52of participation on cl<strong>in</strong>ical outcome was <strong>in</strong>direct, <strong>in</strong> that adherence mediated the relationshipbetween participation and cl<strong>in</strong>ical outcome (Loh, Leonhart, Wills, Simon,& Harter, 2007). At basel<strong>in</strong>e, there were very low levels of consumer <strong>in</strong>volvement <strong>in</strong>decision-mak<strong>in</strong>g, based on a sample of 20 audiotaped primary care consultations fordepression treatment (Loh et al., 2006).Other research has also shown that people who experience depression have generallystrong <strong>in</strong>terest <strong>in</strong> <strong>in</strong>formation and participation <strong>in</strong> decision-mak<strong>in</strong>g with theirhealth care providers, as well as needs for formal decision support for complex depressiontreatment decisions <strong>in</strong>volv<strong>in</strong>g substantial tradeoffs between pros and consof the options (Simon et al., 2007; Wills, 2003; Wills, Frankl<strong>in</strong>, & Holmes-Rovner,2007; Wills & Holmes-Rovner, 2003, 2006). Simon et al. (2007), <strong>in</strong> a qualitativedescriptive study of 40 persons with depression, found that <strong>in</strong>dividuals identifieda need for additional <strong>in</strong>formation about depression and its treatment. Wills, <strong>in</strong> arepresentative sample of 133 people with depression receiv<strong>in</strong>g services from a U.S.health ma<strong>in</strong>tenance organization, found that these <strong>in</strong>dividuals had a variety of needsand preferences for decision support around depression treatment decision-mak<strong>in</strong>g,<strong>in</strong>clud<strong>in</strong>g a preference for SDM (Wills, 2003). Stacey et al., <strong>in</strong> a study of the decisionmak<strong>in</strong>gneeds of people consider<strong>in</strong>g depression treatment options, found that relativelyfew people wished to abdicate decision-mak<strong>in</strong>g to their health care provider ora family member (Stacey et al., under review). In Michigan, <strong>in</strong> an <strong>in</strong>tervention studyof 32 people with co-occurr<strong>in</strong>g depression and diabetes, it was found that exposureto a decision support <strong>in</strong>tervention for depression (support booklet <strong>in</strong> pr<strong>in</strong>t or onInternet) was associated with a significant <strong>in</strong>crease <strong>in</strong> knowledge, decision stage,reduced numbers of depressive symptoms, and lowered stress levels (Wills et al.,2007). However, some research has also documented that people with more severeforms of depression or psychological distress (<strong>in</strong>clud<strong>in</strong>g lack of <strong>in</strong>sight <strong>in</strong>to illnessand severity) may have lower preferences and capability for digest<strong>in</strong>g <strong>in</strong>formationand for <strong>in</strong>volvement <strong>in</strong> decision-mak<strong>in</strong>g (Schneider et al., 2006; Simon et al., 2007;Wills, 2003).Taken together, these studies provide some <strong>in</strong>itial evidence for the <strong>in</strong>terest of personswith depression <strong>in</strong> <strong>in</strong>formation and supportive <strong>in</strong>terventions to aid depressiontreatment decision-mak<strong>in</strong>g. However, consistent with the conclusion of Lev<strong>in</strong>son etal. based on a national U.S. survey, not all people are equally <strong>in</strong>terested <strong>in</strong> full partnership<strong>in</strong> decision-mak<strong>in</strong>g, especially those with more severe distress at the time ofdecision-mak<strong>in</strong>g (Lev<strong>in</strong>son et al., 2005). Almost no <strong>in</strong>formation is available on thepreferences of diverse cultural groups that represent views other than ma<strong>in</strong>streamwhite Western culture. <strong>Decision</strong> support <strong>in</strong>terventions to promote effective SDMmust be designed and implemented <strong>in</strong> ways that can back a range of preferences for<strong>in</strong>volvement <strong>in</strong> the <strong>in</strong>form<strong>in</strong>g and decid<strong>in</strong>g process. This type of match<strong>in</strong>g of needsand preferences with <strong>in</strong>terventions does not negate the spirit or <strong>in</strong>tent of fully shareddecision-mak<strong>in</strong>g and ma<strong>in</strong>ta<strong>in</strong>s respect for persons <strong>in</strong> the design and delivery of <strong>in</strong>terventionsand services.<strong>Shared</strong> <strong>Decision</strong>-<strong>Mak<strong>in</strong>g</strong> <strong>in</strong> <strong>Mental</strong> <strong>Health</strong> <strong>Care</strong>: Practice, Research, and Future Directions
