Adapting_measuring_tracking

Adapting, measuring, tracking

5

5 Adapting, measuring, tracking

158 UFO Model Replication Manual www.ufomodel.org

Adapting UFO to fit your com-munity

“San Francisco is soooo different from where I live, how could we possibly use this model program?”

You may have said something like that when you first picked up this manual. The truth is, young adult injectors will be different from town to town and situation to situation. But a lot of the underlying themes of the UFO Model will hold true across populations. While some of the information in here may not be helpful for you, a whole lot of it will be quite use-ful. Everyone should adapt programs to fit their community, but there are some guidelines for how to best do that. “Ad-aptations should be successful if changes made are consistent with the intervention and culturally relevant to the population with whom the work is to be done” [CDC] 1. Learn about what your community

needs. You can use the Needs As-sessment in Part 3 – Preparing for UFO to get a sense of what’s going on your community. This is sometimes referred to as formative evaluation. Make sure that any changes you make are based on information collected during the needs assessment and not based on assumptions you have about young adult IDUs.

2. Keep the core elements. The core elements of the UFO model are what have been determined to make the model work. Parts of the model can be changed, added to, or deleted, as long as the core elements remain intact. These core elements were developed based on 14 years of service and re-search with young adult IDUs.

3. Decide which components need adaptation. During your Needs As-sessment you probably discovered that parts of the UFO model may not be relevant in your community. Start with a plan for what you will keep and what you will adapt, write down your changes and have a written protocol for what you are doing.

4. Make adjustments along the way. If you change something and it doesn’t

work, then go back and tweak it. This manual is not written in stone. Mistakes are only mistakes if we don’t learn from them.

Example: The UFO model works with young adult IDU who are homeless, travel-ling and marginally housed. You may have discovered that your young adult IDU are for the most part living at home and their parents don’t know that they’re injecting. Part 4A - Outreach emphasizes going out on the street to engage youth. Since this won’t work for your population, how will you adapt this? What kind of outreach will engage these young adults (internet chat rooms? Online pharmacies?) What’s the best way to let them know about your services? What do they think is engaging and important to keep them safe?

Though you may adapt the outreach strat-egies, the core elements are still crucial. You want to maintain a youth-centered fo-cus so that young adults feel safe with you. You need to show your face (virtual and real) so that young adults get to know you and feel you are reliable. Seek out other agencies and opinion leaders to collabo-rate and share resources to give the young adults as much support as the community can provide. And always remember to use a harm reduction approach and maintain cultural competency by hiring a diverse staff, providing what your participants want and need, and being non-judgmental about drug use and injecting.Remember, be creative! The UFO model is not a recipe meant to be followed exactly, but more like a soup that starts with a delicious and nutritious (and evidence-based) broth to which you can add your own ingredients and knowledge created in your agency and your community.


159www.ufomodel.org UFO Model Replication Manual

What can I adapt in the UFO Model?

Outreach and education

Adaptable aspects include:

* Location: where outreach occurs (see example above)

* Materials distributed during outreach * Program flyers

Non-adaptable aspects include:

* Safety issues: partner up, never con-duct outreach alone, carry a phone

* Collaboration with other outreach workers and agencies serving the same participants

* Confidentiality of clients

Drop-in center


* Location: you may not have your own site, but share space with another agency, local soup kitchen, etc.

* On-site services: you may not have a healthcare practitioner on site, or you may add a case worker, for example.


* Confidentiality of clients * Non-judgmental attitude * Location easily accessible to young

adult IDU * Reliability: services should be avail-

able as many hours as possible and at the same time every week so that young adults can count on your pres-ence

* Youth-friendly: If young adults want to bring in their girlfriends/boy-friends, pets, cell phones, etc, make sure to welcome them as they are.

* Referrals should always be available.

Education and support group


* Videos: Changing videos for videos with similar content

* Data/statistics: update or personalize statistics for your community

* Customizing role plays (names, ex-amples, etc)

* Timing: Although this is an 8-week group format, you may want to con-duct 4 sessions a week for two weeks (during school vacation, for example). You may also choose to only present the first 4 sessions.


