4
. COLLECTING PRIMARY DATA
A. Overview
. . . . Needs assessments typically require not only use existing (secondary source) information such as epidemiologic data but also new (primary source) information. Frequently used primary data collection methods for needs assessment include surveys, focus groups, key person interviews, and community forums. Surveys typically provide quantitative data, while the other methods are most often used to obtain qualitative information.The data collection methods used in needs assessment depend on many factors—including resources. Many Title III and Title IV grantees as well as rural Title II States have limited funds for needs assessment. This chapter suggests some primary data collection methods that are affordable and practical for such programs. In addition, collaboration with other titles or regions can help to expand or make more effective use of available resources.
B. Common Data Collection Methods
. . . . Among the most commonly used methods of primary source data collection for needs assessment are the following:◗ Su rvey s :a method in which a sample of individuals is selected from a target population to respond to a structured set questions. Questions are usually short answer or closed-ended (i.e., provide a limited set of responses that a respondent can select from). Surveys may be conducted in person (an interv i ewer sits down with a respondent), over the telephone, or self-administered (the respondent completes the survey alone). The information (mostly quantitative data) is used to generate summary statistics about respondents and, where appropriate, sampling is used to generalize findings to the target population. ◗ Focus groups:a method of collecting qualitative data involving a carefully planned
small-group discussion of specific questions or topics led by an experienced moderator. ◗ Key person or key informant interviews:a qualitative method involving in-depth
interviews with a small number of individuals carefully selected because of their personal experiences and/or knowledge related to the topic of interest. A discussion guide is used to ensure that major topics and issues are addressed.
◗ Community forums:a method of collecting qualitative information from community members using a small group, similar to a focus group but usually larger and less formal and with little or no pre - s c reening of participants. A trained moderator facilitates discussion on issues and topics identified in a topic guide, and observers are present to take notes and/or tape-record the session.
Information is provided below on how to design and use each of the these primary data collection methods in HIV/AIDS needs assessment.
C. Surveys
. . . . Surveys in HIV/AIDS needs assessment are most often used to obtain information from PLWH and from providers. (For more information about provider surveys, see Chapter 6, “Conducting an Assessment of Provider Capacity and Capability.”) PLWH surveys can gather information about s e rvice needs and gaps from the perspective of intended beneficiaries, as well as satisfaction with services they are currently receiving. Su rveys also typically ask for sociodemographic informa-tion and stage of disease; this makes it possible to analyze service needs for specific populainforma-tions (e.g., African Americans, women, homeless people, injection drug users).Programs that are hospital- or clinic-based, such as many Title III and Title IV programs, may find it practical to use surveys not only with PLWH enrolled in their programs but also with other HIV-positive individuals who obtain services within the health care facility. In this respect, the focus will be on the broadest array of PLWH, not just those receiving services through CARE Act funds.
DATA RELIABILITY AND VALIDITY
When developing primary data collection methods, consider reliability and validity: • Reliability refers to the consistency of a measure or question in obtaining very similar or identical results. If you asked a set of questions to the same people repeatedly, you should be able to get the same results.
• Validity refers to the extent to which a question or instrument actually measures what it is supposed to measure. For example, if you want to find out what PLWH consider to be their own most important service needs, but your question asks them to identify the most important service needs of “PLWH in your community,” the question may not generate valid information.
Determining Survey Purpose and Scope
In planning a PLWH survey, begin by considering the following questions and issues:
◗ What resources and time period are available for conducting the survey?Costs are affected by survey scope, length, number and mix of people to be surveyed, and data collection methods. Consider what re s o u rces are available—funds for consultants, grantee staff or planning body members who can assist with data collection. Also consider the time available for conducting the survey—gathering data and analyzing and reporting results. This will help you decide on the scope of your survey effort. (For more information on low-cost sources of human resources see Section V, Chapter 1, “Obtaining ‘Human Resources’ for Needs Assessment.”)
◗ Who will conduct the survey—and what will be the role of the CARE Act grantee or planning body?Consultants or university researchers are often hired to do the actual data collection and analysis. (For more information about how to arrange for needed “human resources,” see Section V, Chapter 1, “Obtaining ‘Human Resources’ for Needs Assessment.”) Sometimes the main roles of the CARE Act grantee or planning body are oversight and review. Other roles they can play include planning and design, identifying key questions to be answered, and ensuring that the data collection methods target and effectively reach all necessary PLWH groups.
◗ What information is to be obtained through the survey?Look at your overall needs assessment plan and determine the types of populations of interest, the information to be obtained, and the specific questions to be answe red through the surve y. This helps you to determine the scope, length, and specific content of the surve y. For example, what differe n t PLWH populations do you want to learn about from the survey (e.g., race/ethnicity, gender, co-morbidities, risk factors, place of residence)?
PLWH SURVEYS: CLIENT SATISFACTION VERSUS NEEDS ASSESSMENT
A client satisfaction survey obtains information about PLWH satisfaction with services they are currently receiving. While a PLWH needs assessment survey may also collect such data, its primary purpose is to determine met and unmet service needs. It seeks information from PLWH who are not currently receiving services as well as those who are in care.
◗ Do you want to be able to generalize survey findings to the entire population of the group you are surveying?With a PLWH survey, for example, do you want to be able to assume that the findings from the survey reflect the same findings you would get if you surveyed the entire population of PLWH? If so, you will need to use some form of “probability” or random sample, most likely a stratified random sample. You may also need a fairly large sample. Even if you decide that random sampling is not feasible, you will still want to ensure that the survey “respondents” (those who complete the sur vey) reflect the diversity of the HIV/AIDS populations in your service area, so that you can obtain information about the perspectives of various populations.
Sampling
Sampling is an important consideration in survey design. A sample is a group selected from a total population with the expectation that studying the group will provide important information about the total population. If possible, you want to be able to generalizefrom your sample to the total population in your service area—to assume that the conclusions you reach about the sample are also true of the total population. In order to do this, you will need to use a pro b a b i l i t y or random sample, of which there are several kinds:
◗ To be able to generalize only to the entire population, you can use a simple random sample. This kind of sample is also called an equal probability sample, because every person in the population has an equal chance of being included in the sample.
◗ To be able to generalize findings to specific populations such as Latinos, women, or re s i d e n t s of a particular city or county, you need either a large simple random sample or a s t r a t i f i e d random sample. You divide the population into subgroups (strata) and then draw random samples from each of the subgroups. You may want to oversample particular populations to be sure that you include in the survey enough individuals from those populations. ◗ When random sampling does not seem feasible, but you want to ensure that the survey
includes people from certain populations or with specific characteristics, you may want to use a purposive samplethat calls for interviewing specified numbers of people with these characteristics.
