Clinician perspectives on what constitutes good practice in community services for people with Complex Emotional Needs: A qualitative thematic meta-synthesis

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25 The need t o i mpr ov e th e qu ality o f c ommunity mental h e alth se rvice s for p e ople wi t h 26 Comple x Emo t i onal Nee ds (CE N) i s recog n is e d inte rnati onall y and ha s bec ome a r enew ed pol icy 27 priority in Engla nd. Suc h impr ove ment re quire s po sit i ve en gage men t from clini cia ns a cro ss the 28 se rvice s y s t em, and th eir pe r spectiv e s on ac hievi ng good practic e ne ed t o b e unde rs tood . 29 Aim 30 To synthe s i s e qua lit ative evid en ce on cli ni cian per s pe c tive s on w hat c on s ti tut e s good 31 prac t i ce, a nd wha t hel ps o r preven t s it b eing ac hieve d, in c ommunity m ent al hea l th se r v ice s fo r 32 peopl e wi t h C EN . 33

34 Si x bibl iographic datab a se s we r e s e a r c he d for studi e s publi shed sinc e 2003 and 35 suppl emen ta r y cita tion t r ac king was c on ducted. S tudie s that u s ed any recog ni s e d quali t a t iv e 36

a nd repo rte d cl inici an ex perie nc es a n d per sp ectiv e s o n commun ity -ba se d mental he alth 37 se rvice s for a d ult s w ith CE N were eligib le for thi s re view , inc luding generic an d sp ec ialis t s e t ting s . 38 Meta - synth e si s w as u s e d to gene r a t e an d synth esi s e ove r-arc hing t heme s a cr oss inc luded s tudie s . 39

40 Tw enty-nine p aper s wer e el igible for incl usion . Six over-a rchin g them es we r e ide n tifi ed: 1. 41 The us e and misu s e of di a gno si s ; 2. The patien t journey int o s er v ice s : no wh ere t o go ; 3. The r a p eutic 42 relati on ship s: c onn ection an d dis tanc e ; 4 . Th e natu re o f tr eatm ent : not doi ng t oo muc h or too lit tle; 43 5. Ma naging sa f ety i s s ue s a nd cri se s: bei ng measure d and p roa ctive ; 6. Clini ci an a nd w ider se r v ice 44 nee d s : w ho s e n eed s ar e th ey anyw ay? The overall quali ty of t h e evi de nce was m odera te . 45 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint

46 Through s umm ari s ing t he lit era tur e on clini cian per s pec tive s on g ood prac t ic e f or peopl e 47 wi t h CEN, ove r-a rchi ng priori tie s wer e id enti fied on whic h th ere a ppe a r s to be s u bst anti al 48 co ns e ns us . In t heir foc u s on ne ed s such a s for a long -t erm per sp ectiv e on tre atm ent journ ey s , high 49 qual ity and con si sten t t he rap eu tic rela t i ons hi p s, a nd a ba la nc ed appr oac h to sa f ety, c linic ian 50 prioriti e s ar e mai nly c ongruent w ith tho se f o und in s tudie s on se rvic e us er view s. T hey a ls o ide nti fy 51 cl inici an nee d s th at should b e met for go od care to b e provide d , inc luding f o r sup ervisio n, joint 52 work ing an d organi sati onal s up port. 53 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint

54 The globa l preval enc e of “pe r sonali ty diso r de r ” in th e c ommunity is e stima te d to be a r ound 55 7.8% (1) . T his increa se s to be twe en 40 a nd 92% among people who use c ommuni ty s ec on dary me nta l 56 hea lth ca re servi ce s in Eu r op e (2) . High r a tes o f c omorbidi ty w ith oth er men tal heal th c ondition s h av e 57 bee n iden ti fied (3, 4) and peo ple w it h com orbid conditi on s ap pe ar to h av e particul arly hig h inpa t ie n t 58 and involun t a r y s e r v ice use and poo r out c omes (5, 6) . High rate s o f co mor bi d phy sic a l co ndition s have 59 also b e en found (7-9) and e videnc e sugge s t s s hor ter li fe e xpec t a ncie s (10) . Impac ts on qua lity of l i fe ar e 60 co mparable to serio us som atic illne s s (11) and a s ub s tan tial econ om ic c os t h a s be e n found for he a lth 61 and s oc i al c are se rvic es a nd s ocie t y more gen er a lly (12, 13) . 62 The value of “p erso nal ity di sord er” a s a d iagnos tic catego r y is s till con te s ted (14-16) . It argu a bly 63 provide s a ba si s fo r c lea r e xplan ati on s f o r se rvic e us er s a nd r elia bl e ca tego ri s a ti o n for re s ea r c h . 64 Howev er, it i s al so c r i tic is ed a s pot enti all y misogy nis t , a nd a s a s s oc ia ted w ith a h e avy burden of 65 st i gma that i s li kely to b e dif fic ult to di sp el, a nd wi t h a lac k o f prog r e s s in imp r ov i ng c are (17) . Th e 66 pape rs inc lude d i n thi s r e view larg el y use the te rm “ per s ona li ty diso rde r”, bu t given the grav it y of 67 critique s , we c hoo se in st e ad to u s e the a l t e r n a t i ve t erm tha t ha s r ec ently c ome in to u se to i d enti fy 68 the c lu ster of n eed s th at may lead to a “pe rsonali t y dis or d e r ” diag nosi s - c omple x emotiona l ne ed s 69 (CEN ). 70 In the U K, ca re prov ide d fo r peopl e with C EN ha s r e cu rr e ntly bee n d e scribed a s o f very 71 va r i able a nd o ft en poo r qua lity (18) . I n 2003, new po licy guida nce w as publi sh ed a i med a t grea tly 72 inc r e a s i ng provi sion o f spec ial i s t s ervic e s a nd improvi ng training and suppo rt in g e neric servic e s (19, 73 20) . The number of me n t a l he al t h Tru s t s p roviding dedic at ed s ervic e s incre as ed fi v efold ov e r th e 74 follow ing d ecad e , but a n a tion al s urvey in 201 5 found pe rsi s t in g de fic it s i n acc e s s to sp ec iali st 75 ther apie s an d to a full s p ec tr u m o f biop s yc hos oc ial int er v en tion s, an d i t r e mai ne d un clea r a s to 76 w h et he r o v er a l l q u a l it y o f c a re h a d i m p ro v ed (18) . Improv ing c are for p eopl e with CE N ha s sinc e 77 bec ome a r e n ewed pr i or i t y in Eng land (21-23) . The ne ed to improve qu ality of ca r e , re duce s tigma and 78 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint deli ver e ff ec t i ve t rea tmen ts for CEN i s r e c ognised i n t e rna t i onally (24) , wi t h for mu la tion of p ol icie s a nd 79 gui deline s in variou s cou n t rie s ai me d at i mprov ing c are (25, 26) . 80 Poli cy foc u s on improvi ng CEN c a re ha s b een acc ompani ed by growing evide nce t ha t t h e r e 81 are e f f e ctive p s y cholog ica l t r e a tment opt ions for CEN (27-32) , but that th e tr an slati o n of pol icy and 82 ev idenc e into s ervic e provi sion ha s be en slow (33) . Servic e u ser s a nd cl inici an s h ave been f ound t o 83 ag r ee t hat ac ce s s to s pec iali st s er v ice s a nd psychol ogic al int erve n t i on s , in ter v en t ions to reduc e 84 st i gma i n s e rv ices , ac ce s s to s pe cial i st c o ns u l t a t i on se r v ice s f or ge ne r i c me nt a l h e al t h s ta f f, an d 85 posi tive r i sk m anage men t ar e priori tie s, but the s e do no t a ppea r to b e widely refl ec t e d in se rvic e 86 provision (34) . 87 As well a s lac k o f re sou r c e s, cl inici an -rel a ted ba rrier s to s e r v ice improvem en t h av e 88 repea ted ly be e n f ound. S t i gma rela t e d to “pers onality di sorde r ” diag no s i s ha s r e c ur ren tly been 89 iden t i fi ed amo ng cli nicia ns: fe eling powe rle s s t o be h elp ful , perc e ived u n - tr eat abi lity, 90 preco ncep tion s abo ut pa tien t s and poor CEN und e rstan ding have been id enti fie d a s c on tr i bu tors t o 91 this stig ma (33, 35) . Unmet tr a ining n eed s a nd la ck of a c lear fram ew or k are r epor te d to c ontr ib u t e t o 92 neg ative e xpe rienc e s o f worki ng wi t h pe ople with CEN (36) . T he se do n ot, ho w eve r, a ppea r ine vitabl e 93 co ns e qu ence s o f w or k ing w ith CEN : in a relativ e ly w ell-r es our c ed sp ec iali st “pe rs onality di sor d e r ” 94 se rvice se tting , Cr awfor d et a l . (37) report e d relativ ely low le vel s o f c linic ian burnou t a nd good 95 sa ti s fa c tion am ong sta f f working with pe ople w ith CEN . Thu s, unde rstan ding t h e per s pe c tive s, 96 ex perienc e s a nd at titud e s of cli nicia n s an d the c onditi on s tha t all ow th em to w ork ef fec t i vely and 97 wi t ho ut exc e ssive burno ut with pe ople w it h CEN i s a c r uc ial el ement i n in formin g ne xt ste p s fo r 98 improvi ng servic e pr ovisio n. 99 The aim of thi s r evi ew w as to s y nth e s i se e xist i ng qua li ta tive e videnc e o n clini cian 100 per spec tiv es o n what c on st i t ut e s good p r a ctic e in c ommunity men tal hea l th s e t ti ng s fo r pe opl e w it h 101 CEN, an d h ow thi s c ould be achi eved . O b je ctives inc lud ed conduc ting a s y stema ti c s e a rch of t he 102 litera tur e, c onduc ting a me t a -synth esi s o f qual it ative d a ta, a nd a sse s s in g the qu a li ty of th e e videnc e . 103 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint This rev iew i s pa rt of a b road er progr am me of work c onduc te d by the NIHR Men t al H ea lth Polic y 104 Res earch Uni t to in fo r m t he d eve lopmen t of NH S Eng land sp ec iali st pa thwa y s and to s tr e ng then the 105 ev idenc e ba se for se r v ice devel opme nt i n this fiel d n ation al ly an d inte rna tional ly. Othe r r e view s 106 inc lude a s y n the s i s o f qu alitive li ter atu re on se rvic e us er pe r s pec tive s on g o od pra ctic e (38) , s ys temat ic 107 r e v i ew s o n t r ea t m e nt ef fe ct iv e nes s a n d co s t-e ff e ct i ve n ess (39) and a s tu dy of s e r v i ce ty pologie s . 108 . 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109 Information sources and search strategy 110 The r e view team d e velope d the pr otocol i n line with PRIS MA guidel in e s (40) and g uidanc e on 111 qual ita tive me t a - s yn t h e s e s (41) in colla bor ation wi t h a pr ojec t- spec i fic w orking group of liv ed -112 ex perienc e re s e a r c her s a nd su bjec t expe rt s . The pr otoc ol wa s r egi ster ed pro sp ect iv ely o n PROSPER O 113 (CRD420191 45615), a s w a s th e pro tocol for t he wider pr ogramme o f work (C R D 4 2 0191318 34). 114 One sea rch s tra tegy w as d eve loped for a l l the revi ew s in th e prog r a mme ( s e e Ap pendix A). 115 Se arch t erm s were bu il t aro und ke y w or ds an d s ubj ec t hea ding s r elev ant to CE N and rel a ted n eed s, 116 co mmunity me nt a l hea l t h s e rvi ces , and e ligib le s t u dy de signs inc ludi ng quali t a t i ve , qua nti t a t i ve a nd 117 gui deline s. Compre he n s iv e sea rche s w ere cond ucted o f ME DL IN E ( J a nua ry 20 03 - Dec emb er 2019), 118 Emba s e ( Ja nuary 200 3 - D ece mbe r 2019) , HMIC (Ja nua r y 2003 - De cembe r 2 019), So cial Polic y an d 119 Prac t i c e ( Janua r y 2003 - D e cemb e r 2 019) , CIN AHL (J anua r y 2003 - D e cemb er 20 19 ) and AS S IA 120 (Janu ary 2003 - Ja nuary 201 9) . No limit s were pl ace d on the la ngu ag e or cou n t ry, and a limit of 20 03 121 or late r w as pl ac ed on t he d a te to ca p t u re per s pec tive s of gr ea te r c ont empor ary r ele vanc e. 122 Cita tion s r etri eved dur i ng sea rche s w er e col lated in Endno te , a r e fe r e nce m an age m ent 123 so ft w ar e, and du plic at es we re r emov ed. Title s a nd ab st r a ct s wer e doubl e scr een e d by two NIHR 124 Menta l H ea l th Polic y Re se arc h Uni t r e s e a r c her s for a ll the r evi ews t ogeth er an d f ull tex t sc ree ning 125 wa s p erfo rmed on po ten tiall y eli gible pa per s fo r thi s r evi ew. S uppleme n t a r y s e arc hing inclu ded a 126 ca ll for ev ide nc e public i sed vi a th e s tudy team’ s ne tw or k s , rel evant p rof e s s i onal a ssocia t i on s a nd 127 socia l medi a , f orward an d back ward c ita t ion traci ng o f inc luded ar t i cle s, a nd r e f e ren ce l ist s o f oth er 128 relev an t sy s t ema t i c r evi ews found in an add it i on al sy st ematic re view s e a r c h o f EMBAS E and 129 MEDLINE ( Jan u ary 2003 - N o vemb er 20 1 9). G r e y lite rat ure w a s iden tifi ed th rough web sea rc he s and 130 the a bove bi bli ographi c da ta ba se se arch . All includ ed s t ud i es and 20% of tho s e exc luded were 131 doubl e s c re ened, a nd di scus si on wi t h se nio r rev iewe r s ac hiev ed con s en su s . 132 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Eligibility criteria 133 Studie s u sing r e cogni sed qualit ativ e da ta c ollec tion an d an aly s i s me thod s t o ex plo re c linic ian 134 per spec tiv es o n good p r a ctic e in c ommunity me nt a l he al t h s e rvi ces for p eopl e with CE N w er e 135 inc luded. St udie s wer e e ligib le i f they re p or ted t h e r eleva n t per s p e ctive s o f a ny mental h ealth 136 prof e ss i ona l wi t h expe rien ce o f w orking with peop le wi t h CEN or r e la ted n ee d s ( e .g ., recu rren t sel f-137 harm). E ligibl e se t t ing s w er e co mmunity- bas ed me nta l hea l t h s ervi ce s, inc luding mental he alth ca re 138 in prima r y ca r e s e tting s , g en eric community mental h e alth team s, a nd s p e cial i s t se rvic es for p eople 139 wi t h CEN. Re siden tial, f o ren sic , or cri si s servi ces , or specia li s t servi ce s f or di ff eren t condi t i on s w er e 140 ex clude d. P ape rs we re exc luded i f t he s e rv ice t a r g e t popula tion wer e prima r il y be lo w the a ge o f 16 , 141 unle ss focu s s i ng on tr an sitio n into adul t se r v ice s. Pu bli sh ed and grey li te r a tur e w ere eli gibl e, exc ept 142 for ca s e s tudie s, di s se r t ation s a n d the se s. (S e e Appe nd ix B for full eligi bility c ri ter i a). Mo st o f t he 143 pape rs u sed “ pe rsona li ty diso rder” to d e s c r i b e the sampl e, but h ere we u se the t erm CEN in v iew of 144 the c ont enti ou s natu re o f th e “ per s ona li t y disord er” di agno sis . 145 Quality assessment and analysis 146 Study cha r a ct eri s tic s wer e ex tr a c ted in to a Micros of t E xce l form. The Cr i t i cal A p pra is a l Sk ill s 147 Programme (C ASP ) Quali tative Chec kli st (42) was used t o pe rform qu a lity a s se ssme nts . Study quali ty 148 wa s n ot u sed t o d ete rmine el igibil i t y but is re por t e d bel ow . Tex t from r e sult s s e c ti ons o f inc luded 149 articl e s wa s en ter ed v er b a tim into the c o ding s o ftwa re NViv o for thema tic meta - sy nt h e s i s (41) a nd 150 link ed to ind ividua l s tudy cha ra cte ri s tic s s uc h a s type s o f c linic ian s, s e r v ices , a nd i nterven tion s . F or 151 sta ge one , articl e s w ere cod e d line -by -lin e by one o f t w o r e s e a rcher s an d 20 % of pa per s w er e 152 doubl e code d to prod uce an ini t i a l fr ame wo r k . A de scrip tive thema tic fra mework e merged from 153 fur ther di s c u s s ion b etwe en t he two re se arche rs for s t ag e two, i te r a t iv ely devel op ed as c od e s were 154 merged and g r oup e d hie rarch ical ly. F in al ly , ana lytic t he me s wer e ge ne rat ed to a d dre s s t h e re s e a r c h 155 que stion for sta ge th ree . Ana ly si s wa s fin ali sed colla bo ratively by a small tea m o f review er s a nd 156 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint ex perts by expe r i e nce a nd oc cupa tion . The a naly sis p roce s s incl uded c on s id e r i ng whe t h er t he r e 157 we r e sub-g roup dif f erenc es rela ted t o major s t u dy c haract eri stic s s uc h a s c ount r y of publi cati on. 158 159 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint

