Assessing Community-Based AIDS Helpline Service Provision in ...

AIDS and Behavior, Vol. 4, No. 2, 2000

Assessing Community-Based AIDS Helpline Service Provision in Alaska Scott J. Turner,1 Grace L. Reynolds,1,2 Andrea M. Fenaughty,3 Dennis G. Fisher,3,4 Henry H. Cagle,3 and David Paschane3 Received Oct. 27, 1998; revised Apr. 1, 1999; accepted May 6, 1999

AIDS helplines provide an important public health service in disseminating information on HIV/AIDS, sexual risk behaviors, testing information, and situations that do not confer the risk of HIV acquisition. The Alaskan AIDS Assistance Association (AAAA) maintained a telephone helpline for the state of Alaska. This paper evaluated data collection efforts at this community-based organization. Data concerning the demographics of callers and topics and patterns of helpline utilization for the years 1991, 1992, 1995, and 1996 were investigated. Differences were found in topics of inquiry with respect to caller gender and time of day in which the call was logged, using correspondence analysis. Men were more likely to request information on HIV testing and safe-sex practices. Women were more likely to request information on other topics such as household transmission of HIV and information on transmission of HIV to children in settings such as childcare centers and schools. Knowledge of caller demographics and concerns has been used by AAAA to improve helpline services and volunteer training. Revelations concerning missing data have resulted in changes to data collection procedures. KEY WORDS: Telephone; helpline; hotline; AIDS; volunteer; Alaska.

BACKGROUND

The CDC compiled extensive quantitative and qualitative statistics about the CDC National AIDS Hotline in an effort to understand who was using this helpline and what distinguished callers from the general public (Scott, 1995). CDC found that a majority of the callers were young and sexually active, and many called after viewing a television special about the risks of contracting HIV/AIDS. CDC found that telephone hotlines were an integral component of a public health campaign, and that the general message to call the hotline drew callers who were at the transition point of moving from precontemplation to contemplation of changing risky behaviors (Scott, 1995). One aspect of evaluating helpline effectiveness is to determine which questions helplines can be most effective in answering. In an analysis of AIDS helpline calls from Houston, Texas, and Milwaukee, Wisconsin, Kalichman and Belcher (1996) found that calls could be organized into 11 categories based on the type of information or service requested. These categories included calls for information about HIV

Disseminating accurate information about HIV/ AIDS is an essential part of preventing further HIV infection and in destigmatizing AIDS-related illness with the general public. As a tool to provide information, AIDS service organizations, states, municipalities, and national agencies such as the Centers for Disease Control and Prevention (CDC) have established telephone helplines. Because callers to helplines can remain anonymous, they may feel freer about asking questions about sensitive or sexually explicit topics without fear of disclosure. 1

Alaskan AIDS Assistance Association, Anchorage, Alaska. Present address: Doctoral student, School of Policy, Planning and Development, University of Southern California, Los Angeles, California. 3 IVDU project, University of Alaska Anchorage, Alaska. 4 Correspondence should be directed to Dennis G. Fisher, IVDU Project, University of Alaska Anchorage, 3211 Providence Drive, Anchorage, Alaska 99508. 2

159 1090-7165/00/0600-0159$18.00/0  2000 Plenum Publishing Corporation

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Turner, Reynolds, Fenaughty, Fisher, Cagle, and Paschane

