- Email: [email protected]
Development of an HIV educational needs assessment tool
Development of an HIV Educational Needs Assessment Tool Kathleen M. Nokes, Phi), RN,C, FAAN, Joan Kendrew, MA, RN, CS, NP, Anne Rappaport, MSN, MPH, RN,C, Drexel Jordan, MNSc, RNP, OCN, and Lillian Rivera, RN, MS The learning needs of persons with H1V/AIDS continue to grow more complex as new treatments are developed and HIV disease shifts from being a terminal to a chronic illness. Clinicians could use a simple tool to help them to focus on what clients think is important to know about living with HIV/AIDS. This article describes the development of the HIV Educational Needs Assessment Tool (HENAT). HIV+ persons (N = 363) who were receiving health care in a variety of ambulatory and institutional settings participated in this research during 1990 and 1993-1994. Factor analysis was used to shorten the instrument into a form that could be used in any nurse/client interaction. Principal axis factor extraction and varimax rotation deleted 16 items. The remaining 34 items were grouped into six factors: Treatments, Entitlements, Relationships, Preventing Infections, Social Support, and Working. Cronbach's alphas were computed and results ranged from. 70 to .88. Two month test-retest correlations for a subset of participants (n = 195) ranged from .54 to .67. HENAT can be used (a) to examine differences in perception of learning needs between clients with HIV disease and
Kathleen M. Nokes, PhD, RN, C, FAAN, is a professor and subspecialty coordinator for nursing of persons with HIV/AIDS at CUNY Hunter College; Joan Kendrew, MA, RN, CS, NP, is an HIV clinical nurse specialist at the New York Veterans Administration Medical Center; Anne Rappaport, MSN, MPH, RN, C, is an H1Vprogram nursing care coordinator at Metropolitan Hospital Center, New York City; Drexel Jordan, MNSc, RNP, OCN, is an HIV clinical nurse specialist at UAMS Medical Center, Little Rock, Arkansas; and Lillian Rivera, RN, MS, is an HIV nurse clinician at the Woodhull Medical and Mental Health Center, Brooklyn, New York.
their health care providers, (b) to measure shifts in learning needs over time, (c) to relate HIV-specific learning needs to length o f time living with H I V disease, (d) to give clients an opportunity to assess their learning needs, and (e) as part o f a larger intervention study that evaluates the effectiveness o f patient education.
Key words: Learning needs, persons with HIV/AIDS, nursing research, patient teaching
T e a c h i n g has always been an important component of nursing and today it plays a vital role in the delivery of safe, quality patient care (Rakel, 1992). Nurse Practice Acts, nursing theories since Nightingale, the Nursing Intervention Classification System, and the Joint Commission on the Accreditation of Healthcare Organizations standards all address patient education. When it is incorporated throughout the nursing process, patient education is a tool through which clients empower themselves (Rankin & Stallings, 1996). Persons with HIV disease need to know how to prevent the spread of HIV infection to their sexual and/or drugusing network and how they can maintain optimal levels of wellness.
Review of the Literature An educational needs assessment should address critical areas for learning. Although many patient teaching instruments have been published (Rankin & Stallings, 1996), an extensive search of the literature revealed that no other instrument assessed the learning needs of persons living with HIV/AIDS. Other instruments measured nurses' learning needs relative to caring for patients with AIDS (Jacobs, Grady, Ostchega, Gallaway, & Kish, 1989); knowledge, skills, and ad-
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 8, No. 6, November/December 1997, 46-51 Copyright 9 1997 Association of Nurses in AIDS Care
Nokes et al. / HENAT 47 herence counseling for nurses working in HIV clinical research (Child et al., 1994); and the components of HIV prevention videotapes targeted toward inner-city Hispanic populations (O'Donnell, San Doval, Vomfett, & DeJong, 1994).
Development of the Tool The purpose of the HIV Educational Needs Assessment Tool (HENAT) is to assess the infected person's perception of his or her learning needs. During 1989, a group of HIV/AIDS clinical nurse specialists developed items for this instrument, drawing from an extensive search of the HIV/AIDS professional and consumer literature and their clinical expertise. Face validity was established by having two additional clinical nurse specialists who were experts in the nursing of persons with HIV/AIDS examine each item for content validity. These content experts determined that each of the items was clear and addressed important information for persons living with HIV/AIDS. In 1990, two clients with HIV disease and two clients with AIDS reviewed the tool and advised that all of the items were relevant and that they had no additional items, thus giving additional verification for face and content validity. The items on the HENAT were developed to test general concepts that would be pertinent irrespective of changes in the epidemic. To illustrate, one item asks clients to indicate the importance of knowing the purpose of prescribed medications. This item remains especially relevant because the number of medications available to treat HIV disease continues to grow.
