Smutstitelsida (Titel utan undertitel)

Återgång i arbete efter förvärvad hjärnskada

Till min älskade Janne och våra underbara döttrar Hanna och Lina

Studies from the Swedish Institute for Disability Research 94

MARIE MATÉRNE

Återgång i arbete efter förvärvad hjärnskada livskvalitet, möjligheter och hinder

Omslagsbild: Efter förvärvad hjärnskada kan livet komma i gungning likt vattnets vågor. Många faktorer tillsammans skapar möjligheter och hinder för återgång i arbete samt förändrad livskvalitet; stentornets stenar symboliserar att om en sten tas bort riskerar hela tornet att falla. Alla stenar tillsammans bildar en helhet som gör att den håller ihop, balanserat, och inte faller sönder. Fotograf: Jonas Sandberg

© Marie Matérne, 2018 Titel: Återgång i arbete efter förvärvad hjärnskada - livskvalitet, möjligheter och hinder Utgivare: Örebro University 2018 www.oru.se/publikationer-avhandlingar Tryck: Örebro universitet, Repro 11/2018 ISSN 1650-1128 ISBN 978-91-7529-267-0

Abstract Marie Matérne (2018): Return to work after acquired brain injury – quality of life, opportunities and barriers. Örebro Studies from the Swedish Institute for Disability Research No. 94 In Sweden, about 35–40 percent of people who acquire a brain injury can return to work. To be able to help people with acquired brain injury to return to work, it is important to know about experiences and factors that facilitate return to work and how they affect quality of life. The overall aim of this thesis is to investigate the opportunities and barriers for people with acquired brain injury to return to work, as well as the importance of returning to work for their quality of life. Four studies were conducted: two interview studies and two register studies, giving qualitative and quantitative data. The major finding in this thesis was that people with acquired brain injury who could return to work had high functioning in all levels of the biopsychosocial model. The opportunities increased if the return to work was individually adapted in all phases of the process and if the person was motivated and supported by support persons with commitment, cooperation and adaptation. Those who had a university education, got their driver’s license reinstated, had high motor function and could return to work showed the greatest increase in their quality of life. Return to work is a complex process for people with acquired brain injury that could be successful if they are motivated, can balance the internal and external demands to return to work, get individual adaptation, and receive committed support. Their quality of life also increased more if they were able to return to work.

Keywords: Return to work, acquired brain injury, rehabilitation, quality of life, quality inference, register analysis Marie Matérne, The Swedish Institute for Disability Research Örebro University, SE-701 82 Örebro, Sweden, [email protected]

Lista över delstudier Denna avhandling är baserad på följande fyra studier vilka kommer refereras till i texten efter deras nummer: I

Matérne, M., Lundqvist, L-O., Strandberg, T. Opportunities and barriers for successful return to work after acquired brain injury: A patient perspective. Work 2017;56(1):125-134.

II

Matérne, M., Lundqvist, L-O., Strandberg, T. Support persons´ Perception of giving vocational rehabilitation support to clients with acquired brain injury in Sweden. Journal of Social Work in Disability & Rehabilitation 2016;15(3/4):351-69.

III

Matérne, M., Strandberg, T., Lundqvist, L-O. Change in quality of life in relation to returning to work among patients with acquired brain injury: a population-based register study. Brain Injury. Open access.

IV

Matérne, M., Strandberg, T., Lundqvist, L-O. Risk markers for not returning to work among people with acquired brain injury: a population-based register study. Submitted.

Särtryck av delstudierna är gjorda med tillstånd av respektive tidskrift.