Survey Design
An appropriate survey instrument or questionnairerequires a written set of questions that are used consistently. The survey can include two different types of questions:
◗ Closed-ended, “f i xed choice” questions.These questions can be pre-coded, making the questionnaire quick to complete and tabulate. (Pre-coding usually involves sequentially numbering each response category —e . g., “ye s” = 1, “n o” = 2, no response = 0—so that the data can quickly be entered into a computer for analysis.) Closed-ended questions can be of many types, e.g., yes/no, responses based on a numerical scale such as a 4-point scale f rom 0 = not at all to 3 = always, or multiple responses where one or more categories may be checked. Each question has a set of pre-determined choices, and the person re s p o n ding
STEPS IN DOING SURVEYS
1. Determine the survey purpose and scope, including populations to be surveyed, sample size and type, method to be used for administering the survey, and tabulation and analysis methods. Agree on the type of instrument to be developed—length, topics to be covered, and mix of closed-ended and open-ended questions. Determine if sampling will be used and how data will be gathered (in person, telephone, or mail-in/ drop-off).
2. Develop the survey instrument; arrange for translation if necessary. 3. Identify and train those who will administer the survey. If the survey will be
self-administered, arrange procedures for dissemination and collection. If telephone or personal interviews will be conducted, select and train interviewers. Look for interviewers who are knowledgeable about the community and HIV/AIDS, and reflect the diversity of the population to be interviewed.
4. Pre-test the survey, using the data collection methods planned for administering the full-scale data collection effort.
5. Revise the survey and/or the methods of administration as needed. 6. Collect the data, with careful monitoring and quality control.
7. Review survey forms for completeness, and do any required coding of qualitative data.
8. Tabulate and analyze results.
9. Prepare a report and presentations summarizing survey results and comparing them to other needs assessment findings.
simply picks the choice that is closest to his/her desired answer. Such questions are some-times called “forced-choice” questions. Surveys that use mostly closed-ended questions tend to obtain higher response rates because they take less time to complete. However, respondents who do not like any of the fixed choices may not answer the question, or may be forced to choose a response which does not accurately reflect their actual situation or belief. For this reason, such questions sometimes include an “other (please specify)” response category, so respondents can write in their own answers.
◗ Open-ended questions. These questions have no stated response options, so re s p o n d e n t s provide answers in their own words. These responses can be analyzed individually and used to provide a narrative description. However, particularly if the sample is large, they must be “coded” (grouped into categories based on content, with each category given a number) before they can be analyzed by computer. This can be time-consuming and difficult. Typically, the needs assessment team reads through the responses to a particular question and develops a set of coded categories that cover the range of responses received. Then they read each response and code it according to the agreed-upon categories. Care f u l coding is needed to accurately re p o rt what the respondent wanted to communicate, ensure sensitivity to small but important response differences, and recognize cultural differences. Surveys involving large samples usually include mostly closed-ended questions because they are easier to administer and to tabulate. However, open-ended questions can provide valuable insights. If you are not sure what response options to provide for certain closed-ended questions, you may want to include these questions as open-ended questions in your survey pre-test. In this way you can identify response options to use for making these questions closed-ended in the final survey.
To help ensure successful questionnaire design:
◗ Be sure that survey questionnaires are constructed by individuals knowledgeable about issues of reliability and validity, so that the questions consistently measure what they were intended to measure (see box earlier in this chapter).
◗ Involve individuals from various populations important to the needs assessment in questionnaire preparation to ensure that questions are relevant and appropriate for each of these populations.
◗ Pre-test your survey methods and instrument on a small group of individuals similar to those who will be in the sample, including people from the various populations, to be sure that the survey is generating consistent and valid data from all these populations. Use the same method of collecting the data that you plan to use for the full-scale surve y — p e rsonal
interviews, telephone interviews, or self-administered surveys. Pre-testing is especially important for self-administered questionnaires. Aim for testing the survey with three people from each major target population. After the pre-test, hold a follow-up discussion with selected members of this pilot group to find out what questions worked for them, what questions or topics were confusing, and whether the reading level was appropriate. Be sure to allow time in your schedule for revising the survey instrument following the pre-test.
Collecting Survey Data
There are several different ways to conduct a survey. The most appropriate method will depend upon available resources, the content and complexity of the survey, and the types of populations being surveyed. Advantages and disadvantages of these different data collection methods are summarized in the chart below.
Data Collection
Method Advantages Disadvantages
In-Person Interview:
the preferred method of conducting PLWH needs assessment surveys. A trained interviewer sits down with the respondent and asks the survey questions at his/her home, at a service provider’s facility, or in some other community location.
• Can be used for complex questions and questions unlikely to be misunderstood • Surveys likely to be complete • Can be used for low-literacy
or l i m i t e d - E n g l i s h - p r o f i c i e n t P LW H
• Personal contact makes it possible to establish rapport • Some information can be
collected through observation • Can obtain a high response
rate with appropriate effort
• Some PLWH may be concerned about confidentiality and anonymity • More costly and time-consuming than
other methods
• Extra steps may be needed to ensure that interview locations are confiden-tial and safe
Data Collection
Method Advantages Disadvantages
Telephone Interview:
provides direct contact between the interviewer and respondent at slightly lower cost than in-person interviews. Usually, the respondent is contacted and interviewed in his/her home.
• Can be used for complex questions and questions unlikely to be misunderstood • Surveys likely to be complete • Can be used for low-literacy
PLWH
• Can be used for limited-English-proficient PLWH provided survey is translated and interviewers are bilingual • Personal contact makes it
possible to establish rapport • Can obtain a high response
rate with appropriate effort
• Some PLWH don’t have telephones, especially those in severe need categories
• Phone numbers may be hard to find for PLWH not in care
• May create concerns about confi-dentiality and anonymity • Relatively costly
Self-Administered Mail Questionnaire Mailed to the Homes of
Respondents:
respondents are asked to complete and mail back the questionnaire, usually with a stamped, self-addressed envelope provided.
• Mail-back protects anonymity • Relatively low cost
• Response rate often low, and severe need groups may be especially unlikely to respond
• Surveys may be incomplete and questions may be misunderstood • Not appropriate for low-literacy PLW H ;
survey with very simple language can be used, but response rates are likely to be low
• Can be used for limited-English-pro-ficient PLWH only if such individuals are identified ahead and sent surveys in the appropriate language
• May cause concerns about confiden-tiality since addresses are provided to those conducting the survey
To help ensure successful data collection:
◗ Be sure that the individuals involved in interviews or other data collection activities a re carefully selected, trained, and monitore dto ensure appropriate diversity and skills, including procedures for protecting the confidentiality of respondents.
