Research DIMENSION

Improving Human Immunodeficiency Virus/AIDS Palliative Care in Critical Care Jami S. Brown, DHEd, RN, CNN; Colleen Halupa, EdD, MS, MLT/MT (ASCP)

Background: Critical care nurses provide palliative care to many patients; often, this includes the patient diagnosed with human immunodeficiency virus (HIV)/AIDS. Ongoing education about both palliative care and this complex diagnosis prepares the nurse to provide compassion and informed care. Objectives: This study examines the effects of an educational intervention addressing palliative care in the intensive care unit and the needs of the HIV/AIDS patients and families. The study will evaluate the critical care nurses’ knowledge and competence in caring for this population following the educational sessions. Methods: Thirty critical care nurses were recruited from the critical care unit at a hospital in the south. An HIV/AIDS palliative care course provided participants background knowledge, general principles, and opportunities for critical thinking regarding palliative care. A pretest and posttest on palliative care were provided to each subject to assess knowledge and confidence in palliative care in critical care nursing. Results: The convenience sample of 30 nurses attained a mean pretest score of 82.9%. Their scores improved to 93.5% following the palliative care course. The nurses felt they improved in providing palliative care to patients and in taking responsibility for their practice. Ninety-three percent of the participants wanted to incorporate a palliative care course in nursing orientation. Discussion: The course improved nurses’ knowledge of palliative care for HIV/AIDS patients and their competency in palliative care. Thus, the palliative care course gave nurses deeper insight and improved their ability to provide competence palliative care. 216

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Vol. 34 / No. 4

DOI: 10.1097/DCC.0000000000000119

Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.

Improving HIV/AIDS Palliative Care

Keywords: competency, HIV/AIDS, nursing, palliative care [DIMENS CRIT CARE NURS. 2015;34(4):216/221]

More than 1.1 million people in the United States are living with human immunodeficiency virus (HIV), and in 2011, an estimated 487 692 persons were living with AIDS.1 With dramatic improvements in treatment for HIV and the decrease in mortality among persons with HIV, less attention has been focused on end-of-life treatment decisions.2 Yet, HIV remains a cause of comorbidity in patients dying in critical care units. Palliative care for patients with HIV includes components of pain and symptom management, advanced care planning, prioritization of life goals, and the support of individuals and families throughout the continuum of the disease to improve quality of life for both the patient and family. However, there are numerous stressors such as stigma, fear, anxiety, depression, and financial burden.3 Specifically, palliative care includes the management of symptoms, such as fatigue, dyspnea, and neuropathic pain, and treatment of nausea, vomiting, and diarrhea. Treatment of depression, psychosocial support for patients and families, and advanced care planning all fall under palliative care.4 Palliative care is an integral part of every health care professional’s role. It should not be seen simply as the compassionate care of dying patients but also should include assessing and treating pain and other problems. Yet, improving the quality of care for people with advanced serious illness and focusing on their preferences may help stabilize both total health care and social costs over time.5 One of the main goals of nurses working with dying patients is to provide a peaceful death experience through compassionate care. Past literature has indicated that we were not always achieving that goal, although much has improved in recent years.6 Inadequate pain and symptom control, communication problems, poor provider accountability, inadequate access to medical care, lack of adherence to medical directives, lack of information to make an informed choice about procedures, and failure to value the patient and family are commonly cited problems by families and health care providers of actively dying patients.7 However, it has long been appreciated that clinicians who care for dying patients and their families are faced with a complex set of clinical tasks. In addition to managing pain, palliative care involves being competent in responding to emotions of patients and their families, recognizing and communicating the imminence of death, support, and managing uncertainty.8 Although the end of life can be an emotional and physical process, few physicians and health care professionals are taught how to ease pain and address concerns of anger,

helplessness, and grief that patients and their families experience during their course of illness. Therefore, institutional resources are necessary to fund palliative care education and services. Competence in intensive and critical care nursing is based on a specific knowledge base, skill base, attitude and value base and experience base of intensive and critical care nursing, and the personal knowledge base and experience of each nurse.9 Few health care professionals are taught how to ease pain and address the anger, helplessness, and grief their patients and their families experience during terminal illness. Helping patients and families navigate the last weeks of life does not come ‘‘naturally.’’ Education, skill, and experience are essential to master palliative care. An educationally rich palliative care curriculum should include didactic and clinical experiences where learners observe the role modeling of competent and compassionate palliative care and have supervised experiential opportunities.5 Therefore, the study reported has examined the effects of an educational intervention designed to increase the competency of critical care nurses in providing palliative care to HIV/AIDS patients.