Innehållsförteckning FÖRORD ............................................................................ 11 BAKGRUND ....................................................................... 13 Förvärvad hjärnskada .......................................................... 14 Funktionsnedsättning och funktionshinder .......................... 16 Sherbrookemodellen ............................................................ 18 Individens resurser/copingförmåga ................................... 20 Arbetsplatsens system ....................................................... 25 Hälso- och sjukvårdsystemet ............................................ 27 Socialförsäkringssystemet ................................................. 30 Problemformulering ............................................................. 33 SYFTE ................................................................................. 36 METOD .............................................................................. 37 Datainsamling studie I och II ............................................... 38 Analys studie I och II ........................................................... 42 Datainsamling studie III och IV............................................ 43 Instrument och variabler .................................................. 45 Tillvägagångssätt .............................................................. 50 Analys studie III ................................................................... 52 Analys studie IV................................................................... 54 ETISKA ÖVERVÄGANDEN............................................... 55 Etik studie I och II ............................................................... 55 Etik studie III och IV............................................................ 57 RESULTAT ......................................................................... 59 Studie I: Erfarenheter av återgång i arbete ............................ 59 Studie II: Stödpersoners uppfattning av stöd vid återgång i arbete ............................................................ 61 Studie III: Förändring av livskvalitet vid återgång i arbete .... 65 Studie IV: Faktorer som hindrar återgång i arbete ................ 65 Sammanfattning av avhandlingens resultat .......................... 66

MARIE MATÉRNE Återgång

i arbete efter förvärvad hjärnskada

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DISKUSSION ....................................................................... 69 Resultatdiskussion................................................................ 69 Personrelaterade faktorer .................................................. 69 Hjärnskaderelaterade faktorer .......................................... 72 Aktivitetsrelaterade faktorer ............................................. 76 Rehabiliteringsrelaterade faktorer ..................................... 80 Resultatets relation till Sherbrookemodellen ..................... 83 Metoddiskussion .................................................................. 86 Studie I och II ................................................................... 87 Studie III och IV................................................................ 89 Slutsatser av avhandlingens resultat...................................... 90 Fortsatt forskning................................................................. 91 SUMMARY IN ENGLISH ................................................... 94 Introduction ......................................................................... 94 Aim ...................................................................................... 96 Material and method............................................................ 96 Study I and II .................................................................... 96 Study III and IV ................................................................ 97 Results ................................................................................. 99 Conclusions ....................................................................... 102 TACK ................................................................................ 105 REFERENSER ................................................................... 109

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Förord Jag har i hela mitt vuxna liv arbetat tillsammans med och för personer med funktionsnedsättning, som privat och offentligt anställd, i små och stora organisationer och som medarbetare och chef. Jag har jobbat som socialarbetare, chef på assistansbolag och på vuxenhabiliteringen och under senare år som utvecklingsledare på Område habilitering och hjälpmedel i Region Örebro län. Mitt engagemang har också funnits i ideella föreningar, med idrott som medel för rehabilitering, men även i projekt vars syfte har varit att underlätta för personer med funktionsnedsättning att komma in på arbetsmarknaden eller återkomma i arbetslivet. Mina olika uppdrag har alltid känts roliga, meningsfulla och utmanande. När möjligheten dök upp för mig att få fördjupa mina kunskaper genom forskarutbildningen i handikappvetenskap, som doktorand med specifikt fokus på personer med förvärvad hjärnskada och återkomst i arbetslivet, sa jag till mig själv: Den här resan kan du inte missa, det är ett stort privilegium. Handikappvetenskap som forskningsämne passade mig, med sin tvärvetenskaplighet och det biopsykosociala perspektivet som är naturligt eftersom det belyser sambandet mellan människa och samhälle. Jag har även under utbildningen till socionom och magister i socialt arbete valt kurser som inriktat sig på samhällsarbete och social planering. MARIE MATÉRNE Återgång


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Drivkraften i min forskning har varit att förbättra kunskapen om möjligheter och hinder för personer som förvärvar en hjärnskada att kunna återgå i arbetslivet, och att undersöka om arbete förändrar livskvaliteteten för dessa personer. Jag vill bidra med forskningsresultat för att utveckla rehabiliterings- och arbetsrehabiliteringsinsatser, men också för att stärka personer med förvärvad hjärnskadas ställning på arbetsmarknaden. Det är denna resa som under de senaste åren varit mitt mål. Så med ett intressant och angeläget forskningsområde kändes utmaningen att bli doktorand viktig och engagerande.

