic procedures likely to harm the patient. Directive 34 says care givers must protect patients' privacy. Directive 36 discusses the care of women who have been raped, including treatment that would prevent ovulation as a result of the rape. Directive 37 says ethical consultation should be available to all Catholic facilities, usually through an ethics committee.     

Health literacy and health-related knowledge among persons living with HIV/AIDS

BACKGROUND: Functional health literacy is associated with illness-related knowledge, understanding, and treatment perceptions for several chronic illnesses. This study examined health literacy in relation to knowledge and understanding of HIV/AIDS. METHODS: Persons living with HIV/AIDS recruited from AIDS service organizations and HIV clinics completed the Test of Functional Health Literacy for Adults (TOFHLA) reading comprehension scale and measures of health status, knowledge and understanding of health status, perceptions of primary care givers, and perceptions of anti-HIV treatments. RESULTS: Eighteen percent of the sample scored below the cutoff for marginal functional health literacy on the TOFHLA. Controlling for years of education, persons of lower health literacy were significantly less likely to have an undetectable HIV viral load, somewhat less likely to know their CD4 cell count and viral load, and lower health-literacy persons who knew their CD4 count and viral load were less likely to understand their meaning. Lower health literacy was also related to misperceptions that anti-HIV treatments reduce risks for sexually transmitting HIV and beliefs that anti-HIV treatments can relax safer-sex practices. CONCLUSIONS: Poor health literacy creates barriers to fully understanding one's health, illness, and treatments. Misperceptions of treatment in the case of HIV infection creates danger for potentially transmitting treatment-resistant strains of HIV. These results have implications for patient education and treatment programming for people who have poor health-literacy skills and are living with HIV/AIDS.     

Three factors critical for end-of-life care

Appropriate care of persons with life-threatening illnesses requires a different, perhaps higher level of response from organized healthcare than has been typical in the past. This involves three critical components: Leaders must be committed, visible advocates of high-quality end-of-life care. This enables them to plan changes, deploy resources, and integrate this commitment throughout the organization's strategic plan. Ensuring appropriate care of the dying requires adequate human and financial resources. First, the organization must fully identify the educational and service needs of patients, families, and care givers experiencing life-threatening illnesses. The organization must work well with other community-based organizations to address identified needs. Senior managers can improve care by personally commissioning teams, acknowledging success, and rewarding performance. Finally, organizational goals, strategies, and performance objectives must be shaped by a commitment to ensure appropriate care of the dying. Our commitment to the dying must be based on our values. An organizational "statement of rights and responsibilities" is one way of providing a visible expression of the mission, core values, and mutual responsibilities among care givers and patients, residents, HMO members, and clients.     

Easing the burden of stress. A stress management program can help eldercare professionals cope

Healthcare professionals in general, and those who care for the elderly in particular, must cope with a number of stressors in the working environment. Moreover, because care givers tend to put others' needs before their own, they often place an added burden of stress on themselves. Eldercare professionals must often forego the reward of finding a cure for their patients. In addition, the persons they care for can sometimes become overly dependent, depressed, unappreciative, self-centered, and demanding. The daily effort to deflect or diffuse this negative energy can take its toll on care givers, leading to coping deficiencies that themselves increase workplace tension and stress. Not only individuals, but entire departments can develop dysfunctional reactions to stress. To break this vicious cycle and improve workplace morale, facilities can implement stress management programs. As part of such a program, supervisors and managers identify stressors in the environment and suggest ways to alleviate or eliminate their effects. Once morale improves, coordinators should shift the program's focus to maintaining employee morale.     

Pastoral care's role in a reformed system. Pastoral care professionals need to promote the spiritual dimension of healing throughout the continuum of care

The emerging structure of healthcare delivery is challenging many elements of traditional pastoral care. With these changes, how can pastoral care professionals be on the cutting edge of tomorrow's pastoral care ministry? Pastoral care givers must understand that the individual with holistic needs will be at the center of the reformed healthcare system. All providers will share the responsibility and financial risk of providing high-quality care to each client. Pastoral care departments will need to develop systems to objectively measure the quality of their spiritual and religious care services, as well as patient or client satisfaction. Pastoral care professionals must take the lead in developing a vision of spiritual care that reflects the new paradigm of integrated delivery. They must also share the vision of integrated spiritual care with opinion leaders who can be advocates for an expanded vision of pastoral and spiritual care within the network. Ideally, faith communities should be centers for care, healing, and wellness, with hospitals as extensions of those communities. Within such a network, pastoral care givers can organize programs, workshops, and retreats around spirituality and wellness as part of the faith community's mission. In addition, pastoral care professionals can help clients learn about themselves and their life-styles and make healthier choices. Pastoral care givers need to recognize that within brokenness there is also wholeness, wisdom, and new opportunities. When we are free of our own agenda, we can empower others. Together, with God's grace, pastoral care givers can shape a new future and make it happen.     