◗ Make appropriate arrangements to obtain information from individuals who may be limited English-proficient.This usually means both a written translation of the survey and the use of bilingual interviewers. To ensure an accurate and understandable written translation of your survey, it is best that the translator be genuinely “bilingual, bicultural, and biliterate”—able to write as well as read and speak both languages fluently—and have worked in the HIV/AIDS field. An individual without training in translation tends to translate literally, focusing on words instead of ideas and concepts. If you have no access to a trained translator, look for a genuinely bilingual person with HIV/AIDS experience. Test your survey translation by asking a bilingual PLWH to complete the survey in both languages and tell you if any of the questions seem to have a different meaning in the two languages. Be sure that interviewers are bilingual and also familiar with the survey in both languages.
Self-Administered Survey at Service Provider or Other Community Facility:
respondents are asked to complete the survey and either leave it in a sealed envelope or mail it to a central location.
• Relatively low cost • If surveys are mailed back
to a central facility, protects anonymity
• Using community facilities and non-CARE Act funded providers can provide a means of includ-i n g PLWH who are not includ-in care
• May create concerns about confidentiality
• Responses may not be frank and honest when surveyed at provider facility, especially if questions are asked about satisfaction with current services • Surveys may be incomplete and
questions may be misunderstood • Response rate often low
• Not appropriate for low-literacy PLW H ; survey with very simple language can be used, but response rates are likely to be low
• Appropriate for limited English-proficient PLWH only if surveys in the appropriate language are readily available
Data Collection
◗ Be sure that the coding (i.e., grouping of results) of qualitative information from open-ended questions is done and overseen by individuals sensitive to cultural and other population differences, such as members of such populations and people with extensive experience in multicultural service settings.
Including PLWH In and Out of Care
Both surveys and focus groups of PLWH should include individuals currently receiving HIV/AIDS primary medical care and support services through CARE Act-funded or other community service providers (clients), as well as individuals not receiving such services (“not in care”). Programs that have sought out those not in care have found that such individuals tend to fit into two categories:
◗ individuals with relatively high educational and income levels who indicate that they are able to do their own case management, obtain medical care through a private physician, and pay for other needed services; and
◗ individuals who are more likely to be low-income, under- or uninsured (particularly people of color and women), and individuals with co-morbidities (e.g., homeless persons, injection drug users, and individuals with seve re mental illness); these are also populations among whom HIV and AIDS rates are increasing.
The service needs of those in care and those not in care may be quite different. For example, one community found that the top priority unmet needs for clients were alternative therapy and housing, while the key needs for those not in care were primary medical care and case management. A Title IV program discovered that pregnant women and women with children who were receiving care but not family-centered services identified a variety of service barriers and needs for enabling services such as transportation and child care.
Individuals not in care are often more difficult to reach than current clients, who can typically be located through primary care facilities, case managers, or other service providers. PLWH not in care need to be sought out at a variety of locations, using a mix of street, service provider, and media outreach techniques. Some of the same methods used to do outreach designed to get individuals into care can be used to survey such PLWH. For example, Title III and Title IV p rograms can do surveys as well as outreach at counseling and testing sites, and Title IV pro g r a m s can seek out pregnant women who come to a community or hospital clinic for pre-natal care.
Some planning bodies, grantees, and providers have been very successful in locating PLWH not in care by working with a wide range of service providers that may not be funded through the CARE Act but are likely to be providing services to PLWH. They use resource inventories compiled through past needs assessments to identify service providers in their communities and then contact them for help in identifying HIV-positive individuals to interview. Often, provider i n ventories identify key target populations, so it is possible to contact providers that are part i c ularly likely to serve individuals with particular characteristics, such as racial/ethnic minorities, youth, women, pregnant women, the homeless, injection drug users, etc. Service providers may be asked to help in several ways, such as:
◗ Identify HIV-positive individuals among their clients and ask them whether they are willing to be interviewed, or provide them surveys to be self-administered and mailed to a central location.
◗ Post flyers that offer HIV- p o s i t i ve individuals a food voucher in return for survey or focus group participation, promise confidentiality, and ask them to call a telephone number established for the needs assessment. Those calling can be screened and interviewed in person or by telephone, sent a survey to be completed and mailed back, or asked to participate in a focus group.
The following types of service providers may be particularly appropriate contacts for locating PLWH not in care:
◗ public and private clinics, such as health department clinics, neighborhood health centers, free clinics, maternal and child health programs, and migrant clinics;
◗ substance abuse programs; ◗ mental health programs;
◗ runaway shelters and other programs serving older youth such as gang intervention pro g r a m s ; ◗ homeless shelters;
◗ w o m e n’s programs such as battered women’s shelters and rape crisis centers, and pro g r a m s serving sex workers;
◗ partner notification services;
◗ Planned Parenthood and other family planning programs; ◗ HIV counseling and testing centers; and
◗ ex-prisoner housing facilities and service providers.
In doing street outreach to locate PLWH for surveys, coordination and cooperation betwe e n CARE Act and HIV prevention programs may be especially helpful. Prevention and early inter-vention program staff are especially likely to be aware of neighborhoods and community locations where HIV-positive individuals can be found, and sur veys can include information useful to all titles and to both prevention and care.
Any effort to identify PLWH not in care requires one of the following:
◗ Preliminary screening to identify PLWH with specific characteristics either for purposive survey sampling (e.g., interviewing specific numbers of individuals with particular charac-teristics) or for focus groups. This typically requires asking a small number of questions of identified PLWH to determine whether they are receiving regular primary care, case management, and/or supportive services, and if so, from what sources (e.g., are they receiving care through the CARE Act continuum of care), and to obtain basic demographic information as needed to determine whether they belong to specific targeted populations (e.g., based on race/ethnicity, co-morbidity).
◗ Questions on the needs assessment survey that identify providers by name so it is possible to determine whether the respondent is receiving CARE Act services, other regular HIV/AIDS care, or no care.
Media can provide valuable publicity to help identify PLWH not in care, including public s e rvice announcements (PSAs) targeting PLWH and giving them a voice-mail number to call, with PSAs in several languages and special telephone numbers for Spanish or other limited-English speakers as needed. Community newspapers, newsletters, and/or radio stations can help in reaching specific target populations.
Once PLWH not in care have been located, their participation in surveys and focus groups can be encouraged by providing incentives. Care is needed to protect confidentiality, and data collection methods that protect anonymity are also necessary.