METHODS The purpose of this study was to increase the competency of critical care nurses in providing palliative care to HIV/AIDS patients. Thirty critical care nurses were recruited out of 42 based on availability and criterion from the critical care unit at a hospital in a small city in the south. All participants who were recruited volunteered to participate in the study and met the inclusion criteria: they were registered nurses who worked in critical care, had at least 3 months or more of critical care experience, and provided informed consent. The study was approved by the university and hospital institutional review boards and was considered exempt in institutional review board status. The HIV/AIDS palliative care course provided background knowledge, general principles, and opportunities for critical thinking in regard to palliative care. Content included an overview of HIV/AIDS palliative care along with common health and physical assessment skills, pharmacological interventions, nutritional measures, and communication skills, with emphasis on issues such as the stigma, experienced by patients with HIV/AIDS. The content outline included the following topics: & Introduction a. Define palliative care July/August 2015

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b. Important elements that are essential in providing HIV/AIDS palliative care & Ethical issues in the health care setting & Improving the style of communicating a. Comfort level and experiences in talking with patients about death b. Barriers in communicating c. Cultural beliefs in communicating & Summary a. The importance of palliative care The objectives of the educational offering were for nurses & to demonstrate an interdisciplinary approach to HIV/AIDS palliative care, & to demonstrate various techniques for communication with patients and families, and & to describe the elements of grief in caring for the patient and the bereaved family. The course was delivered in a traditional conference/ classroom at the hospital and used a variety of best practices in teaching and learning, including PowerPoint presentations, videos, handouts, and class participation. Because of amount of content being presented, the course was taught on Wednesday (8:00 AM to 12:30 PM) every other week during a period of 10 weeks to allow flexibility in the nurse’s schedule. Attendance was required to remain in the study, and all of the participants did complete the course. The participants were expected to comply invariably with all hospital policies that refer to classroom behavior, ethics, and conduct. No continuing education credits were given for this course. However, the nurses were paid for the educational course, and a certificate of completion was issued. The goal was for critical care nurses to understand the concepts and carryout components of palliative care for this extremely vulnerable population. A pretest and posttest on palliative care were provided to subjects to assess their knowledge of palliative care in critical care nursing. The pretest and posttest consisted of 35 multiple-choice questions about palliative care for HIV/ AIDS patients. A sample question from the survey is as follows: The primary goals of palliative care include all of the following except a. b. c. d.

relieving pain and distress. eliminating invasive diagnostic procedures. promoting autonomy. enhancing the quality of patients’ lives.

Questionnaire results were analyzed quantitatively utilizing a t test to assess statistically significant differences in nurses’ preintervention and postintervention scores. The nurses’ experience level was also assessed as an indepen218

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dent variable, which was compared with the dependent variable palliative care competency evaluated by the nurse manager and educator. The first section of the questionnaire contained 10 close-ended items used to describe the demographic characteristics of the sample. In addition, the dependent variables studied included the nurses’ attitude, competency, and evaluation skills in palliative care. An additional 9 Likert-type questions assessed perceptions of the importance of the goals of palliative care (extremely important, important, neutral, somewhat important, and not at all important). A final section included 11 Likerttype scale items that assessed positive and negative attitudes toward palliative care (strongly disagree, disagree, neutral, agree, and strongly agree). The nurses were also asked to complete an 8-item selfevaluation of their assessment and intervention skills, communication skills, critical-thinking skills, caring and relationship skills, management skills, leadership skills, teaching skills, and integration of knowledge skills. They used a Likert-type scale (least competent, somewhat competent, neutral, competent, and very competent). The researcher had the instruments evaluated for content validity, reliability, and feasibility by a panel of intensive care unit (ICU) nurses and nurse educator experts. These experts critiqued the instrument for specificity, clarity of questions, and survey intent. The researcher gave the same test to the same group of nurses and noted the correlation between testing and retesting and therefore considered the results reliable for use with this sample. There were not any revisions to the instruments after the pretest. To ensure reliability and validity, a 5-question semistructured interview was conducted in a focus group format to 5 randomly selected participants who were included in the 30-nurse group to complete individually. The semistructured interview was used to ask about their attitudes toward palliative care, attitudes toward working in the critical care area, and competency skills. Some of the responses by the participants were the following: & ‘‘I enjoy working in the critical care setting, yet I am unfamiliar with some of the skills.’’ & ‘‘I feel uneasy communicating about death.’’ & ‘‘I would like more education provided to me on ICU skills and palliative care.’’ These data were evaluated for common and contrasting themes. The data from the qualitative interviews were compared with the quantitative data.

