R. Kevin Mallinson

A grounded theory of families responding to mental illness.

Despite decades of research documenting family burden related to mental illness of a relative, little is known about families’ responses over time. A grounded theory study was designed to describe families’ responses to these severe mental illnesses. Twenty-nine participants representing 17 families were interviewed 3 times over 2 years. Interviews were analyzed using constant comparison. Living with ambiguity of mental illness was the central concern. The basic social process was pursuing normalcy and included confronting the ambiguity of mental illness, seeking to control impact of the illness, and seeing possibilities for the future. Goals were managing crises, containing and controlling symptoms, and crafting a notion of “normal.” Strategies were being vigilant, setting limits on patients, invoking logic, dealing with sense of loss, seeing patients’ strengths, and taking on roles. The study revealed that families were profoundly affected by the social contexts of mental illnesses.

Challenges in Language, Culture, and Modality: Translating English Measures Into American Sign Language

Background: Few health-related questionnaires have been translated into American Sign Language (ASL), precluding Deaf adults from full participation in health-related research. Objectives: To translate self-report measures (written English) into sign language and to evaluate the equivalence of the ASL versions to the original English versions of the measures. Methods: A descriptive-comparative design with a derived etic (outsider) perspective was used to evaluate equivalency between the English version of the Self-Rated Abilities for Health Practices (SRAHP) and an ASL version. Both versions were administered to 24 bilingual (English and ASL) adults. Analysis included correlation between total scores and comparison of internal consistency of both versions; psychometric properties of the signed SRAHP were computed for 105 Deaf adults who participated in a study of the Deaf Heart Health Intervention (DHHI). Results: The correlation between total scores on ASL and English versions was .92, item-to-total correlations ranged from .08 to .80 on the English version and from .33 to .80 on the ASL version. Cronbachs alpha was .91 for the English version and .90 for the ASL version. Mean scores on the ASL version were significantly lower for the all-Deaf DHHI sample (n = 105) than for the bilingual subjects (n = 24) although internal consistency remained high (Cronbachs alpha of .93 and item-to-total correlation of .38-.74) for the new ASL version. Discussion: The use of an adapted translation model resulted in a sound ASL version of a health-related measure. Results support use of the derived etic strategy for translating measures from their original language into new languages. The approach is also appropriate for changing modalities from written form to other modalities, such as the visual-manual modality of ASL.

Perceptions of HIV/AIDS by Deaf Gay Men

Deaf gay men represent a subpopulation of the gay male community at particularly high risk for HIV/AIDS due to numerous barriers including language, stigma, and inequitable access to health services. The participants in this exploratory pilot study (N = 5) struggled with the ongoing threat of HIV infection and the pervasive nature of AIDS-related debilitation, death, and grief. Whether HIV infected or not, they described living at the intersection of multiple communities--the deaf, gay, and hearing--each characterized by unique communication styles, cultural expectations, and a propensity to marginalize outsiders. Health care providers were perceived as lacking compassion and largely ignorant to the needs of deaf persons, in general, and deaf gay men, in particular. Printed HIV materials were considered culturally inappropriate, incomprehensible, and ineffective. These findings suggest an extraordinary risk for adverse mental and physical health outcomes if care is not appropriately designed for this vulnerable population.

The lived experience of AIDS-related multiple losses by HIV-negative gay men.

The gay male communities of the United States have experienced the most AIDS-related deaths over the longest period of time. The burden of grief for these men is unique and largely unaddressed in nursing research and practice. This phenomenological study explored the lived experiences of six HIV-negative gay men with AIDS-related multiple losses. The analysis of the interview data uncovered rich descriptions of the mens lives as uninfected gay males in the midst of an ongoing epidemic. The two overall themes that emerged from the narratives were the meaning of multiple losses and the management of the losses. The effects of AIDS-related losses permeated the lives of these men, resulting in significant emotional, psychological, physical, and spiritual challenges. Concerns for health promotion and disease prevention, and implications for nursing practice, research, and education are offered.

Essential nursing competencies related to HIV and AIDS.

With nearly 33 million global citizens living with HIV or AIDS, the need for a highly qualified, competent nursing workforce is critical. With the recent increase in global funding to expand access to antiretroviral therapy, there have been considerable efforts to improve the capacity of nurses to initiate and maintain antiretroviral therapy while evaluating its effectiveness, monitoring for side effects, reducing the incidence of drug–drug interactions (including drug interactions related to therapies provided by traditional healers), promoting adherence to therapies, and providing management of symptoms. Therefore, using a participatory action approach, nursing leaders from six sub-Saharan African countries collaborated to develop the essential nursing competencies related to HIV and AIDS. These competencies can help to guide preservice education related to HIV and AIDS, to strengthen in-service or capacity-building programs designed for already qualified nurses, and to guide policy and regulatory reform in the context of task-shifting, task-sharing, and scope of nursing practices. This is an online Supplement to the Journal of the Association of Nurses in AIDS Care. Visit www.nursesinaidscarejournal.org for easy navigation. A Supplement Preview was published in the January/February 2011 issue, Volume 22, Number 1. The Supplement Preview and Online Supplement are supported by grant number U92HA07230 from the U.S. Department of Health and Human Services, Health Resources and Services Administration, funded by the Presidents Emergency Plan for AIDS Relief.