D. Focus Groups
. . . . A focus group is a carefully planned discussion among a small group of people (typically 8-12) with certain similar characteristics who interact in a group setting facilitated by a trained mod-erator. The moderator uses a pre-determined outline to guide the discussion and assure that desired topics and questions are addressed. S/he should be knowledgeable but neutral and not directly involved with the service or activity being assessed. Focus group participants should consist of individuals from a clearly defined population who have certain common characteristics (e.g., women with HIV disease, Latino gay and bisexual men, or male PLWH with a history of substance abuse). The more your focus group can relate to the topic or problem being targeted, the more valuable the information gained.A technique developed for marketing research—to test new products, packaging, advertising slogans and approaches—focus groups provide results that are less precise than a large-scale surve y but are also far less expensive and complicated to conduct. Results often provide valuable insights, although they cannot be assumed to represent the views of a broader population.
Focus groups are a commonly used source of qualitative information about the met and unmet needs of PLWH, client satisfaction with current services, and service barriers and access for particular population groups. Many grantees and planning bodies use a series of focus gro u p s annually to update needs assessments and obtain in-depth input from several specific PLWH populations. Focus groups can be used with underserved populations. Working with service p roviders or advocates that assist or re p resent a particular population, you can identify individuals, schedule a focus group in a convenient setting where they feel comfortable, and obtain valuable insights from individuals who may be hard to reach through other methods.
STEPS FOR ORGANIZING A FOCUS GROUP
1. Agree on parameters, including the purpose of the focus group, how many focus groups will be conducted, and what will be the screening characteristics for each focus group (e.g., race/ethnicity, gender, risk behavior, co-morbidity). 2. Develop a strategy for recruiting and screening individuals who are representative of the desired target populations for inclusion in a focus group; decide what incentives to provide.
3. Recruit a trained moderator who is familiar with focus groups, knowledgeable about HIV/AIDS, and appropriate for specific focus group participants, and arrange for at least one observer who will take notes on the discussion and reactions dur-ing the session; tape record the session if feasible.
4. Develop a “script” for the focus group—topics and questions that you want answered by the focus group and information you will provide to the group. If you are planning to conduct multiple focus groups for different populations, include a common set of questions to be asked of all groups so you can compare the responses across groups, but include additional questions if information is needed about a specific focus group population.
5 . If desired, develop a brief survey to be used individually with focus group members just before the focus group, to obtain demographic information and other data as desired; arrange to have interviewers or to make the survey self-administered. 6. Handle logistics: agree on a time and location for each focus group that is “safe”
and convenient for its specific participants; arrange for transportation assistance if needed, and arrange for refreshments.
7. Recruit and screen focus group participants; be sure screening includes becoming aware of limited literacy among participants.
8. Conduct the focus group, and provide agreed-upon incentives.
9. Debrief and determine any needed changes before the next focus group. 10. Prepare a focus group report.
A successful focus group usually has the following characteristics:
◗ The scope of the focus group is clearly defined and manageable—it covers a limited number of topics so there is time for discussion involving all the participants.
◗ The moderator is experienced at facilitating group discussions and is independent of CARE Act services so that s/he is knowledgeable but does not bias the discussion with his/her own views.If a series of focus groups involves diverse populations, it is helpful for moderators to reflect key participant characteristics. For example, a Latino focus group might be facilitated by a bilingual Latino. While a “m a t c h” between moderator and group is not essential, it can help to establish a “safe” setting in which participants feel comfortable sharing their views and experiences.
◗ A carefully developed “s c r i p t” or discussion outline provides a blueprint for the focus group,clearly stating the planned flow of the focus group and the major questions or issues to be covered. The outline should be used flexibly but all the key points covered during the focus group.
◗ Planning body staff or members not moderating may observe, but do not part i c i p a t e in the discussion except at the initiative of the moderator.The number of obser vers is kept to a minimum. If the moderator is not an HIV expert, it is very helpful to have someone knowledgeable about HIV/AIDS services and the CARE Act observing. Several breaks may be built into the session so that the moderator and observers can confer and observers can clarify issues as needed.
◗ The focus group environment is we l l - s e l e c t e d—the site is accessible, comfortable, quiet, and allows for good-quality audio taping (more sophisticated methods may also be used such as one-way mirrors, but usually are not necessary).
◗ Audio-visual equipment works properly.If audio-visual equipment is required or the session is being tape-recorded, all equipment and procedures should be tested before the session to be sure they work properly.
◗ The group composition is appropriate:the group is representative of the desired popu-lation; all members have been appropriately screened to be sure they possess the desired characteristics; and the group is as homogeneous as possible in terms of key variables (e.g., age, language preference, risk group). Where several different populations have been identified as targets for the focus groups, separate focus groups are used to determine the met and unmet needs of each major group.
◗ The group is of manageable size—large enough to provide for a variety of views and adequate interaction, but not so large that some members do not participate in the discussion. Usually focus groups should include no fewer than eight or more than 12 people. This means recruiting at least 12-15 people, to allow for “no-shows.”
◗ The session is carefully scheduled and managed.Usual stages include an introduction to clarify the purpose of the session; a warm-up to introduce group members (usually first names only) and set up a positive group atmosphere; general topic presentation and discussion to obtain broad opinions about HIV/AIDS service needs and gaps from the p a rticipants; presentation of specific questions and specific discussion, with both individual opinions and group discussion; a closing that assures that all needed aspects of the topic have been discussed; and a thank you. If brief individual surveys are included, time is set aside to administer them and the moderator and other staff offer to interview people who would rather not complete the form themselves. This makes it possible for individuals with limited literacy to provide survey data without any embarrassment.
◗ The session is of an appropriate length,depending upon the topic and its complexity. Participants are likely to get tired after one and a half to two hours, though the time period can be extended slightly if refreshments are served and a break is provided. ◗ Focus group participants receive some incentive or compensation for their
partici-pation.Re f reshments or a light meal may be served, and participants are often paid a small a m o u n t in the form of cash or a food voucher ($15 to $20); an extra $5 might be added for an evening session. Transportation and child care are provided as needed.
◗ Discussion and debriefing among the moderator, note taker, and any observers follow each focus group, to refine the outline and procedures.
◗ Su m m a ry or compre h e n s i ve focus group re p o rts are pre p a re d ,in a format appro p r i a t e for the overall needs assessment. Comparisons are made among focus groups composed of different populations. The reports are prepared as soon as possible after focus groups are completed and are revie wed by the moderator and observers.
E. Key Informant Interviews
. . . . Key informant (or key person) interviews can be used to obtaining qualitative information from knowledgeable individuals about such matters as perceived HIV/AIDS service needs, gaps, and barriers for particular populations or in geographic areas. They may represent or be extremely k n owledgeable about specific types of services or particular PLWH populations. Sometimes, when it is difficult to directly interview individuals from particular populations, such as children with AIDS or PLWH with mental illness, key informants can provide useful information about thesegroups. A small number of knowledgeable individuals are selected for in-depth interviews using an interview guide or checklist that specifies major topics and issues to be covered.