* Education content of sessions * Order of sessions * Inclusion of safer shooting and safer

sex information * Non-judgmental attitude * Harm reduction approach

Counseling and testing for HCV and HAV/HBV vaccines


* Location: you may not be able to conduct HCV testing on-site. How-ever, you must include HCV testing in your program. If you partner with the health department or other agency that tests, be sure to escort your clients there, or have visited the test site to make sure it is youth-friendly, or schedule your drop-in right before testing so clients can go directly there.




* Access to HCV tests * Offering HAV/HBV vaccines * Reminders for clients to come and

receive their results * Education on the different tests and

what they show * Confidentiality of clients

Syringe accessNope, you can’t adapt this. Don’t do it. Syringe access is crucial to the success of any HCV prevention program. If your pro-gram cannot provide sterile syringes and drug preparation equipment, you need to partner with a group that can. See Part 4D – Syringe access for more information.

Youth-centered referralsAgain, you can’t adapt this. Young adult IDU often have many and varied needs, and you won’t be able to provide ev-erything they need. You need to do the legwork of visiting agencies and seeing the surroundings, talking to staff to educate them or see how they treat young adult IDU, and knowing exactly where they are, when they’re open and what appoint-ments are available. If you send your clients to a shelter that tells them they’re too young (or old) to stay, you will have lost credibility in their eyes.

Use the chart on the following page to strategize what parts of the UFO Model you may want to adapt.



Adaptation Q

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Outreach and education

Drop-in center

Education and support group

Counseling and testing for HCV

Syringe access

Youth-centered referrals



Measuring Success

The UFO Intervention Replication Manual does not include evaluation materials be-cause measuring success of the program is complicated. The ideal measure would be a decrease in HCV infections among young adult IDU; however, surveillance and data collection on HCV has been limited to non-existent across the US. In San Francisco, the first health department report on HCV infection was released in October 2010 for 2009 data. Likewise, the CDC reported on non-acute HCV infection for the first time for 2009, but that only included 5 states and 2 cities across the US.So how do we measure success? Each agency implementing the UFO Model needs to decide what specific outcomes they want for their program. We need to remember that we are working with a dis-advantaged population that may be deal-ing with multiple health issues besides HCV: addiction, homelessness, violence, trauma, mental illness, to name a few. And to top it all off, they’re young adults! All young adults are more likely to experi-ment, take risks and believe themselves to be invulnerable. The good news is that because they are young, our participants have a lot of resilience and strength to face these challenges.Because success can be a variable and highly personal term, we asked one of the longtime UFO staff in San Francisco to give her perspective on measuring success when working with young adult IDU.

What success means to me Alice Asher RN – Clinical Nurse Specialist for the UFO program in San FranciscoWhenever I tell someone what I do for a living, I generally get one of two questions: ‘Do you like it?” or “Doesn’t it make you sad?” I don’t even have to think about my answer. I don’t like what I do. I love it. And it rarely makes me sad.It took me a while to figure out why people ask those questions. The easy assumption is that most people would not choose to work with active drug users. That is, I’m sure, part of it. But after many years of do-ing this and being faced with that question

countless times, I’ve come to understand that it’s far more nuanced than that. In a large part, job satisfaction derives from the outcomes we see and the success we have in doing what we do. When someone asks me incredulously if I like my job, they are making the assumption that because my clients continue to use drugs and often contract HCV, I must get frustrated and feel unsuccessful.Its not that I don’t get sad. Individual cir-cumstances, histories and personal stories can be devastating. The circumstances in which some people exist can be disturb-ing and scary. Since I have spent my entire professional life working as a counselor and care provider in some form or an-other, I do take such experiences in stride and I am accustomed to this. But really, that accounts for a very small portion of my work experiences. For me, what makes up my work experience is so much more positive than that. I don’t like that my clients’ realities can be so uncomfortable and painful. I don’t like that most have ex-perienced a lifetime of pain, violence and abandonment. I don’t like that addiction is such a gripping, devastating disease. But I cannot change those things. What I do love about my work is that I am there. I, and everyone at UFO, am a stable presence in these chaotic lives. We genu-inely care about our work and about our clients. We have the power to touch people who often are made invisible by society. We are giving them information, educa-tion and services tailored to them. We are there to answer questions that maybe no one else has ever answered honestly and clearly. We care and we are there. We provide a place for people to be safe and to get a little safer. And we do it all without expecting our clients to change.If you do this work and expect to signifi-cantly change every client’s circumstances, this will be a struggle. Harm reduction isn’t just an approach to caring for an ac-tive drug user. It is a philosophical view of drug use and of the lived experience of drug dependence. While I may regard my greatest ‘success’ stories as the kids who do get clean and off the streets, I see suc-cess in my work every day.