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Bakgrund I Sverige drabbas årligen cirka 26 500 personer av stroke (Socialstyrelsen, 2017) och 14 000 vårdas varje år på sjukhus för traumatisk hjärnskada, men man antar att det finns ett stort mörkertal (Socialstyrelsen, 2014). Varje år diagnostiseras också cirka 1 300 personer med olika tumörer i hjärnan och övriga nervsystemet (Socialstyrelsen, 2016). Förvärvad hjärnskada kan dock även orsakas av sjukdomar och blödningar i hjärnan. Det betyder att många drabbas av olika typer av förvärvad hjärnskada i Sverige varje år. De flesta av dem som drabbas har levt ett liv utan funktionsnedsättning till dess att hjärnskadan uppstår. För vissa är skadan omvälvande och involverar alla livsområden medicinskt, psykologiskt och socialt, medan andra påverkas i mindre omfattning (Krogstad, 2012). Endast 35–41 procent av de som drabbas av förvärvad hjärnskada i Sverige kan återgå till förvärvsarbete (Vestling, Ramel, & Iwarsson, 2005; Vestling, Tufvesson, & Iwarsson, 2003), trots stark motivation (Rubenson, Svensson, Linddahl, & Bjorklund, 2007). Arbetsrehabilitering för dessa personer är en komplex och tidskrävande process som involverar många faktorer som påverkar deras möjligheter att återgå i arbete (Stergiou-Kita, Yantzi, & Wan, 2010). Dessa faktorer är förmågan efter skadan, arbetsplatsens förhållningssätt och anpass-



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ningsmöjligheter, hälso- och sjukvårdssystemets, socialförsäkringssystemets struktur och samhällsstrukturen (Loisel et al., 2005; Loisel et al., 2001). I denna avhandling studeras personer med förvärvad hjärnskada och deras möjligheter och hinder för återgång i arbete. Vidare studeras stödpersonernas uppfattning av att vara ett stöd i arbetsrehabiliteringen och vilken betydelse återgång i arbete har för livskvaliteten för personer med förvärvad hjärnskada.

Förvärvad hjärnskada De vanligaste orsakerna till förvärvad hjärnskada är blödning, trafikolycka och tumör (Krogstad, 2012), men den kan också orsakas av våld mot huvudet eller sjukdom (Zasler, 2007). Personer som drabbas av hjärnskada kan ha flera olika svårigheter (Krogstad, 2012). Besvären kan vara fysiska, till exempel muskelsvaghet eller förlamning, förändrad känsel vid beröring, smärta, förändrad känsla av värme och kyla, ökad eller minskad muskelspänning, nedsättning av lukt-, syn- och hörselförmåga och nedsatt balans (Fagius & Aquilonius, 2006; Krogstad, 2012). De kan också drabbas av kognitiva svårigheter som exempelvis rör orientering till tid, rum och person, minne, uppmärksamhet, koncentration, logiskt tänkande, problemlösning, bearbetning och tolkning av sinnesintryck och kommunikation. Andra besvär som kan uppstå är hjärntrötthet (även benämnd

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fatigue), vilket kan medföra energi- och orkeslöshet, långsammare bearbetning av information och ljus- och ljudkänslighet. Vidare kan personer med förvärvad hjärnskada få problem med de exekutiva förmågorna, vilket kan innebära svårigheter att sätta upp mål, att planera och organisera, att ta egna initiativ, att utvärdera och följa upp det man gjort och att vara flexibel vid problemlösning. Många personer med förvärvad hjärnskada får också psykosociala svårigheter som kan ge personlighetsförändringar, humörsvängningar, ökad stresskänslighet, svårigheter att kontrollera impulser och depression (Krogstad, 2012; Scheibenpflug & Schön, 2004). Ytterligare konsekvenser kan vara att familjeliv, relationer, arbetsliv och fritidsaktiviteter påverkas (Strandberg, 2006). Flera av de beskrivna skadorna är inte uppenbart synliga för omgivningen, till exempel problem med att ta emot och bearbeta information, att planera och organisera sin vardag eller initiera en handling, och det kan vara svårt för omgivningen att förstå och tolka personen efter skadan (Krogstad, 2012; Scheibenpflug & Schön, 2004). Personer som förvärvar en hjärnskada hamnar i den akuta fasen ofta på en intensivvårdsavdelning på ett sjukhus, där de får den inledande behandlingen. I den subakuta fasen kan personen vara kvar på sjukhuset en tid eller skrivas ut till hemmet. Insatser ges i denna fas av till exempel rehabiliteringsmedicinska kliniker,