160 A tot al of 2 9 pap er s (d rawing on 27 uniq ue da ta se ts ) were eligib l e fo r inc lu s i on (37, 43-70) (F ig 161 1), rep re sen ting p ersp ec tive s from at l ea s t 550 clin icia n s . Cl inici an s re pr e sent ed a va r ie t y of 162 prof e ss i on s and incl ude d psyc hologi s ts, soc ial w orker s , p s y chiatric nu r s e s, oc cupa t io nal th era pis t s , 163 psych iat r i s t s, family doctor s (known as Ge neral Prac t i t io n ers o r ‘G P s’ in th e UK) a n d couns ell ors 164 (Tab le 1) . Th ey w or k ed in a rang e of s e t ti ng s f rom prima r y th r oug h te rt i a ry (non -r esid enti al) c ar e 165 and of f e r e d anythi n g from s p eci fic inte rventio n s (e.g ., Di ale ctica l B ehav iour al T he rapy, 166 Menta li satio n-B a sed In t e r v entio ns , Cogn itiv e Analy tic T her apy, e t c .) t o more ge n eral an d vari ed 167 suppo rt. W hi le w e u se the term “CE N ” , s er v ice use rs in m o s t inc lud ed studie s we re identi fie d as 168 hav ing “ pers o n ality di s ord er” or “borde rl ine per s on al ity di sord er”. 169 Fig. 1. PRISMA Diagram 170 [ ins e rt f i g u re 1 – P RI SM A d ia g r a m ] 171 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Table 1. Study Characteristics 172 F i r s t A u t h or , Y e ar . Ti tl e. C l inici an type S a m p le s iz e Data c ol lection S erv i c e / setti ng , L ocation T a rget p opul ati o n Interve nti o n if app li c ab l e Bo sanac, 2 0 15. (43) Mentaliz ation -ba s ed i n te rve n tio n to rec u rre n t a c u te prese n tatio ns a nd self-ha rm in a c o mm u nity mental h e a lth s ervice settin g. C a se ma n a ge r s: p sy ch ia tr i c n u rs e s and occu pat ion al th e rapi s ts N = 8 F ive 3- m o t hly f o c u s g ro ups o f 3 -5 c li n ic ia ns Comm u ni ty m en tal h e alth s e rvic e , Australi a 8 fe ma l e ser v i c e u sers d ia gn o se d wit h ‘ BP D ’ (DS M -I V) a nd <7 o n DI B - R. MB I Car m e l , 2 01 4. ( 44 ) B arriers and s olu t ion s to imp l e m e n tin g d i a le ctic a l b e h avi o r t herap y in a p u b li c beh a vioral h e a lth sy ste m . C li nicia ns NS N = 19 / 3 4 S tructu re d p hone in terv i e ws Comm u ni ty m en tal h e alth a n d su b s t a n c e a b u s e ag en c i e s wi t hi n a pu blic be h a vio ra l hea l th s y ste m, Northern Ca lif o rn ia Peop le wit h ‘ BP D ’ DBT Cr a w f o rd , 2 00 7. ( 46 ) L earn ing th e les so ns: a mul t i-me th od ev a luation o f d e d i cated c o m mu nity-ba se d serv i c e s fo r peop le w ith person al i ty diso rder. Service ma n a gers, front-li n e clin icia ns (ra n g e), ref err er s, comm issio n e rs. N = 8 9 se rvic e provi d e rs, 26 re f err ers, 13 c omm i ss i o n e rs fro m across all 11 de di c a t e d s e rv i c e s . Com prehensive ev al u a t i on in cl ud in g i n -d ep th q u a li t a ti v e in terv i e ws 11 ‘P i lot’ d e d ica ted ser v i c e s, En gl a nd Peop le wit h ‘PD ’ – ra n g e o f criteria a cross s er v i c e s R an g e – psychot h e rapeutic, social , occ upat i o na l Cr a w f o rd , 2 00 7. (45) L essons learned from a n evaluati o n of dedic a te d communi ty -b ased s ervices f or pe o ple wi t h p e rso nality d isord e r. S ee Cr a w f or d 2 0 07 a, ab ov e Cr a w f o rd , 2 01 0. (37) J o b s a t i s f ac t i o n an d b ur n ou t a m o n g s t a ff w o r k i ng i n c om m u ni t y - b as e d p e r s o na l i t y d is or d e r s e r v ic e s . Service ma n a gers and ‘front-li ne’ cl inic ians : t hera p ists, p s ychothera p ists, n urses , psycho l ogists, socia l worke r s, p sy chi a tr i s ts, occu p a t i o na l th e rapists, a rt t her api sts , s upp ort worke r s, an d e m p l oyed ser v i c e u s er s. N = 89 f r o m a cr o s s al l 1 1 d e di c a t ed s er v i c es Com prehensive ev al u a t i on in cl ud in g i n -d ep th q u a li t a ti v e in terv i e ws 11 ‘P i lot’ d e d ica ted ser v i c e s, En gl a nd Peop le wit h ‘PD ’ Ra nge : psychot h e rapeutic, social , occ upat i o na l D on a l d , 2 01 7. (47) Cl inici an p e rsp e ctives on re co v ery an d bord e rl ine p e rso nality d isord e r.xiqP Socia l wo rk er s, nurses , psychologists, o ne psychia try registrar a nd one con su lta nt psyc h iatrist N = 16 Interv i e ws Clin icia ns m o s tl y from o n e sp ec i a l i st s er v i c e, an d t wo from a g enera l ist serv ic e, Australia Peop le wit h ‘PD ’ / ‘BPD’ Ra nge F a na i an , 2 01 3. ( 48 ) Impro v ing se rvices for peop le wi th person ali ty diso r ders: V i e ws o f ex p e ri e n c ed c l i n i cian s. xiqP Re c o g n is e d s p e c ia l is t s a nd e x p e r t s i n ‘ P D ’ N = 60 Written group respo nse s to one questio n d uri n g c l i ni c a l a nd s cienti fic me eting Ra nge o f p u b l ic a nd pri v ate s e rvic e s acros s Au s tralia NA NA Fre n c h , 2 0 19. (49) GPs’ v i e ws and e xp erien c e s of m a na ging patients w ith p e rson ality di sorder: a q u a l it a tive in terview st u dy. . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Genera l practi ti o ners N = 15 Ph o ne inte rvi ews wi t h top i c s ch e dule GP P ra ctices, West of E n g l a n d Peop le suspec ted by G P to hav e ‘PD ’ NA Her sc h e l l, 2009. ( 50 ) Un d e rsta ndi ng c ommuni ty m enta l h e a l th ad min i s tra t ors' perspect i v e s o n d iale ctic a l b e h avio r therap y impl e mentati on. M e n ta l hea l t h ser v i c e admi n istra to rs N = 13 f r o m 9 / 10 p a r t i cip at in g o r g an i s ati on s S em i -structured ph one i n te rviews T en p rovi d e r o rg anisati ons part n e red with a l a rge n on - profi t ma n a ge d behavioral he a lt h orga n iz a tio n, Pen n sy l v ania Primarily p e o p le wi th ‘BPD’ , some o t he r di s o r de r s DBT Ho gard , 20 10. (51) An e va lua t ion o f a managed c lini cal network fo r person ality d iso rder: b re a k i ng new gro u n d or top dress i ng ? Network staff from across mul tiple ag encies wit h di v ers e b a ckg ro un ds, in c l u d i ng p s y c ho t h e r a p y , oc c u pa t i o na l t h e r a py , a nd a dv oc a c y N = All sta ff from network S em i -structured in terv i e ws A m a na g e d c l i n i c a l ne t wo r k f o r ‘P D ’ , E n g l a n d Peop le wit h a diag n osis o f ‘ P D’ NA H u t t o n , 2 01 7. ( 52 ) Swi tch i ng ro l e s: a q u a l ita t ive st udy o f st a ff ex p eri e n c e s o f bein g d ialec ti c al beha v iour therapists wi th i n the National Health Se rvice in Engl and. C li nicia ns fro m 3 DBT te ams : socia l wo rk er s, com m uni ty psy ch ia tri c nu rs es an d c li n ica l psychologists N = 6 / 24 f r o m al l 3 t ea m s S em i -structured in terv i e ws 3 D BT te am s wi t h in 1 T ru st (a l o ngside sec o nd a ry ca re s e rvic e ro les ) , Engla nd Peop le wit h d iff icu lt i e s associat ed wit h ‘ BP D ’ DBT Ko ekkoe k, 200 9 . (53) Cl inica l pro b l e ms in comm u nit y m enta l h e a lt h care fo r pa t ients wi th sever e bo rd erlin e persona lity d isord e r. Expe rt m ental he alth pro fe ssio nals fro m diff e rent d isci pli nes, differ e n t trea tm ent lo ca t ions, a nd d iffer e n t educat io n a l ba ckgrou n d s , wi th e xp e rtis e o n treatm ent f o r p e ople wit h ‘ B P D’ a n d at l e ast 3 years e xpe rience N = 8 Fo cu s gr o up E xpe rts had a t l e ast some experienc e wi t h th e s p e ciali s ed tre atm ent o f suc h pat ie n ts, but wo rk ed i n a g en era l se ttin g S ev er e ‘B P D’ (DS M - IV ) NA L a m p h , 2 01 9. (54) Pers o na l ity d isord e r c o -morb id i ty i n prima r y ca re ‘Impro v ing Acce ss to Psycho l o g ic a l T h e ra py’ s ervices: A q uali ta t ive s tu dy explo rin g profes sion als' perspectiv e s o f workin g with t hi s pa t ient g r ou p .xiqP Tra i ned a n d trainee psyc h o lo g i c a l we llbeing p ra cti ti o ners, high intensity cogni t ive beha vioural t h e rapi s t, cl i n ica l psychologi sts, clin ical l e aders a n d I APT cl inica l serv ic e ma n a ge rs N = 28 Interv i e ws I A PT in 2 lo c a li t i e s ( p r im a r y c are), Engla nd Peop le wit h CMD a n d c o -m o rb id ‘PD ’ IAP T in terv e n tio n s e . g ., CB T Lan gley, 2005. (55) Trust as a fo u nd at i o n for t he th e ra peutic i n terventi on for pa t ients w ith borderli ne person al ity di s o rder. M u ltid i s cipli n a ry cl i n icia ns wi t h e xt e n sive e xperi en c e in th e ma nag em ent o f ‘BPD’ in both priva te an d p ublic sy stem s: psyc h i atrists, p s ychi a tric n urses , a psyc h iatric socia l wo rk er, a cl i n ical p sy cho l ogist a nd a c ounse l li n g ps y c h ol o g i s t N = 10 I nd i v idu al i n t er v i e ws o r f oc us g r o u p P s y c hi a t r ic C om m u ni t y Se r vi ce s , S ou th A f r i c a Peop le wit h ‘PD ’ (DSM-IV) NA Lee, 2008. (56) A pil o t p e rson al i ty d i sorder o utreach se r vice : deve l opm ent, fi ndin gs a nd lesson s learnt. Co ns ul t a n t ps y c h ia t r is t s S em i -structured Pilot ‘PD’ outre ac h service Peop le wit h ‘ BP D ’ (SA P ) MB I / p sy chodynam ic . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint N = Unclea r. 13 SUs in ca se se ri es ele m ent, unkn own num ber of p sy chi a trists f rom a cro s s 8 tea ms, fro m whic h 2 we r e s e lect e d for outre ac h se rv i ce. in terv i e ws (secon da ry care ), E n g l a nd M or a nt , 2 0 03 . (57) A multi-perspective evalu at i on o f a sp e cialist o u tpatie n t serv i c e fo r peo ple wi th p e rson ality d i sorders. R e fe rr e r s to se rvice: con s ulta nt p sy ch ia tri st s, soc i al wo rk er s, one cl inica l p sy cho l ogist, on e substance m isu se wo rk er, and o n e c l i n i c al nurse sp e cialist N = 12 Mu l ti- perspective / m u l ti-me thod ev al u a t i on in cl ud in g s emi- structured in terv i e ws S p e cialist ‘ P D’ outre ach se r v i c e ( cl i ni ci a n s p r i m a r il y from CM HT s), E ngla nd Peop le wit h m odera te to s ev e r e ‘PD ’ Indivi dual trea tme n t (cognit i v e th e rapy), Group psy ch ot herapy (psychod y na mic), Art psychot h e rapy (grou p) O’ Connell, 201 3 . (58) Comm u nity p sy ch ia tri c n u rs es’ expe riences of ca r ing fo r cl ients w i th b or d e rl ine pe rso na lity disord e r. P sy chi a tri c n urse s N = 10 Interv i e ws CMH T (second a ry care ), I r el an d Peop le wit h ‘ BP D ’ Pers e i us, 2 0 0 3. (60) T reatment o f suicid a l a n d d e li berate self-ha rming pa t ients w i th bord e rl ine p e rso na l ity di sor d e r u sing dia l e ctical b e h avio ra l therap y : t he p atients’ a n d th e therapists’ perce p tio ns. DB T thera p ists: a psychia trist, a registered n urse , an d c ogni tive ps y c h ot h e r a pi s t s N = 4 / 4 In d ivi d u a l free- forma t q uestio nna ire an d g r ou p i nt e r vi ew DBT T eam , S weden Peop le wit h ‘ BP D ’ o r rela ted sy mpto m s DBT Pers e i us, 2 0 0 7. ( 59 ) S tress an d b u rnout i n p sy chiatric prof e ssio nal s when s ta rt ing to u se d ialec ti c a l b e h avio ur a l th e ra py in th e w o rk wi th y o ung s e lf- harmin g w o m en sho w ing bo r derlin e person al ity sy mpto m s. P hysicians, p sy cho l o g ists, re gistered n urse s, me n t a l hea l t h care a ssista n ts an d one occ upa ti o n al t h e rapi s t N = 22 An i n d ivi dua l o p e n questio n, free text an s we r questio nna ire and a g ro up i ntervie w ( a n d b u r no ut i nv e n t or y ) DBT T eam , S weden Women wi t h ‘BPD’ DBT Pi got, 20 1 9 . (61) B arri e rs a nd facil ita t ors to t he i m p l ementa tion o f a ste p ped c a re interve n tion fo r pers on ality di s o rder i n mental hea lth s ervi ces. M e n ta l hea l t h cl i n ici a n s a nd manag ers a ctively in v o lve d in t he i n tervention N = 21 / 4 6 S em i -structured in terv i e w Pu b l icly fun d e d ope n ac ces s provi d e r of h e alt h a nd m edical s e rvic e s, A ustra l ia P e o p l e wi th ‘ P D’ , p ar t i cu la r l y ‘B P D’ Ste pp e d -ca re approa ch Pri e st, 2 011. ( 62 ) H o w c a n m enta l h ealt h pro fes si on als b e st be suppo rte d in working w i t h p e o pl e w ho experi ence sig nifi c a nt d istress? Socia l wo rk er s, nurses , occu p a ti onal the rapi st s, ps ychiatrists, p sy chologists an d su pp o rt workers N = 26 Fo cu s gr o up s CMH T s an d CSMT (sec o n d a ry c are), Engla nd C MH T c a s e l o a d / P e o pl e wi t h ‘ P D ’ / people who e xperi ence ‘signifi c a nt distress’ NA Riz q , 20 12. (63) ‘There ' s alwa y s th is sense o f fai l u re ’: an inte rp re ta tive ph e n ome n ol ogi c al analysis o f prim a ry care counsello rs ' ex p e ri e n c e s of working with th e bo rderli n e c lient. Expe rie n c ed c o u n s ell ors (senio r pract iti oners) S em i -structured Prima ry care , E n g l a nd Peop le wit h ‘ BP D ’ (c l i ni c i a n NA . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint N = 5 in terv i e ws j u d g em en t ) Stalker, 2 0 05. (64) I t is a h orr ible term for so m eon e ’ : serv i c e u ser a nd pro vi der p e rsp e ctiv e s on ‘person ality d i s o rder’. P sy chi a tri s ts, t hree c o m mu n ity psychiatric n urse s, o n e cl inica l p sy cholo g ist, on e s e ni o r s o c i a l wor k er a nd o n e s e n i or o c c u pa t io n a l t h e r a pi s t , m a na g e r s an d a n ad mi n istra t o r N = 12 Interv i e ws CMH T s th ro ugh Menta l Health Re so urce Centre s, S co tla nd Peop le wit h ‘PD ’ NA Strou d, 2 013 . (65) Wo rk i n g w it h bo rderlin e persona l ity disord er : A s mal l-sca l e q uali ta t ive investiga t ion into comm u nity p sy ch i atric nu rse s' c o nstructs o f bord e rli ne p e rson al i ty d i sorder. C omm unity p sy ch ia tr i c n u rs e s N = 4 S em i -structured in terv i e ws CMH T , Wale s Peop le wit h ‘ BP D ’ NA Sulzer, 20 1 6 . (66) Im p roving pat i e n t-ce n te r ed c o m mu nic ation of the bord e rli ne p e rson ality di sorder di a gno sis. P sy chi a tri s ts, Psyc h o l ogists, Cli n ica l S o c ia l W o rk e r s an d BPD ac t i v i s ts N = 32 S em i -structured in terv i e ws Clin icia ns f rom 1 1 state s, Am erica Peop le wit h ‘ BP D ’ NA T h o m ps on , 2 00 8. (67) Mul ti d iscipli n ary c ommun ity me n tal health team staf f's ex p eri e n ce o f a ‘skill s lev el’ tra i ni n g c o urse i n c og n it i v e a nalytic t h era py. A ll e li g ible cl inic ians : s o c ia l workers a n d comm u nity psyc h iatric nu rse s N = 12 S t r u c t ur e d, op e n- e n de d i n t e r v ie ws CMH T (second a ry care ), UK Peop le wit h c o m p lex nee d s e .g., people pres enti ng wit h fe atures of ‘PD ’ CA T V y a s , 20 17 . ( 68 ) W or k in g i n a t h e r a pe ut i c c o m m u ni t y : e x pl or i n g t h e im pa c t on s t af f . T he r ap e u t i c Co m m u ni t i e s : T h e I nt e r na t i on a l J ou r n a l o f T he r a peuti c Commun i ties. C li nicia ns wo r kin g in a T C N = 8 S em i -structured in terv i e ws A l ong-sta n d in g T C, UK Peop le wit h ‘E UP D’ / ‘em o t io n a l insta bili ty’ C A T / MB T Wilson , 2 0 18. ( 69 ) E xperienc es of p arenti ng a n d c lin ical i nterve n tion fo r moth e rs a ffec ted by person ali t y diso rder: a p i lo t q u a l it ati v e stud y com b i ni n g par en t an d c l i ni c i an perspective s. Re f er r i n g CA M HS c l i n ic ia ns N = 5 S em i -structured in terv i e ws F o ur C AMHS team s ref e r r ed in to t he Help i ng Fa m i l ies Program me Mo t hers wit h ‘PD ’ wh o ha d a c hil d (livi n g wit h t hem ) a ge d 3–11 ye ar s wit h a beha vioural a n d /or em o t iona l diso r der Helping Fa mi li e s Pro g ram me – pare n ting a nd c l i ni c a l inte rv e n tio n Wl o d arczy k, 2018. (70) E xpl or in g Ge n e ra l P ract itione rs’ Views an d Experiences of P rovi d in g Care to Peop le w ith Bo rderli n e Pers o na lity Disord e r i n Pri ma ry Care: A Q ua l itative S tu dy in A ustra l i a. A ny currently p ra ctic in g GPs N = 12 Fo cu s gr o up s Prima ry care , Australia Peop le wit h ‘ BP D ’ NA Ab b r ev i at io n s : N S = N ot S p ecified. BP D = B orde r lin e Perso na l it y Di sor de r . D S M-I V = Di agnos tic a n d St ati stic al Manua l of Menta l Hea l th Dis o r der s Vers ion 4. DI B-R = 173 Di ag n os tic Int er v i ew for B orderli n e Pa tient s – Rev is ed . M BI/ M B T – Menta lis ati o n Bas ed Inter ven tion / The r ap y . D B T = Dialec tical Beha v i our al T h er apy. P D = P er so nalit y 174 Dis ord e r. G P = G eneral Pr a c tit ioner. I AP T = I m pro v i ng Ac ces s t o P s ych ol o gic al Therapi es . C MD = Co mm on Ment al D i s o r der s. C B T = C og ni t iv e Be h av i oura l T h e r apy . S U = 175 Se r v ice Us e r. SAP = Sta n d ardis ed Ass es s me n t of P e rs ona li t y. CMH T = C om mu nit y M en t a l H e al th Team. CS M T = Co m m uni t y S ubs tanc e M is use T e am . CA T = C og n it iv e A n a ly t i c 176 Thera py. TC = Therap e utic Com m u ni t y. EUP D = Em oti o n ally Uns ta b l e Per son a lit y Di sor der. C AM H S = C hi ld a n d A do l esce nt Me nta l He a l th S e rvi ce . 