Ethical Considerations This study was approved by the Committees for Experimentation with Human Participants at the City University of New York, Hunter College, the New York Veterans Administration Medical Center, Metropolitan Hospital Center/New York Medical College, Woodhull Medical and Mental Health Center, the New York City Health and Hospitals Corporation, and the Univers~y of Arkansas for Medical Sciences, Little Rock, Arkansas. There were three New York and one Arkansas sites where data were collected. Written informed consent was obtained from each participant. All data was coded and kept in a locked cabinet in a location that was removed from the client care settings.
Procedure Each potential participant was informed about the study and given time to decide whether he or she wanted to participate. After informed consent was obtained, the participants completed the HENAT and a personal information form while the health care provider rated the client's functional status using the Karnofsky scale. Data collection took between 10 and 15 minutes. A member of the study team was available to assist clients who felt too weak to write or who needed help to complete the data.
Scoring Participants rated each of the 50 items on a Likerttype scale that ranged from 1 = not important to 5 = of great importance. To illustrate, one item reads, "To know if I should expect the test/procedure to make me feel sick." Participants indicated how important they believed it was to know HIV-specific information by circling the number that reflected their opinions.
Sample The convenience sample consisted of 363 volunteer participants. Data were collected during 1990 and 1993-1994 from hospitalized or ambulatory HIV+ persons (n = 236) and hospitalized or outpatients with AIDS (n = 127) in three tertiary care facilities in New York City and one tertiary care facility in Little Rock, Arkansas. All HIV+ participants were positive for HIV antibody on the ELISA and Western Blot blood tests, and all participants with AIDS had been diagnosed by a physician when they met the 1987 Centers for Disease Control (CDC) criteria for an AIDS diagnosis. All participants were over 18 years of age and able to read English. The average participant was middle aged, male, a person of color who was not working, and receiving public assistance. The sample was almost evenly divided between persons who reported HIV infection through male/male sex (38%) and through injection drug use (39%). Table 1 presents demographic data. According to self-report, the median number of months participants were diagnosed with HIV disease was 45 (range = 6-296) months and the median number of months diagnosed with CDC-defined AIDS was 24
48 JANAC Vol.8, No. 6, November/December 1997 (range = 1-103) months. Seventy-five (21%) of the persons with AIDS had been diagnosed with pneumocystis carinii pneumonia. The remainder of the persons with AIDS had been diagnosed with a variety of other AIDS-defining conditions as established by the 1987 criteria. The 100 to 0 Kamofsky scale was used by the researchers with a subsample (n = 286) to assess performance status (Karnofsky & Burchenal, 1949). Ninety two percent (n = 262) were scored between 70% (cares for self, unable to carry on normal activity or to do active work; n = 48, 17%) and 100% (normal, no complaints, no evidence of disease; n = 68, 24%). Only 4 clients scored below 60% (range = 20% to 50%).
Results The Statistical Programs for the Social Sciences were used for all data analysis procedures and a minimum significance level of .05 was established. To shorten the HENAT into a form that could be answered more readily in a clinical setting, a number of statistical tests were performed. Items were first evaluated to assure adequate variability (Stewart & Kamberg, 1992). Although the range of responses for each items was between 1 and 5, many clients believed that each item assessed information that was very important, which added to the content validity of the instrument but limited the variability of the responses. Sample size was adequate for a factor analysis of the 50-item instrument (DeVellis, 1991). An exploratory factor analysis was used because there was an open question about the number and kinds of factors that would be derived from the variables (Kim & Mueller, 1978; Nunnally, 1978). Principal axial factor extraction was used because the purpose of the factor analysis was instrument development (Froman, 1994). Each of the factor analyses solutions used a principal axial factor extraction method and varimax rotation. The first solution indicated that six factors had eigenvalues greater than 1 and so the subsequent analyses specified a criteria of six factors. Selection of items to comprise each factor was based on the following criteria: an item-factor loading of at least .40 on the primary factor and a difference of at least .20 between an item's loading on the primary factor and any other
Table 1. Frequenciesof SelectedDemographicVariables(N= 363) Variable
n
Percentage
Age 21-29 32 30-39 135 40-49 147 50-59 28 60 or more 20 Missing 1 Gender Male 319 Female 44 Ethnicity Black/AfricanAmerican 132 White 103 Hispanic/Latino 119 Asian 1 Other 6 Missing 2 Income On public assistance 168 Less than $10,000 88 $10,000-20,000 49 $21,000-30,000 23 $31,000-40,000 9 $41,000-50,000 0 Over $50,000 3 Missing 23 Employmentstatus Not working 273 Work 10-20 hours/week 16 Work 20-30 hours/week 16 Work 40 hours/week 30 Work morethan 40 hours/week 19 Missing 9 Risk behaviors associatedwith HIV infection Male/malesex 139 Injectingdrugs 140 Male/malesex and intravenous drug user 8 Sex partner (intravenousdrug user) 27 Blood product 9 Other or missin[[ 29
(11%) (37%) (40%) (07%) (05%) (00%) (88%) (12%) (36%) (28%) (33%) (00%) (02%) (01%) (46%) (24%) (14%) (06%) (03%) (00%) (01%) (06%) (75%) (04%) (04%) (09%) (05%) (03%) (38%) (39%) (02%) (07%) (03%) (08%)
a. Age range = 21-67 years.