testing, sexual transmission of HIV, HIV-related symptoms, and situations that do not confer the risk of acquiring HIV infection. Wellman (1993), in a study of AIDS helpline calls received at a community-based helpline in Worcester, Massachusetts, found that adolescents, though at high risk of HIV infection, were unlikely to call the local helpline. Wellman’s study also found gender differences by type of call. Men were more likely to request information on HIV testing and had questions concerning their self-risk, whereas women were more likely to have questions concerning others. The Canadian province of Alberta, in an evaluation of its AIDS and sexually transmitted diseases information line, found that there was widespread support for the existence of such an information service. Evaluators also found that the majority of those accessing the service obtained the telephone number from the telephone book, and that awareness of the existence of the service was highest among those practicing risky behaviors (Alberta AIDS Program, 1993). They also found that most callers used the service when they had a particular problem, and used the service only once. The objective of this study was to examine information about helpline caller demographics and caller inquiry topics, and to identify any meaningful trends that could affect decisions regarding helpline content, training of the volunteer helpline attendants, and provision of services by the Alaskan AIDS Assistance Association (AAAA). In 1990, AAAA established a toll-free, anonymous HIV/AIDS telephone helpline to meet the need for anonymous information concerning HIV/ AIDS in Alaska. Located in Anchorage, the largest urban center of the state, AAAA was, at that time, the only AIDS service organization in the state. As an agency, it had a statewide mission of education and prevention, as well as direct service provision to those who were HIV-infected. Both permanent staff and volunteers staffed the helpline. Volunteers were trained specifically to provide answers to questions concerning current information on HIV risk and HIV testing within Anchorage and other communities around the state. AAAA, as part of their effort to disseminate information on a statewide basis, made use of advertising in local telephone directories in approximately 24 outlying communities throughout Alaska. They also routinely advertised the helpline telephone number in the personals section of local newspaper classified ads.

METHODS Helpline attendants were requested to record caller demographics, caller location (city from which they were calling around the state), referral source, date, time of call, and inquiry topics such as HIV testing, AIDS information, or safe sex. Telephone logs were kept at a central location near the helpline telephone bank. These logs were handwritten on standardized sheets, and sheets were initialed by the volunteers at the end of each shift and kept on a clipboard. The handwritten information was often difficult to read. All helpline volunteers underwent intensive training on how to handle helpline calls. This training included the most recent information concerning HIV testing, routes of transmission, services available through AAAA and how to access them, and where and how to access other community services. The training also consisted of role-playing exercises, tailored to handling calls from a variety of types of callers, including, e.g., those who were emotionally upset, those uncomfortable discussing topics of a sexual nature, or those callers who were under the influence of drugs or alcohol at the time of the call. Volunteers were also introduced to methods of reflective/ active listening and engaged in listening exercises. Once volunteers completed the training, they were scheduled for a helpline shift. No other supervision was provided, although additional training sessions were held at periodic intervals to update information. No informed consent process was in place for helpline callers at the time the data presented in this paper were gathered. Using helpline telephone logs, 2,026 records were examined to identify inquiry topics and caller demographics. This report included calls recorded in 1991, 1992, 1995, and 1996, gathered by helpline attendants. During the period of examination, the helpline was staffed 24 hr/day, 7 days/week. Cases with missing data were excluded from the analyses, but are reported in the demographic information. Further information on the issue of missing data can be found in the discussion section. Data were analyzed to determine inquiry topic differences between men and women. Correspondence analysis, an exploratory data analysis technique used to graphically display data of contingency tables and multivariate categorical data, was employed to determine patterns. It may be thought of as a weighted principalcomponent analysis that finds a low-dimensional graphical representation of the association between

Community-Based AIDS Helplines

161 Table I. Summary of Caller Demographics

Demographics Gender Men Women Gender missing Ethnicity White Native American AfricanAmerican Hispanic Asian/Pacific Islander Other Ethnicity misssing Age (years) Age missing

n

%

991 991 44

49 49 2

52 48

825 112 54 21 11 7 996 981 1,045

41 6 3 1 ⬍1 ⬍1 49

78 17 5 3 1 1

the rows and the columns in a contingency table (Greenacre, 1984; Hoffman and Franke, 1986). We implemented the correspondence analysis using PROC CORRESP (SAS Institute, 1990). In this analysis, gender and time of day during which the call was logged were used for the rows, and inquiry topics were the columns that were the input to the data analysis.

