AIDS

HEALTH EDUCATION RESEARCH Theory & Practice

Vol.11 no.l 1996 Pages 117-124

SHORT COMMUNICATION

Needs assessment for patient education for people with HIV/AIDS S.Sengupta and K.M.Roe

This study examines the need for a comprehensive patient education program that emphasizes self-help for adults living with HIV/AIDS. Data were collected using a self-administered, written questionnaire. Participants were recruited from agencies in northern California. This study revealed that 59 of 70 respondents were relatively satisfied with the services, including patient education, available in their community. Of the 70 respondents, 69 felt there was a need for a comprehensive patient education program. The study's findings illustrate both distinct differences and commonalties between the experiences, perceived needs and priorities of male and female respondents. These findings will help HIV/AIDS service agencies re-structure their health education programs and assist in patient education program development Future research in this area needs to address the perceived needs and priorities of different subgroups living with HTV/AIDS.

Introduction Over the last 30 years, the principles of selfhelp have become integral to the field of health education. Patient education has been particularly effective in teaching self-help strategies for managing acute and chronic diseases (Long, 1992). As a result, many individuals have adopted new health behaviors that directly enhance the quality of their Department of Health Science, San Jose State University, San Jose, CA 95192, USA

© Oxford University Press

lives, while bringing the added benefit of reducing the rising costs of health care (Holzemer, 1992). Within the spectrum of HIV and AIDS care, patient education programs emphasizing self-help have been introduced but not consistently implemented by most service organizations, especially in moderate to low incidence areas (Crystal, 1989; Lenker et al., 1993). One of the factors inhibiting full implementation is that HTV infection and AIDS are not yet treated as chronic diseases by parts of the health care system, including some HIV/AIDS service organizations (Fee and Krieger, 1993). In many cases, the epidemic is still perceived as it was in the early years when individuals were not diagnosed with AIDS until they were dying of AIDS-related illnesses (Curran, 1985). From this perspective, self-help programs for long-term health maintenance are irrelevant. As more people are living longer with their diagnosis, it is important to recognize HIV infection as a chronic disease that can be controlled, often for significant periods of time, through close monitoring of symptoms and positive health promoting behaviors (Sarti, 1990). Patient education may offer HIV-infected individuals information and confidence-building skills to improve the quality of their lives through selfmanagement of their condition. The conceptual framework used in patient education programs that focus on self-help incorporates theory and techniques from both the social and behavioral sciences. Social Learning Theory and Self-Efficacy Theory are used to deal with chronic illnesses within the fields of health education and health psychology (Bandura, 1986). One of the principle organizing themes of Social Learning Theory is reciprocal determinism, which recognizes a dialec-

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Abstract

S.Sengupta and K.M.Roe

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determine which self-help topics were perceived as important in a patient education program for people living with HTV/AIDS, (3) provide an assessment of self-help needs and priorities to community-based organizations that offer HTV7 AIDS-related services, and (4) provide HIVinfected men and women the opportunity to express their thoughts and concerns about living with HIV/AIDS.

Methods The design of this study was descriptive research, using a written, self-administered questionnaire to explore the patient education needs of people living with HIV/AIDS. The target population was accessed through AIDS service organizations that offered clinical care, support groups and HIV/ AIDS-related education in the greater San Francisco Bay Area. Of the 100 organizations we identified, 11 agreed to participate in the study. Two of these agencies served women only. Since no direct contact with HIV-infected clients was permitted during data collection due to confidentiality issues, health educators and HTV coordinators were the primary contacts at these agencies. The contact people were sent 200 questionnaires to distribute to interested HIV-infected clients who were 18 years or older, with specific instructions to have the clients complete the questionnaires at the agency. The Kaiser HTV education seminar was the exception because it was held in a public forum where any individual or organization was allowed to solicit information. Telephone calls were made periodically to the contact people in order to expedite the data collection process. The data collection period was from September 1993 to February 1994. Contact people also provided information on the number of clients, including gender and ethnic breakdowns, who were potential subjects for the study within the data collection period. An original survey instrument, including both closed and open-ended questions, was designed to anonymously explore respondents' attitudes about living with HIV/AIDS, and perceived needs and


