Qualitative Research Methods in Mental Health: Innovative and Collaborative Approaches PDF
Preview Qualitative Research Methods in Mental Health: Innovative and Collaborative Approaches
Maria Borcsa Carla Willig Editors Qualitative Research Methods in Mental Health Innovative and Collaborative Approaches Qualitative Research Methods in Mental Health · Maria Borcsa Carla Willig Editors Qualitative Research Methods in Mental Health Innovative and Collaborative Approaches Editors MariaBorcsa CarlaWillig InstituteofSocialMedicine DepartmentofPsychology RehabilitationSciencesandHealthcareResearch City,UniversityofLondon UniversityofAppliedSciencesNordhausen London,UK Nordhausen,Germany ISBN978-3-030-65330-9 ISBN978-3-030-65331-6 (eBook) https://doi.org/10.1007/978-3-030-65331-6 ©SpringerNatureSwitzerlandAG2021 Thisworkissubjecttocopyright.AllrightsarereservedbythePublisher,whetherthewholeorpartof thematerialisconcerned,specificallytherightsoftranslation,reprinting,reuseofillustrations,recitation, broadcasting,reproductiononmicrofilmsorinanyotherphysicalway,andtransmissionorinformation storageandretrieval,electronicadaptation,computersoftware,orbysimilarordissimilarmethodology nowknownorhereafterdeveloped. Theuseofgeneraldescriptivenames,registerednames,trademarks,servicemarks,etc.inthispublication doesnotimply,evenintheabsenceofaspecificstatement,thatsuchnamesareexemptfromtherelevant protectivelawsandregulationsandthereforefreeforgeneraluse. Thepublisher,theauthorsandtheeditorsaresafetoassumethattheadviceandinformationinthisbook arebelievedtobetrueandaccurateatthedateofpublication.Neitherthepublishernortheauthorsor theeditorsgiveawarranty,expressedorimplied,withrespecttothematerialcontainedhereinorforany errorsoromissionsthatmayhavebeenmade.Thepublisherremainsneutralwithregardtojurisdictional claimsinpublishedmapsandinstitutionalaffiliations. ThisSpringerimprintispublishedbytheregisteredcompanySpringerNatureSwitzerlandAG Theregisteredcompanyaddressis:Gewerbestrasse11,6330Cham,Switzerland Foreword Thisbookisverytimelyandmuchneeded,andinthisforeword,Iwillexplainwhy Ithinkso. Mentalhealthhasfinallycomeoutoftheshadows.Thereisanincreasingunder- standinggloballythatmentalhealthandwell-beingarenotanymoreinthemargins ofpoliciesandhumandevelopment.Mentalhealth,asanewpriority,appearsnowto beoftenthefocusofpoliciesrelatingtohealth,socialwelfare,educationandother areasofsocietallife.Recently,therehavebeenmanyhigh-levelglobal,regional,and nationaldecisionsaboutthecentralroleofmentalhealthandwell-beinginshaping the future of societies. It is strange that the world had to wait so long to come to its conclusion about this importance, and now, we have the opportunity to reflect on what may have been behind such a long delay. In addition, the time has come to invest more in the promotion of mental health of individuals and societies, and to develop effective ways of prevention, support, care and recovery in the field of mentalhealth. There seems to be a broad consensus regarding this part of the new discourse about mental health as an emerging priority. This is, actually, an easier part of the discourse.However,whenwemovetothenextissue,whichisabouthowtoinvest and how not to invest in mental health, the global community, including experts, appearstobefarfromconsensus.Thereisdisagreementabouthowresourcesshould be used, which interventions are effective, what kind of balance should we have betweenbiomedical,psychologicalandsocialinterventions,andwhethercoercion isjustifiedinmentalhealthcare.Thelistofquestionswithoutclearanswers,butto whichtherecouldbeagreement,isverylong. I had the unique opportunity during the last 6 years to be in the center of this fascinatingglobaldiscourse,withahugevarietyofopinions,withpassionateexperts andentireorganizationsformulatingandpresentingtheirversionsoftruth,withquite dramaticinteractionofscience,practices,policiesaswellaspowerstruggles.In2014, IwasappointedbytheUNHumanRightsCouncilasaUNSpecialrapporteuronthe righttophysicalandmentalhealth.ThismeansthatIbecameamandateholder,and the rule of the game is that the Special rapporteur should keep informing the UN, thememberstatesandotherstakeholdersabouthowtherighttophysicalandmental healthshouldberealized–andhowitshouldnot.Becausementalhealthwasalready v vi Foreword emergingasanewpriority,becauseofthelegacyofunderminingtheimportanceof