教育工作者对艾滋病致孤儿童认知调查

目的了解教育工作者对我国艾滋病流行以及致孤儿童的认知程度,为探索经济、有效、可持续的干预策略提供依据.方法自行设计问卷,对103名来自艾滋病项目省的教育行政官员和教师进行调查.结果被调查者对艾滋病流行态势以及国家有关政策了解不足,且对艾滋病的流行尚未引起足够重视.行政官员与一线教育者认知差异无统计学意义;超过80%的人认为艾滋病致孤儿童问题比较严重,100%均认为应优先投入资源,采取措施予以应对.结论针对艾滋病致孤儿童开展基于社区与学校的关爱与支持工作十分必要;应对开展关爱工作的核心人群即教育工作者进行培训与教育.     

Rights and respect. Legal and ethical issues challenge today's mental healthcare professionals

The special circumstances of patients in mental health facilities often make questions concerning patient autonomy, freedom of choice, and consent to treatment even more complex than they are in other contexts. Individual facilities need to identify the ethical issues they are likely to encounter and create policies that address them effectively. The advent of managed care has created unprecedented access problems for mental healthcare providers. In many cases patients must be proven dangerous to themselves or others before they can be admitted for emergency care; because it is difficult to prove this, many persons go without needed treatment. The high costs of care and prejudices against persons with mental illness also create ethical problems. The necessity of performing clinical evaluations raises important ethical issues as well. Care givers evaluating someone at the request of a school, employer, or court should be sensitive to the possible consequences of their evaluation. They should also restrict their diagnoses to their area of competency and inform clients of the purpose of the evaluation, its possible consequences, and the limits of its confidentiality. Mental health professionals must also respect patients' rights to informed consent and understand the issues of voluntary or involuntary admissions. In addition, care givers should be aware of the various issues created by the need to occasionally control patients' behavior. Finally, for mental healthcare facilities, it is essential to establish an ethics committee to address these issues.     

Providing support to caregivers and self-care

The evolution of HIV/AIDS care has resulted in a wide range of caregivers who work out of public and private hospital facilities, nongovernmental organizations (NGOs) and community-based facilities. Others are volunteers and community health and social workers based at facilities or community sites. Many caregivers are family members or part of a client's close social network. Additionally, people living with HIV/AIDS (PHA) themselves engage in self-care and provide support to other PHA through support groups. In the best-case scenario the services of these caregivers are sometimes provided free of charge at one site by a specialized NGO. In many cases, however, a person wishing to gain access to care and social services may need an understanding how the systems and procedures of various institutions operate. Many PHA are unprepared for the administrative, financial, and legal barriers that they may encounter. To cope with this need, a new type of support service called the "buddy" system has emerged. Buddies are individuals who are less directly involved with, but who know about HIV/AIDS, the services available and the rights of PHA. A buddy is close enough for the PHA to approach, has sufficient time to devote to him/her and can be asked almost everything. The article on the Rio de Janeiro Buddy Project provides an example of a project for gay men in Brazil. In other parts of the world where the buddy system is non-existent, the PHA must often rely on support provided by family and friends.     

Spiritual care of the person with AIDS. Literature and art can touch closed hearts

Spiritual ministers, challenged to find meaningful ways to heal the hearts of persons with AIDS, are turning to some untraditional sources for help. Poetry, art, and stories are among the creative instruments for healing that pastoral ministers are bringing to the bedsides of the terminally ill. The story is the primary tool of spiritual care. Spiritual ministers working with persons with AIDS and their families should elicit and listen to their stories, which serve multiple purposes. Telling the stories is therapeutic for the person with AIDS. For the minister, the stories identify areas that need reconciliation, as well as those which call for celebration. Finally, when the time is right, the minister can tell another story, one that offers consolation and hope to the afflicted. Ritual is another tool of spiritual care. Just as the concrete image symbolizes the spiritual reality, so, too, does ritual facilitate or help celebrate spiritual healing. The Bible is a rich source of ideas for creative ritual. Other effective tools are art, drama, poetry, guided meditations, and dreams. In the hands of sensitive care givers, they are instruments of spiritual healing.     

Clinical research, prophylaxis, therapy, and care for HIV disease in Africa.