factor (Yarcheski, Mahon, & Yarcheski, 1992). Sixteen items did not meet that criteria and were deleted. Item numbers, items, means, and standard deviations for the remaining 34 items grouped according to the six factors are presented on Table 2. Table 3 presents the items on each factor, eigenvalues, percentage of the explained variance, and Cronbach's alpha reliabilities for
Nokes et al. / HENAT Table 2.
Item #
Item Data and Final Factor Analysis (N = 363)
Item
Mean SD Loading
Factor lmTreatments 9. 5.
3. 11. 4. 10. 8. 1. 15. 17.
To know the purpose of the prescribed medications To know why it is necessary for me to have different tests/ procedures To know what my condition is now To understand the results of my blood and other diagnostic tests To know what to expect during a test procedure To know the side-effects associated with the prescribed medications To know if I should expect the test/ procedure to make me feel sick To know exactly what the diagnosis of AIDS/HIV infection means To know how to get relief of any pain that I might have To know about research treatments open to me
49. 45. 47. 48.
46. 42.
40. 41.
To know what governmental programs can help me To know that I will receive health care even if I run out of money To know what financial help is available To know where I can get help with legal problems To know that transportation to the hospital and clinic is available if I need it To know about housing if I can't stay where I live To know that the staff will do everything they can to make me comfortable To know that the staff feels comfortable taking care of me To know that my questions will be answered honestly and directly
Item # 39.
4.6
.6
.693
Item
To know that the staff is specially educated about the latest in care of persons with HIV/AIDS
Mean SD Loading
4.5
.7
.437
3.0 1.7
.828
3.4 1.7
.616
3.1 1.8
.591
3.5 1.5
.579
4.6
.8
.617
4.3 1.1
.578
4.6
.9
.535
4.6
.8
.501
4.5
.9
.494
4.0 1.0
.626
3.5 1.3
.498
4.0 1.1
.439
3.7 1.3
.689
3.5 1.4
.530
Factor 3---Relationships 29. 4.3 4.6
.9 .7
.654 .648
4.5
.7
.620
44.
30. 4.3
.9
.611
4.6
.7
.609
4.4
.8
.537
27.
To know that someone will help me tell my children that I have AIDS To know that if I am too sick to take care of my children, someone will help me To know why it's important to keep my drug use equipment clean or not to use drugs To know that someone will help me answer questions about the best way to tell my family that I have AIDS
Factor 4---Preventing Infections 4.5
.9
.507
4.4
.7
.439
4.6
.7
.400
4.6
.9
.765
4.5
.8
.747
4.4
.9
.639
4.2 1.0
.641
4.3
.9
.612
4.4 1.0
.610
Factor 2---Entitlements 50.
49
4.6
.7
.504
21.
To know if there is anything I can do to keep from getting new infections 25. To know how to protect my sexual partner from becoming infected 28. To know how I can protect my family and friends from getting infected with HIV 34. To know about the possibility of a cure or vaccine 32. To know that information about my diagnosis is confidential and will not be shared with anyone without my permission Factor 5---Social Support 36. To know that there is a health care provider to talk with when I feel down 35. To know any groups of other people with HIV/AIDS that I can meet with 33. To know how other persons with HIV/AIDS deal with their disease
Factor 6---Worldng 4.5
.7
.477
7.
4.7
.5
.454
22.
each of the subscales. All of the reliabilities were within an acceptable range (.70) or greater (Nachmias & Nachmias, 1992). The six factors that emerged were Treatments (10 items), Entitlements (10 items), Relationships (4 items), Preventing Infections (5 items), Social Support (3 items), and Working (2 items). Six subscores that reflect the six factors and a total score can be derived.
