Mark: Greetings from the National Rehabilitation Information Center (NARIC). I am Mark Odum, NARIC’s director and I welcome you to our 16th episode of NARIC’s Spotlight podcast. In today’s episode, Jesica Chaiken, NARIC’s Media and Information Services Manager, speaks with NIDILRR Grantee Christine Helfrich, PhD, about the Life Skills Manual (LSM). The LSM is one of the most popular documents in NARIC’s collection. I am very excited to hear this conversation about the LSM, its development, and the path that Dr. Helfrich sees for the LSM. Dr. Helfrich also shares some helpful advice for up-and-coming occupational therapists.
Jess: So, thanks so much for joining us, we really appreciate it! We’ve lived with the Life Skills Manual for 10 years and it’s delightful to have the chance to talk to you about it! Would you introduce yourself really quickly?
Christine: Sure, so I’m Christine Helfrich. I’m an occupational therapist with a PhD in Public Health so my work has kind of crossed sections of Public Health and Occupational Therapy with a focus on underserved populations. I’m currently a professor at American International University in Springfield, Massachusetts.
Jess: So, explain what the Life Skills Manual is, give us an overview.
Christine: So, the life skills manual is actually four manuals (Money Management, Home and Self Care, Safe Community Participation, and Food Management). It started out really as developing tools for money management for a domestic violence transitional housing program because they really didn’t have anything and there wasn’t anything in existence that was either developmentally appropriate or age appropriate. So, there were things for teens and then there were things for people with developmental and intellectual disabilities, but there wasn’t anything for people who just didn’t happen to learn these things. And so, we wanted to develop something that was not insulting in any way and wouldn’t feel condescending to people. And something that could be used by anybody. As an OT, I would love to see OTs employed in these places, but I know that that’s not realistic. The next best thing was being able to provide people with a tool to be able to teach life skills. So, it started out as money management and then expanded in our work with the homeless mentally ill population, expanded into the other areas. We also did work with adolescents. It’s been piloted with a lot of different groups of people. But those were the four that we ended up with from the NIDILRR-funded studies. And there were two of those.
Jess: As you mentioned, this was developed under several NIDILRR field-initiated grants. With the field-initiated grants, you’re responding to something you saw in the field. Can you talk a little be more about what you saw in the field that prompted you to create this program?
Christine: Yeah, so. As I said it started out with domestic violence, but then it turned out the common theme was being homeless or being precariously unhoused. So we were working with people with mental illness who were living in permanent supported housing and also transitional housing and really looking at the fact that people who either had a chronic or serious mental illness or for whatever the reason never had the opportunity to develop the life skills like most people do which is during high school or during college as you start to gain more independence, that they had never really developed these skills. Or if they had developed these skills, they had not been doing them on their own. So, women in domestic violence situations may have been managing their own budget, but it was under the extreme control of their abuse partner. So, when they suddenly had to do this on their own, they didn’t have the skills to do that. And the staff that work with these individuals aren’t really trained in these areas and so they didn’t have the tools to be able to teach them and were doing it in random ways and ways that kept reinventing the wheel and it was taking a lot of staff time and effort without a lot of great outcomes. So, we wanted to develop something that was uniform, that could be consistently used across populations and that really could be used by anybody with a high school education, and not even: it’s written at an 8th grade level. So really any staff person at any site could pick it up and use it and anybody that’s exposed to it could then use it on their own. We‘ve had people that have done that.
Jess: What kinds of feedback did you receive from the people who helped you field test it?
Christine: So it’s been field tested in a number of different areas and different levels of preparation and different professions. We also had it reviewed by people who were peer mentors to people with serious mental illness and we did that actually really early on because we wanted to make sure the language was acceptable and that it was not offensive in anyway. And some of the feedback we did get was negative in the sense that, in every module in some way or another it addresses the use of medication. The peer mentors felt that it was a bit stigmatizing in that they felt that it implied that everybody with a mental illness would be on medication and needed to be on medication. That was not the point and not the way it was presented, it was more things like if you’re taking a new medication and it makes you sleepy, what can you do when you’re taking public transportation to remain safe. So, suggestions like sitting up near the driver, letting the driver know when you need to get off in case you fall asleep, things like that. And then around things like interactions with food and paying for medications, that’s how it’s brought in. So that was the one negative piece of feedback that we got. And so, we did go back and really look at the language and making sure it said IF you’re taking medications for whatever reason. Otherwise, people really loved the structure and level of detail and instruction that is in it.