177 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Qua lity appr ais al indi cat ed t h a t t h e majority of s tu die s app ropria tel y u sed qua lita tive 178 methodol ogy (n= 28) , employ ed a n ap pro priat e re se arch de s i gn (n =28) , and de scri be d cle ar finding s 179 (n=28 ). Mo st s t ud ie s al s o pre s e nt e d cle a r aims ( n=27) a nd u sed app ropri ate d ata co llectio n me thod s 180 (n=26 ). H ow eve r, a number o f pa p er s di d not provide en ough info rmati on to de te rmine wheth er th e 181 d a t a a na l ys is w a s su ff i c ie nt l y r i g or o us ( n= 6 ) , w h et h e r t h e re cr u it men t s tr a te g y w a s a p pr o p r ia te 182 (n=11 ), nor whe ther ethic al i ssu es h ad bee n s u ffic ien tly consi der ed (n = 12) . Only 5 paper s in to tal 183 ade qua tely con sider ed th e rel ation s h i p betwe en re s e archer and par t i cipa n t s (Ta bl e 2). 184 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Table 2. Quality assessment according to the Critical Appraisal Skills Programme 185 First Aut hor, Y ear . 1 . Wa s t here a cl ea r stat e m e nt of the aim s of th e re se arc h? 2. Is a q u a l itati ve m ethodo l ogy app r opr iat e? 3. Wa s t h e re se arc h d es ig n a ppr o p riat e t o a ddr ess t he ai m s o f the r e s e ar ch? 4. W as th e re cr u itme n t strat e g y ap pr opri a t e t o the aims of the re se arc h? 5. Was t he data col l ect ed in a w a y that addr es s ed t he r es ear c h i ssue ? 6. H a s t h e re la t io n sh i p b e tween re se arc h er a nd pa r t i c i pa n t s b e en ad e qu a t el y consid er e d? 7. H a v e eth ic al issu e s b ee n take n into consid e rati on? 8. Was t he data ana l y sis suffi ci en t l y ri gorous? 9 . Is t her e a cl e a r stat e m e n t of findings ? 10 . H ow valua b l e is th e r e s ea r ch? Bo sa n a c, 20 1 5 (43) Yes Yes Ye s Can ’ t T ell Yes No No Ca n ’ t T e ll Ye s Un c l e ar Carme l, 201 4 ( 44 ) Yes Yes Ye s Yes Yes No No Ca n ’ t T e ll Ye s Val u a b le Crawford , 2 0 07a ( 46 ) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le C r a w f o r d , 2 00 7b (45) * C r a w f o r d , 2 01 0 (37) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le Donal d, 201 7 (47) Yes Yes Ye s Can ’ t T ell Yes No Can ’ t te l l Yes Ye s Val u a b le Fa n a ia n , 201 3 (48) Yes Yes Ye s Can ’ t T ell Ca n ’ t T e ll No Yes Yes Ye s Val u a b le Fre n c h , 2019 ( 49 ) Yes Yes Ye s Yes Yes No Can ’ t T ell Yes Ye s Val u a b le H e r s ch el l , 2 00 9 ( 50 ) No Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le Ho g ard, 2 010 (51) Yes Yes Ye s Can ’ t T ell Ca n ’ t T e ll No No Ca n ’ t T e ll Ye s Un c l e ar Hu tt on , 2 017 (52) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le Ko e k koe k , 2 009 (53) Yes Yes Ye s Yes Yes No No Yes Ye s Val u a b le La mp h , 20 1 9 (54) Yes Yes Ye s Yes Yes No Can ’ t T ell Yes Ye s Val u a b le La n g l e y, 2005 ( 55 ) Yes Yes Ye s Can ’ t T ell Yes No Yes Yes Ye s Val u a b le Lee, 2008 ( 56 ) No Ca n ’ t T e ll Can ’t T ell Can ’ t T ell Ca n ’ t T e ll No No Ca n ’ t T e ll No Un c l e ar Mo ra nt, 20 0 3 (57) Yes Yes Ye s Yes Yes No Can ’ t T ell Ca n ’ t T e ll Ye s Val u a b le O ’ C on n el l, 20 13 (58) Yes Yes Ye s Can ’ t T ell Ca n ’ t T e ll No Yes Ca n ’ t T e ll Ye s Val u a b le Per s e i us, 2003 (60) Yes Yes Ye s Yes Yes Ye s Yes Yes Ye s Val u a b le Per s e i us, 2007 (59) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le Pi g o t , 2019 ( 61 ) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le P r i es t , 20 11 ( 62 ) Yes Yes Ye s Can ’ t T ell Yes No Can ’ t T ell Yes Ye s Val u a b le Riz q, 20 1 2 (63) Yes Yes Ye s Yes Yes Ye s Yes Yes Ye s Val u a b le Sta lker, 2 0 05 (64) Yes Yes Ye s Can ’ t T ell Yes No Yes Yes Ye s Val u a b le Strou d , 2013 (65) Yes Yes Ye s Can ’ t T ell Yes Ye s Yes Yes Ye s Val u a b le Sul zer, 2016 (66) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le Thom pson, 200 8 ( 67 ) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le Vyas , 2 017 (68) Yes Yes Ye s Can ’ t T ell Yes Ye s Can ’ t T ell Yes Ye s Val u a b le Wilson, 20 1 8 (69) Yes Yes Ye s Yes Yes No Can ’ t T ell Yes Ye s Val u a b le Wlodarczy k, 2 0 18 (70) Yes Yes Ye s Yes Yes No Yes Yes Ye s Val u a b le *Crawford2007b is a short publi shed paper based on Crawford 2007a whi ch i s a l ong-form report and provides detail s in ful l. Onl y the quality ratings of 186 Crawf ord 2007a have theref ore been provided.187 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Si x ove r a r c hing t he me s wer e ide n tifi ed t hrough me t a -synth e si s: 1. T he u se a nd mis u se o f 188 dia gnosi s; 2 . The p a tien t journey t h roug h s e r v ice s : now her e to go; 3. The rap e utic rela t i o n s hip s: 189 co nnection an d dis tanc e ; 4. Th e na tur e o f tr eatm ent ( inc luding inte rventio n m ode ls): not d oing t oo 190 muc h or too lit tle; 5 . Managi ng sa fe ty is su es a nd cri se s: b eing mea sure d and pr o a ctive ; and 6 . 191 Clin icia n and w ide r s er v ice ne ed s (inc ludi ng c linic ian s uppo rt, in ter ag ency worki ng and t he wide r 192 sys t e m, a nd e s t abli shing new servi ce s, in terve n t io n s a nd skill s) : whos e ne e ds are they a nywa y? 193 The se the m es a r e further d e s c r i bed b elo w . Tab le 3 g ives fu rth er s upp orting quot es fr om t h e s tudi e s 194 relev an t to e ac h theme . W hi l e co nductin g t he anal y s i s, v ariati on s by s e tting o r b y partic ipan t 195 ch aracte ri st i c s wer e c onsi der ed. S ub stan tial varia tio n s by coun t ry or by ye ar o f da ta c ollec ti on we r e 196 not ide n t i f i ed but va r i ation s b etwe en t y p es o f cli nicia n and se rvic e s et ting w ere fo und: the s e ar e 197 desc ribed wher e rel e vant . 198 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Table 3. Table of quotes 199 Theme /i1 Qu o t e s /i1 /i1 Subtheme/i1 The Us e and Mi s u se o f Di a gnosis /i1 /i1 /i1 “ The g lobal, a l l‐enco m p assin g n atu re o f th e diagnosis, c ou p led w ith t he view th a t it w a s untreatab le, c ould ha ve a d e vasta tin g i m p act on th e i n div id u al, w hile also lead i ng to a la ck of t h e ra peuti c op t imism on the part o f cl inic i ans. Person ality d iso rderIiFDwas s een a sIiFDh av ing a ll t he dra wb a c ks o f a me n tal i llnes s dia gnosis, e s p e cia l ly in terms of s ti gma, bu t n o ne o f th e b e n efits, p artic u l arl y acce ss to serv ice s. Like wi s e, the contested a nd u n ce rta i n n a ture of person ality d iso rder l i m i te d t he p otent ia l for u se rs to gain s o me co ntro l over their c o ndit io n t hro ug h knowledge a nd in formation . The diagno s i s c ould lead to peop le facing discrimi n at io n a n d stere o ty p in g w i t hin me n tal heal th s er vice s, w i th in g e n e ri c healt h a nd soc ia l c a re serv ice s a nd wi thin society at l arg e , wi th in d ivi d uals be in g l ab e l led a s at tent io n‐ s e ek in g a nd d e m an di n g. ”IiFD /i1 “ A d i ffe r ent v i e w expre ssed by some s e rvice pro v i ders was th at pers o na l ity d isord e r is b e st u nd e rsto o d as a fo rm of socia l devi an ce or cultural IiFDru le‐bre akin g. One re spo nd e n t d e scribed peop le wi th a pers o na li ty di so r d er di agnosis as thoseIiFDwho se ‘beha v i or , att itudes, l ifest yles s e e m to co n s i st en tly tra n sgres s c u lt u ral norms, w h i ch brin gs th e m i nt o conflic t wit h o ther peop le, in th e ab se n c e o f a ny sym p tom of an underlyin g m enta l illn e ss…’ Thes e resp ond ents be l ie v e d t ha t a di ag n o s i s of pe r s o na l i t y diso rder could s i m p ly serve to m ed ical i z e o r pathol o gize a n i n d ivi du a l ’s fee l ing s of di s tress.” (Stalker et al . , 2005) (64) IiFD /i1 The Pati en t Jou r ne y /i24into/i24Servic es: Nowh e r e to Go /i1 /i1 /i1 “ Se veral GPs d es crib e d a d o pt in g a stra te g y of ‘wri tin g‐up’ , or e mbelli shi n g desc ri pti o ns o f a patient’ s risk status in ord e r to ensu re th at the p a t ient was seen by sec o nd ary c a re s er vice s. On t h e oth e r h an d , fa c ed w i th a n overly cautiou s re sp on s e fro m IAP T , se v e ra l G Ps d e scrib e d em p hasi s i ng the patie n t ’s more ‘agree a ble’ m enta l h e a lth c on d i t i on s , s uc h as d e pr e ss i o n or a nx i e t y , t o m ax i m is e t he c ha nc e s of t he pa t ie nt b e i ng a c c e pt e d i nt o t r e a t m e n t . ” “ GP s a l so d e scrib e d pa t ients with P D a s ha v i n g to e n du re pa rticu la r ly lo ng w ai ts , b e fo re being see n —wa iting t imes tha t often far e xceeded tho s e e xperienc e d by p a ti e n ts w i th other me n tal heal th pro b lem s. Ind ee d , sev e ral GPs des crib e d patients w i t h PD havi n g to w a it o v e r 1 2 m o nth s for tre a tm ent. T h e y f e lt shorteni ng wai t ing t imes wou ld re d uce the li k elih ood of menta l h e a lt h pro b lems es cal a ting or p at i e n ts di s eng agin g fro m t he h e a lth s e rvice al together.”IiFD( F rench et al . , 2 01 9 ) (49) /i1 /i1 /i1 “ Un fortu nate l y , because o f the mod el o f ste p ped c a re in the Trust, there wer e ba rrie rs to p rimary c ar e sta ff wishing to re fer p atien ts directly i n to a terti a ry s ervice , such as a s p e cia list psyc h ology service f or p e o pl e wi t h PD. ‘ …Hav e a re a l p ro b lem i n getti ng th ro ug h the cy cle o f exc l usio n : GPs w h o identi fy s u i ta b le p at i e n ts c ann ot re fer to [tertiary psyc h olo gy serv i c e],IiFD they ha v e to refe r to t h e CMHT a nd g e t them t o ta k e p e rso n o n… so we cannot k e ep cli e n ts ou t of me n tal health serv i c es,IiFD and CMHTs can say th e y w o n’t take them, as d o n’ t m ee t their cri teria .’” /i1 “ The maj ority o f IiFDreferr ers mad e r e f er e n ce to th e a ssess men t as an important pa rt of the proce ss, a nd some stated th a t ha v ing an a ss ess ment w a s o n e of the reason s fo r re f erring someon e to th e s ervice . Refer r er s li nke d t o t wo s ervices mad e spec i fic comme n t of ho w muc h t hey v a lued t he p rovisi o n o f a c omprehensi ve a s se ss ment, e ven i f t he s er vice use r was n ot ta k en on. B e n e fi ts inc l u d e d h elp ing th e r eferr e r to d e velop th e ir ow n m a n a gem e n t pl a n or to b e tter u nd e rst an d the se rvice user’s p rob le ms a nd building co n fid e n c e a n d tr ust f or th e se rvice user.” (Cr a wford et a l . , 2007) (46) /i1 Therape utic Re latio nsh ip s: C on nectio n and D istance /i1 /i1 /i1 “ A few se rvice pro v i der re sp on dents h owev er wer e ca re fu l n ot t o l o cate ‘ th e problem’ w ithin i n div idua l service u sers. T h e y b e l ieved th at unhelpfu l re s po nses from mental health se rvices we r e o fte n respon sibl e for c o m p ound in g p e o ple’s p ro b lem s sh own, fo r e xa m p le, in judg e m enta l a tt itu d e s expre ss e d by so m e staf f who repo r ted ly used w o rds l ike ‘m a nipu l ati v e’, ‘attent i on ‐se e k i ng ’ a nd ‘d e man din g ’ to st ereotype p e o ple with p e rson al i ty d i sorder d iagno se s.”IiFD (S ta lke r e t al., 2005) (64) IiFD /i1 /i1 /i1 “ ‘P at i e n ts ha v e a h ar d time trusting a th e ra pist and may onl y do so a fter quite some time , wh ich profe s si ona ls tend to u n dere st im at e . T he se p e o pl e r e a l ly n e e d a s e c ur e attac h m ent, t hey fig ht it fo r a y ear, c la i m help and then reject it again . B ut i f o n e succe eds i n b re a kin g t h at p a ttern, on e c a n re a l ly me a n s o me th ing . ’ IiFDOn the ot h er ha nd, a depend e n c y r ela tio n ship may b e perc eiv e d a s dan g e ro us i n co m mun i ty me n tal heal th c a re a s man y pati e n ts become lon g‐term user s tha t la y a larg e c lai m on sc a rce re sou rc e s, acc o rd i ng t o the ex p e rt s.”IiFD (Ko e k k o ek e t al. , 2 0 0 9 ) (53) /i1 /i1 /i1 “ C l are u se s th e po w erfu l me ta ph or o f a n ursing m oth er to des crib e the nature o f th e re la t io nsh i p. S he s e e m s to feel a m b ivalent a bo ut b e i ng at t he m e rc y o f aIiFD ne w ‐ born IiFD b ab y , w ho se n ee d to fe ed on demand c an n ot b e d e n ied. It i s as i f h e r ca p a c ity to p sy ch o logi c a l l y n ou r ish t hese c l ie n ts is be in g r u t h l e s s l y e x pl o it e d : IiFD ‘t he y l a t c h o nt o y o u and it' s l i k eIiFDsu c kIiFDsu c kIiFD s u ck IiFD suck . ’” . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint “ …For [c l i ni c ia n ], th e e n counte r wit h the dep t h o f h is c lients' needs a nd their s ens e o f em p tiness or l a c k o fIiFDself u shers IiFD in an uncomfo rt a b l e aw arenes s of hi s own v u lnerab il i ty an d i nn e r e mptin es s: ‘ Wh at yo u're met with is a needin e ss wh ich i s bo t tomless re a lly … an d i t's a lmost co l l atera l to the emptin e ss i s the needin e ss a nd l a ck of s elf … wha t a l o t of bo rderlin e patie n ts ta l k abou t i s b e i ng in n o th i ngnes s, their experi ences of nothingness, th e y h ave the mo st a c ute se n s e o f n o thing n es s tha t I th in k you'll e v e r c o m e a cross … i t ' s w ithin th a t th a t th e d ra i n ing an d th e IiFD ex h au s ti ngness IiFD of it all , becau se we a ll experi ence empti ness to so m e d e g ree, but I think th ese cli e n ts … they almost g et a heigh te n ed sens e of a ll t h e s e thi n g s … so I almost g e t a h e i ghten e d se n s e o f what h um an ity is an d vu l nerab i li ty .’” IiFD(R i zq , 2 012) (63) /i1 The Na tu re o f Treatm e nt: No t doin g to o m uch or too l ittl e /i1 /i1 /i1 “ Som e of the ex p e rts are pa rticu l arly cri ti c a l o f th e apparent denial th a t can be see n to occur in s ev e r a l setting s of the l on g ‐term natu re of the probl e ms of t he p at ient w ith a sev e r e BP D . Th a t is, a rat her n aïve and overly “ opti m i s tic” att itude cha ra cterize s p rofes sion al s wh o rapidly d i s ch arg e su c h p atients. Acc ord i ng to the e xperts , in fac t, such opti m i s m i s simply “th e ra peutic nihil i sm ” d isguise d a s op t imism … T h e c o m b in a tion of powerless n e s s a n d the b l a m i ng of the pa t ien t for a ny l a ck of progress m a y re su lt in non ‐therap e u tic IiFDb e h avio rs IiFDo n th e pa rt of the p r ofe ss i on al s u ch a s irri t ati o n , an ger, a nd ev en ag gres si on. Le ss o v ert b ut eq uall y destruct ive is th e re d u ction of t h e therapeuti c e n co u nter to d o i ng a s lit tl e a s p ossib l e and simply h o ping th a t a crisis d oes no t ar i se . F u r ther ref e rra l o f t h e pa tie n t wit h ou t sub sta ntial ju s t i fica ti o n of t he re a s o ns f or d o in g th is is anoth e r e xa m p le of re a lly d oing no t hing. ‘ P rofess i on als