CLINICAL SCHOLARSHIP

Multi-Ethnic Minority Nurses’ Knowledge and Practice of Genetics and Genomics Bernice Coleman, PhD, ACNP-BC, FAHA, FAAN1, Kathleen A. Calzone, PhD, RN, APNG, FAAN2, Jean Jenkins, PhD, RN, FAAN3, Carmen Paniagua, EdD, MSN, CPC, ANP, ACNP-BC, AGACNP-BC, APNG-BC, FAANP4, Reynaldo Rivera, DNP, RN, NEA-BC5, Oi Saeng Hong, RN, PhD, FAAN6, Ida Spruill, PhD, RN, LISW, FAAN7, & Vence Bonham, JD8

1 Research Scientist II, Nursing Research and Development, Nurse Practitioner, Heart Transplant and Mechanical Assist Device Programs, Heart Institute, Cedars Sinai Medical Center, Los Angeles, CA, USA 2 Senior Nurse Specialist, Research, National Institutes of Health, National Cancer Institute, Center for Cancer Research, Genetics Branch, Bethesda, MD, USA 3 Clinical Advisor, National Institutes of Health, National Human Genome Research Institute, Bethesda, MD, USA 4 Adult Acute Care Nurse Practitioner & Adult Gerontology Acute Care Nurse Practitioner, Advanced Practice Nurse Geneticist, Department of Emergency Medicine, University of Arkansas for Medical Sciences, College of Medicine, Little Rock, AR, USA 5 Director of Nursing Innovation, New York-Presbyterian Hospital, New York, NY, USA 6 Professor, University of California at San Francisco, School of Nursing, Community Health Systems, San Francisco, CA, USA 7 Assistant Professor, Medical University of South Carolina, College of Nursing, Carleston, SC, USA 8 Associate Investigator, Social and Behavioral Research Branch, National Institutes of Health, National Human Genome Research Institute, Bethesda, MD, USA

Key words Minority nurses, nursing, genetics, survey,

nursing practice

Correspondence Dr. Bernice Coleman, Nursing Research and

Development, Cedars Sinai Medical Center,

8700 Beverly Blvd., Los Angeles, CA 90048.

E-mail: bernice.coleman@cshs.org

Accepted: February 20, 2014

doi: 10.1111/jnu.12083

Abstract

Purpose: Exploratory studies establishing how well nurses have integrated genomics into practice have demonstrated there remains opportunity for ed- ucation. However, little is known about educational gaps in multi-ethnic mi- nority nurse populations. The purpose of this study was to determine minority nurses’ beliefs, practices, and competency in integrating genetics-genomics in- formation into practice using an online survey tool. Design: A cross-sectional survey with registered nurses (RNs) from the partic- ipating National Coalition of Ethnic Minority Organizations (NCEMNA). Two phases were used: Phase one had a sample of 27 nurses who determined the feasibility of an online approach to survey completion and need for tool revi- sion. Phase two was a main survey with 389 participants who completed the revised survey. The survey ascertained the genomic knowledge, beliefs, and practice of a sample of multi-ethnic minority nurses who were members of associations comprising the NCEMNA. Methods: The survey was administered online. Descriptive survey responses were analyzed using frequencies and percentages. Categorical responses in which comparisons were analyzed used chi square tests. Findings: About 40% of the respondents held a master’s degree (39%) and 42% worked in direct patient care. The majority of respondents (79%) re- ported that education in genomics was important. Ninety-five percent agreed or strongly agreed that family health history could identify at-risk families, 85% reported knowing how to complete a second- and third-generation fam- ily history, and 63% felt family history was important to nursing. Conversely, 50% of the respondents felt that their understanding of the genetics of com- mon disease was fair or poor, supported by 54% incorrectly reporting they thought heart disease and diabetes are caused by a single gene variant. Only 30% reported taking a genetics course since licensure, and 94% reported in- terest in learning more about genomics. Eighty-four percent believed that their

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ethnic minority nurses’ organizations should have a visible role in genetics and genomics in their communities. Conclusions: Most respondents felt genomics is important to integrate into practice but demonstrated knowledge deficits. There was strong interest in the need for continuing education and the role of the ethnic minority organiza- tions in facilitating the continuing education efforts. This study provides evi- dence of the need for targeted genomic education to prepare ethnic minority nurses to better translate genetics and genomics into practice. Clinical Relevance: Genomics is critical to the practice of all nurses, most especially family health history assessment and the genomics of common com- plex diseases. There is a great opportunity and interest to address the genetic- genomic knowledge deficits in the nursing workforce as a strategy to impact patient outcomes.