That other piece of feedback we’ve gotten is that it’s just too bulky because what is still available is the research version which is about 100 pages for each volume. And because it’s got pages in there for notes and feedback and for feasibility and replicability and things like that. I would really like to repackage it into something that is more concise. I have to be careful how I say this because not something that is more user friendly, because no one has any complaints about that, but just the bulk of it. Just taking out all of those extra pages would make a difference.
The other piece of feedback we’ve gotten is around the practical skills test which is not available to the public because it’s very geographically specific. There’s one for each module which we used in our research to look at outcomes. It’s a combination of multiple choice and true/false and then open-ended questions. The open-ended questions are things like “identify three places where you can go and get food for free.” And it’s very specific to their location to identify what a clothes pantry is, or what a food pantry is, or where a soup kitchen might be available. And so, another huge project that I really want to work on is to develop a guide that can be used with it so it can be used in geographically diverse locations, and it can be disseminated, because people really want it.
Jess: What was it like to work with peer mentors and use what is often called Participatory Action Research where you’re involving people with lived experience? What was that like?
Christine: That was really the most important piece of that. We did that from the beginning. The piece I mentioned about having the peer mentors reviewing it was near the end. But from the very beginning in Chicago, we involved people with lived experience in mental illness and who had been homeless or were currently homeless to go through and look at of it. That’s how we picked the four modules initially and how we picked the sessions and decided what was most important to include based on their experiences and what they would have liked to have had presented to them when they were homeless and also what would be useful to them after they were housed. That was one of the most gratifying things was to have people who have gone through the modules with us and then changed their living situation tell us that they went back and used the tools from these modules to adapt to new situation. One of our concerns was were we contributing to hording situations by giving them all this paper, but it turns out that they use them.
Jess: Congratulations! That’s wonderful to see such tangible impact!
Christine: And if I could just add, in addition to people with lived experience that were involved in developing it, we also really involved staff from the very beginning. That’s who we were developing it for. We weren’t developing it for OTs, we were developing it for staff in primarily social service agencies to be able to use it and so we wanted to know it would be helpful to them. So that’s why there are so many instructors’ guides included.
Jess: Were you able to reduce some of that redundancy and reinvention of the wheel that you talked about?
Christine: Yes.
Jess: You mentioned that you are an OT, and you would love to see more OTs working in this field. How did your training and experience as an OT influence your work on the life skills manuals.
Christine: In two main ways. Theoretically, it really comes from an OT perspective of looking at the person from a strengths-based perspective and looking at the individual as a whole person. I think that strengths-based piece is really critical because it’s what has allowed a lot of people to benefit from it who didn’t think they wanted to participate or would need it. They came into the group and saw that it was a social learning model in the groups so that everybody has something to contribute; the group leader is not an expert by any means. So that’s one perspective.
The other big one is our knowledge in activity analysis and breaking things down into small, doable parts. So, all of the sessions are very detailed in terms of breaking it down into what you need, kind of how you’d run a therapy group, and then there’s also ways to adapt it for different levels of functioning. So, some of the activities that require reading, if you have people who can’t read or can’t see, how you might do that activity differently, or how you might grade it up if you have higher functioning people, how you might divide people up into groups and make it more competitive or something like that.
The other piece is the harm reduction approach, which isn’t so much an OT thing as a public health approach. The harm reduction approach has never really been used in this area. Harm reduction is what we think of with needle exchange programs or safe havens where people can decrease their use of drugs, for instance, but not be asked to stop. So, in food management, ideally everyone would have healthy food habits every day but that’s just not realistic, so instead we might look at it over the course of the week, if you can get some protein one place one day and from another source another day and piece together food stamps and food pantries and sharing food and that kind of thing. So, we try to take a broader perspective.
