Suzanne Dawson|Zoe Jordan|Melanie Attard
Carers? experiences of seeking help for relatives with first-episode psychosis: a systematic review of qualitative evidence.
University of Adelaide|University of Adelaide|University of Adelaide
review questionobjective objective review synthesize best available evidence lived experience carers relative firstepisode psychosis fep particular experience preceding seeking help specifically objectives explore perceived promoters inhibitors helpseeking fep perceived barriers facilitators accessing services fep background psychotic disorders low prevalence disorders affecting 12 adult population1 onset firstepisode psychosis fep first presentation psychotic symptoms typically late adolescent early adult years1 2 positive psychotic symptoms may include hallucinations delusions disorganized speech behaviour3 4 onset may sudden insidious though individuals experience prodromal phase manifested gradual development variety signs symptoms commonly vague nonspecific eg functional social decline sleep disturbance mood symptoms46 individuals detected phase considered ultra high risk clinically though development psychosis inevitable7 though low prevalence psychotic disorders account high proportion resources allocated mental health services associated significant challenges illness well families1 2 late adolescent early adult years young person developing many areas including formation friendships vocational goals general independence2 experience mental illness formative years divert person trajectory normal life development significantly disrupt persons life goals8 9 presenting later stage life developmental issues importance partners children10 recent australian national survey people living psychotic illness designed capture impact psychosis concluded psychosis associated substantial persistent disability2p97 specifically participants named following challenges financial difficulties 427 loneliness 372 unemployment 351 poor physical health 274 uncontrolled symptoms mental illness 257 lack stablesuitable housing 181 stigma 1162 whilst people experience one psychotic episode obtain full recovery significant number 615 reported recurrent episodes good partial recovery episodes 305 experienced continuous chronic illness2 early intervention fep focus care several decades arose premise early years illness critical period intervention significant decline also scope influencing longer term prognosis9 11 12 main aims services shorten course initial psychotic episode reduce severity illness subsequently minimize disruption persons life9 12 key components early intervention include medication reduce symptoms psychosocial interventions aimed supporting individuals recovery13 even onset psychosis typically delay accessing appropriate treatment14 period time onset first psychotic symptom first treatment referred duration untreated psychosis dup major focus research intervention dup considered important malleable prognostic factor systematic review establish whether dup associated prognosis included metaanalysis 26 studies diverse cultural backgrounds including 4490 participants15 results showed evidence moderate association dup symptomatic functional outcome short term 612 month follow though remains inconclusive whether reducing persons dup improves overall prognosis mean dup found two years15 treatment intervention psychosis tips early detection intervention programme norway successfully reduced median dup 16 5 weeks16 tenyear follow though reported symptoms comparable across early detection group usual detection group significant gains recovery early detection group due increased employment17 reducing dup remains common service goal13 dup typically long meaning individuals18 families1921 often required cope distressing symptoms many months longer many individuals families report high levels distress stage untreated psychosis firstepisode psychosis highrisk period suicidality22 important previous suicide attempts predictors later attempts completed suicide23 gersen et al24 found families relatives fep predominantly use adaptive coping strategies contrast families individuals chronic illness reportedly use increased maladaptive strategies suggesting impact burden stress care time coping24 25 recent systematic review measuring effectiveness early intervention clinical outcome inconclusive exception sustained positive impact areas employment family26 whilst may implications future funding directives reduce need individuals fep receive early appropriate intervention minimising impact psychosis individuals improving outcome remains priority clinical practice guidelines many countries3 27 28 quick timely access services positively impact distress experienced ill person families reaching individuals experiencing fep early stages illness requires early detection psychosis community understanding factors associated contributing delay helpseeking14p76 literature related pathways care explores barriers facilitators accessing services encompasses helpseeking behaviour accessibility services service response9 29 30 helpseeking defined behaviour actively seeking help people rickwood deane wilson ciarrochi 2005 p 431 directed towards formal sources mental health professionals informal sources family friends dr coralie wilson personal communication 2012 mar 27 young people informal sources preferred source help31 32 fep frequently family members initiate successful contacts relatives20 33 often without affected individual participating contact34 helpseeking occur needs recognition person need help32 recognition disorder developing knowledge treatment options knowledge effective helpseeking strategies components mental health literacy32 community surveys mental health literacy show many people unable recognize mental illness though evidence improvements made education strategies community level16 32 knowledge impacting upon policy development programmes designed develop peoples mental health literacy helpseeking skills16 27 32 