Norma C. Ware|Kim Hopper|Toni Tugenberg|Barbara Dickey|Daniel S. Fisher
A Theory of Social Integration as Quality of Life
back table contents previous article next article articlesfull accessa theory social integration quality lifenorma c ware phdkim hopper phdtoni tugenberg med licswbarbara dickey phddaniel fisher md phdnorma c ware phdsearch papers authorkim hopper phdsearch papers authortoni tugenberg med licswsearch papers authorbarbara dickey phdsearch papers authordaniel fisher md phdsearch papers authorpublished online1 jan 2008aboutsectionspdfepub toolsadd favoritesdownload citationstrack citations shareshare onfacebooktwitterlinked inemail 1980s presence persons severe mental illness streets homeless shelters occasioned crisis requiring response 9 10 11 12 13 later movement mental health system reform brought another shift priorities managed care came demands costeffectiveness 14 measurable outcomes 15 evidencebased standards treatment severe mental illness 16 17 emphasis quality life largely eclipsed result article returns attention topic raising questions quality life context severe mental illness mean outcome treatment object research aim reformulate concept way sets higher standards reflects new emphasis recovery construes quality life wellbeing also agency 18 19 20 21 22 23 social integration serves substantive focus define social integration process individuals psychiatric disabilities develop increasingly exercise capacities interpersonal connectedness citizenship 24 capabilities approach quality life capabilities approach human development provides conceptual framework exercise product decades scholarship development economics moral philosophy 25 26 27 28 29 capabilities approach reconceptualizes quality life disadvantaged populations 30 developed alternative utilitarian formulations use personal satisfaction income primary qualityoflife indicators recently capabilities approach associated principally study standards living poor people developing countries seeing put uses including rethinking disability disparities health 31 32 33 34 35 efforts target social structures outside service systems goal contrast use set ideas construct individuallevel theory guide efforts foster social integration persons psychiatric disabilities receiving mental health care capabilities perspective quality life construed terms agency intentional selfdirected action realization agency dependent upon synergistic combination two essential ingredients personal capacity social opportunitypersonal capacity refers attributes individuals equip exercise agency capacities inherent developed meaning certain amount capacity may come naturally inherent capacities improve new ones acquired learning practice personal capacities constitute agency potential capacities skills though suggest competence may think skills competencies acquired practice playing piano orin context mental health treatmentsymptom management emotion regulation stress reduction 36 37 38 capacities contrast competencies acquired developmental processes aimed moral social cognitive emotional growth skills may thought performative capacities generative opportunities real options action social world outside service systems take advantage opportunities individuals must requisite personal capacities needed resources reading example requires literacy capacity reading material resource ability take advantage opportunities mediated circumstances social environmentsocial processes example discrimination laws customs policies real opportunities enable individual pursue socially valued ends pursuit achievement ends improve quality life follows use term occasion refer opportunities occurring part mental health carethe research article second planned series reports anthropologically informed qualitative study study used capabilities approach define social integration context psychiatric disability build theory explains capacity development social integration may take place data collected 2003 2005 first report study offered new definition social integration see 24 address studys second theorybuilding objective methodsdata collectiontwo types data collection activities carried study individual indepth interviews brief ethnographic visits indepth interviews conducted adults psychiatrically disabled judgment investigators become socially integrated since disablement judgments based upon information forwarded service providers made collectively research team interviews unstructured worked elicit detailed accounts experiences related social integration seventyeight interviews conducted 56 intervieweesbrief ethnographic visits short stays service sites work foster social integration persons psychiatric disabilities purpose visits understand takes place eight visits made five programs psychiatric rehabilitation facility consumerrun dropin center therapeutic community residential employment program aimed redefining community communitybased treatment center young adults psychosis visits lasted one two days included interviews staff program users field observationsthe study approved committee human studies harvard medical school institutional review board nathan kline institute psychiatric research informed consent obtained study participants approved consent formdata analysis strategies analyzing qualitative data simply pulled shelf rather custom built fit investigation 39 40 construct theory showing capacities social integration may develop individuals psychiatric disabilities used theorydrivenbutinductive approach data analysis informed capabilities approach observational interview data analyzedfirst specify capacity construct second characterize occasions capacity building mental health care posed two analytical questions capacities needed connectedness citizenship occasions building capacities foster connectedness citizenship look like address questions interview transcripts materials derived observations notes ethnographic visits notes investigator discussions ethnographic visits transcripts recordings interviews conducted visits reviewed discussed facetoface daylong meetings research team telephone conferences twentythree meetings conferences took place twoandahalf years identify capacities needed social integration team selected larger corpus data sections text judged represent instances connectedness citizenship characterized capacities involved naming defining ways intended reflect meanings inherent text contrast example dictionary definitions insights understandings developed course conducting research analytic strategy informed grounded theory approach qualitative data analysis 41 42 43 much procedure used characterize occasions