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habilitering och/eller primärvård beroende på skadans svårighetsgrad och regionernas och landstingens olika organisering för eftervård och rehabilitering (Krogstad, 2012; Scheibenpflug & Schön, 2004). Dessa olika verksamheter kan även ge insatser i den senare fasen, i öppenvården. När dessa personer efter hand återhämtar sig efter skadan har de ofta höga förväntningar på att livet ska återgå till det normala (Nalder, Fleming, Cornwell, & Foster, 2012), så som det var före skadan med arbete, fritid och familjeliv, men för många blir inte livet som förut (Kumar, Samuelkamaleshkumar, Viswanathan, & Macaden, 2017; Strandberg, 2006). För att kunna kompensera för hjärnskadans konsekvenser är det viktigt att personen erbjuds rehabilitering i olika former (Socialstyrelsen, 2012) och stöd av närstående och familj (Stergiou-Kita, Dawson, & Rappolt, 2011; Strandberg, 2006, 2009), samt får hjälp med bearbetning av och insikt i den nya livssituationen (Strandberg, 2006, 2009). För de flesta får en diagnostiserad förvärvad hjärnskada alltså bestående konsekvenser, som kanske finns kvar i resten av deras liv, och dessa långvariga funktionsnedsättningar kan leda till funktionshinder (Socialstyrelsen, 2003).

Funktionsnedsättning och funktionshinder Funktionshinder är den begränsning som en funktionsnedsättning innebär för en person i relation till omgivningen

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(Socialstyrelsen). Funktionsnedsättning innebär en nedsättning av fysisk, psykisk eller intellektuell funktionsförmåga. En viss funktionsnedsättning är ingen egenskap hos en individ som är överordnad andra egenskaper (McCall, 2005). Med andra ord är en person inte sin funktionsnedsättning, i det här fallet sin förvärvade hjärnskada, utan en individ med många personliga egenskaper och kvalifikationer. Enligt Stone (1984) uppstod i det västerländska samhället begreppet disability (funktionshinder) i samband med att lönearbete blev den primära försörjningsformen. Disabilitybegreppet blev ett sätt att lösa ekonomisk fördelning i samhället och ett sätt att särskilja de som försörjde sig genom eget arbete och de som skulle få samhällets stöd för sin försörjning. Medicinska underlag ansågs vara objektiva expertbeslut och kunde ge personer med funktionsnedsättning rätt till ersättning utan att arbeta. Utifrån sjukskrivning och arbetsrehabilitering har Loisel (2001) utformat en modell, Sherbrookmodellen, (se figur 1). Modellen åskådliggör en helhetssyn på arbetsrehabilitering som kan användas för att skapa en teoretisk förståelse. I bakgrunden har modellen använts för att beskriva tidigare forskning inom fältet återgång i arbetslivet och förändring av livskvaliteten för personer med förvärvad hjärnskada.



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Sherbrookemodellen Sherbrookemodellen utvecklades 2001 för case managers (samlingsnamn för vårdsamordnare) som arbetade med personer med ländryggsbesvär, och den beskrivs som fyra olika system vilka påverkar återgången i arbete (Loisel et al., 2005; Loisel et al., 2001). Modellen bedöms även gälla andra diagnosgrupper och har översatts till svenska förhållanden, med följande fyra system: •

individens resurser/copingförmåga

•

arbetsplatsens system

•

hälso- och sjukvårdssystemet

•

socialförsäkringssystemet (Ståhl, 2015).

De förklaras närmare i varsitt underavsnitt nedan. Sherbrookemodellen illustrerar sociala system, deras aktörer och innehållet i de system som sjukskrivning, rehabilitering och återgång i arbete innebär se figur 1 (Costa-Black, Feuerstein, & Loisel, 2013; Loisel et al., 2005; Loisel et al., 2001; Ståhl, 2015). Modellen beskriver även de kontextuella faktorer som påverkar hela modellen och de utgörs av samhällssystemet, kulturen och politiken (Loisel et al., 2001). Till exempel kan den politiska majoriteten med hjälp av olika beslut påverka systemen i modellen på ett sätt som möjliggör eller hindrar arbetsrehabiliteringen. Arbetsrehabilitering för personer med förvärvad hjärnskada kan antas vara komplex och det är svårt att vid ett och samma tillfälle studera alla faktorer som kan möjliggöra och hindra 18



återgången i arbete. Det är också en process som involverar många olika system och mekanismer på flera nivåer. Genom att använda Sherbrookemodellen kan arbetsrehabiliteringens komplexitet visas.