tic relationship between the individual, the individual's behavior, and the environment (Perry etal., 1990). Perceived self-efficacy refers to 'people's beliefs in their capabilities to mobilize the motivation, cognitive resources, and courses of action needed to meet given situational demands' (Gonzalez et al., 1990, p. 133). In other words, selfefficacy is concerned with the level of confidence one has in performing a certain health-related behavior, rather than actually performing that behavior. There is a growing body of research which demonstrates that health education interventions can change self-efficacy, and that changes in self-efficacy are associated with changes in behavior and health status (O'Leary, 1985; Strecher et al., 1986; Lorig et al., 1989; Lorig and Holman, 1993). Patient education programs that focus on selfhelp approaches can assist individuals with selfmanagement techniques that can result in healthy attitude and behavior changes (Webber, 1990). Attitudinal and behavioral changes will become increasingly important as more people live longer with an HTV seropositive and/or an AIDS diagnosis. Recent research suggests that infected gay and bisexual men are developing sets of HIVspecific, self-help behaviors that are maintaining their health or delaying disease progression (Lovejoy et al., 1991). Today, AIDS remains a public health problem. A comprehensive patient education program emphasizing self-help may be an innovative approach to deal with HIV infection and AIDS as chronic diseases. Past research on chronic disease self-management demonstrates the cost and social benefits of using patient education to enhance quality of life (Lorig and Gonzalez, 1993). This well-developed area of health education can be easily extended to HTV/AIDS care. This needs assessment was designed to explore the perceived need for a comprehensive patient education program for people living with HTV/AIDS. The objectives of this study were to (1) determine the perceived need for a comprehensive patient education program designed to teach self-help strategies to men and women living with HIV/AIDS, (2)

Needs assessment for patient education

Results The target population consisted of 830 adults, 647 men (78.0%) and 183 women (22.0%), with a selfreported HIV seropositive and/or AIDS diagnosis, based upon the number of clients reported from each of the participating agencies. Over two-thirds (70.2%) of the target population were Caucasian, 14.5% were Black, 13.0% were Hispanic and 1.4% were Asian. Less than 1.0% were classified in the 'other' category. Of the 200 questionnaires sent to the agencies, 70 (35.0%) completed questionnaires were returned to the researchers. Over three-quarters (82.9%) of the completed questionnaires were from clients at agencies which provided support groups as opposed to other HIV/AIDS-related services (e.g. HIV/AIDS education and clinical care). Table I provides an overview of the demographics of the sample. A total of 52 men and 18 women with a self-reported HIV seropositive and/ or AIDS diagnosis participated in the study. More than three-quarters (80.8%) of the male respondents and 50.0% of the female respondents were Caucasian. Over half (54.3%) of the males were gay and nearly all (88.9%) of the females were heterosexual. The majority of males (61.5%) and females (77.8%) were single. However, two-thirds of the

Table L Description of the sample population Demographic categories Ethnicity Caucasian Asian Hispanic Black Education level (hf) HIV Status HTV+ (no symptoms) AIDS (with symptoms) AIDS (no symptoms) Living with HIV/AIDS for 5 years or more Sexual orientation gay/lesbian bisexual heterosexual Relationship status single married domestic partner primary relationship Have children Live with children Health care provider HMO Medi-Cal private doctor other

Men (« = 52)

Women (n = 18)

9 (50.0%)

42 (80.8%) 1 (1.9%) 6(11.5%) 3 (5.8%) 14.8*

9 (50.0%) 13.41

14 (26.9%) 33 (63.5%) 5 (9.6%)

8 (44.4%) 9 (50.0%) 1 (5.6%)

35 (67.3%)

9 (50.0%)

38 (543%) 10 (19.2%) 4 (7.7%)

1 (5.6%) 1 (5.6%) 16 (88.9%)

32(61.5%) 5 (9.6%) 10(19.2%) 5 (9.6%) 15 (28.8%) 11 (73.3%)b

14 (77.8%) 3 (16.7%) 1 (5.6%) 12(66.7%) 10 (83.3%)b

20 (38.5%) 8(15.4%) 8(15.4%) 16 (30.8%)

4 (2X2%) 6 (33.3%) 3(16.7%) 5 (27.8%)

•Value represents mean education level. ''Percentages based upon number of respondents with children.