RESULTS Basic caller demographics are displayed in Table I. The proportion of men and women making calls to the helpline was equally distributed as 49% for each sex, for a total of 98%; 2% missing. The majority of callers were White (41%), followed by Alaska Native (6%) and African Americans (3%); 50% missing. The mean age of callers was 33 years old (range 12–77). This table also provides demographic infor-

33

Telephone book Newspaper Poster Directory assistance Agency referral TV adversitement Friend Brochure Radio advertisement Other Source missing

n 533 149 77 65 57 44 41 20 6 4 1,030

% 26 7 4 3 3 2 2 1 ⬍1 ⬍1 51

Range

12–77

mation on gender and race/ethnicity for the state of Alaska overall for comparison. Table II shows the distribution of sources from which callers identified receiving the helpline telephone number. The majority of callers obtained the helpline telephone number from their local telephone book (white versus yellow page advertisement not distinguished) followed by newspaper advertisements. A smaller proportion of callers identified posters, directory assistance, another agency referral or a television advertisement as sources of the helpline telephone number. Table III shows the geographic location within Alaska from which the calls were made. The majority of callers were from the metropolitan Anchorage area (58%) followed by communities within geo-

Table III. Self-Reported Caller Location

Table II. Source of Helpline Phone Number Source

M

Proportion for Alaska (%)

Location Anchorage Kenai Matanuska-Susitna Valley Other Alaska locationsa Fairbanks Juneau Kodiak Bethel Location missing a

n

%

Proportion of Alaskab population (%)

1,167 83 75 71 45 30 19 18 518

58 4 4 3 2 1 1 1 26

42 8 8 7 14 5 2 3 —

Includes Ketchikan, Valdez, Nome, and Barrow. Alaska Bureau of Vital Statistics (1996). Locations that had no calls ⫽ 11%.

b

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graphical proximity (driving distance) to Anchorage. Anchorage is the largest municipality within the state of Alaska and contains over 40% of the state population. It was also the location of the helpline. Information on the population distribution of the state of Alaska overall is included in the table for comparison purposes. A difference in caller topics distinguished female and male callers (see Table IV). The largest majority of male caller topics were HIV-testing information (581 of 1,063 total calls), safe-sex information (152 of 253 total calls), and referrals to other agencies (120 of 235 total calls). In contrast, women were more likely to call on other topics (77 of 133 total calls), to have calls classified as counseling calls (53 of 126 total calls), and to call regarding general AIDS information (532 of 995 total calls). The time of day during which callers were most likely to call was also investigated. Figure 1 shows the breakdown of calls based on the 24-hr day during which the helpline was staffed. Findings indicate that the majority of calls occurred during the morning hours between 9 A.M. and noon. Overall, calls were most likely to occur during the 8 hr of a traditional workday, from 9 A.M. to 5 P.M. The correspondence analysis (Fig. 2) indicated that there were two dimensions to the data, with the first dimension accounting for 50.49% of the inertia. The concept of inertia in correspondence analysis is analogous to variance in a principal-component analysis (SAS Institute, 1990, p. 617). The second dimension accounted for 40.03% of the inertia. There was a third small dimension accounting for 9.49% of the inertia. This figure has the dimensions of four quadrants in which there are two quadrants for calls made by men, morning (A.M.) and evening (P.M.),

and two quadrants for calls made by women, morning (A.M.) and evening (P.M.). Men are most likely to call in the mornings requesting information on HIV testing and for referrals to other agencies. Calls in the very early hours of the morning by men were characterized as crisis calls (e.g., suicidal). Women were found most likely to call regarding general AIDS information in the morning. In the afternoon/ evening hours, men were more likely to call regarding safe-sex information, to make a crank call, to request a referral to AAAA, and to call regarding safer injection practices. In the afternoon, calls by women generally fell into the ‘‘other’’ category, or were characterized as a counseling call. Scrutiny of the telephone log books revealed that the other category included topics such as household transmission, the risk of HIV infection in children in settings such as schools and day care, and questions concerning specific caregiving practices or resources for women who were acting in a caregiving role for family members.

DISCUSSION The main findings of this study were as follows: (a) There were gender differences in the type of questions asked by callers, (b) there were differences in the time of day males and females were most likely to call, (c) the pattern of topics by time of day was different for male as compared to female callers, and (d) there were large quantities of missing data generated by this community-based organization’s data collection efforts. These findings illustrate the need for agencies that provide telephone-based services to consider the potential diversity of callers when providing services and considering staffing arrange-

Table IV. Inquiry Topic of Helpline Calls By Gender Topic HIV testing General AIDS information Safer sex Interagency referral Intraagency referral Other topics Counseling call Needle use Crisis call Crank call Missing data *p ⬍ .01.