35 systematic review aiming understand measure pathways care fep singh14 notes remains delay relatives seek help even problem become evident understanding individuals personal narratives journeys one method enhancing understanding processes affect helpseeking14 delays accessing appropriate treatment arise levels including illness recognition helpseeking service response helpseeking one factor impact delay treatment36 delays service level also significant varied reasons eg lack affordable services inflexibility appointments37 delayed diagnosis within mental health services38 common themes relating delayed helpseeking include stigma misattribution symptoms eg drugs stress typical changes adolescence knowing go hope symptoms go away without intervention raised threshold seeking help5 39 40 factors associated successful helpseeking include frank psychotic symptoms depression suicidal thinking reaching crisis5 18 20 studies include individuals families fep considerable congruence reported themes experiences helpseeking18 21 research date provides information regarding potential barriers facilitators helpseeking fep increased awareness impact prolonged dup benefits early intervention driven need explore understand pathways care people experiencing fep preliminary search literature reveals qualitative studies exploring individuals carers experiences helpseeking fep5 21 41 carers play crucial role accessing help relatives14 21 often primary sole helpseeker34 search cochrane library joanna briggs institute library systematic reviews pubmed cinahl prospero databases reveal previous planned systematic reviews qualitative evidence topic synthesis relevant studies carers experiences add understanding illness recognition helpseeking strategies utilized service response may provide important information regarding pathways care experiencing fep definition terms firstepisode psychosis fep purpose review operational definitions fep considered means firstepisode may defined first treatment contact duration antipsychotic medication use duration psychosis42 inclusion criteria types participants review consider studies include carers relative fep means first presentation psychotic symptoms limit duration untreated psychosis method diagnosis may according editions diagnostic statistical manual mental disorders dsm international statistical classification diseases icd research diagnostic criteria relevant country study confirmed psychiatrist health care professional psychotic symptoms may include hallucinations delusions psychotic disorders may include schizophrenia schizoaffective disorders mania psychotic symptoms depression psychotic symptoms delusional disorders acute transient psychotic disorders unspecified nonorganic psychotic disorder age restriction person experiencing psychosis carers could parent sibling spouse relative age studies predominantly include individuals prepsychotic ultra highrisk stage illness excluded due low conversion rate psychosis types interventionsphenomena interest review consider studies investigate experience carers relative firstepisode psychosis particular experience preceding seeking help informal family friends formal services sources types outcomes review consider research conducted mental health care setting including inpatient outpatient community types studies review consider studies focus qualitative data including limited designs phenomenology grounded theory ethnography action research feminist research absence research studies text opinion papers reports considered search strategy search strategy aims find published unpublished studies threestep search strategy utilized review initial limited search medline cinahl undertaken followed analysis text words contained title abstract index terms used describe article second search using identified keywords index terms undertaken across included databases thirdly reference list identified reports articles searched additional studies studies published english considered inclusion review studies published january 1990 august 2012 considered inclusion review due focus care firstepisode psychosis pathways care developing early 1990s databases searched include cinahl pubmed scopus psycinfo embase search unpublished studies include mednar proquest dissertations theses trove relevant professional bodies field early intervention psychosis carers mental health initial keywords used helpseeking caregivers firstepisode psychosis qualitative assessment methodological quality papers selected retrieval assessed two independent reviewers methodological validity prior inclusion review using standardized critical appraisal instruments joanna briggs institute qualitative assessment review instrument jbiqari appendix disagreements arise reviewers resolved discussion third reviewer data collection data extracted qualitative research papers included review using standardized data extraction tool jbiqari appendix data extracted include specific details phenomena interest populations study methods outcomes significance review question specific objectives data synthesis qualitative research findings possible pooled using jbiqari involve aggregation synthesis findings generate set statements represent aggregation assembling findings rated according quality categorising findings basis similarity meaning categories subjected metasynthesis order produce single comprehensive set synthesized findings used basis evidencebased practice textual pooling possible findings presented narrative form conflicts interest conflicts interest acknowledgements dr melanie attard bsc hons phd postdoctoral research fellow joanna briggs institute faculty health science university adelaide secondary reviewer systematic review forms partial submission award masters clinical sciences joanna briggs institute university adelaide secondary reviewer used critical appraisal assoc prof sharon lawn flinders human behaviour health research unit margaret tobin centre flinders university advice around protocol development