mentalhealthduringpreviousdecades,andbecausemyownprofessionalbackground is in mental health (I am a child and adolescent psychiatrist), I decided to make mental health a priority of my rapporteurship. Therefore, I started to explore the globalsituationandtoworkonmyreportstotheUN. Ihavelearnedalotfrommypreviousworkincludinginsightsproducedfrommy criticalanalysisofthesituationinthefieldofmentalhealthinCentralandEastern Europe.Inthisregion,thefieldofmentalhealthhasbeenandremains–fordifferent historicalreasons–affectedbyalegacyofstigma,discrimination,institutionalization andsocialexclusion.Inaddition,Ihavebeenobservingformanyyearshowideology was influencing practices, but also outcomes of research. At that time when I was studyingmedicineandstartedtoworkasayoungpsychiatristandresearcher,mental healthwasusedbytheSovietUnionasoneofthe“battlefields”oftheColdWar.It wasofutmostimportanceforSovietideologytoprovethatmentalhealthproblems can be prevalent in the west, but not in the Soviet Union which, according to that ideology,havebeeneradicatedbythepoliticalsystem.Theresearchershadtoprove thatinthecountrywhichwassupposedtobeonthewaytobuildingcommunism, social and psychological risk factors in the society do not exist anymore. Hence, mental disorders or mental health problems could emerge only in individuals who havebiologicallydeterminedmentaldisorders.Thisishowschizophreniaandother diagnosticcategoriesstartedtobemisused,whichleadfinallyeventothepolitical abuseofpsychiatryinthatpartoftheworld.ThiswasoneofthelessonsIlearned– thatalotofstatisticsandbiasedresearchcanperfectlyhidetherealproblems. However, since 2014 my mandate was global, so I could not focus on just one regionanylonger.Ineededtocaptureglobalchallengesandopportunities. Iwastravelingtomanycountries,meetingrepresentativesofgovernments,mental health professionals, users and ex-users of mental health services. I was attending numerous meetings and visiting a large number of mental health facilities. Based onconsultations, sitevisitsand collected informationI prepared several reports to theUN.Thiswasmyduty—theSpecialrapporteurpreparesandpresentsthematic reportstotheUNHumanRightsCouncil(HRC)andtotheGeneralAssembly. Oneofthesereports—thereportwhichIpresentedtotheUNHRCinJune2017, sparkedsomanyresponses,andtheseresponseswerecharacterizedbysuchabroad spectrum of views–ranging from extremely positive to extremely negative–that it couldbeinterestingforsomeonetoexploretheseresponsesassomethingveryunique andmeaningful“foodforthought”. Howitcouldhappenthatonegroupofexperts,wellknownintheworldofmental healthresearchandmentalhealthpolicy,decidesthatthemainmessagesofthereport of the UN Special rapporteur are correct and should be taken up by governments, whiletheothergroupofexperts,whoarealsoprominentresearchersandadvisersfor politicians,concludethatthisreportshouldbedisqualifiedandthatitsmainmessages arewrongandmisleading? Thehugepolarization,whichwasrevealedthroughresponsestothereport,isa reflection of long-standing tensions with regard to the status quo in global mental healthandtotheway,theglobalcommunityshouldproceed. Foreword vii Whilemanyorganizationsandexpertssupportedthemainmessagesofthereport, onegroupofexpertsandorganizationsthatdidnotagreewiththosemessages,was mainlyrepresentingtheprofessionalgroupofpsychiatry. This was not a surprise. My assessment of the current situation in global mentalhealthwasveryclearaboutthisstatusquobeingunacceptable.Iquestioned thecentralstatementofthemovementforglobalmentalhealth,whichwasaboutthe “heavy burden of mental disorders” and the main goal of investments that need to beincreased,whichistoaddressthetreatmentgap.Oneofmyconclusionswasthat themainproblemisnottheburdenofmentaldisorders,buttheburdenofobstacles for the realization of the right to mental health. Three main obstacles that I have identified were reflecting the dominance of the neurobiological model during the lastfourdecadesinmentalhealthcareandpsychiatry.Oneobstaclewastheobvious overuse of the biomedical model and biomedical interventions (mainly treatment with psychotropic medications) dominating mental health care practices. Another obstacle was huge power asymmetries—especially between service providers and servicesusersinmentalhealthcare,butalsobetweenpsychiatristsandothermental healthcareworkers.Thethirdobstaclewasbiaseduseofknowledgeandevidencein