capacity building sections text represented interpersonal interactions individual providers recipients mental health care judged exemplify occasion identified named contextualized interpreted team names selected represent change processes defined interaction occasion means occasions represented mechanisms changeonce instances capacities occasions fleshed hypothetical process specifying interact informed capabilities approach formulated statement process promised working theory capacity building social integrationresultspresentation study results reflects theoretically informed yet inductive analytical process described show analytical questions intended specify capacities occasions answered lay theory capacity development social integration answer analytical questions six capacities five types occasions identified capacities moral social cognitive emotional competencies build maturity anchor social action occasions represented change mechanisms fostering capacity development overview appears figure 1 figure 1 capacities occasions development agency social integrationwhat capacities needed connectedness citizenshipthe following capacities suggested data responsibility ability act ways reflect consideration respect others accountability answerable others consequences ones actions context given set social moral standards imagination ability form ideas images mind know mental creations empathy ability envision understand identify others points view judgment ability form sound opinions sensible decisions absence complete information advocacy ability argue articulately position orally writing relative salience social emotional cognitive moral dimensions varies across capacities empathy example prominently social emotional cognitive emotional dimensions especially salient advocacy responsibility accountability social moral dimensions come quickly fore major advantage capacity construct larger capabilities approach highlight moral dimension agency thus allowing moral experience really matters 44 introduced discourses social integration following psychiatric disability meaning recovery mental illness occasions building capacities look liketo address question five types occasions identified occasions defined structured mechanisms change leading capacity development mechanisms change embedded microexchanges mental health providers users care type occasion change directed building capacity connectedness citizenship five types occasions representedcontradiction reinterpretation rehearsal raising expectations confrontationare salient study datacontradiction mr interviewee described evicted homeless shelter repeated rule infractions angry eviction however anger temperedand complicatedby fact although shelter staff instigated move also found new placement helped pack things driven new residence mr impressed also confused couldnt call jerks exclaimed true kicked look also seemingly contradictory juxtaposition callousness concern triggered shift perspective behavior remember really clearly said got new place walked door said chance things differently started started accountable people reinterpretation reinterpretation occasioned encounters new meanings familiar idea following interview excerpt ms recounts experience asked call halfway house staying course interaction encounters new meaning call though calling previously experienced infringement independence interaction depicted ms presented fact calling also signify consideration others learning acting new meaning ms subsequently became responsible remember first time asked call went somewhere like call aint mother aint callin business go staff person like worry said nobody worries dont even go im place live get school get apartment like well thats youre could go back sit ward like wait minute meanrehearsal enactment essential capacity hence third capacitybuilding mechanism rehearsal rehearsal mean executing developing capacity learning environment expectation feedback psychiatric rehabilitation program participating study enables participants rehearse students using adult education model practice communitybased psychosis treatment center organizes theater workshops led professional actors stage rehearsals emotional imaginative capacitiesempathy form adopting multiple perspectives situation example creating livinglearning environment practice reciprocal relationships therapeutic community visited functions continuously rehearsal stage connectedness citizenship larger social world dickey b ware nc unpublished manuscript rehearsal may usefully contrasted practice cited means skill development capacitybuilding mechanism rehearsing creates experience raising expectations fourth example see increased sociability brought subtle raising expectations study interview mr r referred turning point became open connecting others mr r described conditions change created ms mental health practitioner consistently respectful nice mr r returned greetings go hell simply smiled hung telephone calls proceeded nothing happened inquiring wellbeing usual one day ms ts congeniality cooled stopped talking mr r reported stopped saying hi asking mr r found missed attention pull connection come expect outweighed urge remain interpersonally distant tentatively tested waters put itinitiating greetings first say hi thats started mr r concluded little little talking conversations started getting longer longer next thing know therapy groups exhibiting warmth respect ms modeled alternative mr rs characteristic rudeness expressions anger pulling back certain point signaled usual demeanor longer acceptable effect changing rules interaction setting higher standard new standard required respect warranted earned socially acceptable behavior mr r promptly responded becoming considerate respectfulnicerand connected othersconfrontation last mechanism term confrontation confrontation mean deliberate challenges actions fail meet accepted standards confronting unacceptable actions part individuals severe mental illness sets expectation accountability assumes capacity reinforces connectedness communicates one acts affects othersthat social interactions something real stake aptly illustrated following interview excerpt staff person participating therapeutic community describes response resident faked injury escape work responsibilities first thought want punished felt way realized worst thing could talk time wrote note felt lied felt realize dishonest person trust broken going lasting consequences consequences arise peoples actions natural natural consequence lying people im gonna trust thats going really hard us work aroundnot every capacitybuilding occasion produces immediate change