53SDM for Schizophrenia TreatmentBunn et al., <strong>in</strong> an exploratory descriptive study with 96 people receiv<strong>in</strong>g outpatientservices for schizophrenia, found that these <strong>in</strong>dividuals were <strong>in</strong>terested <strong>in</strong> and ableto participate <strong>in</strong> their health care decision-mak<strong>in</strong>g (Bunn, O’Connor, Tansey, Jones,& St<strong>in</strong>son, 1997). O’Neal et al., <strong>in</strong> a study of role preference for SDM among olderadults with severe mental illnesses, found that these <strong>in</strong>dividuals were <strong>in</strong>terested <strong>in</strong><strong>in</strong>formation, preferred SDM with their psychiatrists, and were more <strong>in</strong>terested <strong>in</strong>decision-mak<strong>in</strong>g <strong>in</strong>volvement compared to younger adults (O’Neal, Adams, Drake,& Bartels, 2007). Similarly, Adams et al. found that approximately three <strong>in</strong> fourpeople with severe mental illness preferred a shared role <strong>in</strong> decision-mak<strong>in</strong>g aboutnew psychiatric medications (Adams, Wolford, & Drake, 2007). Seale et al., <strong>in</strong> aqualitative study of 21 general adult psychiatrists <strong>in</strong> the United K<strong>in</strong>gdom, found thatthere was a general commitment to achiev<strong>in</strong>g concordant relationships with consumersaround antipsychotic medication decision-mak<strong>in</strong>g, but that concerns aboutconsumer competence for decision-mak<strong>in</strong>g were a key concern for fully shared decision-mak<strong>in</strong>g(Seale, Chapl<strong>in</strong>, Lelliott, & Quirk, 2006).Some <strong>in</strong>terventions are beg<strong>in</strong>n<strong>in</strong>g to be developed and tested. For example, Deeganhas recently developed and is test<strong>in</strong>g an <strong>in</strong>novative three-tiered approach to assistmental health consumers to participate <strong>in</strong> SDM related to use of psychiatricmedication. This pilot program <strong>in</strong>cludes a peer-to-peer workshop, a specializedsoftware program to support SDM that can be effectively used by all service recipients(<strong>in</strong>clud<strong>in</strong>g those with active symptoms), and a tra<strong>in</strong><strong>in</strong>g program for casemanagers and therapists to help consumers navigate decisional conflict related tomedication (Deegan, 2007). Hamann et al., <strong>in</strong> a randomized controlled trial of anSDM program compared to usual care with 107 people receiv<strong>in</strong>g <strong>in</strong>patient care forschizophrenia, found that the <strong>in</strong>tervention was feasible for most <strong>in</strong>dividuals withoutexceed<strong>in</strong>g the available time of physicians. Individuals <strong>in</strong> the SDM group hadbetter knowledge and higher perceived <strong>in</strong>volvement <strong>in</strong> decision-mak<strong>in</strong>g comparedto the usual care group (Hamann et al., 2006). Hamann et al., <strong>in</strong> a survey study of122 people receiv<strong>in</strong>g <strong>in</strong>patient care for schizophrenia, also found that there was asomewhat stronger preference among the <strong>in</strong>dividuals for SDM compared to primarycare consumers, and that younger people with a negative attitude toward medicaltreatment were relatively more <strong>in</strong>terested <strong>in</strong> participation (Hamann, Cohen, Leucht,Busch, & Kissl<strong>in</strong>g, 2005). Malm et al., <strong>in</strong> a 2-year randomized controlled trial oftwo community-based treatment programs with 84 people with schizophrenia <strong>in</strong>Sweden, found that there was significantly improved social function and consumersatisfaction for an <strong>in</strong>tegrated care model <strong>in</strong>corporat<strong>in</strong>g SDM and consumer empowermentcontent (Malm, Ivarsson, Allebeck, & Falloon, 2003). These studies showthat there is the potential for SDM <strong>in</strong>terventions, <strong>in</strong>clud<strong>in</strong>g structured decision support<strong>in</strong>terventions, to be of <strong>in</strong>terest and feasible for use among people with seriousmental health conditions. Test<strong>in</strong>g of <strong>in</strong>terventions is <strong>in</strong> the very <strong>in</strong>itial stages, how-<strong>Shared</strong> <strong>Decision</strong>-<strong>Mak<strong>in</strong>g</strong> <strong>in</strong> <strong>Mental</strong> <strong>Health</strong> <strong>Care</strong>: Practice, Research, and Future Directions
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iiContentsIntroduction ............