Number of calls 1,063 995 253 235 203 133 126 19 17 14 59

Men (N ⫽ 991) n (%) 581 463 152 120 109 56 53 10 10 9

(59) (47) (15) (12) (11) (6) (5) (1) (1) (1)

Women (N ⫽ 991) n (%) 482 532 101 115 94 77 73 9 7 5

(49) (54) (10) (12) (10) (8) (7) (1) (1) (⬍1)

␹2 20.28* 9.54* 11.86* .13 1.25 3.53 3.35 0.05 0.54 1.16

Community-Based AIDS Helplines

163

Fig. 1. Number of calls by time of day.

Fig. 2. Correspondence analysis of call topic by A.M./P.M. and caller gender.

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ments for helplines. In addition, the propensity for calls by women to be classified as ‘‘other’’ illustrates the wide diversity of topics on which women callers may need information. Within the setting of Alaska, it should be noted that the majority of AIDS cases in the early days of the epidemic were among gay men (State of Alaska, Division of Public Health Section of Epidemiology, 1999), and the call categories on the helpline log sheets might have been biased in this direction based on this early experience. This is illustrated by the fact, as stated above, that most of the calls by women fell into the general AIDS information and ‘‘other’’ categories. For example, household transmission was one category of concern for women. Questions concerning risks for children from association with HIVinfected adults or other children in day-care settings were also frequently asked by women, but noted under the ‘‘other’’ category for data collection purposes. Helpline volunteers were able to answer questions concerning these topics, as they were covered in the initial training session; however, due to the limitations of the data collection form, this information was collected as general AIDS information or as ‘‘other.’’ Since the helpline was established in 1990, the demographics of those affected by HIV/AIDS have changed, leading to changes in the type of caller who makes use of the telephone helpline. Thus, we advocate that periodic reviews of community-based program data be done for purposes of identifying necessary changes in service provision or content based on the changing demographics of the populations being served. Gender differences have been noted not only in the use of telephone helplines (Wellman, 1993), but in other areas of health care. For example, Sindelar (1980) identifies several components of differential health care use by women, specifically addressing the economic context of women’s roles as caregivers within the family. It is not surprising, therefore, to find that half of the callers to the helpline were female, and that they had a broad range of questions on which they required information. In addition, Longshore et al. (1992) found gender differences in AIDS-related knowledge and attitudes, especially among high-risk and minority groups of women. Those agencies providing helpline information services should use these gender differences to advantage, perhaps incorporating an awareness of these differences into volunteer training, to better facilitate addressing questions of female callers. Scott and Mathews (1997) pointed out that health information seeking is ‘‘an important component of ‘self-

help’ and personal empowerment for women’’ (p. 189). Local telephone helplines can be an important source of information for those women who do not have other resources from which to obtain health information. The fact that men more often called regarding HIV testing in the morning hours may be an indicator of a ‘‘morning after’’ phenomenon. Specifically, concern about potential HIV infection due to a sexual encounter the night before may have been motivating callers to phone for testing information in the morning. Similarly, calls by men for safer sex information in the afternoon hours may have been a prelude to anticipated sexual encounters for the coming evening. The biggest drawback in this study was the lack of key demographic information on a large number of telephone logs, which generated missing values in a number of important variables. In some cases, entire years of data were missing, illustrating the difficulty that community-based organizations may have in compiling and retaining this type of data for evaluation purposes. Staff turnover tended to be high during some years of the data collection effort, and training of volunteers who staffed the helpline was inconsistent. In addition, community-based organizations such as AAAA, staffed by volunteers, usually draw on a large number of very committed individuals, who may place respondent anonymity above the need for data collection. These concerns regarding the extent to which collecting simple demographic data may compromise caller anonymity need to be addressed in a systematic manner when training volunteers. Large amounts of missing data undermine the value of data collection efforts and limit the conclusions that can potentially be drawn. On the other hand, if attempts to gather data from callers result in the perception (by either the caller or the helpline attendant) that the helpline volunteer’s job is to collect data, rather than answering questions in a sensitive and caring manner, the helpline effort may ultimately be undermined. These two needs should be balanced. One solution might be to limit collection of demographic information to the end of the telephone call, after the caller’s questions and concerns have been addressed, resulting in a lessening of caller anxiety. Helplines are an important part of disseminating public health information. Helplines can provide upto-the minute information concerning HIV and AIDS and can serve as a tool to counter inaccurate or anecdotal information. For example, when a nurse midwife in Manchester, England, disclosed that she