have man y stra te g ies to do comp letely no th i ng in therap e u tic encou n t ers with the pati e n t. ’”IiFD( Koekk o ek et a l. , 2 009 ) (53) /i1 /i1 “ On e re sp ond e n t u s ed the term ‘ha r d to eng ag e s ervices’ to d es crib e what she saw a s a m o del of p r ovisio n t oo in f lex i ble to fi n d ways of takin g on theIiFDo fte n c ha o tic IiFD re a li ty of p e o pl e ’s live s. ” (S ta lke r e t a l. , 20 05 ) (64) /i1 /i1 /i1 “ A co ntinu um o f se verity an d c o m p lexity was ref e r red to, w ith ack n o wl e d gement th a t tho se who w ere de emed l e ss co m p lex c o uld res po nd we ll to rou t i n e IAPT treatment but peop le w ith w ha t was d e em e d to be more se v er e presenta tio ns would strug g l e with ro ut i ne tre atme n t as t h ey c o u ld o sc i l la te f rom o ne pro b l e m to the n e xt o n a weekly basi s m a k i ng adherenc e to th e IAP T mo del and pr o tocol d e li v ered th e ra pi e s ver y ch al l e n gi n g to deli ver. Pa rtic ip a n t frustratio n at t h e la c k o f t r e at m e n t o pt i o ns a nd t h e c o nstraints o f t i m e‐limited therap y IiFD was IiFDco m monly repo rt ed .”IiFD(Lamph et a l . , 2 019) (54) /i1 /i1 /i1 “ In recog n it i o n of t he heterog e n e o us n e eds a nd ca p aci ties o f p e o ple wi th P D , most of th e p i l ots set out to p rovi d e a r a ng e o f s erv i c e s.IiFD ProvisionIiFDof m ore tha n o ne serv i c e o r tr ea tment o p ti o n al so ena bl e d most pilots t o presen t a c h o i c e to p o te n tial serv i c e u s e rs, a c a pac ity that m a ny b e l ie ved i m p orta n t i n p r om ot i n g e n ga ge m e nt . ”IiFD /i1 “ Di sc h arg e or dise n ga gemen tIiFDfromIiFD the se rvice is l ike l y to b e d if ficu lt an d t h re a tenin g for so m e serv i ce u s er s: it may be viewe d a s abandon me n t and m a y prec i pi ta te a n increase in beha v iou r desig ned to d e mon strate need o r risk. Some se rvic es ad dress this by workin g toward d i sc h arg e or self‐su fficiency as a sp e cifi c goal at a specific tim e f rom the p o i nt o f eng ag e me n t, while others ha v e p rovisos for re‐ entry in t o the se rvice. Som e s e rvices are dev e lo pi n g mo dels f or l e ss i ntensive , on going su pp or t so th a t discha rge need n o t be a bsolute… Some s ta ff o f o p en‐ end e d services f elt that th e re sh oul d b e a c ut‐o f f po i n t, and th a t allo w i n g on g o ing u se of a serv i c e encou rag e s depend e n ce a nd re d uces m o tivat i o n an d th e deve l o pment o f c opin g stra te g ies for e xistin g clie n ts, w h ile d e n y i n g oth e rs th e oppo r t unity of using t h e service.”IiFD(Crawford et al., 2007) (46) /i1 /i1 /i1 “ ‘Lo ok, alth o ug h I'm n o t doing my job p ro perly h e re — I'm see i ng peop le for longer, I'm, you kno w , t h e y'r e d rop pi n g in , to p ping them up ev er y so o fte n when they need i t — s o o n th e on e h a n d I see that as a fa i li n g in me , but I t h in k it's a lso a re sp onse to the n e eds o f th is typ e o f cl ien t .IiFDSoIiFDit's IiFDn ot j us t IiFD c o i n c i de nc e , or in e x pe r ie nc e in t hi s f ie ld , i n this typ e o f w o rk w ith p ers o na li ty disord e r. ’” “ M ich a e l 's acc ou nt e xe m p lifi e s co unsello rs' struggle wit h what a p pears to b e an insolu b le p aradox — th a t t h e e sta bli s h me n t of a mu c h ‐needed th e ra peuti c re la t ionshi p is prec i s ely wh at i s m o st li k ely to ev o k e y e t furth e r trauma for the b o rderlin e c lient w h e n i t e n ds: ‘… t h e y could ex p eri e n c e i t as a g ood experienc e of ano t her p e rso n — that n o t e v er y on e 's go i ng t o de s t r oy t h e m , i f y ou w a n t , w h i c h i s t he i r f an t as y … Bu t at t he s am e t im e , y ou IiFD t he n ar e IiFDf a c e d w i t h t he w h o le t h i ng IiFDo f IiFDe nd in g t h at . An d a r e y o u goi n g to do t hem an y good ? And a re we reall y just re ‐tra umati s i ng t hes e peop le ag a in ? ’” /i1 ( Ri z q , 2 01 2) (63) /i1 /i1 Intervention models/i1 “ I t hink an a b ility to m a nage th e i r e moti on s bette r, becau se th e y u sua lly come into o ur se rvice because, o n aIiFD d ay t o d ayIiFD b asis, their emotio ns a re c ausi ng them all sorts of diffi c ult i e s i n th e i r person al l if e , w ith re g ard t o e mpl oym ent, educati on , l e i sure activi ti e s, a nd th e y a r e perha ps ju st g o i n g f rom on e c r i sis or problem, t o anoth e r, an d n o w o nd e r they are an x iou s an d depressed, whic h obviou sly bri n g s them int o o ur w o rld.” (L amph et al., 20 1 9) (54) /i1 /i1 “ M an y re la t ive s have h igh ex p e cta tion s of the men tal health system b ut are di s a p p ointed o ve r ti m e, which a lso res u lts i n a p o o r re l at ionsh ip betwe en the famil y of the pati e n t and pro fe ssio na ls.”IiFD(Koek k o ek et al . , 2 0 0 9) (53) /i1 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint /i1 /i1 “ P il o ts in c l ud e d se veral da y t herap e u tic comm u ni t ies : no ne wasIiFD re sid entia l IiFDbut they ach i e ved a hig h deg re e of consi s ten c y t h rou g h t h e gu i da nc e of s ha r e d c o ns u lt a n t s , s ta ff a nd se rvice user s, a nd the Asso c iat io n of T h e ra peutic C ommun it ies. A T C is: A sa fe and sec u re en v i ron m ent, a pl a ce o f sa f e ty, w h e re p e o ple ca n c o m e a nd learn h o w to m a ke relati on s h i p s… It creates an environ me n t wh er e peop le e n ga ge in normal in te ra c t i on s that trigger beh aviou rs a n d IiFD fee li ng s IiFD t hey ha v e d iffic u l ty with: it’s go t to be a n e moti ona l ly sa fe e n v i ron m ent, w here they c a n re fl e ct o n a n d in te rp re t tho s e feelin gs, so they d o n’t have advers e co nsequenc es.” IiFD ( C ra w f o r d e t al . 2 00 7) (46) /i1 Mana g i ng/i24Sa fe ty /i24 Co nce rns /i24 a n d Cris es : B e i ng M e a su r ed a n d P roac tive /i1 /i1 “ ‘A s a CP N if s o me th in g g oes wron g t h e n th e buck stop s wi th you and then I t hi nk th a t d oes no t h e l p sta ff to take po sit ive risk s . Staff are ve ry d efen sive i n t heir pra ctic e a nd v er y risk ad v ers e an d i n DBT it i s ab o u t accepti n g t hat th i s is a risky c l ient g ro u p and i f we wrap them up in cot to n w o ol a l l t h e time th a t is not treati n g them an d I think it is abo ut h a v i n g a s ervice that is p re p ared to ta k e well th o ug h t o ut positiv e ri sk s a nd I don’t thin k w e a r e ther e y et. B e ca use I think sta ff a re s o scared of t h in gs g o in g wr ong and th e m g e ttin g t he b l ame an d being sued i t i s v e ry h ard to allow cl i e n ts t o have some r e sp on s i bili ty.’” (Strou d an d Parso ns, 2013) (65) /i1 /i1 /i1 “ Ther e is g e n e ra l recogn i tion that no extern al agen t c an stop a person se lf ‐ha rm i ng: re sp on sibili ty lie s w i th th e only person who c an chang e the c ou rs e o f ev en ts , the serv i ce use r thems elves. Pu tt ing self‐ha rme r s i nto h o spit al o n s u ic id e w atch b a ckfires: it take s respo nsib i li ty awa y f rom them. It is b e tter to ta l k to th e m a b o ut how it c omes ab ou t and fi nd some th in g t o d ive rt th e m fro m it .” “ Se veral of the p i l ot se rvice s also ha ve g u i delin e s governin g s taff–c l ient interaction, s u ch a s l i m i ts o n t he a m o un t o f t ime cl ients c a n sp e n d in one‐to ‐on e s d urin g cr i se s … /i1 Staff sug ges t tha t t he a c t of re cord in g mes sa ge s ha s ad va ntages o v er p hon e ca ll s because i t i n troduce s a sl i ght dela y w hich in h ibits i m p ulsi v enes s an d al l ows a natu ra l pa use fo r consideratio n . Other serv i c es h ave s u gg e st ed that e ‐ma il mess a ge s to t he serv ice h ave a simi l ar f unct ion, ev en thou gh t h e y wi l l n o t b e re a d until t h e next w o rk i ng da y… /i1 Methods f or suppo rt in g p eop l e in c ri sis deve l op e d by pil o t serv i c e s see k to ac tive l y i nvo lve service us e rs and tend no t t o pro vide a n i nst ant respo nse. Se rvic e provid e rs re p ort that i f p e o ple h ave bee n h e l ped t o p re p are for c r i se s, a d e l aye d respo ns e c a n help e n sure the ser v i c e u se r p lay s a n ac tive role i n crisi s m a na gement.” (Crawfo rd e t a l. , 20 07 ) (46) /i1 Clin i c i a n a n d Wid e r Servic e N eeds: W h ose N e e ds A re The y Anywa y? /i1 /i1 Clinician needs/i1 “ Som e pa rti cipants w ere clear th at it was no t simp ly more su pp ort that w a s needed, bu t a IiFD pa rt icu l ar typeIiFDa n d q uality o f cl inica l su p e rvisio n. C l are w as cri ti c a l of th e s u pervision she wa s offer ed i n p rimary care, f e elin g t hat i t wa s b a se d on p rovi d i ng ex p e rt ad v i c e and te ch ni ca l i nfo rm a ti on, rather than ex a m i nin g c o m p lex un c o nsc io us process issue s with i n the t herap e u tic relatio n ship. She s e e m s to fee l that thi s is p art of a more g e n e r a l tend e n cy wh e re i ncre asing ly man ag e d or pro fe s sio nalised fo rms of practi ce n ow t a k e p re c edenc e ove r the em o tion al asp e cts o f therap e u tic w o rk : ‘… it's all a b o ut h a v e you fi l led i n th e r ight fo r m , rat h e r tha n ‘ w hat do you need fo r you r work in te rms of e mo t i on al support?’”IiFD /i1 “ ’I think t h at p eopl e w i t h pers o na lity disord e r need IiFDso m e kind o f sec u re IiFD ba se i f you 're goin g t o wor k wi th t h e m… I al s o work i n s e c o nd a r y c ar e y ou s e e a nd w he n y o u w o r k in s econ da ry c a re , it's e a sie r to ma na g e peop le w it h person al i ty diso rder becau se th er e's s o meb ody i f they do feel sui c ida l o r make a s u i cid e a ttem p t, the r e's so me structu re in pl a ce . Whereas i n p r imary careIiFDyou 'reIiFDkin d o f le ft on y o ur o wn wi th some b od y , a n d y o u d on ' t h a ve a te a m to consul t , yo u d on 't have the sup po r t.’ ”IiFD(Riz q, 2 012 ) (63) /i1 /i1 /i1 “ ‘I t ac tu a ll y help s w orke r s to survive i n their work, if t hey ha v e a place to th i nk … O n e of th e m a in t heori e s a bo u t, you k n ow , persona l i ty diso rdere d peop le is t h a t t hey do n ’t have the capacit y t o reflect on t h e ms e lv es an d so i f [they are i nvo lved wi t h] an org an i z ati o n that e q u a lly ca n ’t re fl e ct, yo u ’r e g o in g t o h ave thi s sort o f mirro ring that g oes all t he wa y up from th e c l ient th e mse l ve s a ll t h e w ay u p th r ou g h the o rgani za t ion that's try i ng to hel p t he cl ient. ”IiFD ( Crawford et al., 2 0 10) (37) /i1 /i1 /i1 “ P artic ipan ts no ted th e fla tten e d hi e ra rc h y pr in c iple e n c o ura ged t hem to feel th a t th e y h ad a vo ice i n T C a nd encou ra g e d relati on a l w o rking b y bri d gin g t he g ap betwe en therapi sts and mem b e r s: ‘I felt m o re c onfi dent , I f elt l ike I did ha v e a voic e in th e grou p . ’” ( Vyas e t al . , 20 1 7) (68) /i1 /i1 /i1 “ In effec t, there are a l l so rts of e xp e ctati ons on t h e p art o f all t he p l ayers in t he sys t em, whi c h may mean tha t th o se with t he least p o wer a r e th e least lik ely to h ave their expectatio ns met.” “ Di fferences in mod e ls of u n d e rsta nd ing might a t times be h e lp ful : ‘The opp or tu n ity to h ave a n umb er o f d isc iplines, and ta l k t hr o ug h a parti cularl y dif f icul t c a se … tha t's the stre n gth of the team … i t is th a t e xcha nge o f ideas a nd it does a llev i ate t h i ng s a n a w f ul lot ’ … W h e n a s ked, ‘wh a t help s you k eep wo rk i ng w ith so me o n e when y o u fe el y o u've tried e veryth ing a nd n o th in g se e m s to h ave helped?’, w orke r s re p orted th at jo i nt wo rk i n g, att e n tion to the n e eds of wo rk er s, inclu d i n g g o o d c lin i ca l s u pervision, tr yin g al terna tive inte rv e n tion s a nd w orkin g wi th p e o pl e wh o have di ffere n t m o dels o f u nd e rstan d i n g a n d al terna tive perspec ti v es we r e a ll p o te n tia l ly help ful … I t ca n also depend on mut u a l un ders ta nd i n g a n d res p e ct: ‘If y o u ca n loo k a t th e imm edi ate thing, i t might b e that y ou' v e g ot d iffere n t id ea s b u t so m ewher e abo v e that, t he moti v a t ion . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint m ig ht be common, w here the a im s ove ra rch.’”IiFD (Priest et al . , 2 011) ( 62 ) /i1 /i1 Interagency working/i1and the wider system/i1 “ The h igh but i nefficient use of t he se rvice s of se v era l a gencies b y pat i e n ts…IiFDcon tri bu te s furth e r to t h is la ck of conti n u i ty , the diffu s ed na t ure of t he treatment b e i ng offered by pro fes si ona ls, an d respo nsibil i t y for treatment.” (K oekk o ek et al . , 2 009) (53) /i1 /i1 “ ‘W e get ve ry l i ttle fee d ba c k fro m the talk therapi es team as to how th e y felt t hings went. We o bvio u sly get t h e feedb ack oh the y a t te n ded si x out of t he seven ses sion s or y o u kno w , i n it i ally t hey see m v ery dep re ss e d , b u t y o u n e ve r getIiFDa fee d ba ck IiFD as t o ho w treatme n t is g o ing. I t ’s imp o rtant I fe el b e ca use if t he se rvice works clo s ely with you it h e lp s you t o support the p at ient bette r. Ad d ed t o w hi c h man y of thes e p ati e n ts ha v e other heal th c o m p laints and b e tter commu ni c at io n c an on l y lead to bette r tr ea tment.’ ”IiFD (Fre n c h et a l . , 2 0 1 9) (49) /i1 /i1 /i1 “ A lm o st all g r ou ps o f c linic ians re p orted th e nee d fo r more training in w orking wi thIiFDp e rso nsIiFDwh o h a ve a persona li ty disord er , p a rtic ularly fo r g e n e ra lis t m enta l h e a lth w o rk er s a nd fron t lin e an d a n ci l l ary sta ff. Simi l arly , se v e ra l g roups o f cl i n ic ia ns a lso e mp hasi z ed the need f or a co o rdi n ated an d cro s s‐a gency appro ac h to trai n ing, i ncl u d i ng s ta ff fro m oth e r governm e n t a gencies that ha ve mo re f re q u ent contac t w i t h clie n ts wi th person ality di s o rders, su c h as s o c ia l se rv ice o rganiza ti o n s. Th i s is in o rder to e n c o ura ge an intensive an d i n tegra te d case managem e n t ap proach (e . g. IiFD ‘c oo rd in ated wh ol e of te a m tr a inin g ’ , an d ‘c ro ss‐ag e n c y tr a in i ng w it h in local a re a s: h e a lth , poli ce, c o m mun ity me n tal heal t h, c u sto d i al serv ice s, com mun ity se rvices ’ ).”IiFD /i1 “ A noth e r t heme th at emerg e d was t h e need fo r be tter ackno wle d geme n t of the ex i ste n c e o f p e rson al ity di s o r der a s a d ia gnostic g r ou p , an d a recognition of t he costs and tim e requ ired to h e l p th e se clients (e . g. ‘acknow l e d ge th e diso r d er: it e xists, i s tre a table, w o rthw hile, a nd e co nomic a l ly goo d t o treat’, ‘see i ng tre a tm e nt of pers o na l ity diso rder as c o re busi nes s, a l on gs id e mo od and psyc h ot ic diso rders ’ , a n d ‘rec o gn i ti o n of the enormou s cost o f t h e diso rder in te rm s o f h e a lth se rvice res o urce s, cl inici an time, [an d] admin istra ti o n’ ). ”IiFD(Fa n aian et a l . , 2013) (48) /i1 “ ‘P romot i ng the n e w s ervice w i th th e ri g ht b a l an c e o f ex p erti s e a nd u n ce rta in ty o r h umi lity h a s been ch a l leng ing. It w as d iff ic u lt to p r omote th e se tting u p of a s p e ciali s t s er vice w i thout i m plying t h at existin g service s h ad somehow fai l e d t h is cl ient group. It is imp orta n t t o n o t locate ‘b l a m e’ i n eith e r t he pa t ient o r t h e w ork e r [ w h o m a y natu ra l ly fee l her / h ims elf to be the b ru n t of c ri t ic i sm]. A nd it’s a d o u ble‐edg e d sword : they wa n t to r ef e r to you, b ut s u cc e ss is rese n t e d : you h ave t o w o rk wit h that.’”IiFD(C r awford et al. , 2 0 0 7 ) (46) /i1 /i1 Establishing new services, interventions and skills/i1 “ C l inic ia ns felt th eir con f id e n c e to rec a ll theory an d detail p ost training co u l d fa d e, as they rol l e d on with dai l y c ase m a na g ement act ivity.”IiFD( B osa na c et al. , 2 0 1 5 ) ( 43 ) /i1 /i1 “ Se veral ad m inistra t ors d e scrib e d the i m p ortance of on g o i ng tra i n in g t o a cc o m mo date sta ff tu rn ove r, exempl ified by the a dmi n istra to r who saidIiFD‘T h e re a lso is no p rovisi o n f or train i ng n e w p e o p l e o nce t he tra i n i ng is ove r. We do n' t li k e th at [ t h e tr ai ners are] o ut a fter th a t in ste a d o f p rov id i ng tra ining on an o ngoi n g ba sis. ’ ”IiFD(H e rschell e t al . , 20 09) (50) /i1 /i1 /i1 “ The re spon dents w ere ask e d to pr o v i de gen e ra l f e e d ba ck o n how IiFD tr ai n ingsIiFD c an ad dres s the challeng e s o f i m plementi ng IiFD D BTIiFDmentio ned ab ove . S ev e ra l respo nd e n ts discussed th e diff ic ul ti e s i n e stab l ish ing c o l la b o rat i o n betw een team s a t d i ffe ren t ag e n c i e s a nd viewed t hi s col l a b orat i on as k ey to s u stainabil i ty of t heir D B T pr og ram, due in part , to the c ha n g ing o f staf fi ng a nd t he lo ss of many team me m b e r s d ue to f in a n c ial cu tba ck s.”IiFD ( Ca rm el et al. , 2 0 1 4 ) (44) /i1 /i1 /i1 “ B e cau se of t h e fact th e network w as ini t ia l ly a pi lot there wa s l i m ited ac ce ss to fu ndin g a nd re so urce s and t h e i r ca p ac ity t o coordinate care fo rIiFD a la rg e nu mber ofIiFD cl ients w a s res tri c ted. I t app e a red to the referring bodi e s t h at the network wa s u n able to c ope wi th th e scal e of nee d .”IiFD(Ho ga rd and El li s, 2 01 0 ) (51) IiFD /i1 /i1 “ Trai ni n g al o ne was perc eived a s in s u ffic ient for p ra c ti c e, b u t a c o m b inati o n of train i ng a n d h a nd s ‐ o n e xp e ri ence was use f ul to build c onfi dence. O n e p arti c i pant sta te d ‘that could perha ps b e a g ood t hi n g if i t w as—i f ev eryon e sa w at le a st on e person t hro u g h i t … th e y felt c o m f ortable i n it, th e y felt that they c o u l d rela x … they co u l d actually eng ag e b ette r with th e person. ’”IiFD IiFD (Pi g ot e t al., 2019) (61) /i1 /i1 /i1 “ Ho we ve r, there we r e so m e clear a re a s in whic h t h e pa r ticip a nts were less s a tisfied, for e xa m p le, wi th the via b ility o f po st‐tr aini n g impleme n tatio n o f metho ds, most nota b l y associa te d wi th a perce p tion o f an incre a s e d time press u r e c rea ted by some of t he p ract ices sugg e st ed. ”IiFD (T h ompso n et al ., 200 8 ) (67) /i1 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint 1. The use and misuse of diagnosis 200 Our main a im wa s to synthe si s e evi denc e on c linic ian vi ews o f goo d prac tic e, bu t it w as clea r 201 that und erly ing be lie f s abo ut th e na ture of s uc h dif fic ulti e s and th e a ppr opr i a te u se o f dia gno si s 202 influe nc ed clini cian s’ pe r s pec t iv e s on ca re . A f ew s tudie s r epor ted that som e cl inici ans found 203 co nceptual i s i ng and di agno sing dif ficul t i e s a s “per son ality di s or der” help ful. T h ey saw it a s o ff ering a 204 ‘c ommon la nguage ’, an d a us ef ul wa y to unde rst and servic e u se rs’ di ffi culti e s, w h ile al so h elping t o 205 ens ure t hat se rvice use rs we re see n a s h avi ng ge nuine ne ed s. 206 Howev er, ac r o s s a numb e r o f studie s, c li nic ians qu e stion ed th e u se, mea ning and v alidity of 207 this di ag no s i s. Th ey s aw it a s being a ssoc i ated wi t h stigma , disc rimina t i on and e xcl us i on fr o m 208 se rvice s, fe l t it coul d b e dif fic ult to ‘ shak e off’ , an d ri sked becomi ng “the p er s on’ s entir ety” (47) . 209 Pati en t s wi th a p sych os i s w ere s een a s n ot a cco un tabl e a n d in n ee d o f s up po r t . B orde r li ne 210 patie n ts, how eve r , were c on sid ered the a tr ic al, p o s in g, a nd i n nee d o f p uni sh me n t . 211 Psyc ho l o g i s t desc ribin g a crisis i n te r v e n t io n t e am ( K oe kkoe k e t a l., 20 0 9 ) (53) 212 Acc ount s of t h e u se of “p erso nal ity di sor der” dia gno se s in non - speci ali s t pr i mary and 213 secon da r y ca r e serv ice s sugge s ted it w a s made a t t i me s on a ba si s of “gut in st i nc t ” (54) o r “g u t 214 f e e lin g ” (70) or beca us e o ther di agn o s e s di d n ot ‘fi t’ . An inv e s tig a tion o f c linic ian v iews in g ene ric 215 co mmunity a nd volun t a r y s e ct or s e r v ice s found th a t some p er c eiv ed “pers onal ity diso rder” a s 216 es se nt i al ly “a form of s oc ial d e vianc e or c ultur a l rul e- bre ak ing” (64) , whi le others f elt th at th e lab el 217 wa s a n unh elp f u l me dic ali sati on of l egiti mate fe eling s o f di s tr e s s , e spec ia lly among women . In thi s 218 st u d y, as in sev eral st u di e s exa mining p e r sp ec tive s o f sp ecia li st clini cian s , a major ity of c linic ian s s aw 219 trauma a n d adv ersity a s m ajor ca u s e s o f “pers o na lity di sord er”. As a re sult o f c on cern s abou t 220 dia gnosi s, c linic ians w e r e re por t e d in sev eral s tudi e s to b e r e luct ant to u se thi s la b el and t o avoid 221 discu s sing it w ith s e r v ice u ser s. So me op ted f or al t e r n a t iv e dia gno s e s ( e .g., c ompl ex post- trauma tic 222 stre s s di s ord er ) or emp loyed wha t th ey consid ere d to be ‘ euph em is m s’ lik e “dif fic ulty manag ing 223 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint emotion s” (66) . Ot he r sp ec iali st cl inici an s re por t ed t h a t t h e y pre fe rred a foc u s on n arra tive 224 desc ription s o f pr e sen ting d if f i culti es rat her tha n rely ing on a “per s on a lity di sord er” di agnosi s . 225 2. The patient journey into services: nowhere to go 226 Acc es s to s ervic e s f or p eo ple w ith CE N wa s r epor ted i n s e ve ral studi e s to be a per s i st ent 227 diffic ul ty, w ith GP s i n one stu dy (49) report ing longer w aiting t im e s th a n fo r any o t h e r g r o up o f ment al 228 hea lth s e rv ice u ser s. R e fer ral s fo r s pec ial ist supp ort we re impe d ed by fact or s suc h as a l ack o f loc al 229 se rvice s, l ack of aw ar ene s s o f s ervic e s, fre quen t cha nge s to se r v ice s, a nd poo rly e s t abl i s he d re fe r r al 230 pathw ays . This w a s f e lt t o r i s k di s e ngag e ment, e sca l ation o f di st re ss, or mi s s i ng wi ndows o f 231 opport unity to p rov ide e ff ec tive suppo rt. 232 Thres hold s f or acc ep tanc e by spec iali s t s ervic es we re r epor ted in some st udie s to be 233 inc ons i sten t and infl uenc ed by s ubj ectiv e judge ments reg ardi ng for ex ample ‘ s ev e rity’, ‘ stuck ’n e ss or 234 ‘motiv ation to eng age ’. Ma ny se rvic e us e rs w er e ex cluded fr om s pec iali st su ppor t due to bei ng 235 perce ived a s a ri s k t o oth er s (e .g., throug h h aving a foren sic hi s t ory), h a ving s ub st ance misu se 236 problem s, ex hibit ing behav iour con sid er ed t oo ‘p r o blem atic ’ or ‘ch a otic’ , or b ei n g seen a s ‘ non -237 psych ologic ally minded’ . 238 Ref err er s such a s G P s in s ev e ral studi e s a lso r epor t e d di ff icu ltie s ge tting servic e u s er s 239 ac cepted by g ene ric, main strea m comm un it y mental h ealth tea m s or p syc hologi c al t rea tme n t 240 se rvice s. How ever , in othe r studi e s, c linic ians wo r k ing in t h e s e gene ric te ams s a w their el igibili t y 241 criteri a a s over -incl u s iv e, w ith on e s tudy de s c r ibi ng them a s a “dum ping g r ound ” f or any one w ho did 242 not ‘f it’ e l sew her e (62) . S t e ppe d c are pa th wa ys coul d al so co ntribut e t o di fficul tie s ac ce ssing 243 appropri at e t r eatme n t . F or exa mple, c lin ic ians in t h e U K r e po r t ed being e ncou rag ed to r ef er initi al ly 244 to primary car e Im pr ov ing Ac ce s s t o P s y cholog ica l Therapy ( IA PT) or mai n stre am s ec ondary c ar e 245 se rvice s, rat her than to s p e cial i s t team s. Howe ver, kn owledg e and ca pa city fo r tr e ating CEN wer e 246 oft en seen a s l a ck ing in t he s e gen eric se rv ices, w ith pe ople with CEN no t priori ti se d and clin icia ns 247 feel i ng they did not h a ve the ski ll s t o d eli ve r e xpec ted ca r e . Som e r e f e r re rs d e s c ri bed ‘e mbelli shi ng’ 248 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint ref erra l info rmati on to me et th r e s hol d s f or sp eci ali st s upp ort . Howe ver, in o t he r c as es, GP s a s w ell 249 as a s s e sso rs in sec onda ry care servic e s , ‘ downpl ayed’ s erv ice u s e r s’ dif ficu l t i e s or risk l evel s an d 250 empha s i sed ‘ more agre ea bl e’ tr ait s to meet thre s h ol d s fo r prima r y care s upp ort , such a s I APT 251 se rvice s. S ervic e u se rs c ould en d up be in g pas s e d bac k and forth i n “a t e nni s bal l e ffe ct” (54) w i t h a 252 hig h but inef fic ien t u se o f servic e s . 253 You know if you me nti on ‘ PD’ there w ill b e nowhe r e a t all fo r t he m t o go so I’m u sua lly v ery 254 ca r e ful n ot t o pu t i t d own i n t heir n ote s. I usu all y say de pre sse d o r a bi t anx io us . Some th in g 255 t h at w on ’t m a k e t he m t h in k t he pa t ie nt is ri sky. It’ s a b ou t know in g t he ho op s t hat you’v e go t 256 to jum p thr o ug h. 257 GP (F re nch et al., 2 01 9) (49) 258 The r e fe r r al pr o ce s s w a s rep orte d to b e f ac ilitat ed b y good working rela tion ship s and 259 co mmunica t i on be twe en r ecei ving clini cia ns a n d re fer r e rs , outr eac h by sp ec iali st s e r v ices to rai s e 260 vi s ibi lity and expl ain se rvic e model s, a nd ac ceptanc e of sel f -re fe rr a l s , whic h s om e fel t co uld be 261 empow ering a nd inc lu s i ve. S om e re fe rre r s v alue d h oli s tic , in -de p t h a sse s s me n ts and for mu l ation s 262 from specia li st c linic ian s, pa rtic ularly non -medic al, n on-p syc hia tric o r p syc hodyn a mic f o r mul ati on s , 263 ev en if servic e u se rs ultim a tely w eren ’t t aken on, a s th e se co uld in form t rea tmen t pla n s a nd 264 fac ilit ate the rape u t i c rel ation ship s . 265 3. Therapeutic relationships: connection and distance 266 Strong, tru st i ng r elati on ship s be twe en c li nici ans an d s ervic e u ser s w er e seen as k e y to 267 trea tmen t succ ess ac r o s s many s t udie s , bu t c linic ian s’ ex peri enc e s o f suc h rela tio nship s va r i e d 268 greatly bot h betw e en and within s tudie s . In seve r a l st udi e s , clini cian s w ere kee n t o empha si se th e 269 posi tive s of w or k ing w ith pe opl e with CE N , de s c ribing t h e m a s ‘rel ata ble ’, ‘ hone s t ’ and ‘crea tive ’, 270 and see ing th e role o f th e cl inici an a s bei n g to “h arne ss tha t” (37) . Howev er , nega t i v e feel ing s and a 271 sen se of bu rnou t were al so fre quen tly de s c r i bed, w it h clin icia n s v iewi ng (o r repo rting tha t oth er 272 cl inici ans view ed ) s ervic e u sers a s ‘ dem a nding’, ‘cha llengi ng’ , ‘ri sky’ , ‘dep en dan t’, ‘sel f -de s t ruc t i ve ’, 273 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint ‘man ipulativ e ’, ‘non -c omplia n t ’, ‘untre a t able’, an d lik ely t o ‘pu s h bound arie s ’. S e rv ice us e rs ’ 274 diffic ul tie s wer e s een a s e nduring bu t ur ge nt , and c linic ian s co uld fe el overwhel med by “a 275 bottoml e s s pool o f nee d” (70) e s p e cial ly as c omorbid dia gno se s a nd wi de r s oc i al i ss ues with h ou sing , 276 empl oyment, fina nce s a nd soc ial n etwo r ks were o ft en a l s o pre s en t. C li nic ian s de s cribed f ee ling b o t h 277 idea li sed by s ervi ce u se rs and a s thoug h nothing th ey did w as good e n ough. Whil e e st a bli shi ng a n 278 authen tic co nnec tion with servic e u se rs w as see n as vit al, clini cia n s a dmit t e d to f ear s o f being 279 “suc ked dry ” and “emotio nally s w amped ” (63) , e x perienc ing fe e ling s of vul ne rabili t y and of be ing 280 dang erou s l y on th e edge o f lo s in g th eir s ense of se lf . 281 Partici p an ts sp ok e repe ate d ly ab ou t th e nee d t o mai nt ai n a psyc holo gic al di s ta nc e from 282 cl ients i n order t o p r e v ent the ms elv e s fro m bec omin g ov erwh e lmed or b urne d o ut . 283 (Lan gle y & Klo p pe r , 2 005 ) (55) 284 In a few stu die s, how eve r, c linic ian s rep o rt e d they f el t abl e to ma ke u se o f t hei r u ns e ttling 285 feel i ngs t o conne c t with s ervic e u ser s’ o wn fee ling s. Al though the re were ex cep t i o ns , n e gative 286 atti tude s and e xperienc e s appe a r ed p arti cula r ly preva len t in ma in s tr eam pr i mary and sec ondary 287 ca r e s e r v ice s. Th i s w a s at tr ib u t e d t o poor under st a nding o f CEN in th e se settin g s , to s t af f bei ng 288 ove r bu r d en ed bu t ina deq uat ely s up p or t ed, and t o ob serving poor o utcom e s , l ea ding to fr u s tra tion, 289 hopel e ssn es s, and somet ime s fe elin g s of aggres si on and blame tow ard s se rvic e us er s . Sugg e s ti on s to 290 co mbat nega t i ve a ttitud e s inc luded be tter s upervi sion and traini ng by spec iali s t s to i mpr o ve 291 under st anding, compa ssion, a nd perc ep tion s o f t rea tment e ffe c tivene ss, al o ng wi t h mor e s up po r t 292 from ser v ice s for c linic ian s t o enga ge w ith s up e r v is i o n and tr aini ng. 293 Overall, t h e impr es s i on acro s s studi e s wa s th at c linic ian s de scrib e d th e nee d t o be authen tic , 294 non-judg emen tal, empathic , col labor ativ e , hope ful, mo t i vating , con si ste nt a nd de pe ndabl e t o build 295 tru s t w it h s e rvi ce u ser s, whom t h e y unde rsto od of ten to hav e had hi storie s o f a b us e o r 296 aba ndonmen t by key attachm e nt f i gure s. The im por t an ce o f ‘ knowi ng’ s ervic e u se rs, hol ding th em in 297 mind, and a cknow ledg ing the r ea li ty of t heir e xperi enc e s wa s empha s i sed . Wh en r e lati on ship s went 298 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint we ll, c linic ians d e scribed suc ce s sfull y ne g ot i ating c onn ec t i on an d di stanc e in the t h era peu tic 299 relati on ship: b eing op en, wa r m an d av ail a ble, bu t a l s o r e tai ning bo und arie s , struc ture a n d a de gre e 300 of emo tio nal d etac hme nt. Cli nicia n s spo k e of a n e ed to c rea te a sen se o f shar ed r esp on s i bility f or 301 progre s s w ith ser v ice u s e rs, and o f th e va lue of ad opti ng a curiou s, non -ex pe rt st anc e to hel p 302 dev elop a s a fe s pa ce w he re strong emoti ons cou ld b e proc e ss ed, tol e r a t e d a nd “radica lly 303 ac cepted ” (47) . 