To know if I can return to work or other activities right after a procedure To know if I can go back to work full-time or part-time
In addition to preliminary procedures to establish face validity of the instrument, additional support for face validity is whether clients add other items to those already identified (Gill & Feinstein, 1994). Face validity of the HENAT was enhanced in that most clients did not respond to the request to "Tell us what other information you think is important to know about," and in those cases where clients did write in additional
50 JANAC Vol.8, No. 6, November/December1997 Table 3. FactorAnalysisResults and Cronbach's Alphafor Each of the Subscales Factor
Number of Items Eigenvalue Variance Reliability
Treatments Entitlements Relationships Preventinginfections Social support Working
10 10 4 5 3 2
11.4 6.1 2.65 1.52 1.25 1.0
22.9% 6.1% 5.3% 3.0% 2.5% 2.0%
.87 .88 .76 .75 .75 .70
Note: Totalvarianceexplained= 42%. items, the content had been covered by a specific item on the instrument. To illustrate, one client wrote in that it was important to know about privacy rights, and the authors believe that this concept was addressed in Item 32, "To know that information about my diagnosis is confidential and will not be shared with anyone without my permission." To determine concurrent validity, it was expected that responses on subscales of HENAT would be consistent with the client's self-report on the personal data sheet. An ANOVA was computed between the Working subscale and clients' self-report about whether they were working (n = 81) or not working (n = 273). The Ftest was highly significant (F= 42.7, df= 1,p = .000), which supports the claim that the Working subscale on HENAT is consistent with self-report data. To demonstrate reliability for the HENAT, several reliability procedures were conducted. Internal consistency reliability for each of the six factors has been noted earlier (see Table 3). Test-retest reliability was achieved by giving participants who returned for a follow-up visit the same form of the HENAT two separate times that were separated by at least 2 months. Pearson correlations for the subset of participants (n = 195) who completed HENAT a second time were .56, .67, .63, .57, .60, and .54 for the Treatments, Entitlements, Relationships, Preventing Infections, Social Support, and Working subscales, respectively. Discussion and Conclusions
This study was a preliminary effort to establish the reliability and validity data for the HENAT. Although there was an adequate range of responses, a large number of the respondents rated the items as either very important (4) or of great importance (5), as can
be seen by an examination of the means on each of the items provided in Table 2. Internal consistency reliabilities for each of the six subscales were in the acceptable to high range (.70 to .88). The lower (although statistically significant) testretest reliabilities were probably due to the effect that time has on the changing knowledge needs of persons who are living with HIV/AIDS. Participants completed the second HENAT after at least 2 months had elapsed, and because the course of HIV disease is highly variable, this can affect the client's learning needs. Although the Working subscale only has two items that met the factor analysis criteria, 75% of the sample reported that they were not working. The authors decided to retain this subscale because advances in treatment for HIV disease have resulted in longer periods of health and it is hoped that more persons with HIV/AIDS will be able to continue to work. Two of the items on the Relationship subscale address issues related to children. In future work, participants should be asked if they have children because this may not be an issue for all clients with HIV/AIDS. Future studies will continue to validate the HENAT. The items on HENAT ask clients to respond to their perception of whether an item is important to know. They do not assess whether clients know the information or are satisfied with their knowledge level. Research has demonstrated that the information needs of nursing staff and patients are not always congruent (Dodge, 1972; Gerard & Patterson, 1984; Karlik, 1987; Lauer, Murphy, & Powers, 1982; Thompson & Richmond, 1990; Tilley, Gregor, & Thiessen, 1987). The HENAT can be used to measure shifts in learning needs over time and can examine differences in perception of learning needs between clients with HIV disease and their health care providers. Perhaps if nurses are clearer about what the client wants to know, the client will be more empowered about how to live with HIV/AIDS and optimize wellness. Case managers of persons with HIV/AIDS can use the HENAT to assess learning needs and the six subscale scores can be used to determine appropriate referrals. To illustrate, clients with a learning gap in the entitlements category could be referred to an entitlements expert; clients with a gap in social support could be referred to a provider who could assist the
Nokes et al. / HENAT 51
client with mental health needs. With continued refinement, the HENAT can be used to relate H1V-specific learning needs to length of time living with HIV disease, as a self-care learning assessment measure, and as part of an intervention study that evaluates the effectiveness of teaching. The HENAT's use in home care settings and the community can help the provider target the teaching content to what the client believes is important to know about living with HIV/AIDS.
Acknowledgments: The authors want to acknowledge the important contributions of Ronald Goralewicz, Donald Smith, Josephina Lardizabal, Laura Taylor, Tanya Chervoni, Terra Vinson, Mark Bibbins, Helen Martinez, Vasiliki Papadopoulos, and Brenda Rosario. The first author was partially supported during the preparation of this article as a postdoctoral fellow at the University of California, San Francisco, HIV/AIDS Nursing Care and Prevention (grant #T32NR07081 to W. Holzemer, PhD, RN, FAAN). References Child, C., Charlesbois, E., Cheeney, M., Camp, B., Mitchell, T., & Abrams, D. (1994). Patient adherence issues: An educational and support program for research nurses. Proceedings of the Tenth International Conference on AIDS (Vol. 1, p. 365, abstract no. PD0066). DeVellis, R. (1991). Scale development: Theory and applications. Newbury Park, CA: Sage. Dodge, J. S. (1972). What patients should be told. American Journal of Nursing, 72(10), 1852-1854. Froman, R. (1994, April). Factor analysis: Avoiding the piOralls. Workshop at the Eastern Nursing Research Society annual conference, Portland, Maine. Gerard, P. S., & Peterson, L. M. (1984). Learning needs of cardiac patients. Cardio-vascular Nursing, 20(2), 7-10. Gill, T., & Feinstein, A. (1994). A critical appraisal of the quality of quality-of-life measurements. Journal of the American Medical Association, 272(8), 619-626.