Figur 1: Sherbrookemodellen illustrerar de olika sociala system som är inblandade i sjukskrivning, rehabilitering och återgång i arbete, översatt till svenska förhållanden (Ståhl, 2015).

De olika aktörerna som medverkar i arbetsrehabiliteringen har olika roller och ansvarsområden (Loisel et al., 2005; Ståhl, 2015; Ståhl, Svensson, Petersson, & Ekberg, 2011). Alla aktörer har



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också olika perspektiv baserade på vilket socialt system de tillhör, vilken profession de har och vilken organisation de är verksamma inom. Genom systemteorin kan vi tolka och förklara hur olika aktörer inom de sociala systemen samspelar med varandra och hur normer uppstår och utvecklas genom att skapas och återskapas (Bronfenbrenner, 1979; Luhmann, 2010). Olika system interagerar med varandra och hos de professionella aktörerna kan diskussioner uppstå om vem som har tolkningsföreträde. Professionella inom systemen kan bemöta personen med förvärvad hjärnskada utifrån intressen andra aktörer i systemet har; till exempel vill arbetsgivare att personen ska återgå i arbete för att vara produktiv, och hälso- och sjukvårdssystemet vill att personen återfår sin hälsa och förmåga (Ståhl, 2015). Dessa olika intressen kan leda till konflikter mellan delsystemen. Aktörerna har dessutom olika lagar, regler och kulturer att förhålla sig till inom sitt eget system och mellan varandras system. Detta är relevanta perspektiv i en rehabiliteringskontext där samverkan och kommunikation är centralt. Individens resurser/copingförmåga I centrum av Sherbrookemodellen finns ”individen”, alltså personen och hans eller hennes egenskaper såsom ålder, kön, utbildning, födelseland, eventuella barn och partnerskap. I delsystemet individens resurser/copingförmåga är livsvärldsperspektivet, med individen själv och dennes plats i samhället det centrala 20



(Ståhl, 2015). Individens resurser/copingförmåga med resurser och förmågor är ett mångfacetterat system, då alla individer är olika och inte tillhör någon enhetlig social gruppering. En individ tillhör samtidigt flera olika sociala system som kan handla om socioekonomisk status, yrkesidentitet, familjesituation med flera (Jönhill, 1995; Luhmann, 2010). Individens olika identiteter spelar en viktig roll för hur rehabiliteringen utvecklas (Ståhl, 2015). Enligt tidigare studier har arbetsgivare olika förhållningssätt till personer som är sjukskrivna i verksamheten beroende på hur värdefulla de tycker att medarbetarna är och har varit för verksamheten (Seing, MacEachen, Ståhl, & Ekberg, 2015). I delsystemet Individens resurser/copingförmågor återfinns personens fysiska, kognitiva och affektiva förmågor och dennes sociala relationer. Individuella egenskaper hos personer som förvärvar en hjärnskada kan ha betydelse, såsom att de som är yngre fortare kan återgå i arbete (Busch, Coshall, Heuschmann, McKevitt, & Wolfe, 2009; Hofgren, Esbjörnsson, & Sunnerhagen, 2010; Saeki & Toyonaga, 2010). Att vara man och drabbas av en hjärnskada ökar möjligheterna att återgå i arbete (Arwert et al., 2017; Busch et al., 2009; Saeki & Toyonaga, 2010; Waljas et al., 2014; Van Velzen, Van Bennekom, Edelaar, Sluiter, & FringsDresen, 2009). Dessutom har universitetsutbildade drygt dubbelt