304 Clin icia n s w ho rep ort ed more po si tive r e l ation ship s te nded to be t ho se w ho f elt b e t t er 305 suppo rte d, f or exa mple d esc ribi ng bet te r team w orking, s u pe r v i s i on, a nd i nf or ma l suppo rt from 306 their c oll eag ue s, a s wel l a s long e r-te rm t r e atm ent framewo rk s, w hich allow ed ti me for r ela t i on s hip s 307 to dev elop . S uch s uppor t appe ared to be mu ch more a vail able i n more sp ecia li sed service s. 308 4. The nature of treatment: not doing too much or too 309 little 310 Clin icia n s ’ be li e fs r e gardi ng appropr iat e duratio n of t re a t me n t , and how be s t to n egotia te 311 not doin g ‘t oo muc h’ or ‘ too li ttle’ , were c omplex . There wa s con sen su s acro s s st udie s tha t peop l e 312 wi t h CEN had lo ng -te r m ne ed s, but in a f ew studi e s cl inici an s voic ed c oncern s tha t open -end e d, 313 long -term suppor t cou ld be t oo d eman di ng for s ervi ce u se r s t o enga g e wi t h, to o re sourc e -int en s i ve, 314 or co uld re sul t in ‘dep e ndenc y’ and a l ac k of delive r y of in te rven t io n s w ith cl e ar t herap eutic cont ent , 315 partic ula rly in generic second a r y ca r e s e r vi ces. Clini cian s f elt tha t i t was impo rtan t to be re a li s tic 316 abou t w hat they could achi eve a nd to av oid se tt i n g ex pectat ion s tha t th ey could ‘fix’ e verything . At 317 the same t im e , in seve ra l studi e s c linic ia ns emph a s i s ed tha t no t of f e r in g su ffi cien t l ong- term s upp o r t 318 co uld re sult in un real i stic expe cta tion s f o r r e cov er y , di sapp oin t me nt and und e rtre atmen t. S eve ral 319 st u d ie s r e por t ed a pe rce ived lack of we ll - deve loped , lo nger -te r m s uppor t progr a mmes a t a medium 320 lev el of i n t e n s ity . 321 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint The require me n t s of the s y s te m d o not al w ays fit wit h the need s o f t he pe ople wh o are u sin g 322 the servic e: T he ex pec ta t io n is th at you w ill rec ove r … yo u wil l ge t ou t o f t he s e r v ice … w e c an 323 only work with y ou for a c ertai n am ou n t of ti me … It jus t d o es n't work a s sim ply as tha t. 324 Mains t re a m s e c on dary care cli n ic ian (Prie st et al. , 2 011 ) (62) 325 Acro s s s tudie s, c linic ia ns d e scribed a n ee d f o r ba l anc e be twe en r ecog ni s i ng the l i mits o f 326 wha t could be ac hiev ed , mana ging t h e e xpe ctation s o f bo th c linic ian s and servic e use rs, and 327 mai nt a ining hop e. In on e st ud y, c linic ian s s a w a t e n dency in ma instr eam s et tings for cl inici an s to “do 328 co mpletely no thing” (53) in therape utic en c ounter s with p eop le wi th CEN, or alt ern ative ly to di spla y 329 ‘fal se op t im i s m’ or ‘ t he r a peu tic n ihili sm’, rapidl y disch a r g ing se rvic e us er s d ue to underly ing fe el ing s 330 of pow erl e ss an d demo rali sat ion. Para do xi call y, how ever, suc h und ert r e a tmen t th en had t h e ef fec t 331 of inc re a sing the v ery ‘d e pend enc y’ c linic ians fea red, a s s ervic e u ser s h ad to ke ep ‘co ming ba ck f o r 332 more’. 333 Prema tur e di s c h arge w a s iden tifi ed a s c o mmon a nd wa s put d o wn to c linic ian s se eking to 334 ‘e sca pe’ from work t h ey found chal l engi ng , to se r v ice r e cove r y model s c onflic tin g with servic e u se r s ’ 335 nee d s , a nd to pr essu re s t o move people o n. Yet, the re w a s cons en su s acro s s seve r a l studi e s tha t 336 discha r g e cou ld be pa r tic ula rly chal lengi ng for peop le with CE N a nd ne ede d to be man aged 337 sen s i t i vely , e specia l ly b ecau se o f a ssoci a ted sa fety i s s u e s ( e .g ., due to serv ice u s e rs feel ing 338 aba ndon ed by cli nicia ns). V i ew s dive r g ed , how ever, a bo ut th e be st way to a pproa c h discha r g e . For 339 ex ample, in one stu dy e valu ating spec iali st s e rv ice s fo r CEN (46) , som e c linic ian s fe a red tha t o pe n-340 ende d s e r v ice use without a c lear pl a n fo r discha rge coul d re duce s erv ice u se r s’ motivatio n to 341 dev elop c oping s k ill s, a f fect the s e rvi ce’ s ca paci t y to t ake on new r e fe r ral s , a nd en c our a ge 342 ‘depe nd enc y’. The se clini cians fel t ha vin g dis c harge o r self - su ffici e ncy as a time -s pecifi c goa l f rom 343 the be ginning o f ca r e wa s hel pful . Howe ve r , oth er clin icia n s in th e sa me s tudy fa v our e d of fe ring 344 co nt i nuing s uppor t at a low er le vel o f i nte ns i ty ( for examp le through p e er s uppo r t), r ath er th an 345 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint abso lute di s c h arge f oll owing a perio d of i nten s i ve t rea tment , w ith cl ear p rovisi on s for re -e ngagi ng 346 w it h s er v ic e s if r eq u i r e d. 347 Sho r t -t erm th erapy, suc h a s th at o ff ere d by IAPT in the U K, t e nd ed to b e seen a s 348 insu ffici e ntly fl ex ible and in ten sive f or pe ople with CEN . In on e s t ud y, prima ry car e c linic ians 349 desc ribed a sen se tha t th ey w ere “sh ort - chang ing” s e r v ice u s er s (63) . In a f ew studi es , c linic ians als o 350 ex pr e s s ed f ea rs that sho r t -t erm suppor t c ould p ot e n t i ally be ha rmful o r e xperie n c ed by s e r v ice u s e r s 351 as ‘a ba ndoni ng’ and ‘r etr aumati sing’ . H o w eve r , in a small numb er o f studi es cli nic ia ns did a rgue t h a t 352 sho r t -t erm su ppor t had va lue, e ith er at spe cific poin ts in s ervic e u sers’ tre atmen t journe ys, or fo r 353 tho se with l e ss seve re d i ff i cul tie s. 354 Clin icia n s in multipl e studie s al s o und er l i ned the n eed t o del iver b oth p syc hoth er apeutic 355 interve n t i on s a nd p ragma t i c socia l suppo rt to me et t he va r i ed and fl uc tuati ng nee ds o f thi s 356 popul ati on. P ragma tic suppo rt, whi ch w a s r e po rtedly of fe red mor e of ten in s p e cia l is t s ervic e s, coul d 357 inc lude v ocatio nal , ed uca tiona l , soci al , sub stanc e mi su s e , o r par enting s uppo rt, a s w ell a s skill s to 358 promot e inde pe ndenc e . 359 Intervention models 360 Spe cific t r e a tment mod el s tha t c linic ian s repor t e d a s havi ng th erap eutic b ene fi ts i nc luded 361 Diale c tic Behavi ou r Therapy (DBT) , M e n ta lisa tion B a sed T hera py (MBT ), C ogni tive Analytic Therapy 362 (CAT ) and p s y chody namic formul ation s . Howev er, in sever al studie s c linic ian s al s o emph a s i sed t h a t 363 ‘one s ize do e s not fit a ll ’, tha t di ver se , fl e xib le trea tmen t option s we r e ne eded wit hin me nt a l he a lth 364 se rvice s a nd in prima r y ca r e , and th at m ore formula t i on -dr i ven t rea tmen t s coul d be more ben efic ia l 365 than th os e ba s ed o n diag no s i s or drive n by ma nuals. 366 The r e wa s a c on sen s u s ac ro ss studi e s th a t a va r ie t y of app roac he s coul d b e tak e n to s ome 367 co r e t h e r a p eutic ta s k s, ma king a ra nge o f inte rventi on s simila rly ef fec tiv e in a chie v ing g ood 368 outco me s . Clinic ian s t ended to see d i f f i c ultie s wi t h manag ing emo t io n s a s c ent ral in C EN , and 369 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint prioriti se d int erven tion s tha t promo ted de velop men t of s k ill s rel ating to emotion regu lation , di str e ss 370 toler anc e, o r dev eloping a c ap ac ity for th ink ing and feeli ng ra the r t h an doin g . Simi l arly, mo del s t h a t 371 help ed se r v ice use rs to p rac t ic e their i n terpe rs onal ski lls ( e .g., v ia group s, p e er s u pport, o r 372 ther apeu tic comm unitie s ) were se en a s v aluab le in sev e r a l st ud i e s . DBT was th e s pec ific th erap e utic 373 i n t e r v ent io n m os t oft e n d is cus s e d in s t ud i es an d c li n i c ia ns i d e nt i f ie d s e ve r a l be nef it s f r o m t h is . As 374 we ll as hel p ing s ervic e u ser s de vel op be tter r ela ti on s hi p s a nd emo tion reg ulati on, c linic ians f elt i t 375 wa s b a s e d o n a c lea r mo d el and manual , and tha t i t pr omo t e d ho pe, d e crea s ed medi cation u se, 376 enc ouraged servi ce u ser s to t a ke re spon sibili ty f o r t rea tmen t, a nd h elpe d enc oura ge c ompas s i on, 377 under st anding and t eam working on the pa r t o f c linic ian s. Clin icia n s i n s om e s tudi e s d id , howe ver, 378 also repo rt th at deli ve ring DBT plac ed co n s id e r a bl e dema nd s on them and the ir serv ices , inc luding 379 the ne e d fo r int en sive trai ni ng, impl eme ntati on of a com pl ex m odel al lowing rela tive ly li t tle 380 flex ibility , and b e ing c ontac tabl e o ut s i de of wo r k ing hou rs. 381 Format s lik e group s , pee r sup por t, and the r a p eutic c ommuniti e s w ere al so va lu e d for 382 broaden i ng the r ang e of av aila ble op tion s and prom ot i ng c ollab ora tiv e, u ser - l e d model s o f c ar e and 383 empow ering servic e u se rs to h ave o wne r s h ip ove r thei r tr eatme nt i n a mor e d em ocratic way . 384 Fi nally, s up p or t for fami ly and f r ie nd s wa s iden tifi e d in sever al studie s a s im po r ta nt bu t a s an a rea 385 whe r e eve n well - r es ourced s p ec iali s t se r vice s o ften f a ll sho rt de s p i t e t he pe rce pt i on that p eopl e 386 wi t h CEN o ft e n expe r i e nce dif ficul tie s w ith rela tion ship s . 387 5. Managing safety issues and crises: being measured 388 and proactive 389 Mana ging s af ety issu e s was c on s i d ere d vital acro s s all t rea tmen t s et tings . The n a t ur e of 390 deli ber ate s elf -ha rm and o t h e r sa fe ty iss ues in the c on text o f C EN wa s s e e n as di f fering fr om acu te 391 pre sen tati on s in oth er ment al heal th c on dition s bec au s e of i t s chronic , r ecurre nt and t o s ome ext ent 392 predic ta ble na t ure . A s s uch , cli nicia n s f e l t it could be pr epar ed fo r pro a ctivel y, th r ough op en 393 dia logue w ith service u s e rs to ag ree pa ra meter s within whic h cli nicia n s would re s pond. 394 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint In a s ma ll numb e r o f studi es , c linic ian s s uggest ed th at ‘r e scuing ’ or step ping in t o o quick ly a t 395 time s of c r i si s cou ld be d e trimen ta l or di sempow e r in g fo r se r v ice u s er s . Howev er, ther e was a 396 co mpeting ne e d not t o bec ome n e glec tf ul, with a lac k of c on s e n s u s r egarding ho w a vail able 397 cl inici ans s hou ld mak e them selve s . Vi ew s abou t out of hou r s se r v ice pr o vi sion va r ie d. I n one s tudy o f 398 co mmunity-ba se d me nt a l h ea lth servi ce s imple menting DBT, s om e clin icia n s de s c r ib ed 24/7 399 av ailab ility or a n ‘ on c all’ sys tem a s a ‘ s t e p ba ckw ards ’ a nd ine f f e ctive. But in o the r stu die s clin icia n s 400 argue d th at thi s wa s impor tan t, and th at great er av ailab ili ty of suppo rt in fac t u s u a lly r ed uced t h e 401 nee d f or it. Some clini cian s f elt that p e op le w ith CEN we re see n a s ‘ bad’ for po sing a sa fe ty risk, in 402 c on t r ast t o t hos e w i t h ot h e r d iag n os es , s u ch a s ps y c hos i s, wh o w e r e s ee n as ‘ m a d’ . 403 Prac t i c e in main stre am ser v ice s w a s de sc ribed in s ome s tudi e s a s ri sk-av e rse a nd r eac t iv e, 404 some time s cre ating a v iciou s c yc le wh ere in s er v ice u s e rs fel t they had to pre s ent in c ris i s to g e t 405 more in put. Clinic ia ns u s ed to d ea ling w ith cris e s in the c on text o f c ondit ion s s uch a s de pr e ssion o r 406 psych o s i s we r e re por t e d t o s truggl e to mana ge th e sp ec ific d ynamic s of s a f e t y conc ern s fo r p eopl e 407 wi t h CEN. Sp ec iali st se r v ice s w e re se en a s ado p t in g more p roac tive a ppr o ach e s, n e gotia ting plan s 408 for mana ging sa fe ty issue s in c ollab o r a ti on with s ervic e us er s , m oving away from ac t io n- r ea c tion or 409 fea rful re spon s es f rom c linic ian s, a n d fo stering owne rs hip of the ma nag em ent o f s a fe ty is s ue s 410 amon g se r v ice use rs. 411 6. Clinician and wider service needs: whose needs are 412 they anyway? 413 Clinician needs 414 A recu r ri ng chal lenge acro s s st udie s wa s for c linic ian s t o reconc il e the i r own nee d s w ith 415 tho se o f s ervice u s e r s . Thi s di l emma w as particula r l y ac ute whe r e clin icia n s l ack ed organis ation a l 416 suppo rt o r adequ ate s up erv i s ion . Clinic ia ns f ound th ems elv e s nego tiating b etwee n meeting th e 417 nee d s o f s ervic e u ser s, t he i r own ne ed s , and w ider s e r v ice ne ed s. Wh en synthe si si ng studi e s, it wa s 418 co mplex at time s to di s entangl e whos e n ee d s w ere in r ea li ty met by particul ar pra ctic e s . Fo r 419 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint ex ample, when clini cian s de scrib e d a ne e d to r educe s e r v ice u s e r s’ alle g ed ‘d ep e ndenc y’ a nd 420 promot e ‘s el f- su ffic ienc y’, thi s se emed in part co nnec ted to clini cian s’ ow n f eeli ng s o f being 421 ove r w helmed , a s well a s t o wide r servic e pre ssure s t o co nserve r e s ourc e s. O n e st udy o f clini cia ns 422 work ing in “persona lity diso r d er” s e r v ice s (37) sugg e s ted tha t s ervic e u ser s’ perceiv ed dif fic ulti e s (e .g., 423 wi t h r e f l ectio n) c ould be ‘mirrored ’ furth er up t h e organi sa tion. Thi s s tudy al so r e port e d tha t se r v ice 424 lea d s a cro ss seve ral te ams ap pea r e d t o be ‘c hari smatic ’ b ut al so ‘ autoc ratic ’ , s eeki n g to ‘que ll 425 dis s e n t ’ among clini cian s by adop ting firm , unequiv oca l sta nce s . In o ther s tudie s, it wa s c lea r tha t 426 s er v i c es , r a th e r t h a n s e r vi c e u s ers , w e re at t im es e x p er i e nc e d by c li n i c ia ns as ‘ d if fi c u lt t o e n g a ge 427 w it h ’. 428 It’ s no t t he pa tie nts th at mak e y ou fr ustr ated now d ays, it’ s the or gan iz a tion arou nd t hat i s 429 trou ble some . 430 D B T T he r apis t ( Pe rs eiu s et al., 2 0 03) (60) 431 The importanc e of cli nicia n s fe e ling supp orted i n t h ei r work w as a c ommon th eme acro s s 432 st u d ie s . Work ing e ff ec tively with p eopl e w ith CEN withou t be comin g burn t out w as se en a s 433 ac hieva ble, b u t t h e organi sa tional s upp o rt nee ded t o do s o w as o ften mi ss i ng , wit h the low priori ty 434 and inves tmen t ac corded to t rea tment o f peopl e w ith CEN af fec t i ng both se rvic e use r s a nd 435 cl inici ans . Clinic ian s va lue d both suppo rti ve r e lati on ship s with c ollea gu es and fo r mal s upe rv is io n in a 436 va r i ety of forma t s , incl uding i ndividua l a nd whole t e am sup ervisi on an d inpu t fr o m ex t e r na l ex pe r t s. 437 The importanc e of ad dre s s ing cli nicia n s ’ own em ot i onal n e ed s , engag ing in r e fl ec tiv e practic e and 438 ena bling c linic ian s to pr oce ss the ir own vulne r a bili tie s and ‘ de s t ructiv e’ emotion s w as empha si se d, 439 but provi sion wa s fr eque ntly de s c rib ed a s ina d equa te. 440 Good t eam -w or k ing a nd s haring re sp on si bilitie s f or t r e a tment and de ci sion s r egar ding s a f e t y 441 also h e lped c linic ian s to f eel suppo rte d. T his appe are d t o be r epo rted mo s t of t e n r e garding 442 speci a lis t te am s , e s pe ci al ly in tho s e u s ing DBT and CAT mod els , an d in th erap eu t ic co mmunitie s, and 443 lea s t frequ ently in prima ry care set ting s – w here “y ou’re ki nd o f le ft on you r own with 444 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint someb ody” (63) . T here cou ld als o be chal le nges in tea m s where o nl y one or t w o cl in icia ns in a t ea m 445 we r e t r ai ned in a pa rticul a r t h er a p eutic i nter v en tion o r skill s e t . W hi l e cl inici an s sa w va lue in 446 inc luding a range of cl inici a ns wit h div er se back ground s and ap p r oa che s they al so fel t thi s could 447 enc ourage “split t i ng”, makin g it more di ffi cult t o dev elop a s ha r e d lang u age or m o del of 448 under st anding acro s s t ea m member s . 