Learning through focus groups: How Mental Health Consumers and Clinicians perceive participation within treatment planni

1. Learning through focus groups: How Mental Health Consumers and Clinicians perceive participation within treatment planning process, and its impact on service delivery* Erica Gosselin, M.S., Erica.Gosselin@MHCD.org Steve Baumer, B.A., MHCD Antonio Olmos, Ph.D., MHCD Kristi Helvig, Ph.D., MHCD Mental Health Center of Denver

2. Objectives Determine how consumers and clinicians define participation in the ISP* to improve quality in the treatment planning process. Examine Clinician’s and Consumer’s perception of Current level of participation in the ISP process Desired participation level in treatment planning, and Changes that consumers and clinicians would like to see in terms of treatment planning.

3. Rationale for the study The idea for this study was prompted by results from the 2005 MHSIP Consumer Survey given by the Colorado DMH. This survey asked mental health consumers to rate their satisfaction in five different domains: Perception of access, Perception of quality/appropriateness, Perception of outcome, Participation in service/treatment planning, and Overall consumer satisfaction. Only 53% of the participants agreed that they participated in service/treatment planning (much lower than the national average of 81% on this measure, as well as the Colorado average of 67%).

4. Consumer’s Focus groups 10 focus groups were conducted with 65 adult consumers Medication only consumers were excluded from the groups The focus groups were conducted and analyzed using Krueger and Casey’s (2000) approach to theme discovery.

5. Clinician’s Focus groups 8 focus groups were conducted with 48 staff (case managers and therapists) Staff was invited to discuss participation and recovery during lunch One of the groups included case managers from our Rehabilitation Services site (2Succeed)

6. Focus group questions Leading questions How would you define participation? Describe your level of participation in creating/developing your treatment/service plan/ISP at MHCD? Does your treatment/service plan/ ISP reflect the treatment you are receiving or wish to receive at MHCD? Would you like to change your level of involvement in the treatment plan process? If so, what would that look like? Is there anything that would make you feel more comfortable in asking your case manager/therapist questions about your treatment and medication?

7. Focus group questions (cont) Is there anything that would make you feel more comfortable in asking your psychiatrist questions about your treatment and medication? How would you define recovery? How has the current treatment plan helped in your recovery? Questions were slightly modified for the clinician’s focus groups We included some questions about features in the electronic medical record (Netsmart eCet)

8. ResultsHow Consumers define Participation Most consumers agreed on a similar definition: Described as being “involved” in their treatment, and as a collaboration with their case managers: “Getting involved” ‘Making a contribution to the overall group effort” “Interacting,” “Cooperating” “Involvement,” “Coming to agreement” “…participation is a two-way street”

9. Perception of current level of participation in their Treatment Plan Many consumers knew what an ISP was (although the term “treatment plan” was more recognizable than ISP). Consumers remembered completing an ISP with their case managers*. “I was very much involved” “I was very involved” “I feel like I am sharing it with him (Case Manager). We are doing something”

10. Most of the consumers recognized the purpose of the ISP as a tool for their recovery. Not all who remember completing it were given copies of their treatment plan, or remembered being given a copy of the treatment plan* “…because I asked her for a copy and she told me I did not need one and I said I would like one.” “I had to ask for it.” “Yeah, I never got a copy of mine either…I signed them but didn‘t get a copy“ “Here at [site], I don’t think they hand anything out to us. We just sign it and they put it in our file.”

11. Some consumers did not feel they actively participated in the development of the ISP or found the process confusing For some, the initial treatment plan is completed when they have not yet been stabilized on medications or were very sedated due to the medications. “I think I was just really overwhelmed with the questions. By the end of it, I don’t know, I was just really overwhelmed with the questions.”

12. Others who participated felt that it was merely a formality and not necessarily something of use to their individual treatment “She handed me a piece of paper with questions and I just wrote answers to it and handed it to her and I have not seen it anymore.” “In regards to the hour and a half of questions…I think they are computer generated. Some of it was very valid for myself and then others it was just off the wall where they came from.” “It was screaming red on her computer so it was the only reason she brought it up, she had to do it.” “…it was something she had to do, it was a required thing.”

13. Consumers who did not feel that their ISP was being used to guide treatment often cited time factors as an issue: Seems like they never have time for you after they get it all done..you try to work on something and they never have time for it. They skip over it…” “With my case manager she did the ISP with me and ever since then she really doesn’t seem to have time for me…she is either going out the door or going on call. She doesn’t really talk to me about it.”

14. Staff Turnover could hinder use of the ISP to guide treatment Many consumers spoke of having positive relationships with their case managers, but felt frustration with the constant turnover. “Nope - they don’t even go by the ISP…I have had six case managers since I have been here.” Issues with continuity of care regarding implementation of the ISP due to this turnover. “Each time I go to the doctor, the doctor has quit.” “Everybody experiences a big turnover with doctors.” “And I have had three different psychiatrists in six months.”

15. Consumers perception of relationship with their Case Managers Consumers who were the most satisfied reported having a strong relationship with their case managers, and felt that they were being heard. “I talk to mine all the time. We talk freely.” “I feel comfortable.” “They are very good at taking care of us. Attending to our needs.” I don’t have problems with my case manager, she is always there for me. She always has a good answer, suggestions, or advice.”