Essential core competencies related to HIV and AIDS are critically needed in nursing.

Michael V. Relf, PhD, RN, ACNS-BC, AACRN, FAAN Julia Mekwa, PhD, RN, RM Cynthia Chasokela, PhD(c), MEd, BScN, SRN, RMN, SCM Christina Booth, BA Lisa Deng, Student R. Kevin Mallinson, PhD, RN, AACRN, FAAN Keabitsa Ramantele, BSEd, RN, RM Elizabeth Letsie, BSEd, RN, RM Jasintha Mtengezo, MPH, BScN, UCM, DipN Winnie Nhlengethwa, PhD, RN, SRM, FNP, SRH Dorothy Powell, EdD, RN, FAAN Adele Webb, PhD, RN, AACRN, FAAN Tony Diesel, BA Cur (Admin & Education), Dipl (Gen Nursing), Dipl (Psychiatric Nursing), RN Amanda Liddle, DrPH, RN, FAAN Michael V. Relf, PhD, RN, ACNS-BC, AACRN, FAAN, is an associate professor and assistant dean for Undergraduate Education, Duke University School of Nursing, Durham, NC. Julia Mekwa, PhD, RN, RM, Head of Department, Department of Nursing Science, University of Zululand, Republic of South Africa. Cynthia Chasokela, PhD(c), MEd, BScN, SRN, RMN, SCM, Director of Nursing Services/Chief Nursing Officer, Ministry of Health and Child Welfare, Zimbabwe. Christina Booth, BA, Duke University, Durham, NC. Lisa Deng, Student, Duke University, Durham, NC. R. Kevin Mallinson, PhD, RN, AACRN, FAAN, Assistant Professor, Department of Nursing, Georgetown University School of Nursing & Health Studies, Washington, DC. Keabitsa Ramantele, BSEd, RN, RM, President, Botswana Nurses Association, Botswana. Elizabeth Letsie, BSEd, RN, RM, Chairperson, Lesotho Nursing Council, Lesotho. Jasintha Mtengezo, MPH, BScN, UCM, DipN, Director of Education Programs, Nurses and Midwives Council of Malawi, Malawi. Winnie Nhlengethwa, PhD, RN, SRM, FNP, SRH, Rector, Nazarene Higher Education Consortium & Principal, Nazarene College of Nursing, Swaziland. Dorothy Powell, EdD, RN, FAAN, Associate Dean, Global and Community Health Initiatives, Duke University School of Nursing, Durham, NC. Adele Webb, PhD, RN, AACRN, FAAN, Executive Director, Association of Nurses in AIDS Care, Akron, OH. Tony Diesel, BA Cur (Admin & Education), Dipl (Gen Nursing), Dipl (Psychiatric Nursing), RN, Regional Director, Nurses SOAR! Durban, Republic of South Africa. Amanda Liddle, DrPH, RN, FAAN, Project Director, Nurses SOAR! Georgetown University, School of Nursing and Health Studies, Washington, DC.

Grief in the Context of HIV: Recommendations for Practice

Grief is a universal human response to loss. While the symptoms of grief are distressing and uncomfortable, they usually diminish over time without therapy. For persons grieving an HIV-related death, however, a variety of unique factors may interfere with the healthy resolution of symptoms. When the grief process becomes complicated, a person may experience serious alterations in physical health and/or disruptions in daily functioning. To assess grief, nurses need to apply interpersonal skills and therapeutic communication techniques in a compassionate manner; currently, no one screening instrument is optimal for evaluating grief in the clinical setting. The person experiencing grief or complicated grief may be referred for support services or counseling, pharmacologic interventions, or cognitive behavioral therapy. This report summarizes evidence from the literature and clinical practice to support recommendations for the practice of nurses caring for persons with HIV-associated grief; recommended strategies are illustrated through an exemplar case study.

Essential nursing competencies related to HIV and AIDS: Executive summary.