Data Analysis The scores from the pretest and posttest on basic knowledge of palliative care were analyzed using descriptive statistics to determine the mean, mode, and median. A t test was used to compare the pretest and posttest scores

Vol. 34 / No. 4

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Improving HIV/AIDS Palliative Care

to measure if the intervention yielded statistically significant differences. This statistical test was used to compare 2 independent samples10 and was significant. A t test was also used to compare the nurse experience levels (as reported in years by the participants) with the competency scores, calculated by adding together the scores on questions that addressed knowledge of and attitudes toward palliative care. The researcher used these statistics to examine statistical differences between the knowledge of palliative care among novice and experienced nurses. The interview data were analyzed by summarizing participants’ attitudes toward palliative care and common themes. These themes were collated and compared with the quantitative data.

RESULTS The pretest and posttest on palliative care were provided to each subject to assess the nurses’ knowledge of palliative care in the area of critical care nursing and the key concepts and initiatives surrounding palliative nursing care. The scores from their pretest and posttest on the basic knowledge of palliative care are shown (Tables 1-3). The convenience sample of 30 nurses attained a mean pretest score of 82.97% correct, and a mean posttest score of 93.47%. Five nurses had 0 to 3 years of nursing experience; 4 had 4 to 6 years of nursing experience; 15 had 7 to 10 years of nursing experience; and 6 had 10 or more years of nursing experience. Subjects with nursing experience of 0 to 6 years had a mean pretest score of 85.44% and a posttest score of 93.56%. Subjects with nursing experience of 7 years or more had a mean pretest score of 82.10% and a posttest score of 93.19%. Paired-samples test analysis indicated minute differences in scores based on years of experience. Therefore, the subjects were examined as 1 group. The subjects scored well on the pretest and even better on the posttest. They scored best on symptom management of patients with HIV/AIDS and scored lowest on basic information such as pathophysiology and drug therapy of patients with HIV/AIDS. According to the evaluation, the nurses felt after the educational session they improved in providing palliative care to patients and in taking respon-

TABLE 2

Group

Pretest

Posttest

Mean

85.44

93.56

Median

83

97

Mode

91

91

SD

5.00

3.88

n

9

9

sibility for their practice. Their self-assessments of knowledge and skills identified areas where competency needed to be attained or improved, including updating knowledge of symptom management, improving communication skills, assessing spiritual needs, and learning better methods of teaching patients and families. Surveys were given to the participants after completion of the course about incorporating a palliative care course within nursing orientation. Therefore, in doing an evaluation of the course, the researcher evaluated the effectiveness of the student, course, and instructor and based on those results determined the effectiveness of the course. Surveys were given to the participants about satisfaction with the course, revisions to the current curriculum, and incorporating a palliative care course in nursing orientation; 93% of the participants agreed that it was important to incorporate a palliative care course.

DISCUSSION Many HIV/AIDS patients have a history of complex drug therapy, and although survival may be prolonged, the patients are often plagued by long-term toxicities as well as by the fear they may develop resistance to available therapies. Palliative care can help patients with these concerns and offer suggestions and alternative therapies. Patients with late-stage disease have improved control of physical symptoms, anxiety, insight, and spiritual well-being. TABLE 3

TABLE 1 Group

Paired-Samples Test Analysis of Subjects With Nursing Experience of 0 to 6 Years

Paired-Samples Test Analysis of All Subjects Group

Paired-Samples Test Analysis of Subjects With Nursing Experience of 7 Years and More Pretest