Jacobs, J. L., Grady, C., Ostchega, Y. Gallaway, L. J., & Kish, J. P. (1989). Assessment tool for nurses' learning needs and priorities relative to caring for patients with AIDS and Kaposi's sarcoma. Seminars in Oncology Nursing, 5(4), 308-312. Karlik, B. A. (1987). Learning needs of cardiac patients: A partial replication study. Heart and Lung, 16(5), 544-551. Karnofsky, D., & Burchenal, J. (1949). The clinical evaluation of chemotherapeutic agents in cancer. In C. MacLeod (Ed), Evaluation of chemotherapeutic agents (pp. 191-205). New York: Columbia University Press. Kim, J., & Mueller, C. (1978). Introduction to factor analysis: What it is and how to do it. Beverly Hills, CA: Sage. Lauer, E, Murphy, S. E, & Powers, M. (1982). Learning needs of cancer patients: A comparison of nurse and patient perceptions. Nursing Research, 31(1), I 1-16. Nachmias, C., & Nachmias, D. (1992). Research methods in the social sciences. New York: St. Martin's. Nunnally, J. (1978). Psychometric theory. New York: McGrawHill. O'Donnell, L., San Doval, A., Vornfett, R., DeJong, W. (1994). Reducing AIDS and other STDs among inner city Hispanics: The use of qualitative research in the development of videobased patient education. AIDS Education and Prevention, 6(2), 140-153. Rakel, B. (1992). Interventions related to patient teaching. Nursing Clinics of North America, 27(2), 397-423. Rankin, S., & Stallings, K. (1996). Patient education: Issues, principles, practices. Philadelphia: Lippincott. Stewart, A., & Kamberg, C. (1992). Physical functioning measures. In A. Stewart & J. Ware, Jr. (Eds.), Measuring functioning and well-being (pp. 86-101). Durham, NC: Duke University Press. Thompson, C. L., & Richmond, M. (1990). Teaching home care for ventilator-dependent patients: The patient's perception. Heart and Lung, 19(1), 79- 83. Tilley, J. D., Gregor, E M., & Thiessen, V. (1987). The nurse's role in patient education: Incongruent perceptions among nurses and patients. Journal of Advanced Nursing, 12(3), 291-301. Yarcheski, A., Mahon, N., & Yarcheski, T. (1992). Validation of the PRQ85 social support measure for adolescents. Nursing Research, 41(6), 332-337.
Kathleen M. Nokes, PhD, RN, C, FAAN, is a professor and subspecialty coordinator for nursing of persons with HIV/AIDS at CUNY Hunter College; Joan Kendrew, MA, RN, CS, NP, is an HIV clinical nurse specialist at the New York Veterans Administration Medical Center; Anne Rappaport, MSN, MPH, RN, C, is an H1Vprogram nursing care coordinator at Metropolitan Hospital Center, New York City; Drexel Jordan, MNSc, RNP, OCN, is an HIV clinical nurse specialist at UAMS Medical Center, Little Rock, Arkansas; and Lillian Rivera, RN, MS, is an HIV nurse clinician at the Woodhull Medical and Mental Health Center, Brooklyn, New York.
their health care providers, (b) to measure shifts in learning needs over time, (c) to relate HIV-specific learning needs to length o f time living with H I V disease, (d) to give clients an opportunity to assess their learning needs, and (e) as part o f a larger intervention study that evaluates the effectiveness o f patient education.
Key words: Learning needs, persons with HIV/AIDS, nursing research, patient teaching
T e a c h i n g has always been an important component of nursing and today it plays a vital role in the delivery of safe, quality patient care (Rakel, 1992). Nurse Practice Acts, nursing theories since Nightingale, the Nursing Intervention Classification System, and the Joint Commission on the Accreditation of Healthcare Organizations standards all address patient education. When it is incorporated throughout the nursing process, patient education is a tool through which clients empower themselves (Rankin & Stallings, 1996). Persons with HIV disease need to know how to prevent the spread of HIV infection to their sexual and/or drugusing network and how they can maintain optimal levels of wellness.
Review of the Literature An educational needs assessment should address critical areas for learning. Although many patient teaching instruments have been published (Rankin & Stallings, 1996), an extensive search of the literature revealed that no other instrument assessed the learning needs of persons living with HIV/AIDS. Other instruments measured nurses' learning needs relative to caring for patients with AIDS (Jacobs, Grady, Ostchega, Gallaway, & Kish, 1989); knowledge, skills, and ad-
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 8, No. 6, November/December 1997, 46-51 Copyright 9 1997 Association of Nurses in AIDS Care
Nokes et al. / HENAT 47 herence counseling for nurses working in HIV clinical research (Child et al., 1994); and the components of HIV prevention videotapes targeted toward inner-city Hispanic populations (O'Donnell, San Doval, Vomfett, & DeJong, 1994).