449 Havin g div ided c aselo ad s (i. e. , not fully C E N ) w as con sid er ed by some to be b ene f ic ial for 450 integ r a tio n o f CEN wo rk into gene r ic tea ms and fo r sta f f we llbeing . H oweve r , hav in g com peting 451 cl inica l prioriti e s coul d impede the r a peu t ic work, a nd the ‘p syc hologic al shif t’ b et we en va r i ou s rol e s 452 wa s e xperi enc ed by som e a s cha lleng ing . One s tudy not ed t h a t s pec iali st s ervice s tende d to pr omote 453 broad, combin e d role s whe re a ll c linic ian s cont ribut ed to d e livering th e the rap eut ic model, but thi s 454 requir ed sign i fican t tr aini ng. S pecia li s t servi ces s o m etime s had ‘fla t hie rarchi es ’ w hich could be 455 empow ering bu t al so fr u s tr a t i ng fo r cl inici ans when re spon sibili ty was equ a l but authori ty or pay, f or 456 ex ample, was n ot. 457 Interagency working and the wider system 458 Eff ec t i ve in ter -t eam and int er -age ncy working was c onsid ere d impor tant for man ag ement o f 459 the re s ource -in ten sive , multi -ag e ncy, an d oft en o ut-o f -hour s s e rv ice use by peop l e with CEN. 460 Howev er, re por t s o f in ad equa te commu nic ation b e t w een s ervic e s were c ommon a t all le vel s o f 461 ca r e . Chall e nge s inc luded h igh sta f f t u r n ov er, sta f f c utbac k s due t o reduc e d budge ts, tim e 462 co nstrain t s, and di s ag re emen t s be tween clini cians or c ompe ting p r io ritie s , w ith p oor int erage ncy 463 work ing le aving cli nicia ns fe eling more a nxi ous and le s s con tai ned . P re -ex isting , p er s on al, o r goo d 464 prof e ss i ona l r elati on ship s and clea r ly as sig ned re spon sibili tie s ( taki ng into ac cou n t s ervic e u ser 465 pref er enc e s reg a rding c linic ian s and serv ic es whe re po ssible ) f a cili t a t e d in ter agen c y w or k ing. 466 Clin icia n s in main stre am service s r epor te d in s ev er al s tudi es tha t they v alued s up port from 467 speci a lis t servi ce s, such a s i n hub and s p ok e model s , w her e sp eci ali st staf f pr ovid e exp ert 468 as s e ssme nt s , ca se c on s u l t a t i on, sup ervisi on, a nd s ta f f trai nin g to main s t ream se rvic es. This mod el 469 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint wa s p er c eiv ed a s mak ing ef fic ien t u se o f spec i alis t s ta f f, a llowi ng th em to suppor t not only tho s e on 470 their small ca sel oad f or inte n s iv e th erap y but also a much w ider gr oup be yond t h e d edica te d 471 se rvice s. How ever , re se rvation s ab ou t su c h models we re de scrib ed i n a f ew studi e s, i ncludi ng tha t 472 speci a lis t inpu t fro m s p e cial i s t s coul d un dermine pro fe s si onal r ol e s i n main stre a m servic e, may be 473 inef fec tive o n an a d hoc r a the r tha n s u s t ained ba si s , a nd risk s s pec ia li st cl inici an s havin g 474 unsu stai nabl e w orkload s . T h ere wer e al so s ome ten s i on s i d enti fied b e t w e en ma i ns t ream an d 475 speci a lis t s ervi ce s, whe r e main st r ea m se r v ice s w er e se en a s hav ing to ‘ fi ref ig ht’ wherea s spec iali s t 476 se rvice s w e re pe rce ived t o h ave grea ter f r e edom to ‘ sel ec t’ s e r v ice u ser s, r efu se certai n 477 re spon s ib ili tie s, and p r io r i ti se tim e fo r re fle cti on. 478 Establishing new services, interventions and skills 479 Fi nally, a numbe r o f s tudi e s w ere cond uc ted in t h e cont ex t of e s t a bli shing a new s ervic e or 480 interve n t i on pr ogramme, an d thu s th em es emerged rel a ting to g ood pr actic e in i nitial 481 imple menta tion . F acto r s t h a t were c on si dered h elp ful fo r devel oping ne w servic e s or in ter v en tion s 482 inc luded: manage r ia l suppo rt , re crui tme nt of ap propri at e sta ff , le ad er s hi p th at e mbrac ed 483 unc ert a inty and allow e d c linic ians fre edo m to innov ate , te am building , cro s s - a gen cy and whole t e am 484 training , an d ha ving r e ali stic pl a n s , t i me sc ales and budget s . Ongoing s u stai nabi lity of ne w s ervic e s 485 wa s f a cilita ted by in teg r a ting them i nt o e xisting s ervic e sys t e m s , e ffe ctive in ter agenc y w or k ing, and 486 mea s u ring and dem on stra ting g ood outc om es. Clinic ia ns tr a in ed in new mo del s d escri bed fee ling 487 lik e ‘beg inner s’ de spit e th eir cl inica l ex pe rt i se, a nd bein g req uired to ma ke signi f i c ant time 488 co mmitment s f or im plemen ta tion and o ngo ing prac tice and l ea r ni ng . The r e wa s wi des p rea d 489 recog nition o f t he ne ed fo r ongo ing s upp ort and trainin g bey on d the ini tia l pha s e to s uppor t 490 kno wledg e ret ainmen t a nd en su re progr amme su sta inabil i ty. Som e qu es tion ed t he sui tabi li ty of 491 mental he alth se rvic e s et t i ngs for d elive rin g service s g iven pr e viou s un sa ti s f ac to ry or tr a umat ic 492 ex perienc e s for se rvic e us er s . H owe ver, ac quiring alte rna tive pr e mi s e s w a s o fte n cha llengi ng. 493 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint

494 Se veral ov er all propo s al s c an be d r a wn fr om this s y nth e s i s of c linic ian s’ p er spec tiv es f o r 495 good practic e in tre ating thi s p op ulati on e ffe ctivel y and r e s pec tfully a nd a t th e s a me tim e su pporting 496 the c linic ian s worki ng wi t h t h em . Ar ea s o f con sen su s be tween t he finding s of e ligi bl e studi e s 497 inc luded the n eed for hig h qual i t y , holi sti c asse s s me n ts and care p l an s enco mpa ss ing physica l, 498 psych ologic al a nd social n eed s; ea sily na vi gable r e fe r r al s y st ems enabl ing g ood c ontin ui ty of c are ; 499 and t he n eed for a pr oactiv e, co ll abora ti ve approac h t o sa f ety mana gemen t. The rapeu tic 500 relati on ship s we r e see n a s key and a s a major c ommon fac to r i n the succ e ss o f di ff ere nt a pp r oa che s , 501 and clini cian s in p articip a t i ng st ud i e s beli ev ed tha t they could be imp rov ed th roug h grea ter 502 ther apeu tic optimi sm, ov er c oming pejor ative at titud e s , devel oping pa rtner ship s betwee n se r v ice 503 use r s a nd cl inici an s t h roug h sha r e d re s p on s ibi li ty and deci sion making , ra dic al ac cep t a nce a nd a 504 non- ex pert s t anc e, an d s u s taina b le mod el s for se rvic e us er involv emen t in care . 505 Some dilem ma s and va r i a tion s in opini on were al s o iden tifi ed, e s p ecia lly reg ar din g the 506 bal ance be tween d oing ‘ t oo much’ o r ‘t o o little .’ P ot entia l p os itive a nd n eg ative c ons equenc es we re 507 iden t i fi ed bo th f or op en- end ed lo ng -ter m inp ut and fo r time -lim ite d input , a s fo r 24 h our avai labili t y 508 of c linic ian s in s pec iali s t se r v ice s. Tho se w ho adv ocate f or l ong -te rm s u p port ma y be more in tun e 509 wi t h s e rvi ce us er s, re ported o fte n to se e period s o f tr eatm ent a s t oo short a nd co n t i nuing su ppor t 510 betwe e n perio ds o f in ten siv e th erapy a s l ack ing (38) . Whe t he r o r n o t se rvic es wer e time -limi ted, the re 511 wa s a gre emen t tha t c are ful c ollab ora tiv e discha r g e plann ing w as r eq ui r e d t o miti ga t e s ome o f th e 512 freq uen tly expe r ie nce d chall enge s and h elp s ervic e u ser s w ork t oward s s el f- s u f fic ienc y. 513 Many of th e s e f inding s al ign w ith tho s e i denti fied in ou r ac compa nying meta - s y nt hesi s o f 514 the o f the p erspec tive s and experi en ce s of service u s e rs wi t h CEN (38) . For ex ample , s e r v ice user s al so 515 appe ar to prio rit i se individ uali sed c ar e, p ref erring c linic ian s t o focu s on i ndividu a l nee d s a nd 516 aspi rati on s rat her than dia gno si s o r i n t e rv ention fid el ity. Clin icia n s w er e ca lled up on in pa per s on 517 se rvice use r pe rspec tive s t o s ustain ho pe and provide encou rag emen t whi le at th e s am e time 518 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint mai nt a ining r e a li st i c ex pect atio ns an d no t inva lidating s e r v ice u ser di str e ss. The c entr ali t y of the 519 t h e ra p e ut i c r e l at i o ns h i p is a fu r t he r p o int o f c o ns en su s . W hi l e bo t h cl i n i ci a ns a n d s e r v ic e us ers 520 empha s i sed th e ne ed to o ff er a vari ety o f t r ea t m e nt op tion s t o m eet se r v ice use rs’ he te roge n eou s 521 nee d s , se rvic e us er s a l s o pr i or i t i s ed s truc ture , s t a bili ty a nd a l ong- term p er s pe c tive in their c a re. 522 The se a r e n ot inc on s i st ent d eman d s a s o ption s c an be flexib le and vari ed, yet the del ivery of s uc h 523 ca n remain s tr uctur ed an d con si ste nt on an i ndividu al lev el. 524 Conc er ns a r ou nd the u se fuln e ss a nd impa ct of u sing “per s o n ality d i s ord er” label s w er e al so 525 similar to tho s e rep ort ed f rom s t ud ie s o f s e rvi ce u ser pe rs pectiv e s. H ow eve r , the i nclu ded pap e rs on 526 cl inici an per spec tiv es t e nd ed le s s to r e fle ct rec en t cal ls by servic e u se r advoc at e s and som e 527 cl inici ans, s up p or t ed by pati e nt te s timon ia ls and gr ow ing ev idenc e, t o gi ve traum a a ce nt r al r o le in 528 the a s se ssmen t an d t r ea t m en t of CEN (71, 72) , a ca ll al s o rei n fo r c ed by femini s t critiq ues o f “per s on a lity 529 diso rder” a s a mecha ni sm for pa thologi si ng under s tan d able r e spon se s t o oppre ssi on, a bu s e and 530 struc t u ral inequ a liti es (17) . This omi s sion may in pa r t re flec t the fac t t ha t mo st s tu dies we re 531 co nducted b e fo r e th e ri s e o f th e ‘Trauma not P D’ mov ement (71, 72) . W e s u gge st tha t along s ide th e 532 prioriti e s iden tifi ed above , inc or por ating tr a uma -in forme d a ppr o a che s to c a re an d p r ev enting re-533 trauma ti sati on w it h in ment al heal th se tti ngs sho uld pro bably be see n a s k ey e lem ent s in go od 534 prac t i ce i f a s h are d age nda for se rvice improveme nt i s to be ag ree d on by se r v ice u s e r s and 535 cl inici ans (73) . 536 The value of ex plor ing c linic ian pe rspec t i v es i s par t i cula r ly in i den tifying way s o f p r omotin g 537 posi tive chang e and o f re moving clin icia n-r e l at ed barri er s to t h i s . T hi s r e view ech o e s mu ch ot her 538 litera tur e in iden tifyin g pejor ativ e cl inici a n atti tude s and b e havio urs a s an impo rt a nt ob s tac l e to 539 deli vering care that i s ev e n ad equ ate , e s pec ially in non -sp ec iali st se t ting s . D ev elo pin g and evalu ating 540 wa ys to cha lle nge and c hange s uc h beh a viours i s t h u s a p re ssing n eed . Th is rev ie w also iden tif ie s th e 541 nee d to extend more s up port to c linic ian s work ing w ith peopl e with CEN ; a cro ss s everal s tudi e s 542 cl inici ans re ported on the signifi c ant em otio nal toll o f t he i r work, w hich could potenti ally fuel 543 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint neg ative b eh avi ours and a la ck o f t he r a p eutic o pt i mi s m. S eve r a l o f our theme s r e lated t o t h e need 544 for cl inici an s to strike a b ala nce, inclu di n g bal anci ng c onnection agai n st di stanc e , doing too much or 545 too lit tle in t erm s of tre atmen t p r ov i s i on and ba lanc ing s ervic e u se r empow erm en t and 546 inde pend enc e wi t h s e rvic e pre s s u re s of r isk- ave rsion . N e e d s of d i f f e re nt s t ake hol der s al so re quire 547 bal ancin g: f or exa mple, d o s om e cli nicia n s w arn ag ain s t l ong- term inpu t f or th e be n efi t of s e r v ice 548 use r s (t o promo te i nde pend enc e) , fo r th e be ne fit o f th em selve s ( to av oid c hallen g ing w ork), or fo r 549 the be n efi t o f se r v ice s ( to mee t c apac ity c onstrain t s)? Thi s ba l anc ing ac t, tog eth er wi t h casel oa d and 550 ref erra l pre s s ur e s, may well contribu te t o the emo tional toll o f worki ng wi t h peo ple with CEN . 551 Howev er, cl inici an s , e s p e cia lly in s p e cial i s t se rvic e s , al so de scrib ed m any w ays o f al levia ting thi s 552 burden, includ ing through supe rvi s io n, re f l ec tive prac tic e and in formal supp ort b etween coll eague s . 553 The burden s a ssoc ia ted w it h di f ficul t th e rap eu tic de ci sion s, e sp ecia lly r eg ardi ng s afe ty, were c le arly 554 all evia t e d by be ing sha red, b o t h with c oll eag ue s and se rvic e us ers. A s s u ch, mul t i d is c iplina r y co-555 produc ed formula tion s, mai n t a ining t h e centrali ty of the th erap eutic r ela tion ship , a nd ‘holdi ng in 556 mind’ t h e SU co uld pr ovide s om e guidi ng princ iple s fo r clin icia n s w hen na viga t i ng the se co mplex 557 bal ance s an d would be a usefu l focu s f or further r e sea rch. 558 Con st r a int s on goo d prac tic e rel a ting to t he w ider servic e s y stem wer e rec urren tl y 559 desc ribed , inc ludi ng e xcl us iv e th re s h old s and ref err al pathw ay s, in fle xibili t y o f s erv ice s to me et 560 div erse a nd long - t erm ne ed s a nd man ag e c o-occ ur r in g con dition s, and la ck of ti me for re flec t i o n and 561 training . La ck o f r e cogni t i o n of the n ee d s of pe opl e w ith CEN and l ack of r e s o ur c in g to me et t he s e 562 nee d s w er e wide ly repor ted a n d lik ely to c ontr i but e. The s e de f i cit s may als o re fle ct a lac k of 563 ev idenc e and st r a te gic t h inking on how t o optimi se service d esign to re sul t in c oh eren t pathw ay s 564 all owing s moo th t ra ns ition s b etwee n ac ces s i bl e s ervic e s c orre s pondi ng t o s ervic e us e rs’ ne e d s a nd 565 deli very of a full rang e of ev id enc e -ba sed psycho soc ial i nte r v en tion s in all rel eva nt s e tting s. Th e 566 majo r foc u s of re s e a r c h on CE N h a s been on the e ff ectiv en e ss a nd co st -e ff ective n ess o f rel a t i vely 567 sho r t -t erm psyc hol ogic al the rapi e s: c o-p roduce d re sea r c h taki ng a w hole - sys t e m per s pe c tive on 568 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint how to de sign sy ste ms o f car e tha t me e t the va r y ing ne ed s o f diver se s ervice u s e rs at di f fer ent 569 sta ge s in thei r pa t h way s th rough servic e s now a ppe ar s t o b e an impor tant n eed . 570