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så stor chans att återgå i arbete än de som inte har universitetsutbildning (Walker, Marwitz, Kreutzer, Hart, & Novack, 2006). Att ha en levnadspartner kan också ha betydelse och ge motivation att återgå i arbete genom att personen vill behålla sin status och det ekonomiska ansvaret som han eller hon upplever gentemot sin familj (Harris, 2014). Men det finns också studier som inte kunnat påvisa något samband mellan civilstånd och återgång i arbete för personer med förvärvad hjärnskada (McLean, 2007; Saeki & Toyonaga, 2010). Möjligheterna att återgå i arbete är större för de personer som förvärvar en lättare hjärnskada och får behålla en bra fysisk förmåga (Arwert et al., 2017; Busch et al., 2009; Fride et al., 2015; Gabriele & Renate, 2009; Passier, Visser-Meily, Rinkel, Lindeman, & Post, 2011; Saeki & Toyonaga, 2010; Shames, Treger, Ring, & Giaquinto, 2007; Tanaka, Toyonaga, & Hashimoto, 2011; Van Velzen et al., 2009; Vestling et al., 2003). Studier visar också att kort vårdtid på sjukhuset underlättar återgången (Arwert et al., 2017; Donker-Cools, Wind, & FringsDresen, 2016; Hofgren et al., 2010; Van Velzen et al., 2009; Wang, Kapellusch, & Garg, 2014). Kort vårdtid definieras på olika sätt i olika studier, men en studie visade att de som återkom i arbete efter hjärnskadan hade en vårdtid på 6,5 dagar i median och de som inte återkom i arbete hade medianen 10,5 dagar (Arwert et al., 2017). 22



En hög kognitiv förmåga ökar möjligheten att återgå i arbete efter förvärvad hjärnskada (Fride et al., 2015; Vestling et al., 2003). En annan betydelsefull faktor är att ha lite eller ingen hjärntrötthet (Hartke & Trierweiler, 2015; Kauranen et al., 2013; Van Velzen, Van Bennekom, Van Dormolen, Sluiter, & Frings-Dresen, 2011), vilket också är en relevant faktor för ett hållbart arbetsliv (Hartke & Trierweiler, 2015). Arbetsrehabiliteringen är en process som kräver motivation för att man ska orka hela vägen tillbaka (Brannigan et al., 2017; Rubenson et al., 2007; Van Velzen et al., 2011). Psykologiska faktorer såsom depression ger sämre möjligheter att kunna återgå i arbete (Arwert et al., 2017; Fride et al., 2015; Van Velzen et al., 2009). Livskvalitet är ett sammansatt och komplext begrepp där personen själv värderar sin fysiska, psykiska och sociala förmåga. Det finns många olika definitioner av livskvalitet och de varierar också mellan olika studier (Fayers & Machin, 2015). I denna avhandling används begreppet hälsorelaterad livskvalitet, ett multidimensionellt begrepp som omfattar personens uppfattning av hur sjukdomen och behandlingen påverkar fysiska, psykologiska och sociala aspekter av livet (Fayers & Machin, 2015). Livskvaliteten för personer som förvärvar en hjärnskada påverkas ofta negativt, men en faktor som kan förbättra den är återgång i arbete (Arwert et al., 2017; Corrigan, Bogner, Mysiw, Clinchot, & Fugate, 2001; Fride et al., 2015; Passier et al., 2011; Vestling et MARIE MATÉRNE Återgång


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al., 2003). Hög livskvalitet har hittats hos personer som undvikit att jämföra livet med hur det var före skadan och som uppskattade familjens värde (Gould & Ponsford, 2015) samt hade en optimistisk livssyn, ett bra socialt stöd och en uppgiftsorienterad copingstil (Tomberg, Toomela, Pulver, & Tikk, 2005). Personer med förvärvad hjärnskada behöver uppleva en kontinuerlig förbättring av sitt sjukdomstillstånd, ha kunskap om sin skada och ha copingstrategier för att hantera sin nya situation och lättare kunna återgå i arbete (Brannigan et al., 2017). Dessutom är återgången lättare för strokedrabbade som är flexibla och realistiska i sina yrkesmässiga mål (Wang et al., 2014). De sociala relationerna, dvs. stödet från omgivningen, är en resurs som ökar möjligheterna för personer med förvärvad hjärnskada att återkomma i arbetslivet (Van Velzen et al., 2011). Det gäller