Posttest

Pretest

Posttest

Mean

82.97

93.47

Mean

82.10

Median

89

91

Median

86

100

Mode

86

91

Mode

86

86

SD n

5.10 30

3.43 30

SD n

93.19

5.20

3.46

21

21

July/August 2015

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Improving HIV/AIDS Palliative Care

Palliative care focuses on relief of troublesome symptoms as well as enhancement of end-of-life experience for both the patients and their family. However, a lack of clinical experience, knowledge, and competency in discussion of end-of-life care issues remains a major obstacle for provision of compassionate care to HIV/AIDS patients. Decisions regarding the pursuit of aggressive therapy versus end-of-life care should be discussed with the patient and/or surrogate by experienced health care personnel who are competent in palliative care.11 Throughout the nursing process, a critical role of the nurse is to guide the patient and family through all the information that is needed to understand care options. The emotional context of coping with illness, of grieving the many losses, and of anticipating death can make education and learning a challenge. Common education needs for patients and families include information related to the following:12 & disease, expectations for disease progression, and prognosis; & treatment options, including realistic, expected outcomes of treatment; & advanced care planning information and tools; & patients’ rights, especially as related to decision making and pain management; & care options, including hospice services and experimental treatments; & how to provide physical caregiving (for family caregivers); & signs of impending death; & community regulations related to dying at home; & the grieving experience; and & resources for grief counseling and bereavement services. Critical care nurses must provide the family and patient with emotional, psychological, and spiritual support, listening to and addressing their concerns throughout this crucial time to provide quality palliative care. Therefore, ongoing education is needed to ensure that all members of the ICU team are taught to communicate with patients and families and enhance the quality of palliative care. The course used improved nurses’ knowledge of palliative care for HIV/AIDS patients, gave nurses deeper insight into providing palliative care, and improved their ability to provide competent palliative care. Nearly all indicated that the course helped them better incorporate palliative care into their practice and said that the education offered by the course was important. Communicating with patients and families about palliative care was the main issue staff noted at the beginning of the study. Assessment and intervention skills were selected as the next most important issue on which more education was needed. All participants demonstrated basic competency in communication, assessment, and intervention at the end of the study. This study thus points to the utilization of 220

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including a palliative care course in orientation, with the competencies that nurses need to develop to provide this care. This study had some limitations. It was conducted at only 1 facility, and the sample was small. Some of the nurses were not able to provide care to patients with HIV. The lack of a control group did not permit an accurate estimation of the effects of palliative care education on nurses’ adherence to recommended practices. In addition, there was not a way to know if the nurses were providing palliative care before the study, and there were no tests done to see if their care improved. Lastly, some of the improvement in scores could have been from ‘‘testing effect’’ due to the nurses being given the same tests before and after the classes, which might cause them to remember some of the questions. Although the knowledge level of the nurses increased, and their fear of taking care of people decreased, and attitudes about taking people improved, there’s no way to know how much this will translate into their practice. Further research should be done to ensure that the workshop actually improves practice. Consistent and frequent education programs need to be implemented addressing knowledge gaps in contemporary critical care nursing. Future research needs to be directed into addressing and evaluating issues that relate to HIV/AIDS palliative care nursing knowledge and practice. Palliative care needs to be centered on the needs of the person with HIV/AIDS. In addition, the integration of the principles of palliative care in end-of-life care for people with HIV/AIDS must be further researched. Nurses need to become more creative in planning for the future of palliative care nursing education. Nurses need to instill, in themselves, the value of lifelong learning and continuing education. Therefore, health care institutions must revise and/or develop policies and guidelines to incorporate mandatory palliative care course (s) and competencies for nursing staff.

CONCLUSION Despite its limitations, this small study shows that education improves critical care nurses’ understanding of palliative care and increases their confidence in providing this care. Palliative care courses can make a significant contribution to nurses’ knowledge and insight and to their self-efficacy in providing palliative care.

References 1. Basic statistics. Centers for Disease Control and Prevention Web site. 2014. http://www.cdc.gov/hiv/living/index.html. Accessed September 3, 2014. 2. Wenger N, Kanouse D, Collins R, et al. End-of-life discussions and preferences among persons with HIV. JAMA. 2001;285(22): 2880

AIDS Palliative Care in Critical Care.

Critical care nurses provide palliative care to many patients; often, this includes the patient diagnosed with human immunodeficiency virus (HIV)/AIDS...
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