18 women had children in comparison to only 28.8% of the men. Over three-quarters (83.3%) of the women had their children living with them. Over two-thirds (68.6%) of the sample reported that they had AIDS, with 62.9% reporting that they have been living with HIV/AIDS for 5 years or more. Of the 70 respondents, 59 (84.3%) said that they had received some form of patient education. Sources of patient education included HIV education seminars, group counseling/support groups, county AIDS Health Projects, Early Intervention Programs and AIDS service organizations. Male respondents were generally satisfied (95.5%) with

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priorities for patient education. The closed-ended questions provided quantitative data on the sample demographics, perceived need for a patient education program and respondents' perceived self-help priorities. For the qualitative responses, participants were asked to list their thoughts and concerns about living with HIV/AIDS. Before the questionnaires were sent to the collaborating agencies, the original was pilot-tested on 10 HIV-infected individuals. Quantitative data were entered and analyzed using the statistical program EPI-INFO. Male and female group comparisons were performed using a contingency table to determine the percentages of the respondents' ratings for each of the questions regarding the self-help topics. The qualitative responses were read by the first author and one HTV seropositive volunteer for the purpose of identifying salient themes.


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Medication (29.0%) was also a frequently expressed positive thought. Other positive thoughts had more to do with their emotions. Over half of the respondents reported that they were happy (25.8%) and hopeful (25.8%). Fewer (22.6%) respondents listed their family and/or friends in this category. Of the negative thoughts, over two-thirds of the 62 respondents listed death (67.7%). A majority of the negative thoughts had to with the respondents' emotions. For example, sickness (45.2%), feelings of rejection (38.7%), fear (37.1%), sadness (37.1%), loneliness (22.6%) and pain/suffering (22.6%), were some of the negative thoughts reported by the respondents. Interestingly, pain/ suffering was only expressed by the male respondents in this category. Respondents were also asked to express their concerns about living with HIV/AIDS. Indeed, many of the thoughts that the respondents expressed were mentioned as a concern. For example, of the positive thoughts, medications (37.1%) and family/friends (25.8%) were also mentioned as concerns. Of the negative thoughts, sickness (77.4%), death (32.2%) and pain/suffering (25.8%) were reiterated. The category financial difficulties (41.9%) was a concern that was not introduced in the previous question. Interestingly, this concern was reported by the male respondents only.

Discussion Currently, the number of AIDS cases reported in the San Francisco Bay Area exceeds those of other areas in California, with the exception of Los Angeles County. The cumulative total of AIDS cases reported through June 1994 in California is 74 088 (California Department of Health Services, 1994). Of this total, 37.2% of the cases exist in the Bay Area. Similarly, it is estimated that 37.1% of the number of HIV infection cases in California are present in the Bay Area. Therefore, it is not surprising that there is a plethora of organizations in the Bay Area that respond to the demand for HIV/AIDS-related services.


the patient education services available in their communities. However, 20.0% of the female respondents were not satisfied with these services. Overall, 69 of the 70 respondents felt there was a need for a comprehensive patient education program for people living with HIV/AIDS. Selfhelp priorities that needed to be covered in the patient education classes were rated from 'very important' (5) to 'not important' (1). A mean was calculated for each of the 20 self-help topics. The absolute values of the means were different for the self-help priorities between male and female respondents, especially in the higher ratings. Among the men, stress management was considered the highest priority {M = 4.7), followed by support groups (M = 4.6). The female respondents gave generally higher ratings to each of the selfhelp priorities. Each of the 18 women gave support groups the highest priority rating (M = 5.0). Childcare services (M = 5.0) were also rated the highest by the sample of women. Even though some of the men in the sample had children, they did not rate childcare services (M = 4.3) as highly as did the women. The second highest priority for women was stress management (M = 4.9). The following is a list of some of the other selfhelp topics that were given a high rating (M > 4.0) by both male and female respondents: HIV/ AIDS-related seminars, medication/treatment information, communication with the doctor, nutritional information, problem-solving, vitamin therapy, exercise, alcohol or drug use information and health benefit planning. Other self-help topics, such as how to use medical services, alternative therapies and information on different types of health insurance, were given lower ratings. The respondents were asked to list their thoughts and concerns about HTV/AIDS. Of the 70 respondents, 44 men (62.9%) and 18 women (25.7%) answered these questions. Overall, 27 words were identified that represent the 62 respondents' thoughts about HTV/AIDS. These thoughts were dichotomized by the researchers as either positive or negative thoughts. Of the positive thoughts, over two-thirds of the respondents identified a healthy lifestyle change (67.7%) they had made.