Development of the Tool The purpose of the HIV Educational Needs Assessment Tool (HENAT) is to assess the infected person's perception of his or her learning needs. During 1989, a group of HIV/AIDS clinical nurse specialists developed items for this instrument, drawing from an extensive search of the HIV/AIDS professional and consumer literature and their clinical expertise. Face validity was established by having two additional clinical nurse specialists who were experts in the nursing of persons with HIV/AIDS examine each item for content validity. These content experts determined that each of the items was clear and addressed important information for persons living with HIV/AIDS. In 1990, two clients with HIV disease and two clients with AIDS reviewed the tool and advised that all of the items were relevant and that they had no additional items, thus giving additional verification for face and content validity. The items on the HENAT were developed to test general concepts that would be pertinent irrespective of changes in the epidemic. To illustrate, one item asks clients to indicate the importance of knowing the purpose of prescribed medications. This item remains especially relevant because the number of medications available to treat HIV disease continues to grow.
Ethical Considerations This study was approved by the Committees for Experimentation with Human Participants at the City University of New York, Hunter College, the New York Veterans Administration Medical Center, Metropolitan Hospital Center/New York Medical College, Woodhull Medical and Mental Health Center, the New York City Health and Hospitals Corporation, and the Univers~y of Arkansas for Medical Sciences, Little Rock, Arkansas. There were three New York and one Arkansas sites where data were collected. Written informed consent was obtained from each participant. All data was coded and kept in a locked cabinet in a location that was removed from the client care settings.
Procedure Each potential participant was informed about the study and given time to decide whether he or she wanted to participate. After informed consent was obtained, the participants completed the HENAT and a personal information form while the health care provider rated the client's functional status using the Karnofsky scale. Data collection took between 10 and 15 minutes. A member of the study team was available to assist clients who felt too weak to write or who needed help to complete the data.
Scoring Participants rated each of the 50 items on a Likerttype scale that ranged from 1 = not important to 5 = of great importance. To illustrate, one item reads, "To know if I should expect the test/procedure to make me feel sick." Participants indicated how important they believed it was to know HIV-specific information by circling the number that reflected their opinions.
Sample The convenience sample consisted of 363 volunteer participants. Data were collected during 1990 and 1993-1994 from hospitalized or ambulatory HIV+ persons (n = 236) and hospitalized or outpatients with AIDS (n = 127) in three tertiary care facilities in New York City and one tertiary care facility in Little Rock, Arkansas. All HIV+ participants were positive for HIV antibody on the ELISA and Western Blot blood tests, and all participants with AIDS had been diagnosed by a physician when they met the 1987 Centers for Disease Control (CDC) criteria for an AIDS diagnosis. All participants were over 18 years of age and able to read English. The average participant was middle aged, male, a person of color who was not working, and receiving public assistance. The sample was almost evenly divided between persons who reported HIV infection through male/male sex (38%) and through injection drug use (39%). Table 1 presents demographic data. According to self-report, the median number of months participants were diagnosed with HIV disease was 45 (range = 6-296) months and the median number of months diagnosed with CDC-defined AIDS was 24
48 JANAC Vol.8, No. 6, November/December 1997 (range = 1-103) months. Seventy-five (21%) of the persons with AIDS had been diagnosed with pneumocystis carinii pneumonia. The remainder of the persons with AIDS had been diagnosed with a variety of other AIDS-defining conditions as established by the 1987 criteria. The 100 to 0 Kamofsky scale was used by the researchers with a subsample (n = 286) to assess performance status (Karnofsky & Burchenal, 1949). Ninety two percent (n = 262) were scored between 70% (cares for self, unable to carry on normal activity or to do active work; n = 48, 17%) and 100% (normal, no complaints, no evidence of disease; n = 68, 24%). Only 4 clients scored below 60% (range = 20% to 50%).