Key person interviews are useful only when the individuals interviewed are in fact both knowledgeable and willing to provide detailed information. Although the interviews do not provide information that can be generalized to a larger population, they should provide a wide range of perspectives on the services or the issues being studied. Therefore, the individuals to be i n t e rv i ewed should be carefully selected to assure diverse points of view, experiences, and concerns. This may mean people knowledgeable about va rying populations and different services within the continuum of care, staff of providers as well as PLWH group leaders, individuals from different counties or cities within the service area, individuals who are themselves members of different populations, etc. The appropriate categories will depend on the focus of the needs assessment and the populations of particular interest.
Because the interview is typically a guided discussion without closed-ended questions, it requires an interviewer who is knowledgeable about HIV/AIDS services and trained to probe for information without presenting his/her views in a way which might bias the responses. The i n t e rv i ewer or an observer should take detailed notes of the responses to the questions and should also consider taping the session for back-up if feasible. After the session, the notes should be compiled into an interview report.
Like other qualitative data, the information about a service or population that is generated from key person interviews will need to be supplemented with other information gained from surveys, focus groups, or other methods. If key person interviews are conducted early in the needs assessment process, the results of the interviews can help the planning body or grantee identify and select issues to be covered in focus groups, assessments, and surveys, and frame the questions appropriately.
F. Community Forums
. . . . Another small-group method of collecting information is the community forum or community interview. A community forum is less formal than a focus group; a meeting is advertised but t h e re is limited pre - s c reening. It often includes a larger group of participants than a focus gro u p, but it is much more interactive than a formal event such as a public hearing. Where a focus group involves the actual target group, the community interview often involves a mixed group of individuals—all ages, genders, sexual orientations, and racial/ethnic backgrounds. It can also focus on a particular gro u p. For instance, a community forum may invo l ve clients of a part i c u l a r HIV/AIDS service program, residents of a particular housing project, or members of a part i c u l a r PLWH or gay men of color support group. It often includes both PLWH and other interested individuals; often, participants’ HIV status is not known.Id e a l l y, a community forum invo l ves between 15 and 30 individuals. Open discussion is ve ry difficult to manage if the group is larger than 30. Formal procedures are needed for recognizing individuals so they can speak. If the group is large, time limits for individual comments may be set, and discussion may be time-limited as well.
Similar to the focus gro u p, a community forum should be a we l l - s t ru c t u red discussion session. At least two facilitators should facilitate the discussion using a carefully developed interv i ew guide. The session should be planned and conducted with care, and its proceedings should be both taped and summarized in writing. A community forum’s results should be viewed as providing valuable insight but not information that can be projected to a broader population.
Community forums that are open meetings or occur in public places have important limita-tions. PLWH may not be willing to self-identify or provide frank opinions. CARE Act experience suggests that the service needs of people with HIV disease, especially women, minorities, and other severe need populations, are usually best obtained through methods that protect the confi-dentiality of information and the anonymity of respondents. Some grantees and planning councils are addressing this concern by conducting community forums within specific community-based organizations or community facilities and limiting participants to clients or members of these organizations. For example, a community forum might be conducted within a substance abuse treatment center, a homeless shelter, or a women’s clinic. A Title III grantee might conduct a forum at a clinic site. Individuals are not asked to disclose their status, but are asked to discuss their perceptions of PLWH service needs, gaps, and barriers. Sometimes, participants are given a number to call if they would like to participate in a PLWH survey so that PLWH can choose to provide more detailed, personal information in a confidential or anonymous setting.
Community forums can be used for assessing needs and priorities of PLWH and other community members, identifying service barriers, and obtaining feedback concerning the adequacy of the current continuum of care or of specific service components. By arranging community forums in specific locations, doing targeted outreach, and scheduling one or more forums in a language other than English, a planning body or grantee can obtain useful input from hard-to-reach populations such as the homeless, substance users, and limited-English-proficient PLWH.
Survey To obtain quantitative information about the met and unmet care needs and barriers to care for PLWH both in care and not in care
• Provides quantitative data • Can provide data of high reliability
and validity
• Can provide consistent information from a wide range of individuals, and results can be compared across groups
• If appropriate sampling is used, results can be generalized to the entire PLWH population or specific populations Focus Group To obtain in-depth, qualitative information including perceptions regarding met and unmet service needs, barriers, and access to care for specific PLWH populations
• Can provide in-depth under-standing of issues related to service needs and access for specific PLWH populations • Information from different focus
groups can be compared to clarify differences in needs and access by population
• Relatively low-cost and quick to implement
• Can identify factors and issues to consider in developing a survey questionnaire Key Informant Interview To obtain qualitative information about perceived met and unmet needs, barriers, and access for particular populations from indi-viduals with special knowledge and experi-ence regarding those populations
• A way of obtaining information about populations that may not easily be contacted directly (e.g., infants and children with HIV/AIDS, PLWH with severe mental health problems)
• Can identify factors and issues to consider in developing a survey questionnaire
• Low-cost
• A way of “checking” information from other sources with
knowledgeable individuals
• Large samples usually needed
• Often costly
• Difficult to design and implement without help from trained
researchers
• Requires careful plan-n i plan-n g , outreach aplan-nd screening, and effective f a c i l i t a t i o n
• Findings cannot be generalized • Preparing reports
is time-consuming and requires strong analytical skills
• Works best for relatively homogeneous groups; means many focus groups may be required • Indirect source of data—
not obtained directly from PLWH
• Findings cannot be generalized
• Data quality depends on choice of key persons
G. CHOOSING APPROPRIATE DATA COLLECTION METHODS
H. Analyzing Primary Data
. . . . Once you have collected information from all sources, the data need to be ord e red and analyze d . The methods of analysis used will depend partially on the questions to be answered and on the amount and types of data available. Two basic types of analysis—statistical and qualitative—will be necessary, and are discussed below.Quantitative Analysis
Quantitative data, primarily from surveys with PLWH and providers that use multiple-choice and other short-response or closed-ended questions, need to be aggregated and analyzed using statistical methods. Often, this work is done by the health department or by a consultant. At a minimum, statistical analysis requires:
◗ Reviewing the completed instruments to be sure they are complete.
◗ Coding open-ended or other any responses that were not pre-coded so they can be tabulated.
◗ Entering the data into a computer database or tabulating data by hand.