“Don’t take it personally if they don’t meet their goals. I sit down with them and have them give me one day goals, one week goals, two week, two year goals. Even if they never accomplish that, they have something that I wrote down with them and they’re looking at. Will they accomplish their goals? Probably not. But I’m not sad if they don’t accomplish that one little goal. At least they’re going in a direction. You want them to move forward, not backwards. Don’t let them take it personally if they don’t do their goals, either.” –UFO counselor



In this context, success is defined:When someone walks in the door. Most young adult IDU avoid institutions, author-ity and health care. Simply the fact that they came in is amazing. It’s not unusual for someone to cry the first time they come to UFO. Few of our clients have expe-rienced the care and resources we have to offer. It can be overwhelming to them. When someone comes back. That they made it in the first time is amazing. That they came back is incredible. We know that needs were met in the first visit and we can continue to do so in subsequent visits. A lot of times they’ll bring a friend with them when they return. This warms my heart. When someone learns something about HCV that they never knew. Sometimes this information comes a little late – the client already has HCV. But, as I always remind them, someone gave them the vi-rus. Transmission can stop here. Without a vaccine, knowledge is our only tool to strive for safety. In this context more than so many others, knowledge truly is powerWhen someone follows through on a referral. Walking into a strange place for the first time is scary, especially for young adult IDU who have experienced stigma and discrimination. When someone fol-lows through on the referral I provided, I was successful. This is particularly impor-tant to remember. When many of our cli-ents are at drop-in, they feel comfortable telling us their needs. When we can’t meet

them on site, we have to refer out. Our clients may need to see a doctor, get men-tal health care or be ready to access drug treament. But a lot can happen overnight. Motivations can change and the reality of actually accessing a new place is barrier. I don’t evaluate success by seeing that my client got clean or had their healthcare needs met. While that is my ultimate goal, I take pride in the baby steps. To me, sim-ply that they asked for help and took steps to follow through is pretty awesome.

“You have to have a team of people that really all

have a similar want—I’m not gonna say goals or

anything because their goals are personal—I’m saying

more of a common want to see these type of people get

better, not just where they live but everywhere.” –UFO

participant



Tracking and retention

The participants we see in San Francisco are mostly homeless or marginally housed and may lead somewhat chaotic and change-filled lives. For that reason we pay particular attention to tracking and reten-tion for our participants. Tracking refers to making sure you have information about each young adult IDU to document their participation in UFO. Retention refers to helping make sure that participants return to your program, either for a specific purpose (test results, vaccinations, groups, follow-up on referrals) or simply to hang out, build trust and help them stay safe.

Tracking

In San Francisco, everyone who walks into the UFO drop-in signs in at the front desk with their name (or nickname) and date of birth. If they want to engage further with any of our services (testing, counseling, healthcare, vaccinations), we ask them to fill out a pretty comprehensive contact form (see Appendix). We also ask for a photograph to help us better identify them later.

Most participants agree to have their picture taken. This is likely due to UFO’s excellent reputation on the street. Be sure to note when a participant declines to be photographed, so you don’t ask them again. If you’re just starting a program, it might be better to wait until you’ve built a reputation and gained trust in the commu-nity before asking for photos.

You’ll see that the contact form is fairly comprehensive. We have learned that staff should fill out the contact form, asking questions of the participants. This will generally get you better contact infor-mation because you can probe for more information. Also, some participants may have difficulty writing or filling out forms. Ask for phone, e-mail, websites, phones of friends or family, names of caseworkers, locations where they hang out. Always ask for time of day as well: participants may hanging out downtown during the day, but in another location at night. Make it clear that it needs to be OK with the partici-

pants for you to contact other people, and ask if it’s OK to mention UFO if you do contact them. If a participant has problems answering the form or doesn’t know what to say, ask them, “If you were one of our outreach workers, where would you go to find you?” We sometimes provide a map of the down-town area and ask participants to mark or show us where they hang out.You may be thinking that this level of in-formation gathering is too intrusive or not respectful of participants. You never know until you try. If participants are consis-tently balking at filling out the form, you may need to adjust it. We have found that young adults are more than happy to give us this information. It makes them feel like we care about them, and it’s reassuring that someone knows where they are and how to find them.