också

stödet

från

nära

vänner

(Forslund,

Roe,

Sigurdardottir, & Andelic, 2013). Familj och nära släktingar är också betydelsefulla eftersom de kan ge ett långsiktigt stöd och motivation (Strandberg, 2009). Personer som har stöd av familjen upplever också mindre stress under arbetsrehabiliteringen (Hooson, Coetzer, Stew, & Moore, 2013). För många personer är körkortet viktigt för att kunna ta sig till jobbet, återintegreras i samhället och vara delaktig i sociala relationer efter skadan (Fraas, Balz, & DeGrauw, 2007). När en

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person förvärvar en hjärnskada ska läkaren bedöma om personen är lämplig att köra fordon i trafiken, och om inte kan läkaren göra en muntlig överenskommelse med personen om att inte köra bil eller anmäla återkallelse av körkort till Transportstyrelsen (Transportstyrelsen, 2010, 2015). Transportstyrelsen utreder då saken och fattar beslut om att eventuellt återkalla körkortet. Arbetsplatsens system Arbetsgivaren har rehabiliteringsansvaret så länge personen har en anställning och har också det avgörande beslutet i många frågor som gäller personens återkomst i arbetslivet (Ståhl, 2015). I Sverige har många enkla arbetsuppgifter som inte kräver högre utbildning försvunnit, och i stället har kunskap och utbildning blivit viktiga faktorer för att kvalificera sig på arbetsmarknaden (Magnusson, 2006). En annan förändring som har skett under de senaste åren är att tillfälliga anställningar och arbetsuppgifter blivit vanligare, till exempel projektanställningar. Det betyder att många har osäkra och kortvariga anställningar (Standing, 2013). Arbetstagarna förväntas vara självständiga och flexibla när det gäller ansvar och arbetstid, och vid sidan av dessa krav ska de behärska och utveckla sociala relationer (Ekberg, Eklund, & Hensing, 2015; Garsten & Jacobsson, 2004). Sammanfattningsvis kan sägas att individens eget ansvar för att vara konkurrenskraftig på arbetsmarknaden har ökat (Smith, 2010). Det försvå-



25

rar för personer med förvärvad hjärnskada att konkurrera på arbetsmarknaden med förväntningar om självständighet, flexibilitet, god social förmåga och en hög utbildning. Anställda vid arbetsplatser med tillmötesgående arbetsledning (Rubenson et al., 2007; Van Velzen et al., 2011) och anpassningsbara arbetsplatser och arbetsuppgifter har lättare att återgå till arbetet efter hjärnskadan (Rubenson et al., 2007). De som jobbar på ett stort företag har också större möjlighet än de som är anställda på ett litet (Hannerz, Ferm, Poulsen, Pedersen, & Andersen, 2012). Det beror ofta på att de större företagen har en organisation och ekonomi som tillåter att de kan hålla tjänsten ledig när personen med förvärvad hjärnskada är sjukskriven, och de kan också oftare anpassa arbetsuppgifter när personen kommer tillbaka (Galizzi & Boden, 1996). De som är anställda som tjänstemän kan i högre utsträckning och i snabbare takt återvända till arbetet medan det tar längre tid för dem med anställning som arbetare (Tanaka et al., 2011; Treger, Shames, Giaquinto, & Ring, 2007; Vestling et al., 2003). Ett stödsystem med arbetskamrater och chefer på arbetsplatsen som håller kontakt med personen är värdefullt under sjukskrivnings- och rehabiliteringsperioden (Ellingsen & Aas, 2009). Det möjliggör kontinuerlig uppföljning och underlättar samarbetet mellan de parter som är involverade i arbetsrehabiliteringen såsom personen själv, arbetsplatsen, rehabiliteringskliniken och 26



Försäkringskassan. Socialt stöd på jobbet från kollegor och arbetsgivare kan bidra till en känsla av förståelse och acceptans för personen med förvärvad hjärnskada. Mellan år 2006 och 2014 hade cirka 68 procent av den svenska befolkningen med funktionsnedsättning ett arbete, och bland övriga befolkningen var andelen cirka 84 procent (Statistiska centralbyrån, 2016b). