Hospice and home care for persons with AIDS/ARC: Meeting the challenges and ensuring quality

Every community is or will be faced with the challenge of caring for individuals with acquired immunodeficiency syndrome (AIDS) and AIDS-related complex (ARC). In most communities in the United States, home health care is an existing alternative to hospitalization. Although there are many potential barriers to home health and hospice care provision, these barriers are not insurmountable. As demonstrated by the community's response in San Francisco, careful planning, cooperation, and education reduce the barriers to allow persons with AIDS/ARC to receive care at home or to identify alternatives when home care is no longer an option. The AIDS Home Care and Hospice Program of the Visiting Nurses and Hospice of San Francisco is used as the model for the article. This program was the first of its kind in the world. It has developed an innovative approach to home and hospice care for persons with AIDS/ARC. Its sensitive and humane approach, offers support from early in the disease process (to assist patients as they struggle with difficult treatment decisions) until long after death occurs (to enable friends and family members to cope with the loss of a loved one). This article identifies the challenges that administrators and staff face in keeping the terminally ill individual with AIDS/ARC at home, offers suggestions to best meet the needs of the person with AIDS/ARC living at home, and suggests alternatives when home care is no longer an option.     

Hospice and home care for persons with AIDS/ARC: meeting the challenges and ensuring quality.

Every community is or will be faced with the challenge of caring for individuals with acquired immunodeficiency syndrome (AIDS) and AIDS-related complex (ARC). In most communities in the United States, home health care is an existing alternative to hospitalization. Although there are many potential barriers to home health and hospice care provision, these barriers are not insurmountable. As demonstrated by the community's response in San Francisco, careful planning, cooperation, and education reduce the barriers to allow persons with AIDS/ARC to receive care at home or to identify alternatives when home care is no longer an option. The AIDS Home Care and Hospice Program of the Visiting Nurses and Hospice of San Francisco is used as the model for the article. This program was the first of its kind in the world. It has developed an innovative approach to home and hospice care for persons with AIDS/ARC. Its sensitive and humane approach, offers support from early in the disease process (to assist patients as they struggle with difficult treatment decisions) until long after death occurs (to enable friends and family members to cope with the loss of a loved one). This article identifies the challenges that administrators and staff face in keeping the terminally ill individual with AIDS/ARC at home, offers suggestions to best meet the needs of the person with AIDS/ARC living at home, and suggests alternatives when home care is no longer an option.     

Hospice and home care for persons with AIDS/ARC: Meeting the challenges and ensuring quality

Abstract

Every community is or will be faced with the challenge of caring for individuals with acquired immunodeficiency syndrome (AIDS) and AIDS-related complex (ARC). In most communities in the United States, home health care is an existing alternative to hospitalization. Although there are many potential barriers to home health and hospice care provision, these barriers are not insurmountable. As demonstrated by the community's response in San Francisco, careful planning, cooperation, and education reduce the barriers to allow persons with AIDS/ARC to receive care at home or to identify alternatives when home care is no longer an option. The AIDS Home Care and Hospice Program of the Visiting Nurses and Hospice of San Francisco is used as the model for the article. This program was the first of its kind in the world. It has developed an innovative approach to home and hospice care for persons with AIDS/ARC. Its sensitive and humane approach, offers support from early in the disease process (to assist patients as they struggle with difficult treatment decisions) until long after death occurs (to enable friends and family members to cope with the loss of a loved one). This article identifies the challenges that administrators and staff face in keeping the terminally ill individual with AIDS/ARC at home, offers suggestions to best meet the needs of the person with AIDS/ARC living at home, and suggests alternatives when home care is no longer an option.     

Family caregiving of persons living with HIV/AIDS in Thailand: caregiver burden, an outcome measure

The present paper provides an initial picture of HIV/AIDS-affected families. It is evident that families play a major role of support for HIV/AIDS patients in Thai society. Caregiver burden is one of the patient-related outcomes, which is the most common outcome measure in caregiver research. The demands on the family caregivers of these patients are enormous and need to be addressed. The determinants that are associated with caregiver burden such as caregiver characteristics, patient characteristics and social stigma are important for nurses to minimize the burden of care so that appropriate interventions can be developed for persons with HIV/AIDS and family members who share the work of managing their care at home.     