As the proliferation of knowledge and understanding of genomics accelerates, it becomes clearer that understand- ing heritability and its intersection with environment has now become foundational to nursing science, theory, and practice. Genetic and genomic literacy now distinguishes all nursing professionals as state-of-the-art academicians, researchers, and clinicians who will provide the best care possible. We are emerging into an era whereupon nursing assessments, interventions, and the promotion of well- ness will only attain scientific merit with the translation of genomic knowledge to practice. Health care increas- ingly demands that the registered nurse (RN) use ge- nomic information and technology when designing and providing care to those concerned about health or dis- ease. These expectations have direct implications for RN preparatory curricula, as well as for the 2.9 million prac- ticing nurses (U.S. Department of Health and Human Services, Health Resources and Services Administration, 2010).

Complex diseases such as cardiovascular and heart dis- ease, diabetes, and cancer have disproportionally affected racial and ethnic minority populations (National Center for Health Statistics, 2012). While genetics research ex- plores single gene disorders, the scientific discoveries now inclusive of genomics are beginning to illuminate all ge- netic variation in the human genome and the environ- mental influences on health outcomes for persons with complex chronic diseases. A transformative change in the genomic knowledge of disease pathophysiology has pro- duced a knowledge gap for nurses. A previous study as- sessed nurses’ knowledge of genomics integration into practice (Calzone et al., 2012; Calzone, Jenkins, Culp, Bonham, & Badzek, 2013); however, the study was not representative of ethnic minority nurses. In fact, very lit- tle is known about genomic knowledge gaps of minor- ity nurses (Spruill, Coleman, & Collins-McNeil, 2009). These findings support the need for further investigation

of multi-ethnic minority nurses’ knowledge and practice of genetics and genomics.

Background

The National Coalition of Ethnic Minority Nurse Asso- ciations (NCEMNA) was incorporated in 1998 as a uni- fied voice in nursing for the elimination of health dispari- ties for ethnic minority populations. This national nursing collaboration represents 350,000 nurses and is composed of five ethnic minority nursing organizations. Its member organizations are:

� Asian American/Pacific Islander Nurses Association, Inc. (AAPINA)

� National Alaska Native American Indian Nurses As- sociation, Inc. (NANAINA)

� National Association of Hispanic Nurses, Inc. (NAHN)

� National Black Nurses Association, Inc. (NBNA) � Philippine Nurses Association of America, Inc.

(PNAA)

The goals of the NCEMNA focus on development of a cadre of ethnic nurses reflecting the nation’s diver- sity, advocating for cultural competence, and accessible and affordable health care. This coalition of ethnic mi- nority nurse organizations collectively supports the de- velopment of professional and educational advancement of ethnic nurses, and the education of consumers, health- care professionals, and policy makers on health issues of ethnic minority populations. The NCEMNA’s primary ob- jective is to develop ethnic minority nurse leaders in ar- eas of health policy, practice, education, and research. Through this approach, the endorsement of best nursing practice models inclusive of genetics-genomics, educa- tion, and research to improve the health of minority pop- ulations is paramount (NCEMNA, 2013). One of the first

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initiatives that the NCEMNA undertook was implement- ing strategies to increase minority nurse participation and success in research careers at the doctoral level. An area determined as a collective interest to the NCEMNA mem- ber organizations was the need to improve the health of the representative ethnic minority patient populations through research. Given the anticipated emerging major- ity of these minority populations, the NCEMNA member organizations identified the need to increase minority fac- ulty and doctorally prepared nurses conducting research through mentorship. Nurses from the NCEMNA member organizations received competitive grants to participate in the mentorship program that culminated in a yearly conference where genetic-genomic information was pre- sented as a foundational contributor to common diseases found in ethnic patient populations represented by the NCEMNA member organizations.

Representatives from the National Human Genome Research Institute (NHGRI) and the National Cancer Institute (NCI) along with the primary investigator of this current work have presented on genetics and ge- nomics at the National NCEMNA conferences. The re- sponse and interest in genomic topics led to the interest in gathering baseline information from these representa- tive nursing groups regarding how ethnic minority nurses utilized genetic-genomic core competencies and informa- tion in their practice. Fundamental to this undertaking was the establishment and endorsement of the Essential Nursing Competencies and Curricula Guidelines for Ge- netics and Genomics in October 2006 and expanded in 2008, and an established strategic implementation plan that focused on practicing nurses, regulatory oversight of nursing practice, and academic preparation of nurses (Consensus Panel on Genetic/Genomic Nursing Compe- tencies, 2006, 2009).