◗ Obtaining “f requency distributions” (the simplest form of statistical tabulations) that pre s e n t the number and percent of respondents giving each possible response to a question, both overall and by population categories (e . g ., different target populations, consumers ve r s u s p roviders); be sure you always specify the number of respondents in each population category.
CHOOSING APPROPRIATE DATA COLLECTION METHODS
Method When to Use Benefits Limitations
Community Forum
To obtain qualitative, often preliminary information about perceived met and unmet service needs and barriers and access to care in specific geographic locations or for specific PLWH populations
• Can provide perceptions of service needs among specific PLWH populations
• Low-cost
• Can help in identifying PLWH to be surveyed
• Problems of confiden-tiality and anonymity mean PLWH may be afraid to self-disclose or provide frank and honest information • Quality of information
extremely varied • Diverse or large group
can be difficult to facil -itate
• Findings cannot be generalized
◗ Deciding whether to report numbers or percentages in your analyses. Where your sample for a particular population group is small and is a small proportion of the population being represented—a rule of thumb is where the number of respondents is less than 20 or the number of responses in an individual cell (response category) is less than five— report numbers rather than percentages. This avoids misleading those who use the data, who may assume that the percentages represent a large number of respondents.
STATISTICAL SIGNIFICANCE
Significance means that a research finding is statistically meaningful. A research finding is considered to be statistically significantif there is only a small proba-bility that the observed result could have occurred by chance alone, rather than measuring something that is real—such as a real difference between the behaviors of two populations, the services being received by PLWH living in two different counties, or the effects of an HIV/AIDS protease inhibitor on two different populations tested. The probability valueor p value is a measure of how often a result could occur due to chance alone, rather than a real difference or relationship. Typically, statistical results are considered to be significant if there is less than a 5 percent probability— 5 times out of 100—that the observed difference or relationship was due to chance alone. In such situations, the p value is said to be less than .05 (<.05). A more stringent p value is <.01, which means that there is less than a one percent chance—one time out of 100—that the observed difference or relationship occurred by chance alone. The p value is calculated to determine whether results are statis-tically significant, and should be presented in statistical reports along with the findings, so that anyone using the data will know how much confidence to place in the reported relationships and analysis results.
It is important to differentiate statistical significance and practical importance. A large random sample can help you obtain needs assessment findings that are statistically significant. However, a research finding such as a difference between two target populations may have no practical importance unless the effect is both statistically significant and of relatively large magnitude. Some researchers suggest that you first decide whether differences have practical importance, and if they do, then carry out the appropriate statistical tests to determine whether the findings are statistically significant.
The researchers who carry out your needs assessment should be experienced in determining which statistical tests of significance are appropriate, depending upon whether your findings are based on large numbers, small numbers, or small total populations. Be aware of the need for these tests and ask whether they have been conducted.
◗ Where appropriate, carrying out tests of statistical significance to determine whether findings are statistically significant—that is, you can have confidence that they represent real differences among groups and did not occur by chance. T h e re is no set minimum sample size for such tests, but they are most meaningful for large samples, usually more than 100.
◗ Deciding whether findings can be generalized. Where convenience or purposive samples were used, and you have no way of ensuring that your sample is representative of a larger population, do not attempt to generalize your findings. Do explain how representative you feel your sample is of a particular population, and why.
◗ Once data have been analyzed by survey question, grouping these responses by research question or topic.
Qualitative Analysis
Non-statistical information from focus groups, key person interviews, community forums, and other data collection methods often re q u i re analysis in non-statistical ways, such as the follow i n g : ◗ Identify the research questions, topics, and population groups you want to learn about. ◗ Identify, order, and bring together the information related to each topic from each data collection method and source (e.g., focus groups, community meetings, key informant interviews).
◗ Analyze the information from that source/method—identify the most frequent responses, common responses within and across groups of respondents, differences reported within and across groups of respondents.
◗ Su m m a r i ze the information and compare responses by type of respondent and population group.
◗ Compare and contrast qualitative information about the same topic across sources (e . g ., compare findings on barriers to accessing services for newly diagnosed individuals as reported by key informants, focus groups, and community forums).
◗ Compare qualitative findings with quantitative findings on the same questions, topics, and population groups; include not only data collected for this needs assessment but also existing evaluation findings and other secondary data. For example, epi or survey data on TB infection among injecting drug users can be compared to information from focus groups with the population and key informant interviews with substance abuse treatment professionals.
R E F E R E N C E S
Sources for This Chapter
. . . . This chapter was based on field experience and on a variety of materials on needs assessment and primary research, especially the following:Emily Gantz McKay,Using Data, Assessing Needs: A Guide for Community Members of HIV Prevention Community Planning Groups, National Council of La Raza, June 1995.
Maria A. Leyva and Emily Gantz McKay,Understanding Evaluation Techniques: The Building Blocks of Evaluation, National Council of La Raza, June 1993.
“ Needs Assessment, Re p o rt of a Ma rch 26, 1996 Technical Assistance Conference Call,” Di v i s i o n of Service Systems, HIV/AIDS Bureau, Health Resources and Services Administration, 1996.
For Further Discussion of Topics in This Chapter
. . . . Definitions of terms related to primary data collection.See the glossary in Section VI of this Guide.Sampling, analysis, and other statistical methods.See “Using Data to Assess HIV/AIDS Se rv i c e Needs: A Guide for Ryan White CARE Act Planning Groups,” Re p o rt #2, HIV/AIDS Eva l u a t i o n Monograph Series, August 1998. Based on “Using Data, Assessing Needs,” described above. Definitions and examples of statistical terms and techniques for non-re s e a rc h e r s .See W. Pa u l Vo g t ,Dictionary of Statistics and Methodology: A Nontechnical Guide for the Social Sciences.
Reviewing statistics with a critical and practical eye.See Victor Cohn, News and Numbers: A Guide to Reporting Statistical Claims and Controversies in Health and Other Fields.Ames, Iowa: Iowa State University Press, 1989.
Conducting focus groups. See Mary Debus, Handbook for Excellence in Focus Group Research.
Washington, DC: Academy for Educational Development, 1988.
To Obtain Publications Mentioned in This Chapter
. . . . National Council of La Raza publications are available from the National Council of La Raza Distribution Center, (301) 604-7983.To obtain HRSA publications re f e renced, see the HIV/AIDS Bu re a u’s website at w w w. h r s a . g ov / h a b or call the HRSA Information Center at (888) ASK-HRSA [(888) 275-4772].
5
. PREPARING A RESOURCE INVENTORY AND A PROFILE OF PROVIDER
CAPACITY AND CAPABILITY
A. Overview
. . . . A comprehensive CARE Act needs assessment includes both a resource inventory and a profile of provider capacity and capability.◗ The resource inventorydescribes current HIV services in your service area, providing a comprehensive picture of the continuum of care—the organizations and individuals providing services to PLWH in the service area, regardless of whether the provider sees itself as an HIV/AIDS service provider or receives CARE Act funds.