mentalhealthcare,resultingininformingeveryonethat,forexample,depressionis aboutchemicalimbalancesinthebrain. Is this all about denouncing or demonizing the medical model in the field of mentalhealth?No,Ithinkthatthemedicalmodelandpsychotropicmedicationsdo have their role in providing care and support to people with mental health needs. TheproblemIwasraisingwasaboutoveruseandmisuseofsomeinterventions,and aboutahumanrights-basedapproachbeingunderminedbythedominantideathat firstofallmentaldisordersshouldbefixedbydoctors,voluntarilyorbyforce,and onlythendignityandhumanrightscanbeexercised. Thedominanceofthebiomedicalmodelandbiomedicalinterventionsisbased, as we know, on research. Here we approach the main theme of the foreword— whyqualitativeresearchissomuchneeded.Thereasonisthatonemoreimportant imbalancewascreatedbytheexcessiverelianceandoveruseofquantitativeresearch. As it appears now, findings of that research have been strongly influenced by the pharmaceutical industry, and have failed to keep to its promises. We know, and I haveelaboratedonthisissueinotherreports(suchasmyreportoncorruptionand righttohealth),thatlargenumbersoffindingsofresearchthatwereinformingthe stakeholdershavebeenbiased.Medicationsmayhavetheirroleinthemanagement of mental health conditions. However, evidence about their effectiveness has been biased, and for many years, patients, doctors and politicians have been receiving misleadinginformationaboutwhatcouldbethemosteffectivewaytomanagemental healthconditions. Torestorethebalanceinresearchandininformingthegeneralpublic,politicians andmedicaldoctors,goodqualitativeresearchisverymuchneeded.Itisbecoming evidentnowadays,thatmentalhealthisstronglyaboutthecontext.Itisaboutrelation- ships,diversities,powerissues,effectsofdiscrimination,inequalitiesandviolence. Itisabouttheemotionalandpsychosocialenvironmentinwhichwelive.Thisenvi- ronmentcanandshouldbehealthy,richinsupportiveandrespectfulrelationships. viii Foreword Unfortunately,quiteoftenthisenvironmentcanalsobetoxicandcontaminatedwith hatred,mistrust,violence,xeno-,homo-andallotherkindsofphobia.Largely,mental healthdependsonthesecontextualandsocialfactors,whichcanbeinvestigatedwith socialsciencesandqualitativemethods.Behindthephenomenonthatnowadaysis called depression–considered one of the most prevalent health conditions-power imbalances might be more important factors, than so-called chemical imbalances which are still presented in medical textbooks as targets for the management of depression. Sadly,duringrecentdecades,thecontextofthesocietalfabricwaslargelyignored, andweshouldunderstandthatthiswasbecauseoffocusingexcessivelyonthebrain and on the dominance of the reductionist idea that neurosciences will eventually provideacureformentalhealthconditions.Theattempttopresentmentalhealthcare asaclassicalfieldofmedicine,withadesperatesearchfora“cureofmentaldiseases” has failed. Behind this failure stood mainly the fact that research on societal and contextualissueswasunderminedandwasconsiderednotasimportantasresearch onbrain. There is still a long way to go for this systemic error to be corrected. Despite increasingevidencethatessentialchangesinmentalhealthpoliciesandservicesare needed, the lion’s share of mental health budgets in most countries of the world continues to be allocated to cover expenses of psychotropic medications, psychi- atrichospitalsandlong-termcareinstitutions.Theexpertopinionsofpersonswith lived experience (users and ex-users of mental health services), and non-medical mentalhealthprofessionalsareoftenignoredorundermined.Accordingtoexisting “unwrittenrules”shapedbydecadesofthestatusquo,psychiatristsaretheexperts astheyaremedicaldoctorsandthisiswhytheyknowmoreandbetter.Interestingly, among psychiatrists there is an increasing variety of views as well. However, as a consequenceofdecadesofdominanceofthebiomedical-neurobiologicalmodel,the power in decision making belongs to those professionals who hold the view that psychiatryisafieldofbiomedicineandthatitshouldcontinuetobeso. Thisisnotablack-and-whitematter.However,weshouldagreethatthetimehas come for another paradigmatic shift in globalmental health. This is how the field of mental health is developing; we know from history that mental health care and psychiatryhasbeenmarkedbyshiftsofparadigm.Ontheonehand,eachsuchshift was bringing some improvement to the lives and human rights of people who