Theoretical Framework

The theoretical framework guiding this study was Rogers’ Diffusion of Innovations (DOI; Rogers, 2003). This theory consists of four components: (a) the inno- vation, which in this study is genomics; (b) dissemi- nation communication channels; (c) time; and (d) the social system, which in this study is the minority nurs- ing community. Factors that influence diffusion of the innovation are antecedents and consist of adopter char- acteristics as well as their attitudes. Adopters in this study are the minority nurses, and their characteristics include their genomic competency. Attitudes are the un- derlying beliefs the adopters hold about the innovation (i.e., genomics).

Study Aims

The ultimate goal of this collaborative project was to assure that in this genomic era of health care, ethnic minority nurses are prepared to assure quality care in a diverse population that has concerns/experiences with health disparities. Study aims were approached in two phases to allow for testing of the study instrument fol- lowed by administration of the instrument in the target population.

Phase One Pilot Test Aims

1.1. Establish the feasibility of an online survey method of data collection.

1.2. Evaluate the degree of respondent burden and sur- vey response rates to establish whether this method of data collection would be adequate for future target pop- ulation implementation.

Phase Two Aims

2.1. Determine minority nurses’ beliefs, practices, and competency of integrating into practice genomic informa- tion related to common multifactorial diseases.

2.2. Assess knowledge of human genetic variation and the use of patient characteristics, including ethnicity, gen- der, genes, and race in diagnostics, treatment, and referral decisions.

Analysis of aim 2.2 will be reported in a subsequent article.

The NCEMNA Board approved moving forward with a plan to utilize the diverse expertise of the NCEMNA communities to create a genetics-genomics initiative. The NANAINA chose to abstain from participation in this re- search. Representatives from NCEMNA were identified to organize this initiative with representatives of the NHGRI and NIH. This study was approved by the Cedars Sinai Institutional Review Board as well as the NIH Office of Human Subjects Research.

Materials and Methods

Instrument

The survey instrument used in this study was collab- oratively developed by all investigators. Multiple tele- phone meetings were held to identify the process and re- quired survey content to benchmark the genetic-genomic knowledge of nurses via a membership survey. The fi- nal draft survey is a compilation of the following five instruments, which have been combined, reviewed, and pretested by the research team.

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1. The knowledge, attitude, and interest of African American nurses toward genetics (Spruill et al., 2009).

2. Bonham and Sellers’ Genetic Variation Knowledge Assessment Index (GKAI; Bonham, Sellers, & Wool- ford, submitted for publication).

3. Bonham and Sellers’ Health Professionals Beliefs about Race (HPBR) scale.

4. Bonham and Sellers’ Racial Attributes in Clinical Evaluation (RACE) scale.

5. The Genetics and Genomics in Nursing Practice (GGNPS; Calzone et al., 2012).

The first survey instrument, the knowledge, beliefs, and practices of African American nurses of genetics, was designed to assess the interest, knowledge, and practice of genetics and genomics among African American Nurses. At tool construction, both face validity and construct va- lidity were obtained using a panel of experts to evaluate the items of the tool to ensure the construct was cap- tured (Spruill et al., 2009). The Cronbach α standardized is 0.652 for this 21-item survey instrument.

The survey instrument used in this study also included questions modified from a study with physicians to eval- uate nurses’ knowledge of genetic variation using the Genetic Variation Knowledge Assessment Index (GKAI). The GKAI scores range from 0 to 6, mean 3.28 (SD = 1.17) and was found to be symmetric and unimodal. To evaluate nurses’ utilization of race in clinical prac- tice, questions from the exploratory Health Profession- als Beliefs about Race (HPBR; HPBR-BD, α = 0.69, four items, and HPBR-CD α = 0.61, three items) and Racial Attributes in Clinical Evaluation (RACE) scales (α = 0.86, seven items; Bonham et al., submitted for publication).

In addition to the instruments described in the preced- ing paragraph, the survey utilized for this study included questions from the GGNPS instrument (Calzone et al., 2012; Jenkins, Woolford, Stevens, Kahn, & McBride, 2010). This survey tool is constructed to evaluate Rogers DOI theoretical domains, including attitudes, receptivity, confidence, competency, knowledge, decision, and adop- tion. Instrument validation was performed using struc- tural equation modeling, which confirmed that the in- strument items aligned with the domains of the DOI (Jenkins et al., 2010).

The final compiled study instrument included seven sections assessing beliefs, knowledge, practice, use of race or ethnicity, education, and demographics. There were a total of 61 questions, including multiple choice, di- chotomous (yes or no), and Likert scale questions. The questions were consistent with the Essentials of Genetic and Genomic Nursing Competencies and assessed fam- ily history utilization as well as the genomics of com-

mon disease, which represent knowledge and practice expected of all RNs irrespective of their role, level of aca- demic training, or specialty in which they practice (Con- sensus Panel on Genetic/Genomic Nursing Competen- cies, 2009). The selection of family history as evidence of practice integration was intentional because family his- tory collection falls within the scope of practice of all RNs and is not cost or technology dependent.