571 We ai med t o inc lude pa p er s reg arding ma nageme n t in the c ommunity o f peopl e w ith a 572 range o f “pe rsonali t y diso r d e r ” diag nose s or w ho mig ht have rel at ed di ffic ul tie s, suc h as r ecu r re nt 573 sel f -harm, bu t not h a ve rec eive d s uc h a d iagnosi s . Howev er, in p rac t i ce mo s t s t u di es f o cu sed o n 574 peopl e who had r ec eived a di a gno sis o f “borderli ne pe rsona li ty diso rder”. As such , ou r fi nding s 575 relat e m ainly to thi s gro up, with some he terog enei ty in the w ays in w hich study sa mp les wer e 576 iden t i fi ed . The re was a g ood va r i e t y o f pr ofe ssion a l bac kground s and l evel s o f car e a cro ss inc luded 577 pape rs, bu t li ttle lit era ture abou t vo lunta ry organ isatio n s a nd oth er comm unity s e rvice s o u tside t h e 578 secon da r y ment al heal th c are sy stem . Th is may re flect li mi tatio ns of t he sea rch s t r a t e gy, b u t 579 probabl y al so ind ica te s a sca r c ity o f re s e arch in the s e are as . Th i s ma y mea n tha t t he v oices o f sta f f 580 who s upp o r t in dividua l s who ha ve di sen g aged o r b een ex clude d fr om the mai n st ream me nta l heal t h 581 sys t e m a re no t inc luded. 582 As t h i s i s a me ta - s y nthe si s i d enti fying an d c r os s - v alida t i ng ove r - a r c hing th em e s a cross ma ny 583 st u d ie s , a lev el of n ua nce and spec i ficity will have inevita bly be en lo s t, with fi nd in gs poole d f r om a 584 va r i ety of c on t e xt s , da te s an d c ountr i e s . T he two r e se arc her s w ho work ed the mo st clo s ely on 585 synth e sis ( JT and BL T) b oth hav e c linic al ex perienc e o f pr ovidi ng mental he alth c a re, w hile th ree 586 other autho r s (JR, TJ, EB ) bring rel eva nt li ved expe r ie nce o f s ervi ce u s e – t h e re s ul t s p re sen ted h ere 587 and t he i r inte rpr e t a t i on may well be sha ped b y their p erc ep tion s born fr om t he se experie nc e s. 588 Effo rt s w er e made to counte r thi s th roug h ado pt i ng an induc tiv e appro ac h to an a l ysis, double codi ng 589 a p or tio n of pap er s, di scu s s in g th eme s to gether and ite rative ly , and t hr oug h the c ol labora tion o f t h e 590 revie w team and ex pert s by exp er i ence a nd oc cupa t io n . 591 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint

592 Clin icia n s ’ e xpe rienc e s o f and p e rspec t i ves on go o d practic e fo r providin g co mmunity c are 593 for pe ople with CE N o ff er v aluabl e insigh t into h ow to b et ter me et the ne ed s of t his popul ation and 594 the ne e d s o f t he cli nicia n s suppo rting t h e m and a r e la rgely in ha r mo ny wi t h t h e per s p ec tive s o f 595 s er v i c e u s er s (38) . In furthe r re s earch, a fo cu s i s now need e d on how to imple m ent t h e s e pri ncipl e s o f 596 good practic e ac r o s s the se r v ice s y s t em t o im pr ov e s ervic e u ser ou tcome s and t h e expe r i enc e s of 597 se rvice use rs and clin icia n s. P rev ious re sea r c h ha s t ended t o f ocus o n indi vidua l p sychol ogic al 598 interve n t i on s : a focu s on d e s ig ning a wh ole s y s t em of car e th at c an me e t t h e lon ge r - term ne e d s o f 599 peopl e wi t h C EN in a su st a i nable way i s now de s ir abl e . Deve l opmen t and eval ua ti on of fi del i ty 600 mea s u re s th at r efl ect a gr eed go od pr acti c e (74, 75) , and o f approac h e s to suppo rt se r v ice s in ach ieving 601 and maintaini ng hig h f ideli ty , is a po ten ti al approac h to mee ting thi s ne ed. T he ap pa r e n t c ongruenc e 602 on ma ny v alues and p r i nciple s be t w een s ervic e us er s a nd cl inici an s s ug ge sts t hat a c o-pro duce d 603 approa ch t o fu tur e re se arch, se rvic e dev elopme n t and poli cy f o r mul ation i s lik ely to be f r u itful . 604 Fi nally, an ov era rching emerging is s u e de s e r v ing furt her r e s e a rch an d polic y dev el opmen t i s o f 605 equi t y : cli nicia n s echo s ervic e u ser s in ar guing that peo pl e with C E N ten d to be a marginal group, 606 oft en not p riori ti sed for r e s ou r c e s an d at tracting n ega t i ve a tti tude s and b ehav iou r. Cha nge is n ot 607 lik ely t o be ac hieve d unl e s s t h e n eed s o f peop le wi t h CEN ar e plac ed on an equa l f ooting w ith th e 608 nee d s o f pe opl e w ith oth er long -t erm ph y s ic al a nd men tal heal th c ondi tion s. 609 Lived Experience Commentaries 610 In l ine wi t h s erv ice u se r c r itiq u e s a nd our own live d expe r i ence, t h i s m eta - s y nt h e sis provid e s 611 fur ther evide nce th a t for ma ny pe opl e wi t h CEN, cu rren t ment al heal th servic e s ar e simply not fit for 612 purpo se . From c linic ian bur no ut and p ejo r a t iv e a tti tude s , to a c linic al v ictim-bl a ming c ulture wh en a 613 se rvice ca nnot me et se rvice use rs’ ne e d s, the s ig n s o f a sy s tem a t bre aki ng point a r e unde nia ble . 614 Si nce c linic ians them selve s se em to rec o gnise t he wider socia l co n t e xt, i .e. , tha t trau ma and 615 adv er s ity are majo r c ontr i b utors to th e d ist re ss ex peri ence d by pe opl e w ith CE N, i t beg s the 616 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint que stion : w hy do m os t se rvic es s till reg a rd the medi cal mod el a s th e p anac e a? I t a ppear s that we 617 nee d major sys t e mic c hang e and s ervic e s s hou ld t r u ly embrac e in clu sive , co-d e si gne d approac h e s 618 that va lu e li ved e xperienc e and al so s u pp or t u se r-l ed mo del s o f care . 619 Clin icia n s ’ c once r n s aroun d diagno stic uti lity are no t e d and sha red . H ow ever, ‘ d a ncing 620 around t h e diagn o s i s’ du e t o fea rs of stig ma and e xclu s ion - no mat ter h ow well intenti oned - m ay 621 ac tually be c oun ter p roduc tive a nd ina dv ert ently fu rth er pe rpe tuat e th e stigma . I t only under s c ore s 622 the urge n t ne ed to ad dr e s s thi s con trove rsia l termin olo gy. 623 De spit e th e aw are ne s s of a ge nd er bi as t hat re s ul ts in w omen w ith CEN b ein g 624 dispr opor t i ona tely mor e like ly to rec eive a “bor d erline p er sonali ty dis or de r ” labe l than me n, t her e is 625 no me nt i on o f th e ov erlap w it h Auti s m S pectrum C ond iti on s (AS C) (76) and th e fac t that w omen a re 626 co nverse ly und er-di agno s ed w ith AS C. T hi s ma y ha ve s erio us implic a tion s f or po t entially mi s-627 dia gnos ed ser v ice u s e rs who may e nd up trappe d on un suita ble trea tmen t p athw ay s a nd th er efo r e 628 co nstitu te s a signific an t ga p in th e e vide nc e ba se w arra nting in ve st m e nt in fu rth er r e sea r c h. 629 While we suppor t int er - and mul t i - a genc y wo r k ing in pr i ncipl e, sta kehold e rs ne e d to be 630 mindful of i t s pote nt i al pit fall s . F o r exa mple, a s if pa thologi sing legi tima t e fe eling s o f d istr es s w a s n ’ t 631 problema t i c eno ugh, c olla bora ting with l a w en f o r c ement (e .g ., th r o ugh th e “Sere nity Integr at ed 632 Mento ring” programme ) (77) can e xac erbate th e ri sk of g oing a s f a r a s c riminal i s ing CEN. Suc h 633 misconc eiv ed in terven tio n s c an no t onl y perman en tly de st roy s ervic e u sers’ tru s t in mental he alth 634 se rvice s, b ut can al so h ave ab solut ely de vasta ting e f f e ct s o n th eir li fe c hanc e s, ne gating any atte mpt 635 at me aning ful r e cove r y . 636 Overall, i t is encou r a ging th a t t he re ar e c li nicia ns who shar e our v iew s af te r all, an d the 637 answe r to “Who se need s a re th ey anyw ay? ” should be a r e sounding “ Ev eryone’ s! ” 638 Aft er all , s ervic e u ser s don ’t be ne fit from wo r k ing w ith s tr e ssed and bu rnt -ou t cl inici ans , 639 eithe r; th er efo re, the de s i r e to improve s taf f t r a ining and suppo rt i s mut u al . Un for t una te ly, th e 640 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint preva iling s y st emic flaw s a re not conduc i ve t o eith er indiv idual pra ctiti one r or ser vic e improve ment. 641 Li kew is e, in fluenc ing th o se c linic ian s wh o are s t ea d fa s t i n holdi ng onto st i gma ti si ng vi ews of peo p le 642 wi t h CEN i s going t o be a m ajor cha ll eng e tha t s h o uld idea lly b e a ddre s sed with c o-pro duction 643 throughou t servic e dev el opmen t a nd del iv ery. 644 E va Broec kel mann an d Je ssic a Ru s s el l 645 Broken Mirrors 646 Whils t r e ading t hi s rev iew, I was struc k by the all egory o f a mirror. The f oc us i s on clini cian s , 647 but it s s i ste r pape r w ith a servic e u se r fo cus (38) refle c t s the s am e is s u e s. The mirro r a llego r y goe s 648 bey ond simila r th eme s be ing re flec ted . The opinion s o f ea ch side a r e fr a gmen ted – like a broke n 649 mirror. The b rok en fragmen t s of ea ch s id e a ppea r a s per fec t repl ica s o f th e o t h e r , yet ca n only s e e 650 eac h oth er in r e ve r s e, ap pea r i ng as pol ar opp os i te s . 651 The data h ere i s c on stric t e d to wha t i s w ithin the l i te r a t u re, with b oth pa p er s du t i ful ly 652 repor ting thi s. Thi s da t a i s limited i n pr oviding an un der s t andin g of wh y, de spi te a ppearing to want 653 the same thin g, the re i s such a rel ation al divid e betwe en s er v ice u s e r a nd s ervice provider. 654 The r ol e s o f peopl e working within t he Li v ed Ex perienc e Pr of e ssion s (i .e. , pee r su pport 655 work ers, servic e u se r cons ultan t s, live d e xp er i ence re sea r c h er s ) c oul d be de scrib e d a s rol e s tha t 656 bridge betw een th e two pol a ri s ed world s , comm unica t i ng sam ene s s and di ff er enc e betw e en th e 657 two. Liter atu re ex ploring how thi s could r e lat e to d ev eloping rel atio na l bridge s wi t hi n the field of 658 trauma /compl ex e mot i onal ne ed s /“p e rs onal it y di sord er” is no t inc luded – pot ent iall y bec aus e it 659 doe s not ex i st o r e xis ts in a fo rmat t hat d oe s not fit w it h in the sea rch crit eria . Thi s hi ghligh t s th e 660 importanc e of b ei ng abl e t o val ue ex peri ential da ta a s a valid con side ra tion w ithi n re search , in orde r 661 to le s sen the phe n omenon o f studi e s giv ing a perf ect v iew o f on e small fr ag ment of th e broke n 662 mirror, whil s t di sr egarding th e re st. S e rvic es be ne fit mor e fr om a f u ll vie w of the b r ok en mirro r, 663 ev en if th e i ndividu al shard s a r e mor e bl urred t han on e per fec t p i ece. 664 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint This g ave m e pau se for thought w hen r e se arche rs d e scribed t he ir experie nce s of work ing in 665 se rvice s a s a p ote ntial l imit atio n in t h e r e view . Once th e y hav e ac know ledged t h ei r own pe rspec t i ve , 666 under st anding t h e line be tween thi s a nd the da ta, the ir ‘limi tati on’ i s in fac t a str e ngth – and thi s 667 kno wledg e need s t o be re cogni sed, valu e d and e ncou rag ed mor e. Th e lit era tur e we us e t o inf orm 668 and s h a pe polic y i s n ot be i ng prac ticed u nder lab condi tion s, bu t in the me s s y wo rld w here br oken 669 mirrors ex is t . 670 Tama r Je yne s 671 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Acknowledgments 672 This rep ort i s ba s ed on i ndep ende nt r e s e arc h commi ssion ed a nd f unded by th e N ationa l 673 Ins titu t e for Hea lth R e sea rch P olicy Re se arch P r og ra mme. The vie w s expre s s e d ar e tho se o f th e 674 author ( s ) a nd not n ec e s s aril y th ose o f th e NH S , th e Na tional In s ti tut e fo r Heal th Re sea r c h, the 675 Depa rtmen t o f Heal th and Soc ial Car e or its a rm's leng th bod ie s , and oth er G over nmen t 676 Depa rtmen t s . 677 Contributions 678 Conc ep tuali sa tion: S onia Jo hn son, Sian O ram, Chri s Coop er 679 Dat a c ur a ti on: C hri s Co oper , L uke S herid an Ra in s , Jo r da n Trou p, Z ainab Ded a t, Th omas S tea r e . 680 Formal anal y s i s : Bi lli e L ever-Ta ylo r and Jorda n Troup . 681 Metho dolog y: S onia Jo hn son, Sia n Oram , Ch r i s Coop er, L uke She r i da n Rain s, Billi e Lev er- T aylor, an d 682 Jordan Tr oup. 683 Sup er v isi on: C hri s Co oper , Bil lie L ever -T ay lor, Lu ke S herid an Ra in s , Sian O ram, a nd Soni a John s on. 684 Writ i ng – origina l d r a ft : Billie L eve r- Tay lor, Jo r da n Trou p, J e s sic a Ru ssell, T amar Jeyn e s , a nd 685 Ev a Broeck elman n. 686 W r i t i n g – r e v i e w & e d i t i n g : L u k e S h e r i d a n R a i n s , E v a B r o e c k e l m a n n , T a m a r J e y n e s , J e s s i c a R u s s e l l , 687 Bill ie Le ver -Tay lor, Chri s Co oper , Sia n Or am, O li ver D ale, Shi rley McNichol a s, and S onia John s on 688 Funding 689 This pap e r p re se nt s ind epend e nt re s e arch commis sio ned a nd f und ed by th e Na tiona l 690 Ins titu t e fo r He alth Re s e arch (N IHR) P oli cy Res earch Pro gramme, conduc t ed by the NIHR P olicy 691 Res earch U n it ( PRU) in M ent al H e alth . The vie ws ex pr e s sed ar e t h o se o f th e au thor s a nd no t 692 n e c e s s a r i l y t h o s e o f t h e N I H R , t h e D e p a r t m e n t o f H e a l t h a n d S o c i a l C a r e o r i t s a r m ’ s l e n g t h b o d i e s , 693 or oth er gov ernmen t depa rtme nt s. 694 . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint

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Ex plorin g Gener al 883 Prac t i t io n ers’ Vie w s and Ex perienc es of P roviding Care to P e opl e wi t h Bord er l in e Pe rson ali t y 884 Di sor d e r i n Prim ary Ca re : A Q u a lita tive St udy i n Aus t ralia . Int e r na t io n a l J o u r na l o f E n vi r o nm e nt a l 885 Rese arch an d Pu b lic H e alt h . 2018 ;15 (12): 2763. 886 71. Giouro u E, Skok ou M, Andr ew S P, Al ex op oulou K, Gourzi s P, J ela s t opulu E. Comple x 887 pos tt r auma t i c st r e s s di sor d e r : Th e nee d to con solida t e a di sti nct c linic al syndrom e or t o re eval ua te 888 fea tur es of p sychi at r i c dis orde r s fol l owing interpe r s ona l t rauma ? W o r l d J Ps yc h i at r y . 2018;8(1):1 2 -9. 889 72. Wat ts J. P r obl ems with the I C D-11 c la s s i fi cation o f per s on a lity di sord er. Th e Lanc e t 890 Psyc hiatry . 201 9;6 (6):461 -3. 891 73. Sw eeney A, Cleme n t S, F il s o n B, Kenn e dy A. 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CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint Se arch o f MEDL I N E (Ja nuary 2 003 to M ar ch 2019), E mbase (J anuary 2 003 – M a r c h 2019 ) , H MIC (Jan u ary 2003 – Marc h 2019) , Soci a l Poli cy and Pr ac t i ce (Jan ua r y 2003 – Ma rch 2019), CIN AH L (J anuary 2 003 – March 20 19 ) an d AS SIA (Janu ary 2003 – Janu ary 2 019) 8772 studi e s obtai ned 3350 duplic ate s r e move d Back wards ref ere nc e s e arch and forwa rd s c itation s earch : 4 addition a l s t u die s inc luded Searc h o f releva n t sy s t e m a t i c rev iews : 0 addition a l s t u die s includ ed. 6738 rec or d s ex clude d a ft er ti tle and ab s tr ac t r e view 29 s tudi e s inc luded in th e revi ew 77 full text s exc luded Popul a tion ( pre se nta tion ): 14 Po pula tion (w rong age ): 3 Res ponde nt s (n ot clin icia n s ) : 1 Se t ti ng (not commu ni t y ): 21 Study de s ig n (wrong m eth od s ) : 19 S t u dy de sign (no t r e se arc h) : 2 D o main o f i nte r e s t (e .g., no t se r v ice prov is i on ): 7 Di s s er tati on: 5 La nguag e: 2 Year (pr e -2003): 1 N ot a cce ssibl e: 2 10,690 duplic ate s removed 5422 rec ord s i den tifi ed f or scre ening 161 s tudi e s id en tifi ed fo r full tex t sc r ee ning Bac kwa r d s re f e re n c e s e a r c h and for w a rd s c itation s earch on new includ es: 0 a ddition al studie s includ ed 19 studi e s inc luded i n th e revie w 5261 record s ex clude d a ft er ti t l e and a b s tr ac t rev iew 142 full text s ex clude d Pop ula tion ( pre s enta tion ): 26 P opula tion (w ro ng ag e) : 13 Respo nde nt s ( e. g., n ot c linic ian s ): 8 S ett i ng (e.g . , not com muni ty) 13 Study de s i gn (wrong met hod s ) : 46 S tudy de sign (no t r e s e a r c h) : 15 Domain o f int ere st (e .g ., no t s ervice pr ov ision ): 4 Di sse rtati on / Th e s i s: 8 L angua ge: 3 Not Acce ssibl e: 6 U p dat e s earch J an ua ry 2003 - Decemb e r 2019 (ex c. AS S IA ) 17511 studi e s obtai ned 6821 n e w r ec o r ds i d e nt i f ie d f o r sc r e e n i n g 83 Studie s iden tifi e d f or ful l text scre en ing 6 ex t ra studie s found . CC-BY-ND 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.(which was not certified by peer review)preprint The copyright holder for thisthis version posted December 16, 2020. ; https://doi.org/10.1101/2020.12.15.20248267doi: medRxiv preprint