◗ The profile of provider capacity and capability builds upon the resource inventory by providing additional information about the availability, accessibility, and appropriateness of services for PLWH. While the resource inventory might be viewed as describing the broadest possible potential network of caregivers within the service area, the provider p rofile provides information about providers that are most likely to be a part of the actual service and referral network for PLWH.
Together, the resource inventory and the provider profile can help you determine the extent to which the needs identified for specific target populations are being met by existing services and activities. (This process of identifying gaps is described in the Chapter 6 of this section.)
The resource inventory and provider profile can be conducted separately, but these two needs assessment components are most efficiently conducted as a coordinated effort since they re q u i re many of the same contacts and approaches. The profile re q u i res the inve n t o ry because it provides supplemental information about many of the organizations included in the inventory. It can be conducted later; for example, you might decide to prepare the inventory one year and the profile the next year. This chapter provides approaches that can be used for developing the re s o u rce inve n t o ry and provider profile separately or together. An important consideration is how to develop an inventory and profile that is comprehensive and useful while controlling the time and effort expended in the process.
Ideally, development of the resource inventory and provider profile for a community are cross-title efforts, with each title specifying information of particular interest that should be included and helping to ensure inclusiveness. If a program from one title needs to supplement or expand the inventory or profile, it can save time by beginning with a jointly developed provider survey, making additions if necessary.
B. The Resource Inventory
. . . . The resource inventory describes current HIV services in your jurisdiction, regardless of funding source. A comprehensive resource inventory includes information about:◗ HIV services within your jurisdiction; and
◗ other supportive and ancillary services that are not specifically HIV-focused but are likely to be of use to PLWH.
Components
A resource inventory is more than a list of HIV services and their funding levels and sources. It should also try to provide as much as possible of the following information about each serv i c e provider included in the inventory:
◗ Contact inform a t i o n :name, address, contact person, and contact information (telephone, fax, e-mail) for the entity providing HIV or related services
◗ Resources:the amount of funding or value of other resources (e.g., volunteer personnel, in-kind) as well as type of funding (public—CARE Act, other Federal, State, local; priva t e — foundation, corporate, individual donations, fees, fundraisers, other)
◗ Program focus:HIV care or other (e.g., substance abuse treatment, prenatal care) ◗ Services provided:types of services delivered (e.g., primary medical care, nutritional
counseling, case management, PLWH support groups, substance abuse treatment, transitional housing)
◗ Project service area:geographic area in which services are provided
◗ Target populations served:identification of target populations, including populations receiving special focus
◗ Service capacity:number of different individuals ser ved in a year, or some other agreed-upon measure of capacity; if the provider serves both PLWH and non-PLWH, include the number of slots set aside annually for PLWH (if any).
Information Sources
Preparing the re s o u rce inve n t o ry usually re q u i res seeking information from at least three sourc e s : ◗ Providers: representatives of the entities providing the services are the most direct and
accurate source of information about their activities;
◗ Consumers: those who can identify organizations from which they obtain a wide variety of HIV/AIDS and related services; and
◗ Secondary data:information such as existing service provider directories, which list organizations offering a wide range of services likely to be needed by PLWH. Finding the Information
Finding the information needed for the re s o u rce inve n t o ry invo l ves performing such activities as: ◗ obtaining a list of HIV/AIDS service providers in your service area that are funded by
any title of the CARE Act;
◗ identifying service providers that are not funded by the CARE Act but are represented on a CARE Act planning body or advisory group;
MINIMUM INFORMATION NEEDS FOR A RESOURCE INVENTORY
If your planning body has limited resources, consider focusing on these minimum data needs for a useful resource inventory:
• Name, address, and other contact information for the organization being surveyed
• Funding amount
• Funding sources (CARE Act, other public, private)
• Program focus, including whether or not focus is specifically on HIV care • Services provided
• Geographic project area • Targeted population(s)
◗ identifying other HIV/AIDS and related services that are not funded by the CARE Act and not represented on the planning body; or
◗ identifying non-HIV-specific programs or activities that are likely to be of interest and reviewing preliminary lists to include organizations that may be needed to make your inventory comprehensive but eliminate marginally relevant groups and activities. Try the following strategies to identify HIV care and related activities and providers:
◗ Use existing directories, lists, and secondary source data.Look at directories prepared by coalitions or funders, the provider inventory prepared by the other CARE Act titles or the HIV Prevention Community Planning Group in your jurisdiction, provider lists compiled for other needs assessments, or research reports focusing on programs and populations of possible interest, such as substance abuse, youth services, and women’s needs. ◗ Ask each planning body member to list the providers s/he knows, including those
providing AIDS-related services—or allocate some meeting time to a brainstorming session where members together brainstorm a list of services and programs. Get specific names and contact information wherever possible.
◗ Work with planning body or advisory group members to identify types of non-AIDS-specific programs or activities that are likely to be of interest—
e.g., STD treatment, drug rehabilitation, housing, or prenatal care. Once you have the list, identify and contact specialists in these program areas to identify specific entities providing such services.
◗ Ask both consumers and providers to help identify HIV care and related programs and serv i c e s .Ask about re s o u rces and services when you conduct key informant interv i ew s associated with other parts of your needs assessment. As part of your consumer needs assessment efforts, ask PLWH from different target populations and geographic locations to identify HIV care or related services that they know about. Be sure to ask for specific names and contact information.
◗ Ask both key informants and contacts at organizations several “screening questions” to identify (and eliminate) organizations whose services are of limited relevance to PLWH. Avoid casting such a “wide net” and asking for so much information from so many sources that the resulting materials become overwhelming. Be sure to ask screening questions about related activities to avoid including minimally relevant services.
Screening questions may include:
• Does the entity consider assisting PLWH to be a primary or secondary focus of its service efforts?
• Does it believe a substantial proportion of its clients are persons living with HIV? • Is it providing specific services that your planning body believes contribute to the
continuum of care in your jurisdiction?
If the answer to all these questions is no, additional information about the group need not be obtained. Do not include in your inve n t o ry or analyses groups that do not meet the screening criteria.
Steps in Compiling the Inventory
Once you have identified services and entities, the following steps can help you obtain information and compile the inve n t o ry. (If you plan to pre p a re both an inve n t o ry and a profile at the same time, skip this section and use the broader steps described below, in the Provider Profile subsection.) 1. DEVELOP A CONCISE SURVEY INSTRUMENT TO OBTAIN THE INFORMATION YOU NEED FROM
EACH ENTITY PROVIDING SERVICES. Use short-answer and closed-ended (multiple-choice)
questions almost exclusively. Prepare an effective cover letter explaining to non-CARE Act-funded providers why it is important that they participate in your inventory, and include s c reening questions so that groups whose services are not really re l e vant to your interests do not have to complete the entire survey. Consider promising a copy of the inventory to everyone who participates in the survey.
2. ADD A FEW CAREFULLY CHOSEN QUESTIONS TO CONSUMER AND KEY INFORMANT SURVEYS, and be sure that information identifying providers is analyzed in time to add to your list of organizations to be contacted for the resource inventory.
3. DECIDE HOW YOU WILL SUMMARIZE AND PRESENT THE RESOURCE INVENTORY and be sure
your provider survey will generate the information needed in the most appropriate format for this method of presentation. For example, if you want to use a specific set of service cate-gories in your final document, be sure that the question about services provided matches that list.
4 . D E V E LOP AND IMPLEMENT A CLEAR PLAN FOR OBTAINING THE INFORMATION. This may include
a combination of mail, fax, e-mail, and personal interview methods. Follow up on all AIDS service provider contacts and on all or a sample of other providers. Since your instrument is largely “closed-ended” and obtaining information from providers is somewhat less complex than surveying consumers, consider using volunteers (such as college or graduate students) to help collect the information. Be sure to provide adequate training for everyone involved in this effort.
5. COMPILE THE INVENTORY. Or g a n i ze it logically, by types of services provided, target populations, and/or geographic service area. Some inventories use one major factor (such as type of serv i c e ) to organize the inventory, then subdivide by other factors (such as target populations and s e rvice area). Others provide their detailed listing based on one factor, then provide additional summary listings based on the other factors.
6. SHARE YOUR INVENTORY AS A DIRECTORY.Send it out to all the inventoried entities, and
g i ve it to planning body members and other entities that might use it for referrals. En c o u r a g e new service providers to tell you about their activities by including a blank inventory listing form in the dire c t o ry, with instructions for sending it to the planning body or advisory gro u p for inclusion in the next update.
C. The Provider Profile
. . . . The provider profile builds on the resource inventory but includes additional information on provider capability and capacity—whether services are available, accessible, and appropriate for PLWH and for particular PLWH populations.Uses of Provider Profile Information
The provider profile not only includes information about individual providers but also aggre g a t e s and presents data by type of service, geographic location, population, and/or other factors needed for planning and decision making. For example:
◗ A Title I or Title II program might aggregate case management or substance abuse treatment provider capacity for use in identifying service resources and gaps for special needs populations such as African Americans or women with children. This information could help the planning body set service priorities and (in the case of a Title I planning council) provide guidance to the grantee in how best to meet these priorities.
◗ A Title III applicant might chart and aggregate information about the availability of HIV counseling and testing services in a specific geographic target area in order to determine the extent to which Title III funds need to be allocated to counseling and testing.
◗ A Title IV applicant might chart the aggregate capacity of a community’s medical care, mental health, and substance abuse services to serve pregnant women, infants, adolescents, and childrenin order to determine gaps in care for these populations that may need to be filled with Title IV funds.
◗ A grantee, planning council, or provider funded through any of the titles might aggregate information on service accessibility and barriers to determine the most
Need for Provider Profile Data
Provider capacity and capability data are needed to document service needs and gaps both ove r a l l and for specific populations and/or geographic areas. CARE Act grant applications also ask for such information. For example:
◗ Title I and Title II application guidances require applicants to estimate the partially met and unmet need for services, overall and for special needs populations.
◗ The Title III application guidance requires applicants to describe gaps in HIV early intervention services/primary care within the targeted service area, overall and for specific populations, in order to justify the need for grant funds to provide these services to the underserved populations.
◗ The Title IV application guidance requires applicants to describe and chart unmet needs and gaps in services for HIV-infected women, children, youth, and families within the targeted service area, in order to justify the need for grant funds to coordinate and/or provide these services to the underserved populations.
A well-designed and periodically updated provider profile provides specific information needed to meet these requirements and to develop a service plan and a provider network to help fill these service gaps.
Provider profile information can be supplemented with existing Annual Administrative Report (AAR) from Title I and Title II-funded providers and from annual program data reports from Title III and Title IV programs. This information can then be compared with client data on service needs and barriers to determine service gaps (See Chapter 7 for ways to use this information in estimating met and unmet need).
Despite their value in planning and decision making, assessments of provider capacity and capability sometimes receive low priority from CARE Act grantees, planning bodies, and applicants. A review of recent needs assessment activities by various CARE Act programs demonstrates that needs assessments tend to devote far more attention to determining perceived client needs than to determining provider capacity and capability. Even provider surveys often seek perceptions of met and unmet need but request very little information about the provider’s own service capacity or the accessibility and appropriateness of these services for PLWH. Resource inventories and provider profiles also seem to be updated less frequently than PLWH surveys.
The material that follows is designed to encourage and assist the CARE Act community in developing provider profiles as a part of their needs assessment efforts.
Determining the Scope of the Provider Profile
The appropriate scope of the provider profile depends on several factors, including: ◗ what uses are to be made of the provider profile information;
◗ what information is already available from existing sources, including past needs assess-ments for your title or needs assessassess-ments done by another CARE Act title covering the same geographic area and Annual Administrative Report (AAR) reports, and research and evaluation reports;
◗ what specific needs assessment questions the provider profile information is expected to help answer; and
◗ the resources—time, personnel, and funds—available for this component of the needs assessment.
Ty p i c a l l y, the scope of the profile should be broad enough to generate information needed to: ◗ enhance understanding of the continuum or system of care that exists for PLWH within
the service area;
◗ provide additional “supply” data needed for comparing the supply and demand for HIV/AIDS services and identifying service gaps and unmet need;
◗ document which specific populations and/or service areas face especially severe service gaps—as required to demonstrate the need for Title III or Title IV funds or set Title I or Title II priorities; and
◗ contribute to program implementation by providing updated information to assist case managers and other staff in making appropriate referrals.
The provider profile builds on the resource inventory, but does not necessarily include information from all the service providers in the inventory. Sometimes it is important to carry out broad-scope information collection to generate a comprehensive provider profile of a wide network of services. Sometimes it is sufficient to focus on several key service areas (e.g., primary medical care, case management) or major providers. In other situations, such as when you believe particular populations have special service barriers and are not receiving appropriate services, you may want to include small providers serving these populations.
Answering the following questions can help you decide on an appropriate and feasible scope for your efforts to generate or update your provider profile:
