Theme 1. patient’s journey to achieve depression care
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Facilitators (Clinician perspective)
Clinicians described the depression-related quality improvement projects at each clinic, additional staff training, and television advertisements for antidepressant medication as facilitating the journey to achieve depression care.
Clinician ‘a’, independent of the practice’s QI project, had trained staff to be compassionate with upset or irritable patients because these behaviors could be manifestations of depression. Clinician f felt patients’ references to television advertisements for antidepressant medications were a sign of decreased stigma related to both the disorder and its treatment. Several clinicians observed a trend toward patients more frequently listing of depression as a chief complaint than in past decades.
“So we’ve come a fair distance since then so I don’t have to spend quite so much time helping them understand what the diagnosis means and what the biologic basis may be and what treatment may be of some benefit and how long treatment needs to last in order to be effective and what is relapse and it’s much easier these days than it used to be.” [Clinician b]
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Facilitators (Patient perspective)
While clinicians described systems-level facilitators, patients focused more on relational facilitators. A number of patients described supportive family members and a friendly office atmosphere as improving the journey to achieving depression care.
“And you know, the thing is about [clinician e’s] office is that everybody is always smiling and laughing and you know, how sometimes you go into places and there is a grumpy guy. … friendliness helps me to be able to say anything I feel I need to say, you know… Cause I’ve been to doctors where they are just intimidating to me. You know. And ok, it’s like let’s get this checked out and let’s get out of here.” [Patient 22]
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Barriers (Clinician perspective)
Prominent barriers included lack of access to specialty mental health care, fear of opening “Pandora’s box” when considering a discussion around depression, challenges billing for depression counseling, and poor patient follow-up. Several clinicians noted that private psychiatrists were too often closed to new patients or were strictly fee-for-service. Clinician f, working at the federally qualified community health center, had telephone access to an on-call psychiatrist for consultation.
Manipulating billing codes, for example coding a symptom of depression such as “insomnia” instead of “depressive disorders,” to receive payment for treating depression was a barrier acknowledged by one clinician. Five clinicians lamented their newly diagnosed depressed patients’ poor follow-up rates following depression diagnosis.
“Somewhere between 30% and 50% of people do not come back for follow up. But those who are really depressed or really interested in making changes in their life, generally do come back.” [Clinician a]
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Barriers to achieving care (patient perspective)
Again, clinicians focused on systems-level barriers, while patients generated a list of systems- and competency-level barriers. Patients concurred to an extent with clinicians that a fragmented health care system creates barriers to achieving care.
“So the cost to go to a psychiatrist is just ridiculous, and so I stayed within the bounds of what the primary care physician would do because I could get treated right away… It [depression care] has to be very easy to get to. You ask a depressed person to jump through too many hoops, big massive hoops. I’m not going to pay $250 a visit to see a psychiatrist. But not only financial hoops. It’s just a wall that, you know, is going to stop - would stop me from getting what I needed. They could make it easy for me, even if it was, “Okay, just give me one med to get me going. When I feel better and recover, I’ll take the longer route… Maybe the primary care facility could have a once-a-week psychiatrist.” [Patient 17]
In contrast to the clinicians, more patients seemed to perceive stigma as a persistent barrier.
“You know, yeah, I think there’s still, especially for men, there’s still a stigma associated with depression. I think that a lot of, you know – a lot of guys in general don’t necessarily know that they might be experiencing some depression and, therefore, don’t know what to do about it. Yeah, that’s the menace.” [Patient 17]
While most patients felt their current primary care clinician spent adequate time talking about depression with them, a number described moving on from previous clinicians for a range of different reasons.
“I did go on medication then and was on it for about 6 months and then went off of it… I think that was why I stopped because it wasn’t helping… But I was going to a different doctor then - one of those who rush you in and rush you out and this pill is going to cure everything. And it didn’t.” [Patient 29]
A few patients expressed concerns that primary care clinicians lacked expertise to treat depression.
“I don’t work with primary care on depression. I work with my therapist and my psychiatrist. I think the primary care physician would do well to just stay in the loop so they know what kind of medication this person’s and an overall view of how things are going.” [Patient 18]
Although some patients discussed their mental health diagnosis with front desk and medical assistant staff, one patient viewed the staff as potentially harmful to achieving depression care.
“For me… mental health has such a stigma that you know, you don’t want a lot of people to know about it. I’ve worked in a doctor’s office before … and truthfully I know the way people talk behind closed doors. … the least personal information that you really give them, I think the lower you fly on the radar and the better it is. You are there to talk to your doctor not to make friends.” [Patient 4]
Theme 3: creating an effective therapeutic space
i.
Facilitators (Clinician perspective)
Clinicians described the therapeutic space with a range of potential components (primarily clinical and/or relational domains of care).
Subtheme a – antidepressant medication
Clinician b referred the patient to psychiatry if a single antidepressant medication did not appear to be working. Clinician ‘a’ felt that an antidepressant was “almost necessary” if the patient is unable to change relationships, be more active, or get more sleep. Clinician c subspecialized in mental health care, and was proficient prescribing multiple concurrent psychotropic medications. At practice C the clinician started the antidepressant and often referred patients to a co-located psychiatric office for ongoing medication management.