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Of the 100 agencies we contacted, 11 agreed to because there are simply not enough services participate in the study. The target population specific to the needs of HIV-infected women, consisted of only those individuals who belonged especially in low to moderate incidence areas to the participating agencies. If we are to assume (Lenker et al., 1993). In this study, only two AIDS that all 200 questionnaires sent to the participating service organizations for women in San Francisco agencies were distributed to interested clients, the were willing to collaborate. Outside of San Franciresponse rate would be 35.0% since 70 individuals sco, it was difficult to even find agencies that participated in the study. However, because diis exclusively catered to the service needs for women methodological problem was not identified, and with HIV/AIDS. Thirdly, national statistics indicate therefore, not controlled for during the data collecthat the majority of women with HTV/AIDS are tion period, the exact response rate could be higher, also poor and from ethnic minorities (Gayle et al., particularly if not all 200 questionnaires were given 1990; Capell et al., 1992). In the Bay Area, 61.5% to potential participants. of the reported adult female AIDS cases are women In general, low response rates are common in ' of color (Office of AIDS, HIV/AIDS Epidemiology Branch, personal communication). They are especistudies using self-administered, written questionally disenfranchised because there are too few naires (Oyster et al., 1987). For this reason, a health and reproductive resources for them that are 50% response rate was anticipated for this study. sensitive to cultural and language barriers, which However, as the study progressed, the researcher might be the reason why 20.0% of the female learned of additional reasons for the lack of partirespondents were dissatisfied with the HIV/AIDS cipation by potential respondents. The reasons services in their communities. In this study, 54.0% include the lack of any financial incentive to represented women of color in the target population participate in the study, the lack of interest in in comparison to 50.0% of the women in the the study's focus, the study's potential to elicit sample. The best way to recruit more women into unnecessary pain and the lack of time to complete this study may have been some form of peer one more survey in an endless series of demands outreach in their communities. However, because that individuals with HIV/AIDS have to deal with of concern for respondent confidentiality, it was on a daily basis. not appropriate to approach HIV-infected women The response rate was even lower for women. in this manner. Despite the efforts made to recruit women, particularly from the agencies that served women only, There were inherent problems with the data only 18 women participated in the study. Several collection method that could be attributed to the explanations support this finding. In the Bay Area, seemingly low response rate. The primary problem only 5.2% of the reported AIDS cases are women being that direct contact with the majority of the as of February 1995, even though the incidence of clients was denied. Secondly, there were unanticipHIV infection and AIDS is steadily increasing in ated difficulties in working with the contact people women due to heterosexual contact with a high-risk at the collaborating agencies since some of them partner (Office of AIDS, HIV/AIDS Epidemiology were unreliable in remembering to give their clients Branch, personal communication). In comparison, the questionnaires. Attempts were made to remind only 23.0% of the target population were women the contact people of their responsibility to the in this study, which includes both AIDS and nonstudy. However, it is difficult to assess whether AIDS cases. Secondly, a disproportionate number their compliance increased as a result of the periof women do not even have access to HIV/AIDSodic follow-up telephone calls during the data related services in their communities (Gayle et al., collection process. 1990; Kelly and Holman, 1993). For women who The 70 study respondents appeared to be relado access HIV/AIDS-related services, the attendtively well-educated about their condition and ance is low at many AIDS service organizations already utilizing patient education services. For