Jess: We’ve been filling orders for the life skills manual for ten years now. We’ve sent literally thousands of copies, and it has gone around the world. What impact do you hope it’s having in the community?
Christine: I hope it is helping people function better. I hope it’s helping both the staff do their jobs easier and more effectively and I really hope it’s having an effect on the people who need to learn life skills. I think it’s touching a tiny percentage of people, really.
Jess: Whenever we go to conferences, we bring a printed copy for people to page through and the feedback we get on the ground is “Wow, this is amazing! I would love to take this to work with...” and then they mention so many different types of populations: people who are transitioning from institutions to group housing to living on their own, for example. When you were developing the manual, were you aiming for it to be extensible to different groups?
Christine: Absolutely. So, and that’s one of my fears is that people might think it can only be used with people who are homeless or precariously housed or who have serious mental illness. I think it could be used with adolescents; I think it would be a wonderful high school curriculum. Whenever I’ve done training sessions, all the adults in the room say, “can I take this home and use it with my kid?” There are just some very practical things in there. I also think people who are transitioning out of correctional institutions. People transitioning out of or into any situation where they haven’t had to do these things is really who it’s for. There are some things in there that relate to mental health, that relate to being unhoused, but many of the things are much broader. Like there’s a unit in there on bed bugs in the individual workbook that we developed because we were at a site that had a huge bed bug outbreak and the way they were dealing with it was not effective. So, the interventionist at the time created a whole unit on bed bugs. People get bed bugs in their home all the time. You bring clothes home, you go camping, whatever, it doesn’t mean that there’s anything wrong with you or that you have a disability.
Jess: So it’s OT month in April. What advice would you give to up-and-coming OTs who might be interested in following a research versus a practitioner path?
Christine: Get involved in research in some way. So, either to get involved in collecting data as part of a research study, if they have an opportunity to research study in class, if that’s an option, that’s the best way to find out if you like it or not. To get a PhD instead of an OTd or some type of research degree. That’s one of my concerns about the field of OT is that with post professional OTDs being so “easy” to get in terms of the time frame, usually 2 years and much less expensive in time and money than it is to do a PhD or a research degree, I really worry that we’re not going to have researchers. The other way is to partner with a college or university nearby if you’re interested in being involved. Academics are always looking for partners. There are also some really unique things created recently to help develop clinicians into researchers. Through the American Occupational Therapy Foundation, the STRIDE committee (which is Standing Together for Racial Inclusivity and Diversity in rEsearch) has a grant mechanism that is for clinicians, so the person has to have completed their OTD, but it gives them a small pot of money to do research with a research mentor. So, there are a lot of ways to get involved without being a full-time researcher.
Jess: You talked a little bit about what you’d like to see happen with the life skills manual. What do you see in the future for you and your relationship with the LSM? What’s the next step in its path?
Christine: Two next steps. One I am looking with someone to partner with to really work on the practical skills test. I don’t have the resources at my current institution to do that kind of psychometric testing that needs to be done, so I am looking for someone to partner with to do that. What I would really like to draw is on the people who have given their information to you to be contacted that have used the manual. The other next step is to partner with people to be able to use it with different populations and get it down to a reasonable size that is more manageable for people to use.
Jess: Could you see it turned into an app or a tableted program or something?
Christine: Yes, that’s my other idea. I think it’s nice people can get it electronically now; nobody prints it because it’s so much paper. So, I think, though, to keep the cost down, to have it as an app which could be easily updated. Also, if there’s a way, we could help use the practical skills test in a more reliable way would be to have that in an app where we could then put information in. Grading those practical skills tests was very time consuming, we would have two people grade each one and then if there was anything they disagreed on it was reviewed by me or someone else to come to consensus for the open-ended questions. That’s why it hasn’t been disseminated. That needs to be refined a bit, but I think certainly it can be done. We could capitalize on AI in some way to grade those open-ended questions.
Jess: What else are you working on now?