Data Collection

Phase One. The target population consisted of nurses attending the March 2009 NCEMNA conference. Nurses of all levels of academic preparation, role, and clinical specialty were invited to participate in the online survey methodology assessing genetic and genomic knowledge, belief, and skills. The only member organization exclu- sion was NANAINA per their request. Conference leaders provided notice to the 125 participants about the pilot testing study, inviting them to test the instrument online. No individual nurses were approached. Rather, interested conference attendees self-selected to participate.

During Phase One pilot testing, computers were made available at the NCEMNA annual meeting. A researcher was stationed by the computer with an access code to as- sist with survey access. A target of 30 participants was desired for the study pilot phase. Prior to participation, each participant was informed of the study aims and pro- vided his/her verbal consent. In addition, upon launching the survey online, the participant also had a written con- sent as part of the instructions prior to encountering any survey questions.

Phase Two. The following NCEMNA Associations chose to participate: AAPINA, NAHN, NBNA, and PNAA. Recruitment of study participants was done through each participating NCEMNA member association. A link to the survey was posted on the NCEMNA website as well as each participating NCEMNA member association website. Recruitment consisted of email announcements to associ- ation constituencies as well as notifications through asso- ciation newsletters. The survey offered no incentives. The survey was open for a total of 10 months, with slightly varying start dates for each association.

Instructions for the survey included the phone num- bers and email addresses of study investigators to contact with any questions. Participants also received instructions that the survey was voluntary, no identifying informa- tion would be collected or stored, and they could skip any question.

Eligibility was limited only to licensed RNs who ac- cessed the online survey. Membership in an NCEMNA participating association was not required. Inclusion and

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exclusion criteria were the same for both Phase One and Phase Two studies.

Survey data were collected using the online survey tool SurveyMonkey (SurveyMonkey, Inc., Palo Alto, CA, USA). The survey took approximately 20 min for com- pletion and collected no personal identifying information. All data were stored in a password-protected file that was available only to study investigators.

Statistical Analysis

Data were analyzed using SAS 9.3 (SAS Institute Inc., Cary, NC, USA). The answers to all survey questions were summarized using descriptive statistical techniques. Chi- squared tests were used to assess the relationships be- tween survey items with categorical responses. The level of significance was α = 0.05, and all tests of statistical sig- nificance were two tailed.

Results

Phase One

A total of 27 participants completed the online sur- vey. Participants found the length of the survey to be just right. On average, participants spent 23 min com- pleting the survey. There were some technical problems with obtaining online access that were remedied during Phase One of the study. The majority agreed or strongly agreed that the directions for survey completion were adequate 70% (n = 16/23), the survey was organized 86% (n = 20/23), the survey was easy to navigate 69% (n = 16/23), question sequence was clear and predictable 70% (n = 16/23), terminology was consistent and ap- propriate 82% (n = 19/23), and the survey was tech- nically easy to complete 78% (n = 18/23). Most (82%, n = 18/22) indicated that there were no questions worded in a way that were not sensitive to their ethnic group. Survey tool modifications were made based on recommendations from the participants to enhance re- spondent response by decreasing the number of survey items. The final instrument for use in Phase Two con- sisted of seven sections and a total of 61 questions.

Phase Two

Demographic and work characteristics of par- ticipants. A total of 392 respondents completed an online survey located on their nursing organization’s website in Phase Two of the study. Excluding three in- eligible participants reporting a highest nursing degree of a licensed practical nurse, a total of 389 were included in the data analysis. Table 1 summarizes the characteris- tics of the eligible nurses. Participants’ ages ranged from

Table 1. Demographic Characteristics of Study Participants

Demographics (N = 389) n (%)

Sex (n = 326) Male 22 (7%)

Female 304 (93%)

Age (n = 261) Mean (range) 52 (23–82)

Race (n = 322) White 27 (8%)

Asian 138 (43%)

Black/African American 107 (33%)

American Indian/Alaska Native 2 (1%)

Native Hawaiian/Pacific Islander 9 (3%)

Other 39 (12%)

Hispanic/Latino (n = 329) 60 (18%) Highest level of nursing education (n = 331)

Diploma 5 (2%)

Associate degree 28 (8%)

Baccalaureate degree 115 (35%)

Master’s degree 130 (39%)

Doctoral degree 53 (16%)