The UFO Model uses this comprehensive method of tracking because our partici-pants are highly mobile and marginally housed. They may not have their own phone or a fixed address. The young adult IDU in your community may be differ-ent. If your participants are housed or employed and relatively stable, you may not need to collect all this contact infor-mation. However, in those cases, it may be more important to ensure participants that the data is confidential, and be sure to get permission to leave a message or call someone at work.

Most importantly, if you don’t get good contact information, you may not be able to find a participant. Think how you’ll feel if one of your participants tests positive for HCV and you can’t find them to come in for their test results. Or if a participant tells you they are in a bad place or on a binge, and they don’t show up at the next drop-in and you can’t find them again.

ConfidentialityConfidentiality is extremely important when it comes to gathering and storing contact information from your partici-pants. For more detail on confidentiality issues, see Part 3 – Preparing for UFO.

“That’s what’s cool about the people who work at UFO. They got to know us. Most people working with substance abusers don’t want to take the risk of making a friend, or caring about someone that might be a total turd, or might steal from them or something like that. But these people here didn’t give a crap about any of that, they just really cared about us. For me, it was a new thing.” –UFO participant



Store contact forms in a secure loca-tion. Any paper forms should be kept un-der lock and key. This could simply be a fil-ing cabinet or desk that locks, or a special locking box. All electronic data should be kept on a secured computer or server and protected by password. Only select staff should have access to the information, such as outreach workers and counselors.Remember, if your agency uses laptops or other portable computer devices, these should be registered with your agency, encrypted, secured with a password and locked up when not in use. Staff should never store any information about partici-pants on their personal phones, comput-ers, etc.Get permission. Make sure the partici-pant knows that if they list a person on their form, you might contact them. Ask if you can mention UFO when you contact them.Only use information you collect. Your staff might know things about the par-ticipants that they did not tell you. You may see them working at a store, or at an SEP, or you might run into them at other venues. If a participant did not list those places on their contact form, you cannot go or call there to contact them. Only use whatever contacts the participant has agreed to give you.Treat everyone the same. Even though it’s hard to see someone that you know is HCV+ and hasn’t returned for their test re-sult, you cannot treat them differently dur-ing outreach or follow-up. For instance, if you approach a group of your participants hanging out, you can’t say to one of them, “Dude, you REALLY need to come back to see us, it’s super important.”

Retention

UFO retention activities are office-based and street-based. We generally start with office-based outreach the day before drop-in or the participant’s appointment (test results, vaccinations, groups). Office-based retention relies on

* Phone calls * E-mails * Texts

* Social networking sites (Facebook, MySpace)

* Snail mailUse any and all of these methods to con-tact folks. Use the participant’s contact forms to get mailing addresses, phone numbers of friends and family, e-mail, and contacts at local service agencies in order to remind them they are due for appoint-ments. This may be a long process, so it’s important to schedule enough time to fol-low through on all possible contacts.Very rarely does a UFO participant com-plain about us sending them reminders. However, if your participants already keep a schedule on their phones or computers, or return to your program on a regular basis, it may not be necessary to con-tact them multiple times. It’s a thin line between being resourceful and bugging someone. Your participants will let you know if you’re crossing the line.Street-based outreach to specific par-ticipants takes place in the week before their next appointment. The shorter the time between outreach and the appoint-ment will help participants return. In San Francisco, we schedule outreach on the morning before our drop-in. Again, we rely on the client contact form to learn about where they hang out, work and live.Occasionally you might want to make an individual plan for a participant who has not returned (typically someone who has tested HCV+). In this case, you may



visit the hotel or campsite where they are living, knock on their door, leave a note slipped under the door or in a mailbox. You may leave a note at other agencies they may visit, if there is a message board, or ask staff at other agencies to let the participant know you wanted to see them (only if they have given that contact infor-mation and without disclosing the reason, of course).