Subtheme b – counseling/psychotherapy
All clinicians strongly advised counseling with or without antidepressant medication. Clinicians e and f observed a preference trend by gender.
“Many males will find it easier to take a pill than to go to counseling… But some are already in counseling or in those cases where I think it’s mild or they are not ready to go on medicine I’ll say well, have you thought about that?” [Clinician e]
Subtheme c- primary care clinician’s role
All primary care clinicians described multifaceted approaches to handling depression. Components included medication, counseling, physical activity, social support, diet, sleep hygiene, fish oil, vitamins, acupuncture, seeing a holistic practitioner, and other approaches. One described himself as directing ‘team effort’.
“If anything I’m the quarterback of this and I have some education with the biochemistry of this, but I don’t have … and I’ll say this to you – I don’t have the skill set to ask you about your mother and why your wife hates you and this and that… We need to get someone else in here as a team member to participate in this and you know, and sometimes that is very hard for people. And also you need to start exercising…And Patty is our new nutritionist.” [Clinician d]
Three clinicians required newly diagnosed patients to follow-up for a recheck within 1-3 weeks. Patients not complying were allowed a 1-month refill of antidepressant medication in order to reschedule the follow-up visit.
Empathetic listening was a relational domain of care described frequently by several clinicians as vital to meeting patient expectations. Clinicians describing themselves as empathetic listeners were also more likely to report falling behind often during their clinics.
“For me the biggest thing is that uh people feel like that they are listened to. I think that I find that a lot because people say that to me. ‘You really listened to me’, and I feel like people really want that. It’s really harder now because you have to see a lot of patients but I don’t know if you have to spend a whole lot of time, but I think you have to be there when you are there. [Clinician f]
Subthemes d and e – physical activity and social support
Clinician f described physical activity as one of 4 approaches he always recommended (also medication, therapy, and better nutrition), and several discussed ‘social support’ as helpful.
Subtheme f – depression prevention
Several clinicians discussed antidepressant medication to prevent recurrent depression. Clinician b raised the idea of providing antidepressant medication to susceptible persons at the advent of stressful situations or depressive symptoms and prior to descent into major depression. Clinician f noted that some of her patients develop skills that they use to prevent recurrence, although the specific skills were not listed.
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Facilitators (Patient perspective)
Beyond the clinicians’ constrained and generic descriptions of the therapeutic space, in virtually every case patients described how they sought to bring together additional resources beyond their clinician’s recommendations that helped them in coping with depression. For both clinicians and patients the relational domain was most commonly described. While clinicians adhered closer to ‘evidence-based’ approaches (medication, counseling, physical activity), patients recruited a much broader range of elements, and seemingly unbeknownst to clinicians created unique personalized therapeutic spaces. Elements could be recruited at different phases of handling depression, from severe, prolonged bouts of depression, to handling a bad day, to preventing relapse.
Subtheme a - antidepressant medication
The role of antidepressant medication was complex. Patients often perceived medication as both a treatment and prevention strategy. Some patients perceived little need for other approaches to handling depression.
“I don’t know of anything beyond that because the Zoloft has worked very well for me and continues to. I’m just as happy as a little clam… I didn’t find the therapy of much use for me. The only thing that has really just worked fine is the Zoloft. [Patient 19]
More so than other elements of the therapeutic space, patients were very often ambivalent about taking antidepressant medication.
“I think a disadvantage of it [antidepressant medication] is you become used to it. Your body gets used to having that instead of, “Do you need more of it to keep working?” Or what if you eventually want to get off of it? Which I do. It’s been hard. I can’t really get off of it without relapsing type thing… So like throughout my life, I’ve been to the point I’ve been on it, I’ve gotten off of it, been on it, gotten off of it. It’s been back and forth. I know that I probably need to be more steady and stay on it or find a different way to deal with it.” [Patient 20]
Many patients were on long-term antidepressant therapy and several referred to worsening relationships when trying to wean off antidepressant.
“She recommended Celexa which I’ve been on, seven, eight years now… I ended up having to make the decision to stay on my Celexa and not breastfeed. But it’s just – when I came off, I was so miserable and so emotional. It was not good for me. It was not good for my family;” [Patient 11]
Subtheme b – counseling/psychotherapy
Some patients provided windows into the beneficial mechanisms of psychotherapy.
“Well, first I was working to see if I could figure out why I have such a social issue. Was there something I didn’t understand and I found out it appears to be all about self-esteem and body image when I am around people. And then we started dealing with working on controlling my cognitive reaction to my external environments. Like I can’t change the situation, but I can control my reactions to the situation. And a lot of exercises on how to manage my self-esteem and deal with working through the anxiety instead of fighting it”. [Patient 10]
Subtheme c- primary care clinician
As noted previously, patients were very appreciative of clinicians who spent time listening to and discussing their issues. Some patients noted the clinician’s role in prescribing antidepressant medication and referring to therapy, and one [patient 21] confirmed the more complex ‘multifaceted’ approach to depression that her clinician [clinician d] described herself as taking. Patients also valued those clinicians whom they perceived as highly skilled in treating depression.