Primary role (n = 330) Administration 63 (19%)

Education 71 (22%)

Research 20 (6%)

Patient care 139 (42%)

Other 37 (11%)

Percent of time spent seeing patients (n = 311) Mean 51%

Range 0–100%

NCEMNA organization affiliation (n = 305) Asian American/Pacific Islander Nurses Association 37 (12%)

National Association of Hispanic Nurses 53 (17%)

National Black Nurses Association 109 (36%)

Philippine Nurses Association of America 112 (37%)

23 to 82 years, with a mean of 52 years, the majority were female (93%, n = 304/326). The majority of par- ticipants were Asian (43%, n = 138/322) and African American (33%, n = 107/322). Eighteen percent (n = 60/329) stated that they considered themselves to be His- panic/Latino, and 8% (n = 27/322) reported that they were White. The majority (39%, n = 130/331) reported their highest level of education was a master’s degree, 35% (n = 115/331) had a baccalaureate degree, 16% (n = 53/331) held a doctoral degree, 8% (n = 28/331) had an associate degree, and 2% (n = 5/331) were diploma prepared. The primary work setting reported was a hospital (68%, n = 163/241). The average number of years they had worked in nursing was 20 years, and more than half (51%, n = 166/326) had worked at their cur- rent work setting for over 10 years. Forty-two percent (n = 139/330) indicated their primary role was patient care, 22% (n = 71/330) were in education, and 19% (n = 63/330) were in administration.

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Beliefs. The majority of respondents felt it was very important (79%, n = 301/383) or somewhat important (19%, n = 71/383) for nurses to become more educated about the genomics of common disease. The most fre- quent advantages of integrating genomics into practice identified included better decisions about recommenda- tions for preventive services (87%, n = 332/383), bet- ter treatment decisions (73%, n = 280/383), improved services to patients (68%, n = 259/383), better ad- herence to clinical recommendations by patients (56%, n = 216/383), and genetic risk triaging (46%, n = 177/383). The highest reported potential disadvantages to integrating genomics into practice included that it would increase insurance discrimination (61%, n = 224/366), genetics could increase patient anxiety about risk (52%, n = 191/366), and it would be not reimbursable or too costly (49%, n = 181/366).

Knowledge. Self-reported genetic knowledge as- sessments are provided in Table 2. Half of the partici- pants (50%, n = 182/364) felt their understanding of the genetics of common diseases was poor or fair. The ma- jority (95%, n = 371/389) agreed or strongly agreed that family history could help to identify at-risk families and 85% (n = 323/381) knew how to complete it. The major- ity had completed a family history for themselves (74%, n = 279/378) and 51% (n = 195/381) had collected one for a family member.

Responses varied by disease as to the degree to which nurses felt genetics had clinical relevance to a wide range of common health conditions. For example, only 54% (n = 191/353) reported that hemochromatosis, an inher- ited condition, had a great deal to do with genetics. The majority correctly identified that genetic risk (e.g., as indi- cated by family history) has clinical relevance for breast, colon, and ovarian cancers; coronary heart disease; and diabetes. However, 54% of respondents (n = 105/193) thought diabetes and heart disease are caused by a single gene variant, which is incorrect.

Practice. When presented with the option to identify what was important to consider when delivering nursing care, genes (29%, n = 53/185) and insurance (10%, n = 37/362) were the two lowest items identified as essential. Other items scored as more essential to consider included race (52%, n = 196/376), gender (53%, n = 196/371), age (63%, n = 231/369), and family history (63%, n = 238/375).

Seventy-two percent (n = 274/380) also reported collecting family histories for patients in their prac- tice setting. When a patient indicated a disorder in the family, nurses always collected the age of diagno- sis (64%, n = 231/361), the relationship to the patient

Table 2. Knowledge Measures

Measure n (%)

Understanding of genetics of common diseases (n = 364) Excellent 6 (2%)

Very good 47 (13%)

Good 129 (35%)

Fair 149 (41%)

Poor 33 (9%)

Do you think that genetic risk (e.g., as indicated by family

health history) has clinical relevance for breast cancer?

(n = 378) Correct 378 (100%)

Incorrect 0 (0%)

Do you think that genetic risk (e.g., as indicated by family

health history) has clinical relevance for colon cancer?