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help topics by the respondents. These findings were surprising as anecdotal evidence strongly indicated that alternative therapies have helped HIV-infected individuals manage pain and discomfort. It is possible that alternative therapies have not been as well recognized by HIV-infected people as palliative treatments. Furthermore, Western therapies are almost exclusively promoted by the AIDS health care industry. As a result, AZT and other clinical drugs are the most common and familiar treatments for most people living with HIV/AIDS (Sanders, 1989). One of the key findings related to self-help was that childcare services were rated as most important by all of the female respondents. This is not surprising since the majority of women in this study had children living with them. The implications of this finding become extremely important in the context of the lack of affordable or free childcare services for women with HIV/AIDS. These services are essential so that women can seek medical care and attend social and health-related programs. Salient themes were identified from the respondents' thoughts and concerns about living with HIV/ AIDS. Most respondents mentioned death as both a thought and concern. This theme can be interpreted in various ways. Death could mean their own impending mortality. Death could also mean the gradual loss of acquaintances, friends and lovers. Another theme centered on fears about getting sick or dealing with current illnesses. Nearly half • of the respondents expressed these concerns. Fear of getting sick or the numerous AIDS-related illnesses themselves may cause severe pain. Indeed, nearly one-third of the male respondents listed concerns regarding pain that affected their ability to perform certain activities, including gardening, dancing and having sex. Interestingly, none of the female respondents expressed any particular concerns regarding pain. One factor might explain this finding. HIV-infected women often have different issues, such as caregiving responsibilities for children, than their single male counterparts. These issues not only affect the


this reason, we cannot extrapolate from this sample the needs of people who are more disenfranchised and, therefore, have less access to all HIV/AIDSrelated services, including patient education. Further work on the needs of the disenfranchised is necessary. Clearly any efforts we do make will have to start by addressing the issues of those most likely to pursue educational services, such as this sample population. Many of the respondents had been exposed to different types of patient education and were relatively satisfied with the existing services available in their communities. However, despite the range of current services offered to people living with HTV/AIDS, almost all of the respondents felt a need for more comprehensive patient education programs. The two self-help topics that the respondents rated most important were stress management and support groups. Stress management will play a significant role in self-help for HIVinfected individuals. It has certainly done so in the maintenance of other chronic diseases (Corbin and Strauss, 1991). In fact, one study on cognitive therapy suggested that psychological variables, including stress management, maybe important in the proper functioning of the immune system (Antoni et al., 1990). Teaching stress management techniques, such as relaxation or meditation, in a patient education class could enhance the physical and mental health of people living with HIV/AIDS. Attending support groups was a frequently stated lifestyle change the respondents had made subsequent to their diagnosis. This is not surprising since 82.9% of the respondents attended support groups at the collaborating agencies. This is consistent with previous research, which found support groups to be the most popular self-help service for people living with HIV/AIDS (Gorman and Mallon, 1989; Dilley, 1990). A formal evaluation of psychosocial support groups has shown that they are able to help individuals cope with living with HTV/AIDS through discussion and problem solving (Ribble, 1989; Bendell, 1990). Alternative therapies (e.g. herbal remedies and acupuncture) were rated as the least important self-


Acknowledgements We would like to thank our collaborators: Andy Rose and Micky Duxbury with Tri-City Health Center, Marty Grimes with Aris Project; Joe DeMilia with Kaiser Permanente; Ben Lucky with ESO; Barbara Garcia with Planned Parenthood Care Clinic; Michelle Carstens with WEL; Jerry Martinez and Sue Lapp with Santa Cruz Careteam; Bonnie Jacobsen with The Center, Patrick Ballangee and Mark Tanaka with Most Holy Redeemer; Sharon Pair-Taylor with Center for Attitudinal Healing; and Rebecca Dennison and Glenda with WORLD. We would also like to thank Alan Gifford, Virgil Parsons and Flora Krasnovsky for their technical support in preparing the manuscript.

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women's well-being, but the lives of those around them, especially if young children are involved. As a result, women with HIV/AIDS cannot always focus solely on their own illness and health status (Kelly and Holman, 1993). Change in lifestyle was another important theme identified by both male and female respondents. Behavioral changes included eating healthier food, practicing safer sex, abstaining from recreational drugs and attending support groups. This study has significance to the broad fields of health and patient education, and to the more specific area of AIDS education and treatment This needs assessment was a timely investment as more people with HIV/AIDS are living longer with their condition. The questionnaire allowed respondents to voice their thoughts and concerns about living with HIV/AIDS, as well as their opinions regarding the specifications of a patient education program. The results from the study will assist collaborating HIV/AIDS service agencies in improving their own patient education programs. The information from this study will also be useful in the preliminary design and implementation of future patient education programs for people living with HIV/AIDS.


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