Results The Statistical Programs for the Social Sciences were used for all data analysis procedures and a minimum significance level of .05 was established. To shorten the HENAT into a form that could be answered more readily in a clinical setting, a number of statistical tests were performed. Items were first evaluated to assure adequate variability (Stewart & Kamberg, 1992). Although the range of responses for each items was between 1 and 5, many clients believed that each item assessed information that was very important, which added to the content validity of the instrument but limited the variability of the responses. Sample size was adequate for a factor analysis of the 50-item instrument (DeVellis, 1991). An exploratory factor analysis was used because there was an open question about the number and kinds of factors that would be derived from the variables (Kim & Mueller, 1978; Nunnally, 1978). Principal axial factor extraction was used because the purpose of the factor analysis was instrument development (Froman, 1994). Each of the factor analyses solutions used a principal axial factor extraction method and varimax rotation. The first solution indicated that six factors had eigenvalues greater than 1 and so the subsequent analyses specified a criteria of six factors. Selection of items to comprise each factor was based on the following criteria: an item-factor loading of at least .40 on the primary factor and a difference of at least .20 between an item's loading on the primary factor and any other
Table 1. Frequenciesof SelectedDemographicVariables(N= 363) Variable
n
Percentage
Age 21-29 32 30-39 135 40-49 147 50-59 28 60 or more 20 Missing 1 Gender Male 319 Female 44 Ethnicity Black/AfricanAmerican 132 White 103 Hispanic/Latino 119 Asian 1 Other 6 Missing 2 Income On public assistance 168 Less than $10,000 88 $10,000-20,000 49 $21,000-30,000 23 $31,000-40,000 9 $41,000-50,000 0 Over $50,000 3 Missing 23 Employmentstatus Not working 273 Work 10-20 hours/week 16 Work 20-30 hours/week 16 Work 40 hours/week 30 Work morethan 40 hours/week 19 Missing 9 Risk behaviors associatedwith HIV infection Male/malesex 139 Injectingdrugs 140 Male/malesex and intravenous drug user 8 Sex partner (intravenousdrug user) 27 Blood product 9 Other or missin[[ 29
(11%) (37%) (40%) (07%) (05%) (00%) (88%) (12%) (36%) (28%) (33%) (00%) (02%) (01%) (46%) (24%) (14%) (06%) (03%) (00%) (01%) (06%) (75%) (04%) (04%) (09%) (05%) (03%) (38%) (39%) (02%) (07%) (03%) (08%)
a. Age range = 21-67 years.
factor (Yarcheski, Mahon, & Yarcheski, 1992). Sixteen items did not meet that criteria and were deleted. Item numbers, items, means, and standard deviations for the remaining 34 items grouped according to the six factors are presented on Table 2. Table 3 presents the items on each factor, eigenvalues, percentage of the explained variance, and Cronbach's alpha reliabilities for
Nokes et al. / HENAT Table 2.
Item #
Item Data and Final Factor Analysis (N = 363)
Item
Mean SD Loading
Factor lmTreatments 9. 5.
3. 11. 4. 10. 8. 1. 15. 17.
To know the purpose of the prescribed medications To know why it is necessary for me to have different tests/ procedures To know what my condition is now To understand the results of my blood and other diagnostic tests To know what to expect during a test procedure To know the side-effects associated with the prescribed medications To know if I should expect the test/ procedure to make me feel sick To know exactly what the diagnosis of AIDS/HIV infection means To know how to get relief of any pain that I might have To know about research treatments open to me
49. 45. 47. 48.
46. 42.
40. 41.
To know what governmental programs can help me To know that I will receive health care even if I run out of money To know what financial help is available To know where I can get help with legal problems To know that transportation to the hospital and clinic is available if I need it To know about housing if I can't stay where I live To know that the staff will do everything they can to make me comfortable To know that the staff feels comfortable taking care of me To know that my questions will be answered honestly and directly
Item # 39.
4.6
.6
.693
Item
To know that the staff is specially educated about the latest in care of persons with HIV/AIDS
Mean SD Loading
4.5
.7
.437
3.0 1.7
.828
3.4 1.7
.616
3.1 1.8
.591
3.5 1.5
.579
4.6
.8
.617
4.3 1.1
.578
4.6
.9
.535
4.6
.8
.501
4.5
.9
.494
4.0 1.0
.626
3.5 1.3
.498
4.0 1.1
.439
3.7 1.3
.689
3.5 1.4
.530
Factor 3---Relationships 29. 4.3 4.6
.9 .7
.654 .648
4.5
.7
.620
44.
30. 4.3
.9
.611
4.6
.7
.609
4.4
.8
.537
27.
To know that someone will help me tell my children that I have AIDS To know that if I am too sick to take care of my children, someone will help me To know why it's important to keep my drug use equipment clean or not to use drugs To know that someone will help me answer questions about the best way to tell my family that I have AIDS
Factor 4---Preventing Infections 4.5
.9
.507
4.4
.7
.439
4.6
.7
.400
4.6
.9
.765
4.5
.8
.747
4.4
.9
.639
4.2 1.0
.641
4.3
.9
.612
4.4 1.0
.610
Factor 2---Entitlements 50.
49
4.6
.7
.504
21.
To know if there is anything I can do to keep from getting new infections 25. To know how to protect my sexual partner from becoming infected 28. To know how I can protect my family and friends from getting infected with HIV 34. To know about the possibility of a cure or vaccine 32. To know that information about my diagnosis is confidential and will not be shared with anyone without my permission Factor 5---Social Support 36. To know that there is a health care provider to talk with when I feel down 35. To know any groups of other people with HIV/AIDS that I can meet with 33. To know how other persons with HIV/AIDS deal with their disease
Factor 6---Worldng 4.5
.7
.477
7.