Community-Based AIDS Helplines was HIV-positive, a helpline was established to provide information and reassurance to women who had given birth at the hospital during the nurse midwife’s tenure that their risk of infection was minimal (Gentleman and Patton, 1998). The implications for the current study in differences in how men and women use the helpline are obvious for local providers. Referral lists have been updated to include services for women, and volunteer training has been expanded specifically to cover issues of concern to women. In addition, AAAA now has a computerized database into which information about helpline calls is entered at the time of the call. More categories for types of questions posed by callers are available in the database, and training includes how to determine the topic(s) of the call. Data are reviewed on a weekly basis for completeness. There is also an informed-consent process in place, to inform callers that demographic information will be collected at the conclusion of the call. Callers are given the opportunity to refuse to disclose demographic information. Finally, the helpline is no longer staffed 24 hr/day. In 1995, prior to this study, the helpline hours were reduced to 9 A.M. to 5 P.M. Monday through Friday due to volunteer burnout. Results from this study have been used to maintain the current hours of operation and level of staffing. Local telephone helplines should be tailored to address the specific concerns of the local population. They serve as an important information bridge between the public health professional and the general public.

ACKNOWLEDGMENTS This research was funded in part by grants U01 DA07290, R01 DA10181, and F32 DA05599 from

165 the National Institute on Drug Abuse and grant 067385 from the State of Alaska, Department of Health and Human Services, Section of Epidemiology. The authors thank Eric Gustafson, Ross Crich, and Michael Covone for their assistance. REFERENCES Alaska Bureau of Vital Statistics. (1996). Annual Report. Juneau, AK: Author. Alberta AIDS Program. (1993). Evaluation of the Alberta health AIDS/STD information line. [Available from the CDC National AIDS Clearinghouse, Document Delivery Service, P.O. Box 6003, Rockville, MD 20849–6003.] Gentleman, A., and Patton, L. (1998, April 16). Mothers face distress over HIV positive midwife. The Guardian (Manchester, England), 1998 (April 16), p. 3. Greenacre, M. J. (1984). Theory and application of correspondence analysis. Orlando, FL: Academic Press. Hoffman, D. L., and Franke, G. R. (1986). Correspondence analysis: Graphical representation of categorical data in marketing research. Journal of Marketing Research, 23, 213–227. Kalichman, S. C., and Belcher, L. (in press). AIDS information needs: Conceptual and content analyses of questions asked of AIDS-information hotlines. Health Education Research: Theory and Practice. Longshore, D., Hsieh, S. C., and Anglin, M. D. (1992). AIDS knowledge and attitudes among injection drug users: The issue of reliability. AIDS Education and Prevention, 4, 29–40. SAS Institute (1990). SAS/STAT user’s guide, version 6, (4th ed., vol. 1). Cary, NC: Author. Scott, S. A. (1995). Using the telephone to reach and teach the American public: Experiences of the CDC national AIDS hotline. Presentation at the 11th National Conference on Chronic Disease Prevention and Control. Scott, S. A., and Mathews, A. P. (1997). Listening to women: lessons on HIV/AIDS prevention from the national AIDS hotline. Presented at the National Conference on Women and HIV, May 4–7, 1997 (Abstract P2.72). Sindelar, J. L. (1980). Differential use of medical care by sex. Report 8029. Chicago: University of Chicago, Center for Mathematical Studies. State of Alaska, Division of Public Health, Section of Epidemiology (1999). HIV infection—Alaska. Epidemiology Bulletin No. 4. Anchorage, AK: Author. Wellman, M. C. (1993). An AIDS hotline: Analysis of callers, presenting problems and social factors. Journal of Applied Psychology, 23, 1111–1123.