had mentalhealthconditionsandmentalhealthneeds.Ontheotherhand,thependulum wasoftenmovingtotheotherextreme,andaftersometimeacriticalmassofevidence was in place that something has gone wrong (again), and that change is needed (again).Therehasbeenacontinuoussearchofoptimalbalancewithinthebio-psycho- social model, to avoid moving too far either to “mindless brain” or to “brainless mind”.Sonow,inthe20softhetwenty-firstcentury,wehavequitealotofevidence toidentifyharmfulimbalancesandasymmetriesintheglobalmentalhealthsceneand tomovetovitallyimportantchanges.Thesechangesneedtobeguidedbyevidence, which includes outcomes of social sciences and qualitative research, and by fully embracingahumanrightsbasedapproachwhichhasbeenunderminedsofarbythe statusquoinglobalmentalhealth. Foreword ix To conclude this foreword, let me share some suggestions which might inspire researchers to contribute even more than before, with a combination of qualitative and quantitative research, to the development of effective and human rights-based mentalhealthcareandsupportservices. Analysisofpowerissuesandtheheavyrelianceoninvoluntary(forced)measures inmentalhealthcarecouldshedmorelightonhowtoabandonthislegacyofpater- nalism,coercionanddisempowermentofusersofmentalhealthservices.Analysisof issuesrelatedtorelationships,diversities,indivisibilityofhumanrights,therapeutic allianceandtrustcouldprovidecreativesolutionstohowthementalhealthofsociety andindividuals,includingthosewithmentalhealthchallenges,couldbeeffectively promoted. Whilethetraditionofinvestinginquantitativeresearch,focusingonassessment of global burden of mental disorders, is still quite strong, in order to establish a betterbalancemorequalitativeresearchisneededtocriticallyaddressthecategorical approachofdiagnosingmentalhealthconditionsandtheexcessivefocusontargeting individuals and their brains with biomedical interventions. Protective factors and howtoinvestinresilienceshouldbeexplored,sothatwedonotexcessivelyrelyon highlightingriskfactors. Giventhatthereisquitealotofevidenceregardingthecrisisofbiologicalpsychi- atryandtheneurobiologicalparadigm,theimportanceofmodernsocialpsychiatry is increasing. Here, research is needed to pave the way for effective practices that could be free from coercion and respectful of the human rights of persons with mentalhealthneeds,includingpersonswithpsychosocial,intellectualandcognitive disabilities. Suicide should be investigated as a form of (self-directed) violence and as a publichealthissue,andmoreresearchinthisdirectioncouldbehelpfultobalance reductionistbiomedicalexplanationofdepressionandsuicide.Theimpactofadverse childhoodexperiencesonphysicalandmentalhealthshouldbecomeacentraltheme ofmodernhealthresearchallovertheworld. Withregardtostigma,thereisstillquiteastrongmyththatpersonswithmental health conditions and psychosocial disabilities are dangerous to “normal society”. We need more concerted efforts, with research and advocacy, to address this kind of“commonsenseerror”basedonalegacyofstigmaanddiscrimination.Iwould suggestthehypothesis,thatitisfirstofallthesocalled“normalsociety”thatmay be dangerous to groups in vulnerable situations, but also to itself, with all these prejudices,fearsandmythsthatworkasself-fulfillingpropheciesandarereinforced byoutdatedmentalhealthsystems. OneoftheimportantmeetingsIhadwasameetingin2019withleadersofGerman psychiatry. This meeting took place in Berlin, in Luisenstrasse, famous for many importanteventsanddiscoveriesinthehistoryofmedicine.Amongmonumentsto famousresearchers,notthatfarfromeachother,Ihadthepleasuretosymbolically meetandpaytributetotwopeoplewhocontributedwiththeirdiscoveriesandinsights totwoequallyimportantsidesofmedicineandhealthcare.TheywereRobertKoch and Rudolf Virchow. Robert Koch discovered specific causative agents for several infectious diseases and thus contributed to the successes of biomedicine. Rudolf x Foreword Virchow reminded, and continues to remind us, never to forget that medicine is a social science. It is very important to nurture the fragile balance within these two significantpartsofscienceandpractice—sothattheglobalcommunityiseffective andsuccessfulinprotectingphysicalandmentalhealthofeveryone. August2020 DainiusPu¯ras FormerUNSpecialRapporteurontherighttohealth(2014–2020) Professor,ClinicofPsychiatry,VilniusUniversity Vilnius,Lithuania
The list of books you might like