4.7
.5
.454
22.
each of the subscales. All of the reliabilities were within an acceptable range (.70) or greater (Nachmias & Nachmias, 1992). The six factors that emerged were Treatments (10 items), Entitlements (10 items), Relationships (4 items), Preventing Infections (5 items), Social Support (3 items), and Working (2 items). Six subscores that reflect the six factors and a total score can be derived.
To know if I can return to work or other activities right after a procedure To know if I can go back to work full-time or part-time
In addition to preliminary procedures to establish face validity of the instrument, additional support for face validity is whether clients add other items to those already identified (Gill & Feinstein, 1994). Face validity of the HENAT was enhanced in that most clients did not respond to the request to "Tell us what other information you think is important to know about," and in those cases where clients did write in additional
50 JANAC Vol.8, No. 6, November/December1997 Table 3. FactorAnalysisResults and Cronbach's Alphafor Each of the Subscales Factor
Number of Items Eigenvalue Variance Reliability
Treatments Entitlements Relationships Preventinginfections Social support Working
10 10 4 5 3 2
11.4 6.1 2.65 1.52 1.25 1.0
22.9% 6.1% 5.3% 3.0% 2.5% 2.0%
.87 .88 .76 .75 .75 .70
Note: Totalvarianceexplained= 42%. items, the content had been covered by a specific item on the instrument. To illustrate, one client wrote in that it was important to know about privacy rights, and the authors believe that this concept was addressed in Item 32, "To know that information about my diagnosis is confidential and will not be shared with anyone without my permission." To determine concurrent validity, it was expected that responses on subscales of HENAT would be consistent with the client's self-report on the personal data sheet. An ANOVA was computed between the Working subscale and clients' self-report about whether they were working (n = 81) or not working (n = 273). The Ftest was highly significant (F= 42.7, df= 1,p = .000), which supports the claim that the Working subscale on HENAT is consistent with self-report data. To demonstrate reliability for the HENAT, several reliability procedures were conducted. Internal consistency reliability for each of the six factors has been noted earlier (see Table 3). Test-retest reliability was achieved by giving participants who returned for a follow-up visit the same form of the HENAT two separate times that were separated by at least 2 months. Pearson correlations for the subset of participants (n = 195) who completed HENAT a second time were .56, .67, .63, .57, .60, and .54 for the Treatments, Entitlements, Relationships, Preventing Infections, Social Support, and Working subscales, respectively. Discussion and Conclusions
This study was a preliminary effort to establish the reliability and validity data for the HENAT. Although there was an adequate range of responses, a large number of the respondents rated the items as either very important (4) or of great importance (5), as can
be seen by an examination of the means on each of the items provided in Table 2. Internal consistency reliabilities for each of the six subscales were in the acceptable to high range (.70 to .88). The lower (although statistically significant) testretest reliabilities were probably due to the effect that time has on the changing knowledge needs of persons who are living with HIV/AIDS. Participants completed the second HENAT after at least 2 months had elapsed, and because the course of HIV disease is highly variable, this can affect the client's learning needs. Although the Working subscale only has two items that met the factor analysis criteria, 75% of the sample reported that they were not working. The authors decided to retain this subscale because advances in treatment for HIV disease have resulted in longer periods of health and it is hoped that more persons with HIV/AIDS will be able to continue to work. Two of the items on the Relationship subscale address issues related to children. In future work, participants should be asked if they have children because this may not be an issue for all clients with HIV/AIDS. Future studies will continue to validate the HENAT. The items on HENAT ask clients to respond to their perception of whether an item is important to know. They do not assess whether clients know the information or are satisfied with their knowledge level. Research has demonstrated that the information needs of nursing staff and patients are not always congruent (Dodge, 1972; Gerard & Patterson, 1984; Karlik, 1987; Lauer, Murphy, & Powers, 1982; Thompson & Richmond, 1990; Tilley, Gregor, & Thiessen, 1987). The HENAT can be used to measure shifts in learning needs over time and can examine differences in perception of learning needs between clients with HIV disease and their health care providers. Perhaps if nurses are clearer about what the client wants to know, the client will be more empowered about how to live with HIV/AIDS and optimize wellness. Case managers of persons with HIV/AIDS can use the HENAT to assess learning needs and the six subscale scores can be used to determine appropriate referrals. To illustrate, clients with a learning gap in the entitlements category could be referred to an entitlements expert; clients with a gap in social support could be referred to a provider who could assist the
Nokes et al. / HENAT 51
client with mental health needs. With continued refinement, the HENAT can be used to relate H1V-specific learning needs to length of time living with HIV disease, as a self-care learning assessment measure, and as part of an intervention study that evaluates the effectiveness of teaching. The HENAT's use in home care settings and the community can help the provider target the teaching content to what the client believes is important to know about living with HIV/AIDS.
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