16. Consumers perception of relationship with their Psychiatrists Consumers expressed more dissatisfaction with their psychiatrists and felt that their psychiatrists did not have time for them or want to listen to what they had to say “She doesn’t let you talk. She interrupts and doesn’t let you explain…She will sidetrack and go directly to what medicine to put in.” “Sometimes we get rushed.” “No, I don’t think my doctor is listening to me.”

17. Two sites spoke very highly of their psychiatrists and it is unclear if this was due to increased time allotment or simply feeling more heard by their doctor. “She is excellent.” “She is very smart.” “I can relate to her…” “We can communicate pretty good with each other.”

18. Changes Consumers Would Like to See in the Treatment Process More overall input and time to prepare answers for treatment plan Less turnover to facilitate greater use of the treatment plan More direct “hands-on” help from case managers More time with CM’s and psychiatrists

19. Recovery and Consumer perception Consumers felt that they had progressed in treatment and were able to give definitions of recovery, but did not necessarily feel that their progress was solely due to use of their ISP. Many consumers viewed recovery in terms of their medication and substance use, rather than on other domains found in the ISP. “Well, personally I have a dual diagnosis and that just means I am a recovering alcoholic and that I was addicted to pain medicine and I also have a mental illness…and part of my recovery is having my medicine given to me by the week instead of by the month…” “With my diagnosis there is no recovery from that…I am trying to but I am always going to be on meds..If I was fully recovered I wouldn’t be on meds.”

20. Some consumers had noticeably different definitions of recovery and exhibited a more positive notion that people can recover from mental illness. “Being able to accomplish things that you didn’t think you could.” “Recovery is like similar to what she said…being stable and knowing that you can move on to the next level.” “Recovery to me…striving for that goal and it means you sincerely want to get it done that way.” The differences may be due to the stage of progress for each consumer which tended to vary by site (sites where consumers are either employed or working toward employment versus sites where consumers may be working on initial stabilization of their mental health symptoms).

21. Clinician’s Perception of current level of participation in Treatment Plan Clinicians agreed that the ISP in many cases is more a formality The ISP requires to work in some specific areas in very prescribed ways “Generally the consumer will tell me what they would like me to help them with and why they are coming and I let that lead the process and then follow the format of what we have to do with the treatment plan and objectives …. And try to get as much information from that in terms what they want, what they need, how they know…”

22. “…Um, I pull it up in the computer and pretty much follow the format. I ask them specifically, you know, what are your needs and wants? I usually quote them word for word. I put the quotes in there for what they say, because there is a spot in there for clinician input. And then, we go through and determine what their goals are based on what they said they want to work on.”

23. Consumer’s input Despite being a prescribed process, clinicians try to make this a consumer-owned process as much as they can “Oh yeah, they review it and look at it. And I say well you said you don’t want to work on this now, but this is why you are here….can we put something on there? And then I always have them look it over, well they look it over after I print it out and I tell them that we can make any changes to it if we need to if they disagree with it and they don’t like the way it said and I also remind them that we can change it another time to update it, we don’t have to wait six months to do that. “

24. Consumer’s sense of participation Sometimes consumers are not really part of the process. This seems to be due to the ISP “Sometimes it takes an hour and a half and you are getting interrupted at the same time….it takes an hour and a half of a consumer sitting there and they just can’t sit there that long.” P6: (imitating a session) “Are we done yet?, Are we done yet? Are we done yet? Where do I sign, I got to go”

25. Consumer’s goals are not always measurable “I don’t think a lot of the objectives are measurable. I have to go in and I have to change those to make it measurable. ... Most of them are not measurable at all so you end up having to kind of change those. … For example we are going to do x amount of skill building over the next 30 days… so it was a lot of work to initially get those in compliance because I know Medicaid has specifications around those being measurable.”

26. Timing can also be an issue Clinicians felt that it was more important to stabilize the client than to go over goals But the procedure calls for an ISP 30 days after intake and updated every 6 months Clinicians felt that consumer may not be ready to go over an ISP when they have more immediate needs

27. “…On initial meeting for a lot of clients is when I can get them to do an initial treatment plan…..they are not that engaged in it, but I can walk them through the process. To go do a review, they are just not engaged. Six months later they don’t remember ever doing it.”

28. MHCD’s ISP process was useful Clinicians liked that the system was so fully “canned” Easy to fill out Allows them to concentrate more on the consumer needs and less on finding the right goal/word to explain the consumer’s needs Good prompts and reminders of things they need to do

29. Despite our best intentions, some of the instruments and policies are not conducive to Consumer’s recovery Our system is clunky, and do not necessarily promotes consumer’s choice But it is compliant with the State’s requirements

30. Mental Health Centers are left between a rock and a hard place We want to be compliant and make sure we do our best to meet State’s requirements But what we provide to the consumers and clinicians lacks flexibility to cater to consumer’s choices or strengths, or ends up being meaningless to them

31. Future steps Try to implement a process that will provide clinicians with options, but flexible enough that it allows clinician’s and consumer’s flexibility to tailor ISP to their needs Development of some system to create small cue cards that consumers can carry around as goals reminders