98particular context for decision-mak<strong>in</strong>g. The consumer may, for example, have otherphysical ailments or be <strong>in</strong> a liv<strong>in</strong>g situation that constra<strong>in</strong>s choice. The challengeentailed <strong>in</strong> mak<strong>in</strong>g a satisfactory decision <strong>in</strong> the face of complex alternatives may beconsiderable, and us<strong>in</strong>g a DA may be helpful.Use of DAs is <strong>in</strong>tended to result <strong>in</strong> more <strong>in</strong>formed, and therefore improved, decisionmak<strong>in</strong>gand/or an improved outcome. The two phenomena are different, and notnecessarily related. O’Connor et al. (2003) found that DAs <strong>in</strong>creased knowledge ofoptions and outcomes, provided more realistic expectations of potential benefits andrisks, helped people feel more comfortable with their decisions, and improved their<strong>in</strong>volvement <strong>in</strong> decision-mak<strong>in</strong>g. But few effects were found on the actual healthoutcomes <strong>in</strong>dividuals experienced. The very goal of behavioral health treatment andrecovery—chang<strong>in</strong>g th<strong>in</strong>k<strong>in</strong>g and behavior—would seem to suggest that improv<strong>in</strong>gconsumers’ decision-mak<strong>in</strong>g should be a focus, regardless of whether actual improvement<strong>in</strong> health outcomes is measurable. Furthermore, SDM can be seen as abasic human right, because every person should be able to determ<strong>in</strong>e what happensto his or her own body (Nelson, Lord, & Ochocka, 2001).Types of <strong>Decision</strong> AidsWhile the IPDAS Collaboration has identified the necessary elements of a DA, as previouslynoted, DAs nevertheless come <strong>in</strong> many different forms and vary along severaldimensions. This section of the paper categorizes DAs accord<strong>in</strong>g to some of thosefactors. Different <strong>in</strong>dividuals have different learn<strong>in</strong>g styles and levels of educationand literacy; what is effective <strong>in</strong> help<strong>in</strong>g one person may be less so for another. Asa result, DAs have been developed <strong>in</strong> a variety of formats. When DAs on any giventopic are available <strong>in</strong> several different formats, each <strong>in</strong>dividual can select the ones heor she f<strong>in</strong>ds most valuable. The follow<strong>in</strong>g scheme may be useful <strong>in</strong> categoriz<strong>in</strong>g thevarious types of DAs.Passive, Active, or AssistedOne of the most important dist<strong>in</strong>ctions among DAs is whether the <strong>in</strong>dividual usesthem passively, actively, or with assistance. Passive DAs (i.e., those that entail no<strong>in</strong>volvement on the part of the consumer other than read<strong>in</strong>g, watch<strong>in</strong>g or listen<strong>in</strong>g)may <strong>in</strong>clude educational groups, booklets, brochures, audiotapes, or videos. DAsthat have an active component (i.e., those that enables the consumer to enter personal<strong>in</strong>formation, respond to questions and/or <strong>in</strong>dicate decisions that then lead tovariable options) <strong>in</strong>clude computer-based support guides, <strong>in</strong>teractive DVDs, decisionboards, and audio-guided workbooks. Yet other DAs may be used by the consumerwith guidance or assistance from a professional or paraprofessional.<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
99Form of Access or Adm<strong>in</strong>istrationConsumers may access a DA <strong>in</strong> a variety of ways. O’Connor et al. (2003) foundthat of the 131 DAs they <strong>in</strong>ventoried that were “up-to-date, completed and available,”94 were Web-based, 14 paper-based, 12 were videos with pr<strong>in</strong>t resources, 8were audio-guided pr<strong>in</strong>t resources, 2 were CD-ROMs, and 1 was Web-based with aworkbook. Most of these formats, <strong>in</strong>clud<strong>in</strong>g the Web-based resources, the videos, theaudio-guided pr<strong>in</strong>t resources, and the CD-ROMs may be <strong>in</strong>tended for the consumerto use on a personal computer, presumably <strong>in</strong> the privacy of his or her home. (Theauthors did not delve <strong>in</strong>to this level of detail on use of the DAs.) If so, access mightbe problematic for mental health consumers, many of whom have low <strong>in</strong>comes andlack home computers, although consumer-run organizations often make computersavailable to those who need them. DAs can also be adm<strong>in</strong>istered <strong>in</strong> group sett<strong>in</strong>gswith facilitators or <strong>in</strong>dividually with case managers, nurses, or other staff.Focus on a Specific Diagnosis and/or Treatment, or on <strong>Decision</strong>-mak<strong>in</strong>g <strong>in</strong> GeneralAs previously noted, DAs often focus on one decision related to a specific treatmentfor a particular diagnosis. These aids present, <strong>in</strong> simple language, the known benefitsof the treatment as well as its known risks or disadvantages. They may <strong>in</strong>cludedimensions other than the strictly medical, such as social or emotional implications(O’Connor et al., 1999).There are also decision frameworks derived from psychological and economic modelsthat focus on help<strong>in</strong>g people optimize their decisions on any issue. One exampleis the Ottawa Personal <strong>Decision</strong> Guide, subtitled “For People Fac<strong>in</strong>g Tough <strong>Health</strong>or Social <strong>Decision</strong>s” (Ottawa <strong>Health</strong> Research Institute, 2005). This guide suggestsa series of four steps:• Clarify the decision;• Identify your decision-mak<strong>in</strong>g needs: support, knowledge, values, and certa<strong>in</strong>ty;• Explore your needs (<strong>in</strong>clud<strong>in</strong>g a chart that helps <strong>in</strong> balanc<strong>in</strong>g benefits andrisks); and• Plan the next steps based on your needs.These generic frameworks do not meet the criteria for formal DAs because they donot conta<strong>in</strong> actual <strong>in</strong>formation on pros and cons, or probabilities of various outcomes.They may, however, prove useful <strong>in</strong> situations for which no DAs exist, but adifficult decision must be made.<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 ............
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5outpatient commitment (Holmes-Rovn
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7Advantages• Practitioners can be
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9Section 2The Practice of SharedDec
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16Section 3SDM ResearchCurrent rese
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18Mental health care providers are
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21want mental health treatment or d
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23Some participants raised concerns
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31Section 6ConclusionsShared decisi
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33Fellowes, D., Wilkinson, S., & Mo
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35Power, A. Kathryn. (July 10, 2007
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37Appendix AResourcesThis list is p
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39Appendix BShared Decision-MakingM
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41Annelle Primm, M.D., M.P.H.Direct
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43Supplement 1Shared Decision-Makin
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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 and 58: 51providers only (Wills & Homes-Rov
- Page 59: 53SDM for Schizophrenia TreatmentBu
- 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: 97• Provide balanced information,
- Page 107 and 108: 101ences). Some of these Web-based
- Page 109 and 110: 103video about shared decision-maki
- Page 111 and 112: 105clarify one’s own values and p
- Page 113 and 114: 107potential results, than on quant
- Page 115 and 116: 109Once again, however, it is worth
- Page 117 and 118: 111who belong to minority groups or
- Page 119 and 120: 113Hamann, J., Langer, B., Winkler,
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