Hard-to-find participantsEvery now and then, it may be too difficult to find a participant. You may have fol-lowed up with all the contact information through every possible means and still can’t reach someone. In this case, there are a few other places to check. Some institutions may be able or willing to give you information and others may not. It depends on local policies, your relation-ship with the institution, or sometimes just if someone who answers the phone is having a bad day. Persistence helps.When calling one of these places, it’s best to start with a formal introduction: “Hello, my name is _____ and I work for ________ (if you’re affiliated with a university or health department that sounds official, use that as well). I’m trying to locate a participant in our program. Can you tell me if they are here (in custody, enrolled, etc)?”

* Local jail. Many young adults who use drugs have been incarcerated at least once in their life, and may cycle in and out of jail. Sometimes, another partici-pant will tell you that someone is in jail. Develop a good relationship with your local jail. If a participant who is incarcerated needs a follow-up vac-cine, it may be possible for the health clinic at the jail to deliver that.Again, it depends on the jail and the community how open they may be to talking to you. They may need the per-son’s name and birth date to identify

them. You may not have the partici-pant’s real name, or it may not match with what the jail has on record.

* Drug treatment. Again, many partici-pants have a history of drug treat-ment. You can check local residential treatment centers to see if a partici-pant has checked in. Methadone clin-ics also may be a good place to find participants. At UFO in San Francisco, we have been collaborating with the same treatment programs for many years and have a good relationship, so it is easier to get info on a partici-pant. Occasionally, a participant will give you the name of their treatment center on their contact form.

* Hospital. You may hear from another participant that someone is in the hospital. Not only is it good to know if one of your participants is in the hospital, it also allows you to go visit them. Sometimes hospitals will tell you a participant’s room number; sometimes you need to be immediate family to find out.

* Family. At UFO in San Francisco, only a small percentage of participants give us contact information for their parents or family members. Your participants may live at home and have that as their main contact, and so won’t be a method of last resort for finding them. When calling family, be especially aware of confidentiality issues. A parent may grill you about their child to find out more about what they’re up to.

* Morgue. Usually if a participant dies, the other young adults will know about it. As a last resort, you can always check with the morgue. In some areas, the morgue will be able to tell you; in other areas, it may not be allowed.

5 Appendix 1 - UFO contact form


Quick ‘n’ DirtyAdapting, measuring, tracking


Adapt the UFO Model if you need toEveryone should adapt programs to fit their community, but there are some guidelines for how to best do that.

* Learn about what your community needs * Keep the core elements * Decide which components need adaptation * Make adjustments along the way

Figure out measures of success for your programThe ideal measure would be a decrease in HCV infections among young adult IDU; however, surveillance and data collection on HCV has been limited to non-existent across the US. Because success can be a variable and highly personal term, we asked one of the longtime UFO staff to give her perspective on measur-ing success when working with young adult IDU.

* When someone walks in the door * When someone comes back * When someone learns something about HCV that they never knew * When someone follows through on a referral

Keep track of your participantsThe participants we see at UFO in San Francisco are mostly homeless or margin-ally housed and may lead somewhat chaotic and change-filled lives. Even young adults living at home can be frustratingly hard to contact. For that reason, pay particular attention to tracking and retention for participants to make sure they return to your program, either for a specific purpose (test results, vaccinations, groups, follow-up on referrals) or simply to hang out, build trust and help them stay safe.

* Contact form. Be thorough in asking for contact information. Always ask what time of day they may be at a certain location.

* Confidentiality. Use extreme care in storing contact info in a locked and se-cure area or device. Only use contacts that the participant has given you and agreed to let you contact.

* Hard-to-find participants. There are several places you can check, such as jail, drug treatment centers, hospitals, family members and lastly, the morgue.

“Don’t take it personally if they don’t meet their goals. I sit down with them and have them give me one day goals, one week goals, two week, two year goals. Even if they never accomplish that, they have something that I wrote down with them and they’re looking at. Will they accomplish their goals? Probably not. But I’m not sad if they don’t accomplish that one little goal. At least they’re going in a direction. You want them to move forward, not backwards. Don’t let them take it personally if they don’t do their goals, either.” –UFO counselor

Adapting_measuring_tracking

Documents

model work

young adult idus

young adult injectors

core elements

model program

community needs

needs assessment

wont work