How Caring for Persons with HIV/AIDS Affects Rural Nurses

Prior research findings about caregiving for persons with HIV/AIDS indicate that caregiving impacts nurses in three separate domains: personal self as a nurse in practice; interactions with the nurse's family members, friends, and colleagues; and interactions with persons with HIV/AIDS. However the impact caregiving for persons with HIV/AIDS has on rural nurses has not been extensively explored. A qualitative study of rural registered nurses' experiences of caring for persons with HIV/AIDS was conducted to determine how caregiving affects registered nurses in rural areas. Content analysis was used to analyze rural registered nurses' written comments about their experiences of caring for persons with HIV/AIDS. Themes identified from the nurses' accounts of instances of caregiving were the perceived risk of acquiring the virus, a lack of concern about HIV/AIDS, and a need for ongoing continued education about the care of persons with HIV/AIDS.     

Educational needs of family caregivers of persons living with HIV/AIDS in Thailand.

As the AIDS epidemic continues to overwhelm the acute care hospital system in Thailand, an increasing number of family members are required to provide care for persons living with AIDS (PLWA) in their homes. In response to the increasing demand for home care, a qualitative study using focus group methodology was conducted to learn more about the need for education and support for family caregivers of PLWA in Thailand. Eighteen family caregivers and 18 nurses caring for PLWA participated in four focus group discussions. The major themes identified were fear, stigma, sorrow, empathy, hopelessness, and hope. In addition, participants voiced a need for education to improve the knowledge and skills related to care of PLWA. These findings will be used to guide the development of a training program for family caregivers.     

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

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

Changes in life-style,needs and difficulties faced by caregivers of AIDS patients in home care

This study aimed at delineating the social and demographic profile of 17 home caregivers for AIDS patients, identifying the alterations occurring in their life style and detecting the main needs and doubts presented by them when assisting a person living with AIDS at home, as well as the difficulties stemming from the disease and the care given by them. We identified that the introduction of HIV/AIDS within the family generates a crisis situation and awakens many negative feelings in caretakers. An alteration in life routine takes place and there is also an overload of tasks to be carried out. The main difficulties of caretakers are related to taking care of the patient at home in addition to financial and emotional difficulties. We have shown the need for more effective orientation as to protection measure while caring for the patient. We have also pointed out the importance of orientation and educational actions to be given by health professionals, during which nurses' participation in home assistance/visits is essential.     

Home death--the caregivers' experiences

The objectives of this study were to evaluate caregivers' experiences concerning the care of a terminally ill loved one at home, and to compare the death experiences of caregivers with and without access to homecare programs. The primary caregivers of all the patients who died of cancer 6-18 months before the study period (1999-2001) in the Negev area were contacted. This group included 240 caregivers of patients who died in the home palliative care program and 404 caregivers of patients who died with no access to a home palliative care program. A total of 159 caregivers were interviewed, 76 from the home palliative program and 83 who had no access to a palliative care program. Death at home occurred for 80.3% of patients with access to homecare and 20.5% of those without access. Despite the fact that caring for a loved one at home was a greater financial and emotional burden, there was a greater overall satisfaction with the caring experience of those whose loved ones died at home and had access to the homecare program. Given appropriate professional support systems, home-based care at the end of life is preferable to most caregivers.     

The lived experience of gay men caring for others with HIV/AIDS: resilient coping skills

There is a dearth of research conducted on the relationship aspect of gay men caring for gay men. This Australian research conducted in 2002 investigated the emotional effects of HIV/AIDS on the gay male carers of gay men with the disease. This study was phenomenological inquiry and employed van Manen's approach to content analysis. Twelve participants for the study were recruited. The results produced emergent themes relating to coping with HIV/AIDS, living day-to-day with HIV/AIDS, coping with the last phase of AIDS towards death, saying goodbye and remembrance. This research highlights the resilient coping style of carers of persons living with HIV/AIDS. The research also gives rise to recommendations for practice and educational contexts in terms of the support and care considerations for persons living with HIV/AIDS and their carers.     

Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members

A fundamental barrier to improving the quality of medical care at the end of life is the lack of measurement tools. The Toolkit of Instruments to Measure End of Life Care (TIME) aims to fill that void by creating measurement tools that capture the patient and family perspective. To develop a conceptual model for a retrospective survey of bereaved family members that incorporates both professional and family perspectives on what constitutes good care at the end of life, a qualitative literature review of existing professional guidelines and six focus groups with bereaved family members from acute care hospitals (n = 2), nursing homes (n = 2), and hospice/VNA home health services (n = 2) was performed. The focus groups were held in Arizona, New York, and Massachusetts and included 42 bereaved family members/friends contacted 3-12 months from the time of patient's death. Domains of care that define quality end-of-life care were defined. Focus group participants defined high quality medical care as: 1) providing dying persons with desired physical comfort; 2) helping dying persons control decisions about medical care and daily routines; 3) relieving family members of the burden of being present at all times to advocate for their loved one; 4) educating family members so they felt confident to care for their loved ones at home; and 5) providing family members with emotional support both before and after the patient's death. The qualitative literature review yielded similar results, except that the professional guidelines did not mention the advocacy burden felt by families. These two sources provided the foundation for a conceptual model of patient-focused, family-centered medical care and a new tool for surveying bereaved family members. Views of bereaved family members' stories and professional guidelines help to identify key domains of quality of end-of-life care. A new survey instrument provides a way to incorporate the perspectives of bereaved family members in measuring the quality of end-of-life care.     

The experience of parents caring for adult children with HIV/AIDS

Antiretroviral treatment dramatically reduces mortality and prolongs the life expectancy of HIV/AIDS patients in Taiwan. The stigma attached to AIDS, and conflicts within the family result in family stress and emotional distress. Consequently, parents of adult children with HIV/AIDS endure perpetual distress while caring for their adult children. The purpose of this study is to elucidate the experiences of seven parents caring for children over 18 years of age with HIV/AIDS. Hermeneutic phenomenological methodology was applied to reveal the trajectory of parents' caring experiences and to discover the hidden meanings of the phenomena. Data were collected using semi-structured in-depth interviews lasting from 1.5 to three hours. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using thematic analysis with the concept of the hermeneutic circle. Four essential themes emerged, and were identified and clarified. The parents' caring experiences were: (1) We didn't expect our children's controversial illness, so we pretend to ignore the taboo; (2) We are suffering from shame, and our daily lives and interaction with others have changed; (3) We provide advice frequently to protect our children from pain, and try our best to take care of them in order to bring them better fortune; and (4) We feel helpless in the face of predestined causality, and wish we could bear the burden of sin for our children. Unconditional love and endless responsibility, furthermore, were the essential experiences of these parents. Our findings highlight the importance of patient-center nursing care for HIV/AIDS patients and for healthcare professionals to assist HIV affected families on related family stress throughout the illness trajectory.     

Knowledge and attitudes of Jordanian nurses towards patients with HIV/AIDS: findings from a nationwide survey

This study explored the knowledge and attitudes of Jordanian nurses toward patients with HIV/AIDS, particularly in regards to their sources of information and education. This survey utilized a cross-sectional design. A self-administered questionnaire developed by Eckstein was used in collecting the data. A total of 922 nurses completed the questionnaire. Overall, Jordanian nurses expressed negative attitudes toward patients with HIV/AIDS, and their level of HIV/AIDS knowledge was weak. Weak knowledge level was recorded among nurses in the following subsections: agent and immunology; course and manifestation; transmission and incidence; and precaution and prevention. Only in one subsection (risk group), did nurses show a good level of knowledge about HIV/AIDS. More than two-thirds of nurses (84%) refused to provide care to patients who tested positive for HIV/AIDS. Most of the nurse participants believed that currently provided HIV/AIDS information resources were inadequate (81.4 %). The majority of nurses were interested in support groups for staff nurses (96.5%). The major source of HIV/AIDS information obtained by Jordanian nurses was through Internet web sites (52.7%). The majority of nurses (96.2%) ranked their fear of getting AIDS from their nursing practice as overwhelming. The total attitude of participants towards patients with HIV/AIDS in all five subsections (i.e., fear of contagion, social stigma, fatal outcome of the disease, direct care, and education and counseling) was negative (84.3%). Accurate knowledge about HIV/AIDS along with an in-depth understanding of patients? needs can help alleviate much of the fear, anxiety, and stigma associated with caring for patients with HIV/AIDS.     