With nearly 33 million global citizens living with HIV or AIDS, the need for a highly qualified, competent nursing workforce is critical. With the recent increase in global funding to expand access to antiretroviral therapy, there have been considerable efforts to improve the capacity of nurses to initiate and maintain antiretroviral therapy while evaluating its effectiveness, monitoring for side effects, reducing the incidence of drug-drug interactions (including drug interactions related to therapies provided by traditional healers), promoting adherence to therapies, and providing management of symptoms. Therefore, using a participatory action approach, nursing leaders from six sub-Saharan African countries collaborated to develop the essential nursing competencies related to HIV and AIDS. These competencies can help to guide preservice education related to HIV and AIDS, to strengthen in-service or capacity-building programs designed for already qualified nurses, and to guide policy and regulatory reform in the context of taskshifting, task-sharing, and scope of nursing practices.

The value of certification in HIV/AIDS nursing.

During the past decade, there has been an explosion of scientific advances in the treatment of HIV/AIDS. With the introduction of protease inhibitors, fusion inhibitors, and resistance testing, the practice of HIV/ AIDS nursing has become increasingly challenging and complex. Simultaneous with pharmacologic and treatment advances, 40,000 new cases of AIDS are diagnosed each year (Centers for Disease Control and Prevention, 2002). In addition, current epidemiologic evidence demonstrates the significant impact of HIV and AIDS on African Americans and Hispanics (Centers for Disease Control and Prevention, 2002); at the same time, a second wave of HIV seems to be emerging among young gay men (Valleroy et al., 2000). A decade ago, when pharmacologic interventions were limited, dedicated inpatient AIDS units were common in the AIDS epicenters and were staffed by nurses who self-identified as HIV/AIDS nurses. Today, however, very few dedicated AIDS units exist, and a great segment of HIV-oriented care is offered in settings outside the acute care setting. Because HIVpositive persons are living longer and healthier lives, they are likely to encounter every specialty nursing practice from mental health and addictions nursing to maternal/newborn, critical care, and emergency nursing. Consequently, many nurses today do not identify themselves as HIV/AIDS nurses despite a practice frequented by persons living with HIV/AIDS. However, given the complexities of today’s HIV/AIDS-related treatments, it is essential that nurses possess specialty knowledge to provide state-of-the-science, evidencedbased HIV-oriented nursing care.

Deaf culture: when "positive" is a good thing.

In spite of our inauspicious first discussion, this deaf man and I eventually became close friends. In 1989, I could never have imagined that deaf gay men would still have the angry distrust of health care providers well into the new millennium. Was his allegation based on fact? Of course not. But his perception was based on experience. I have come to appreciate that the perceptions held by a marginalized community carry more power than what outsiders might call the “truth.” During the past decade of the HIV epidemic, many continuing education programs for nurses have echoed a familiar theme: the “face of AIDS is changing.” Unfortunately, the faces of deaf persons have gone unrecognized; they are losing their struggle with HIV/AIDS. To this day, many deaf gay men have not mastered the facts or interpersonal skills to effectively protect themselves from acquiring HIV infection. As their friends were hospitalized with life-threatening conditions over the years, deaf men received little—or no— information and support. Subsequently, their grief went unaddressed. Most likely, HIV nurses confronted with barriers in communicating with deaf persons erroneously believed that they could obtain crucial information from reading. Without a clear understanding of the signs, symptoms, and course of HIV disease, it is not surprising that they felt their community was not receiving quality health care. As a consequence, deaf gay men developed a strong distrust of clinicians. In a study of prejudicial attitudes, Kiger (1997) found that the most common descriptors that hearing people (i.e., non-deaf persons) used to describe the deaf included “alone,” “friendly,” and “angry.” Indeed, deaf persons engaging in health care have, in my experience, been isolated and left to fend for themselves. Providers often mistakenly believe that deaf clients can understand complex clinical information through lip reading or written notes. However, when a person’s primary language is American Sign Language (ASL), lip reading English is notoriously inaccurate and written materials are often incomprehensible. ASL has no written form. When deaf clients receive their diagnosis, prognosis, or health instructions via English, they may end up being extraordinarily frustrated. Sadly, many deaf clients may have become resigned to unsatisfactory encounters with health care providers who do not understand either their language or their culture (Witte & Kuzel, 2000). The deaf may be perceived as a silent minority. Rather, I offer, it is that we (i.e., health care providers) are not listening. Whenever I address the unique needs of the deaf community, there is a temptation to teach (e.g., that ASL is not manual English). Rather, I note that Gaskins (1999) has provided an excellent state-of-thescience overview of HIV/AIDS in the deaf community; the author acknowledged the lack of research data on HIV prevalence and highlighted the factors that put the community at risk. Furthermore, her article outlined practical nursing interventions to address the unique needs of deaf persons. So why do the cries of nearly 2 million Americans go unheeded? Admittedly, popular slogans about appreciating cultural differences are appealing in their simplicity. And nurses, I believe, have developed a sincere desire to learn how to provide culturally