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Hope & Fear: Consumers, Psychiatric Medications and the Therapeutic Relationship Consumers for Knowledge Exchange and Research (ConKER) Primary author: Ruth Gumpp, M.A. Background CONKER was established to engage psychiatric consumers as partners in the research enterprise, to investigate questions of interest and relevance to persons receiving psychiatric services. CONKER aspires to a participatory action research model. CONKER is currently made up of three consumers, two practitioners and a UBC professor. This project This study explores the role psychiatric medication plays in the lives of mental health consumers, and, in particular, how this experience of taking medication is affected by the relationship with the prescribing physician. Rather than concentrating exclusively on issues of adherence/non-adherence to medication regimens, as other studies have done, our goal was to unveil the complex lived experiences of consumers, their attitudes, beliefs, and behaviour as they pertain to medications and the therapeutic relationship. Methodology Study conducted with UBC ethics approval. Purposive sampling and recruitment of 15 adults who had been prescribed psychiatric medications for at least six months. One-on-one semi-structured interviews. Following this, two focus groups to clarify and elaborate preliminary findings. Transcription of tapes (about 400 pages) and thematic analysis. Limitations Only English-speakers. Hospitalized persons excluded. “Demand characteristics,” i.e. study held under VCH auspices and interviews conducted at a VCMHS team. Sample more “middle-aged,” less “young adult,” and the majority in treatment > 10 years. Volunteer bias? Participants may have experimented with medication at earlier points in their lives, but none were currently non-adherent, according to their own report. (Note by contrast that 74% of subjects in the CATIE study discontinued medication before study completion at 18 mos.) Participants appeared to be resigned, for better or worse, to being on psychiatric medication, and no one was unequivocally anti-medication. Results: 1) Participants Ten women, five men, ages ranging from mid20s to early 60s. Eleven were either current or previous clients of VCMHS. Thirteen were presently taking psychiatric medication. Diagnoses, volunteered by the participants, included schizophrenia, depression, bipolar, OCD, GAD, PTSD and borderline PD. 2) Accessing care Delays encountered: In accessing mental health teams; In GP referrals to specialists; In getting a diagnosis; Waiting for entry to outpatient programs. “I have wasted a lot of years” Respondents said that by the time they reached out for support, clinicians should be aware that this meant they really needed help, right now. 3) Continuity Continuity among care providers was seen as crucial, and may even compensate for other deficiencies in the relationship. Problems with continuity: high staff turnover, telling the same story over and over, starting from square one. Starting with a new caregiver could be seen as daunting even when the relationship with the current physician was experienced as dissatisfying. 4) Transitions Issue of being “cut loose” if you become “too well.” Since it takes time to tell your story and build trust, a change of doctors – either because the physician left the program, or by moving into a new catchment area – was seen as intimidating. Even when consumers were unhappy with the current physician, contemplating a change was an anxietyproducing challenge. “I don’t want to do that [change doctors], no, I would have to start all over again and I don’t think I’m well enough to do that. It’s harsh to come into a new team….” 5) Elements of the relationship Many participants were positive about their physician/psychiatrist. However…. Some expressed that there was an overemphasis on medication, that other existential problems were being ignored. Not enough counseling/psychotherapy. Some found the meetings too businesslike, with “a formula of questions.” “I was looking for more comfort, maybe….whereas it was all business and all medication.” 6) Too little time? Doctor sessions at the MH teams were usually of short duration, 15 – 30 minutes, especially if the client was seen as “doing well.” Satisfaction with the visit did not necessarily depend on the length of time spent together, but on how the client valued the quality of the encounter and whether needs were addressed. “If you have questions they’ll answer them….but they don’t really go out of their way to see how you’re doing….trying to get at the bottom [of things].” 7) Side-effects Side-effects identified as “most frustrating” aspect of treatment, however a “necessary evil.” “…the side effects are huge – but if I don’t take [medication] – then I get into hearing voices, so you know what’s the best of two evils.” Seven of 15 attributed weight gain to meds, some gaining as much as 50 pounds. “Dulling,” “flattening” effect also reported. When reporting unusual adverse effects consumers were not always believed. Ambivalence about hearing the whole list of possible side-effects. 8) Stability/Stagnation Reports of being “stuck,” achieving some degree of relief but not really feeling well. Emphasizing “stability” had a flipside as it did not necessarily mean that the best health outcomes had been attained. Physicians staying with “tried and true” treatment. “They’re more interested in keeping you calm, and keeping you level, and keeping you out of hospital….they want to stabilize you, they don’t want to improve your situation really.” 9) Motivations to take medication: fear, Participants spoke about fear as a motivating force in staying on medication: - Fear of losing program eligibility; - Fear of withdrawal effects; - Fear of recurrence and relapse; - Fear of hospitalization and “going back to that dark place,” “losing my furniture,” “getting shock treatment,” “losing a lot of your skills,” “going back to square one.” ….Hope…. Of finding the “right” medication: “That’s the key.” Of being able to live without medication one day. Of becoming “normal” again. Of not being “down forever.” “I’m hoping that I’m getting recovered. It should be like before I was sick.” ….and (finally) lack of options. Going “cold turkey”: “Not nice”; “Dangerous.” “I don’t want to make a mistake.” “Hell if I do, hell if don’t” [take medications]. “It’s a life/death matter for me.” “There’s no other choice for me.” 10) Non-adherence A number of different reasons were given for unilaterally deciding to take less/more than prescribed: Rejecting the diagnosis and need for treatment; Concern about side effects Feeling good/bad Not wanting to become addicted Experimenting Seeking more control “I wanted to try life without medication….I would see how it would feel.” 11) Equal partners? Participants spoke about feeling involved at times in the treatment process, being able to negotiate and discuss pros and cons of medication, “like partners.” This was not consistent, however, with respondents saying they were excluded at times. “He’s up there and I’m down here.” A potential flipside to greater involvement could be that the consumer might feel that they are expected to take responsibility for decisions for which they which they have not been sufficiently prepared. “It would be easier if they decided for you, [provided that they] gave you a guarantee.” 12) Taking charge The idea of confronting the physician with concerns about treatment could be overwhelming. “It’s hard when you’re not well to be your own advocate.” The majority believed that the doctor had to take charge in times of crisis. Participants spoke about a need to balance their own interests with trust in the clinician, and being loyal as a patient. 13) Trust “Trust is huge. Trusting someone makes you far more likely to listen to their suggestions and try their ideas.” Trust could take time to develop. There was respect for the doctor’s expertise among participants, who recognized an asymmetry of education and knowledge. Trust is necessary when treatment seems like trial and error. Continued…. According to participants trust was enhanced: by taking enough time and addressing all the issues raised; by the belief that the doctor was acting in your best interest, and by the belief that the doctor also trusted you; Trust was diminished : by not “getting better,” too many side effects, or the doctor not seeming to tell the truth. Some final words…. “The relationship isn’t so different than any other type of professional relationship….you expect someone to be forthright and to be honest and to be sincere and to be nurturing and to be caring.” Policy Suggestions With continuity of care so important, consider ways to minimize staff changes. For example, make the “catchment area” rule flexible, or client-driven: if he/she prefers to stay at the old team, support that choice. Re. discharge from the team, support client choice in this area. Clients appearing “stable” or “high functioning” may still need the support of a team. Make the “exiting” client-driven or at least a shared decision. Ensure follow-up is in place. Team eligibility not be contingent on being on medication.