Christine: A couple of projects. I’m working on a school project where we are implementing Every Moment Counts, which is an intervention developed by Susan Bazic which has been widely implemented. We’re doing that in schools in Springfield with individuals who are very low income and low resourced to see if that’s effective in training teachers in the schools in implementing that. And then the other projects that I’m currently involved in is as more of a qualitative research consultant so I worked on a project with Boston University Medical School with individuals who are HIV+ and have substance abuse issues. Those individuals with immunotherapies are living a lot longer, but they’re aging a lot faster, so there’s a high prevalence of falls and things like that. So, I did a project where we developed a falls prevention intervention that was virtual.
Jess: What was it like to be a NIDILRR grantee and part of the NIDILRR grantee community?
Christine: NIDILRR’s great, I review for NIDILRR every year. What is unique about NIDILRR that is different from other funding streams like NIH I think, is that it’s very much geared towards helping the researcher develop and involving people with lived experience, which are very important values to me. I think that that is one of the unique and maybe unknown things about NIDILRR and maybe people don’t recognize that. I also found the project officers very helpful in troubleshooting. You can imagine that recruiting was an ongoing issue for us, especially when we were working on Boston with people on the streets and people who were completely unhoused. I found them to be very helpful and very accommodating with no-cost extensions to be able to reach our numbers.
Jess: You mentioned that you just finished working on the peer review for the grants. Is that something that you would recommend to an up-and-coming OT who wants to get involved in research? Would you recommend they get involved in that?
Christine: Absolutely! I think that peer reviewing grants and articles is the best continuing education things I do for myself. I learn so much in seeing different people’s ideas, seeing what doesn’t work, seeing what from their perspective makes perfect sense but from the reviewer’s perspective it does not, and the importance of getting feedback from multiple people and partnering. I think that other thing I really see as a reviewer, which makes me sad, is there are always grants that are submitted by people who don’t have grant writing skills. I was very lucky at the U of Illinois in that I was a fellow of the Center for Outcomes Research and Education which really focused on grant writing. I really learned how to write grants, and that doesn’t happen everywhere. So, we’ve got grants where the ideas are really great, but they’re just not developed. I want to say, “hire me to help you write that!” They’re great ideas that should be done.
Jess: Can you suggest some resources for people to tap into to learn about grants writing?
Christine: NIDILRR does offer a workshop, I think it’s in the summer. There are other grants writing workshops that you can find. I think they’re well worth it if you don’t have that experience. But I think the other thing is really partnering (I keep going back to partnering but it’s so important) with somebody who has experience. My first NIDILRR grant was in domestic violence, I actually partnered with somebody in our disability and human development department at UIC who was a long-time NIDILRR grantee. He came on as my co-pi to help me manage and troubleshoot the grant. So that’s how I got my first grant as PI by having somebody there who could help support me. I’ve done that with other people, where my role is to attend their meetings, and help when they run into issues. I usually have some small piece that I work on, usually some qualitative piece, but my real role is in helping them learn how to manage a real grant like that.
Jess: This has been really enlightening for me to learn how the LSM was born and what an impact it is having and will have on the community. We’re certainly excited to continue distributing the manual to the community. If people want to learn more, is there a way they can get in touch with you?
Christine: Yes, they can email me at christinehelfrich@gmail.com is the easiest way.
Jess: Any other last words of wisdom for any aspiring OTs and OTs in research out there?
Christine: Take a risk! Go out into the community and do what you think OTs should be doing because it’s really an exciting place to work.
Mark: This is Mark Odum, and I would like to thank you for listening to the latest episode of NARIC’s Spotlight Podcast. I found Jessica’s and Christine’s conversation to be very informative and I look forward to seeing the results of Christine’s research, where the Life Skills Manual goes from here, and what current and future occupational therapists bring to the fields of disability, independent living, occupational therapy, and rehabilitation research. All the resources that Jessica and Christine mentioned are available in this episode’s description. To learn more or to obtain the Life Skills Manual, please contact one of NARIC’s information specialists to assist you. Thank you again for listening and I look to our next episode.