remainder anecdote makes clear staff persons attempt communicate lesson interpersonal consequences dishonesty initially went unheededher note interpreted dismissed simply list complaints subsequent attempts least one involved thirdparty mediation led understanding grievance note form empathy part resident eventually relationship strengthened least returned original statea theory capacity building social integrationhaving laid building blocks theorycapacity occasion mechanismwe come task assembling proposition follows individuals psychiatric disabilities bring preexisting capacities development process existing capacities expand new ones take root exposure occasions growth occasions present challenges may simple complex made either single interactions orchestrated sequences arranged order increasing difficulty challenges mastered via mechanismscontradiction reinterpretation confrontationcompetency affirmed sense possibility emerges aspiration together aspiration sense possibility fuel engagement new challenging occasions capacity builds expands agency iterative openended process process depicted schematically figure 2 figure 2 process capacity development exposure occasions growthoccasions capacity development share number characteristics assume capacity development possible take place practitioners act accordingly setting expectations performance insisting expectations met also allow possibility failure occurs find constructive ways responding constructive responses examine failure place perspective also allow consequences unfold genuine actions events characterized fact something significant stakethe development process expected neither uniform across capacities steady pace slippage stalling temporary reversals occur unexpected obstacles crop challenges declined adequate theory must account contingencies representation offer attempts dodiscussionour intent construct working theory capacity development social integration applies persons psychiatrically disabled theory reflects capabilities approach capabilities approach offers several advantages conceptual framework assumes diversity treats growth rather chronicity way thinking life possibilities following psychiatric disability growth contingent outcome dialectic individual social context development process thus one occasions growth follow build upon one another order increasing difficulty success failure trial error expected parts process finally capabilities approach leads framing quality life following psychiatric disability prioritizes capacity reflective action satisfaction functioningthe working theory posits spirallike growth process oncedisabled persons increase social integration capacity development envision theory applicable social integration also aspects quality life expect prove useful thinking social integration persons nonpsychiatric disabilities forms disadvantage hope serve useful starting point future empirical research practice social integration following psychiatric disability may ideal goal substantial progress direction reach field research project revealed number systematic innovative approaches addressing connectedness citizenship goals care supported employment programs placed individuals psychiatric disabilities competitive jobs demonstrated success 45 46 47 48 49 europe intensified campaigns social inclusion reduced barriers full social participation persons psychiatric disabilitiesby affirming rights addressing public fears correcting misinformation overcoming workplace obstacles 50 51 evidence accumulating part renaissance social psychiatry research 52 points environmental factors antecedents psychosis migration discrimination urban upbringing early childhood trauma recently implicated risk factors psychotic disorders epidemiological research 53 54 55 56 57 58 59 60 positing causal mechanisms capable explaining statistical associations adds depth area inquiry promises progress understanding psychosis 61 62 working theory outlined resonates social psychiatry renaissance however shifts emphasis origins consequences illness fundamental question address kind life individuals psychiatrically disabled reasonably entitled expect social integration form interpersonal connectedness active citizenship reasonable expectation argue means larger end ultimate advantage using capabilities approach rethink consequences disability leads us define quality life terms agency rather wellbeing alone capabilities perspective social integration improves quality life equipping people deliberate action reflective choiceconclusionsseveral questions remain answered initiative moves forward capacities contribute social integration besides discussed occasions specified occasions linked opportunities outside domain mental health care finally concepts processes outlined operationalized measured allow us test theory begin put practice implementation ideas important next step data presented demonstrate capacities social integration effectively developed part everyday routines mental health care providers tell us find theory useful analytical framework critiquing work future expect inform design interventions aimed increasing agency part recovery severe mental illnessfor example shared decision making medication management 63 point process assisting individuals agency development require coordination mental health service sectors however process must ultimately involve shift development exercise capacities recovery mean participation full citizens social world outside mental health care acknowledgments disclosuresthis study supported grant r01mh065247 national institute mental health contributions study participantspractitioners well service usersare gratefully acknowledged authors also thank madeleine smith msw assistance conducting researchthe authors report competing interests dr ware dr dickey department psychiatry harvard medical school dr ware also department social medicine harvard medical school ms tugenberg affiliated dr hopper nathan kline institute orangeburg new york mailman school public health columbia university new york city dr fisher national empowerment center lawrence massachusetts send correspondence dr ware department social medicine harvard medical school 641 huntington ave boston 02115 email email protected idea mental health treatment result better life persons severe mental illness dates back least 1970s improvement quality life declared goal national institute mental healths community support program initiative 1 2 time quality life attracted considerable attention 3 4 5 6 7 pressing concerns intervened 8 references1 schulberg hc bromet e strategies 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