Knowledge and Attitudes of Jordanian Nurses towards Patients with HIV/AIDS: Findings from a Nationwide Survey

This study explored the knowledge and attitudes of Jordanian nurses toward patients with HIV/AIDS, particularly in regards to their sources of information and education. This survey utilized a cross-sectional design. A self-administered questionnaire developed by Eckstein was used in collecting the data. A total of 922 nurses completed the questionnaire. Overall, Jordanian nurses expressed negative attitudes toward patients with HIV/AIDS, and their level of HIV/AIDS knowledge was weak. Weak knowledge level was recorded among nurses in the following subsections: agent and immunology; course and manifestation; transmission and incidence; and precaution and prevention. Only in one subsection (risk group), did nurses show a good level of knowledge about HIV/AIDS. More than two-thirds of nurses (84%) refused to provide care to patients who tested positive for HIV/AIDS. Most of the nurse participants believed that currently provided HIV/AIDS information resources were inadequate (81.4 %). The majority of nurses were interested in support groups for staff nurses (96.5%). The major source of HIV/AIDS information obtained by Jordanian nurses was through Internet web sites (52.7%). The majority of nurses (96.2%) ranked their fear of getting AIDS from their nursing practice as overwhelming. The total attitude of participants towards patients with HIV/AIDS in all five subsections (i.e., fear of contagion, social stigma, fatal outcome of the disease, direct care, and education and counseling) was negative (84.3%). Accurate knowledge about HIV/AIDS along with an in-depth understanding of patients’ needs can help alleviate much of the fear, anxiety, and stigma associated with caring for patients with HIV/AIDS.     

Families in crisis: making the critical difference

As nurses, we are educated to care for the whole patient, to provide care for the body, mind, and spirit, and to improve the quality of life. When a patient has a crisis, his or her family is propelled into the crisis as well. Although critical care nurses have always participated in a caring manner by interacting with families of critically ill patients, nurses must be encouraged to actively seek ways in which to help these families. This article has provided guidelines and strategies for caring for families in crisis. The most effective way to care for family members in crisis is by demonstrating a conscientious concern for their loved one, that is, the patient. The knowledge that our nursing actions make a difference in the lives of family members gives us renewed insight into maintaining the care in critical care nursing.     

How respect and kindness are experienced at the end of life by nursing home residents

Respect and kindness are core principles of nursing practice, yet little is known about how they are experienced by nursing home (NH) residents at the end of life. The aim of this study was to examine the factors associated with being treated with respect and kindness in the last month of life as an NH resident. A retrospective survey of 208 bereaved family members was conducted in 21 NHs located in a city in central Canada. The majority of participants indicated that the resident had always been treated with respect or kindness. However, significant differences emerged, with not all family members believing that their loved one had always been treated with respect or kindness. The apparent lapses in care practices are troubling and indicate that steps must be taken to address them.     

The physiologic health care needs of HIV-infected black men on admission to an AIDS-dedicated nursing home.

The purpose of this study is to describe the physiologic health care needs of HIV-infected Black men on admission to an AIDS-dedicated nursing home. Participants were 68 Black men aged 26 to 60 years who were admitted to an AIDS-dedicated nursing home in the southern New England area between 1995 and 1999. The participants were very ill and weak on their admission to the nursing home, with most having diagnoses of AIDS (n = 65), an average Karnofsky Performance Scale score of 44 (SD = 14.90), and some degree of mental impairment. The late-stage of disease of the participants was reflected in their multiple symptomatology and functional impairment in activities of daily living. With patients living longer in the chronic disease stages of HIV disease, the results of this study provide support for the further investigation of the most effective long-term care settings for Black men with HIV/AIDS. The results also have implications for the multiple clinical roles nursing can assume within HIV/AIDS long-term care settings.     

云南省澜沧县HIV感染者和AIDS患者固定性伴告知情况及影响因素分析

目的了解云南省澜沧县艾滋病病毒(HIV)感染者和艾滋病(AIDS)患者告知固定性伴的现状和影响因素,为探讨提高性伴告知率,降低HIV感染者和AIDS患者的危险行为提供参考依据。方法采用横断面研究设计,于2009年4-8月,对澜沧县的HIV/AIDS感染者进行固定性伴告知现状调查和分析。结果 283名HIV/AIDS感染者中,将自己的感染状况告知固定性伴的占61.48%,其中73.56%由HIV感染者本人告知固定性伴,17.24%是经感染者本人同意,由防疫人员告知,3.45%未经感染者本人同意,由防疫人员告知。告知固定性伴最主要的原因是对方已经知道结果、希望得到对方的关爱、对方也是感染者;不告诉固定性伴的主要原因是担心不能维持目前关系、担心受到歧视、不知道如何与对方沟通。多因素logistic回归分析表明,不同文化程度、家庭主要经济创收者、告知时是否有其他人在场的HIV阳性者在是否告知性伴上的差异有统计学意义。结论为提高性伴告知率,应逐步改善HIV/AIDS的社会经济状况,提高社会、家庭和HIV感染者对艾滋病的认识,提高医疗卫生工作者咨询、检测、治疗的服务质量。