(n = 375) Correct 366 (98%)

Incorrect 9 (2%)

Do you think that genetic risk (e.g., as indicated by family

health history) has clinical relevance for coronary heart

disease? (n = 372) Correct 333 (98%)

Incorrect 9 (2%)

Do you think that genetic risk (e.g., as indicated by family

health history) has clinical relevance for diabetes? (n = 376)

Correct 372 (99%)

Incorrect 4 (1%)

Do you think that genetic risk (e.g., as indicated by family

health history) has clinical relevance for ovarian

cancer? (n = 369) Correct 354 (96%)

Incorrect 15 (4%)

The DNA sequences of two randomly selected healthy

individuals of the same sex are 90%–95% identical. (n = 208)

Correct 82 (39%)

Incorrect 126 (61%)

Most common diseases such as diabetes and heart

disease are caused by a single gene variant. (n = 193) Correct 88 (46%)

Incorrect 105 (54%)

Genetics course since licensure (n = 356) Yes 123 (35%)

No 233 (65%)

(91%, n = 330/363), race or ethnic background (77%, n = 242/315), age at death from the condition (65%, n = 237/362), as well as maternal and paternal lineages (77%, n = 278/359).

With regard to family history specific knowledge el- ements, nurses with higher levels of education tended to accurately report that a family history should include age at diagnosis of condition (p = .0146). More years of practice influenced the collection by nurses of stan- dard family history information that also included race or

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ethnic backgrounds (p = .0197), age at death from con- ditions (p = .0268), and age at diagnosis of condition (p = .0009). Most nurses (98%, n = 380/386) agreed or strongly agreed that family health histories could be used to teach patients and family members about the importance of genetics-genomics and disease pre- vention. However, there was no relationship between the proportion of work time spent seeing patients and the perceived value of family history, use of family his- tory, or variable collected (i.e., age, relationship, race, or lineages).

Genetics and genomics education. Only 35% (n = 123/356) indicated that they had taken a course that included genetics as a major component since they ob- tained their nursing license. While the majority of nurses (94%, n = 335/357) indicated that they intended to learn more about genetics, only 30% (n = 107/352) knew whether there were any courses on genetics available to them. More than half (55%, n = 196/358) identi- fied workshops that included a mixture of presentations and group activities as the preferred format for learning about genetics. Overall, most (90%, n = 318/354) would encourage NCEMNA or their organization to support a genetics and genomics awareness initiative and 81% (n = 289/357) responded that they would attend train- ing if offered at their annual conference. Similarly, 84% (n = 297/354) believed that their national organization should have a visible role in genetics-genomics in their community.

Discussion

This study assessed the knowledge, beliefs, and prac- tice of a sample of multi-ethnic minority nurses re- cruited through NCEMNA for Phase One and through the NCEMNA Member associations for Phase Two. Phase One of the study showed the feasibility of an online sur- vey method of data collection, indicating minimal diffi- culty and taking an average of 23 min to complete. In- strument modifications were made based on respondent recommendations to assure accurate and complete re- sponses from the broader membership, and the investiga- tors chose to enhance response by decreasing the number of survey items.

In Phase Two, it was determined that most respondents in this study felt genetics-genomics are important to in- tegrate into practice, but they demonstrated knowledge deficits. The majority of respondents felt it was very im- portant (79%) for nurses to become more educated about the genomics of common disease. Half of the participants felt their understanding of the genetics of common dis- eases was poor or fair. They indicated a strong interest in

learning more, with 94% reporting that they intended to learn more about genetics. Study participants were also supportive (90%) of encouraging a genetics and ge- nomics awareness initiative.

These results were very similar to those reported re- cently from a study of nurses responding to an American Nurses Association (ANA) study (Calzone et al., 2013). Both studies included similar populations (NCEMNA, 93% female, n = 304/326; ANA, 96% female, n = 461/481; NCEMNA, average age 52 years; ANA, average age 51 years). However, this study population had differ- ent ethnicity/race characteristics, enhancing the under- standing of differences in knowledge, beliefs, and prac- tices of genetics and genomics for all nurses. This study included more nurses who were Asian (NCEMNA, 43%, n = 138/322; ANA, 2%, n = 8/476); Black/African Amer- ican (NCEMNA, 33%, n = 107/322; ANA, 3%, n = 14/476); Hispanic (NCEMNA, 18%, n = 60/329; ANA, 2%, n = 8/478); and fewer who were White (NCEMNA, 8%, n = 27/322; ANA, 89%, n = 424/476). There were also more nurses with advanced degrees in nursing who participated in this study (NCEMNA: master’s degrees 39%, n = 130/331, doctoral degrees 16%, n = 53/331; ANA: master’s degrees 31%, n = 148/483, doctoral de- grees 2%, n = 39/483). The two populations also dif- fered in their primary role, indicating variation in the number of nurses involved in research (NCEMNA, 6%, n = 20/330; ANA, 4%, n = 16/427) and administration (NCEMNA, 19%, n = 63/330; ANA, 9%, n = 38/427). Most nurses indicated that their primary role was pa- tient care (NCEMNA, 42%, n = 139/330; ANA, 54%, n = 231/427).