- Page 11 and 12: 5outpatient commitment (Holmes-Rovn
- Page 13 and 14: 7Advantages• Practitioners can be
- Page 15: 9Section 2The Practice of SharedDec
- Page 22 and 23: 16Section 3SDM ResearchCurrent rese
- Page 24: 18Mental health care providers are
- Page 27 and 28: 21want mental health treatment or d
- Page 29: 23Some participants raised concerns
- Page 37 and 38: 31Section 6ConclusionsShared decisi
- Page 39 and 40: 33Fellowes, D., Wilkinson, S., & Mo
- Page 41 and 42: 35Power, A. Kathryn. (July 10, 2007
- Page 43 and 44: 37Appendix AResourcesThis list is p
- Page 45 and 46: 39Appendix BShared Decision-MakingM
- Page 47 and 48: 41Annelle Primm, M.D., M.P.H.Direct
- Page 49 and 50: 43Supplement 1Shared Decision-Makin
- Page 51 and 52: 45IntroductionThe consumer-driven r
- Page 53 and 54: 47Background: Definitions of SDM an
- Page 55 and 56: 49• Freedom to live in the commun
- Page 57: 51providers only (Wills & Homes-Rov
- Page 63 and 64: 57I interact with my consumers; I f
- Page 65 and 66: 59ReferencesAdams, J. R., & Drake,
- Page 67 and 68: 61Elwyn, G., Edwards, A., Kinnersle
- Page 69 and 70: 63Murray, E., Pollack, L., White, M
- Page 71 and 72: 65Thistlethwaite, J., Evans, R., Ti
- Page 73 and 74: 67AbstractShared decision-making is
- Page 75 and 76: 69Confronting Critical Challenges:
- Page 77 and 78: 71into treatment should still be in
- Page 79 and 80: 73these approaches, people are more
- Page 81 and 82: 75consumers to engage with their pr
- Page 83 and 84: 77that were produced in the U.S., w
- Page 85 and 86: 79a healing partnership and develop
- Page 87 and 88: 81Shared Decision-Making in Mental
- Page 89 and 90: 83However, peer support requires st
- Page 91 and 92: 85ConclusionsImplementation of SDM
- Page 93 and 94: 87Fellowes, D., Wilkinson, S., & Mo
- Page 95 and 96: 89President’s Commission for the
- Page 97 and 98: 91Supplement 3Aids to Assist Shared
- Page 99 and 100: 93IntroductionSignificance of Share
- Page 101 and 102: 95In recent years, a variety of tec
- Page 103 and 104: 97• Provide balanced information,
- Page 105 and 106: 99Form of Access or AdministrationC
- Page 107 and 108: 101ences). Some of these Web-based
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103video about shared decision-maki
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105clarify one’s own values and p
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107potential results, than on quant
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109Once again, however, it is worth
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111who belong to minority groups or
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113Hamann, J., Langer, B., Winkler,
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U.S. DEPARTMENT OF HEALTH AND HUMAN