“The specific doctor [clinician b] that I see said, ‘Hey, you know, [clinician c] is really up on this kind of stuff and you might really want to talk to her.’ I did and I really found that she is way more in tune with depression and, basically, what she call the serotonin imbalance… she has apparently studied and reads up on it and just seems way more knowledgeable about what’s going on in the treatment in that area.” [Patient 14]
Subtheme d – therapeutic aspects of work
While just one clinician commented briefly on work, in reference to a young, physically healthy patient asking for disability due to depression, several patients described working as a way to stay positive or to alleviate mental distress.
“Yeah. Cause if I do have anxiety it’s a good stress. Cause I’m on like… it’s almost like I’m on a deadline every minute… you’re just working. You are doing your shift. You are not messing around with each other. And for me that was like good stress…” [Patient 25]
Patient subthemes e-k were either not mentioned by clinicians or were only mentioned in passing.
Subtheme e - values
Personal values may be important for some patients when handling depression. One patient framed physical health not only as a personal value but as a potential influence on depression.
“And I mean… I’ve even went out and bought the South Beach Diet book and I’m going to be on the South Beach diet to keep my heart strong and be around for my grandchildren… and having been a product of depression my whole life and seeing what it did for my mother. She didn’t even want a stent put in her arteries. She just said let me die… It’s a debilitating disease. And that’s why I’m not ashamed of it. If I broke my leg I’d go get it set”. [Patient 22]
Subtheme f – family and nature
A number of patients described the critical role of family members in helping diminish depressive symptoms, and a handful described interactions with nature as part of the therapeutic space.
“My family had an intervention, basically, and said you need to go get on medication because you are driving yourself crazy and the rest of us. Not doing any good for anybody. So I said Ok. An I went to the doctor and got the pills…. How can you be sad or depressed or anything when you get on a horse and you go riding around and you just take in all the nature and you know, how can you have a bad day? If you have a bad day go for a ride. It’s totally different. It just changes you.” [Patient 26]
Subtheme g - faith
Faith is another factor that a handful of patients described as important to living with stress and depression.
“So I think faith is vital. My depression… I think everything just kind of… to me it all starts there. My religion, my faith has to be my base and the core of everything I am. It is something that keeps me grounded and keeps me hanging on when I just feel like running off and screaming or something.” [Patient 21]
Subtheme h – positive memories
A patient with prolonged grief after a friend died focused on positive memories of the deceased as both therapeutic and helpful to others.
“Well, he [clinician e] listens to me and he thinks I know myself well enough. I had dealt with it and put things in to a place in my mind where I could deal with it and treasure the memories and focus on the positive, the good memories. I needed to be around positive people and myself be positive and not wallow in this… it is a therapy for myself… I was talking to somebody I admired and felt close to and I said oh, you know, this was a part of [friend’s name]. I try to keep a part of her around me all the time.” [Patient 27]
Subtheme i - reframing depression experience
One patient described how her own approach to work took on new meaning as a result of having experienced depression.
“I work with a lot of elderly folks…. They just take whatever pills the nurse brings in a cup and they take so many they wouldn’t know if there was one being missed. And so… I try to look out… as you can imagine I’m very attuned to people’s needs in this area [depression] when I’m involved as a social worker…” [Patient 7]
Subtheme j – preventing recurrent depression
A recurring theme was the importance placed on listening, empathy, and striving to understand the patient’s experiences and preferences. Patients perceived long-term antidepressant use as helpful to prevent depression relapse. Interviewees used the primary care clinician as a way to prevent recurrent depression, for instance going to the doctor’s office when they felt their mood begin to worsen.
“…sometimes my depression is good. If I can tell that I’m like not feeling very good, at least now I’m able to let other people know, especially my doctor, what’s going on… one of the biggest things is that I felt that she truly did care. [Patient 15]
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Barriers to an effective therapeutic space (clinician perspective)
Although expecting compliance to a guideline-based treatment protocol may improve outcomes for some patients, it may worsen outcomes for others, e.g. non-adherent patients who have access to receiving their antidepressant medication terminated. Two clinicians raised the issue of antidepressant side effects and non-adherence as barriers to achieving better outcome. Patients’ need to shop for a counselor or therapist with the right ‘fit’ was raised as an issue by 2 clinicians. Echoing patient concerns from theme 1, clinicians cited short clinic visits and busy schedules as limitations to an effective therapeutic space.
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Barriers to an effective therapeutic space (patient perspective)
When asked about communication between care team members, several patients noted that meaningful communication between members of the care team was uncommon. One patient took it upon himself to keep each clinician informed. A few patients noted that severe depression could be so overwhelming that they would be unable to activate or engage in aspects of the therapeutic space.