A correlation was found between higher academic ed- ucation and years in nursing, which increased family history collection in practice. Seventy-two percent (n = 274/380) reported collecting family histories for patients in their practice setting. This result is higher than that re- ported in other nursing populations. The National Nurs- ing Workforce Study conducted through the ANA found that nurses who indicated they actively saw patients (60%, n = 216/359) had rarely or never assessed a fam- ily history in the preceding 3 months (Calzone et al., 2013). Additional study is needed to ascertain the basis for these differences, which could be associated differ- ences in the question asked between these two surveys, with the ANA asking about family history utilization in the past 3 months, whereas the NCEMNA survey asked about use of family history at any time in practice. The perceived value of family history may also contribute to this difference, or the difference may be the direct re- sult of family history education initiatives undertaken by some NCEMNA member associations, but data on these specific details were not assessed in this study.

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Three hundred and five study participants stated that they belonged to one (299/305) or more than one (6/305) NCEMNA member organization. Two identi- fied themselves as American Indian/Alaska Native, even though NANAINA members did not participate in this study. So either those participants were a member of another organization or answered independently. There were also 39 who reported their race or ethnicity as other and their write-in answers indicated mixed race re- sponses. Those who specified their race or ethnicity as White may have been of mixed race or felt this choice best reflected their race or ethnicity.

Health disparities in chronic diseases such as can- cer (Wallace, Martin, & Ambs, 2011), cardiovascular disease (Cambien & Tiret, 2007; Kathiresan & Srivas- tava, 2012), and diabetes are mediated by complex gene interactions (Tekola-Ayele, Adeyemo, & Rotimi, 2013; Zorka et al., 2013), which are changing the manage- ment of chronic disease in vulnerable populations. In the 10 years since the Human Genome Project was com- pleted, rapid changes in genetic technology have resulted in substantial changes in the care of patients with these and other chronic diseases, which disproportionally af- fected racial and ethnic minority groups (Goldenberg et al., 2013; Wallace et al., 2011). This rapid infusion of genetic-genomic knowledge and changes in clinical prac- tice present both a burden and opportunity for multi- ethnic minority nurses.

Nurses remain trusted healthcare providers (Gallop Poll, 2012). The nurse–patient professional relationship is foundationally supported by perceived professional com- petencies and caring attributes that underpin this trust (Dinc & Gastmans, 2012). Health disparities have pre- vailed in minority populations despite policy initiatives and new knowledge in genetics and genomics (Agency for Healthcare Research and Quality, 2012). Establishing a culturally competent nursing workforce is suggested as a key component to improving communication and the patient-centered trust relationship with minority popula- tions (Viseanath & Ackerson, 2011). Within these pop- ulations, culture, race, and perceived discrimination can negatively affect the interpretation of communication de- livered by healthcare providers (Subban, Terwoord, & Schuster, 2008). An important component to establish- ing a trust relationship is the healthcare provider us- ing culturally competent communications with minor- ity populations that support patient engagement of the value of genetic and genomic information in their health care. Radwin, Cabral, and Woodworth (2013) conducted a study using path analysis in a multi-ethnic sample of in-patient cancer patients. The investigators sought to de- termine what contributed to the development of trust in the population of African Americans, Caucasian Ameri-

cans, Hispanics, Native Hawaiians or Pacific Islanders, and American Indians or Alaska Natives. Data were collapsed into two ethnic groups—Caucasians and all other ethnic groups combined. For the multiminority groups only, re- sponsiveness and proficiency were positively related to greater trust in nurses.

The multi-ethnic minority nurse sample in this study reported gaps in genetic and genomic knowledge. These gaps are similar to findings from a study conducted using a sample collected through the ANA, and both studies demonstrate that education is required in basic genetic and genomic core concepts (Calzone et al., 2013). The majority of the current sample (65%) had not received continuing education with a focus on genetics and ge- nomics. Respondents in this study were interested, open, and motivated to engage in education that would sup- port proficiency in genetics and genomics. These find- ings support the need for further genetics-genomics ed- ucation in this multi-ethnic study population, consistent with similar findings in an African American nurse sam- ple (Powell-Young & Spruill, 2013) that clearly demon- strated the need for a focused education in both the for- mal and continuing education areas. Patients expect that care providers approach them knowledgeable about their conditions, sensitive about their culture, and aware of their sometimes intergenerational experiences of unequal and sometimes discriminatory care that may predicate perceptions of mistrust (Benkert, Peters, Pate, & Dinardo, 2007). This is the first study investigating multi-ethnic minority nurses’ knowledge of genetics and genomics. Designing education for this population of nurses who are requisite in the knowledge and culture of caring for mi- nority populations is a first and crucial step to preparing nurses that may well influence health disparity outcomes.