By the end of the century, citizens of resource-poor countries will constitute 90% of the world's human immunodeficiency virus (HIV)-infected people. Clinical management of such persons in developing countries has been neglected; most AIDS research has concentrated on epidemiology, and donor agencies have generally invested in the prevention of HIV infection. The heavy burden of HIV disease in Africa requires that care for AIDS be addressed, and prevention and care should be seen as interrelated. Prevention and treatment of tuberculosis, the commonest severe infection in persons with AIDS in Africa, illustrate this interrelationship. We outline priorities for applied research on the management of HIV disease in a resource-poor environment, and discuss prophylaxis, therapy for opportunistic diseases, terminal care, and use of antiretroviral therapy. Research should define the standard of care that can realistically be demanded for HIV disease in a resource-poor environment. Research and public health programs for AIDS in developing countries must address AIDS care and attempt to reduce the widening gap between interventions available for HIV-infected persons in different parts of the world.     

Educating nursing students about quality care and safe practices in the AIDS epidemic

Nursing students, as future health care providers, need comprehensive instruction about AIDS--the many manifestations of both the disease itself and the pandemic. As health educators and practitioners, nurses play a major role in safeguarding the health care setting and the community by their efforts in preventing transmission of the AIDS virus. Nurses are and will continue to be responsible for administering the major portion of the direct health care that AIDS patients require and for teaching basic nursing skills to other care givers. According to a 1987 survey of 461 nursing programs conducted by the American Association of Colleges of Nursing, AIDS content is being incorporated into the curriculums of the majority of programs that responded. Students require an in-depth knowledge of AIDS to enable them to address effectively the needs of AIDS patients and their families. Because of the complex psychosocial, ethical, and legal issues, careful attention must be given to the development of students' skills in making clinical decisions that will promote effective nursing intervention when addressing problems in nursing care. Curriculums should also include assessment of the special needs of members of minority groups that are disproportionately affected by AIDS. Schools of nursing in colleges and universities can serve as key resources for developing curriculums, policies, and practice patterns that will assist the nursing community and the public in responding to the AIDS epidemic.     

A sense of community. Senior living communities must allow for mission, mutuality, and myth

Most persons move to senior living communities because they want to regain the sense of "community" lost when they left their families, neighborhoods, and community networks. By focusing on mission, mutuality, and myth, the organization can offer residents this feeling of belonging. The mission statement must become the heart of the organization. It should represent both resident and staff expectations and goals. Community also develops around mutuality, a life-sustaining and growth-promoting matrix of care, comprising resident-staff care, staff-resident care, resident-resident care, and staff-staff care. Myth, the third component of community, is a way of making sense of what is often a senseless world and enhancing people's feeling of community. To facilitate coping with the stresses of aging, senior living community staff must sustain and promote myths, especially religious myths, images, and symbols. St. Leonard Center, Dayton, OH, is a senior living community that has incorporated these three components into its organization to make it a community in the true sense.     

妇幼保健人员艾滋病知识态度调查

目的 :了解深圳市妇幼保健人员艾滋病的知识了解情况 ,为进一步做好预防与控制艾滋病及培训工作提供依据。方法 :随机选择 4家医院妇幼保健医务人员进行问卷调查。结果 :(1)调查对象对安全套 ,共用注射针头及输血与艾滋病传播的关系等回答正确率较高 ,而对蚊虫叮咬、母婴传播等问题回答正确率较低。 (2 )相当部分医务人员对 HIV感染者不愿意提供医疗服务。结论 :妇幼保健人员的艾滋病知识不足 ,迫切需要进一步的专业培训 ,同时要宣传对 HIV感染者 (病人 )的关怀政策     

The cost of AIDS: an agenda for research.

It is generally not appreciated how much we have learned about AIDS in the relatively short time - about 7 or 8 years - since it made its first appearance in the United States. We have learned not only its cause and its way of transmission, but we also have data, though not perfect data, on its incidence and prevalence as well as an increasing body of data on the medical care costs of persons with AIDS. There are few other diseases for which we have as much information on incidence and prevalence, and especially on costs. In addition, various models have been constructed to project the future incidence and prevalence of the disease and the medical care costs associated with it. Nevertheless, serious gaps in our knowledge remain: inadequacies of current data on the number of persons with AIDS and especially on the number of persons infected with HIV; inadequacies and limitations of the data on the medical care costs of persons with AIDS; and an almost total lack of data on the number of persons infected with HIV with symptoms and conditions other than AIDS and their medical care costs. These gaps in our knowledge will be discussed in detail, and various types of studies to fill them will be suggested.