Limitations

Ascertainment bias is recognized as a limitation of this study. Nurses were recruited through the minority nurs- ing organizations that are members of NCEMNA. There- fore, nurses self-identifying as minority nurses that are members or follow activities of these organizations would have been notified of the study. Furthermore, partici- pants may have had some motivation to complete the survey, which could include concern about genomics or other influencing factors. As such, the findings cannot be generalized to the overall minority nurse community. However, this is the first study of its kind despite this lim- itation, so the insights gleaned from the data can still be useful in planning targeted education for this diverse con- stituency.

Notably, the study population consisted of a highly ed- ucated group of nurses, with 39% holding a master’s

242 Journal of Nursing Scholarship, 2014; 46:4, 235–244. C© 2014 Sigma Theta Tau International

Coleman et al. Genomic Nursing Practice

degree and 16% a doctoral degree. These education lev- els differ drastically from the national nursing work- force. Overall, 13% of nurses of any race hold a mas- ter’s or doctoral degree. By race and ethnic categories, 13% of Caucasian/Non-Hispanics, 15% of Black/African American/Non-Hispanics, 11% of Hispanic/Latino/any race, and 8% of Asian/Non-Hispanics hold a master’s or doctoral degree (U.S. Department of Health and Human Services, Health Resources and Services Administration, 2010). Additional study is clearly needed in a more rep- resentative minority nurse population. Overall, the data indicate that study participants had a strong interest in gaining knowledge and or refining knowledge about ge- netics and genomics. This information more broadly in- forms the NCEMNA Board and member organizations on the need, scope, and optimal design of a collaborative NCEMNA member organizations education initiative in genetics-genomics.

Lastly, participants were informed that they could skip any survey item. As such, the per-question response rate varied. To assess this further, the dataset was queried to ascertain whether there was a pattern to the per-question response rate. Overall, the lowest response rates were as- sociated with Sections 6 and 7 located at the end of the survey. Section 6 correlates with the knowledge, use, and beliefs about race and genetic variation items (Bonham and Sellers’ GKAI, Bonham and Sellers’ HPBR scale, and Bonham and Sellers’ RACE scale). Of these three instru- ments in Section 6, the GKAI had the lowest response rates. Section 7 consisted of the demographic questions. Overall, this analysis revealed that participants seemed to respond less as the survey progressed, with over 13% of responders answering no question, as opposed to earlier sections, where this rate was 6% to 7%. Additional psy- chometrics on the instrument are needed to inform re- finement of the tool, including reduction in the number of items.

Conclusions

This study was designed to determine minority nurses’ beliefs, practices, and competency of integrating into practice genomics information related to common multi- factorial diseases. This goal was supported by the leader- ship of NCEMNA and provided the opportunity to assess minority nurses’ knowledge of human genetic variation and the use of patient characteristics, including ethnic- ity, gender, genes, and race in diagnostics, treatment, and referral. This study population had different ethnicity or race characteristics, more nurses with advanced degrees, and higher proportions reporting primary functional ar- eas such as research or administrative than previous stud- ies. However, genomic knowledge deficits in the nurs-

ing workforce revealed in this study were similar to that found in other nurses previously reported. Therefore, the recommendation is that genomics education is needed by all nurses. Only then can we assure in this genomic era of health care that nurses as integral members of the work- force are prepared to deliver responsible, effective, and accountable care that includes genomics.

Acknowledgements

This research was supported by the Intramural Re- search Programs of the National Institutes of Health, Na- tional Cancer Institute, and National Human Genome Re- search Institute.

Clinical Resources � Essentials of Genetic and Genomic Nursing: Com-

petencies, Curricula Guidelines, and Outcome In- dicators (2nd ed.): http://www.genome.gov/pages/ careers/healthprofessionaleducation/genetics competency.pdf

� Genetics and Genomics Competency Center for Ed- ucation: http://www.g-2-c-2.org/

� Greco, K., Tinley, S., & Seibert, D. (2012). Essen- tial Genetic and Genomic Competencies for Nurses with Graduate Degrees. American Nurses Associa- tion and International Society of Nurses in Genet- ics: http://www.genome.gov/Pages/Health/Health- CareProvidersInfo/Grad Gen Comp.pdf

� U.S. Surgeon General’s My Family Health Por- trait: https://familyhistory.hhs.gov/fhh-web/home. action

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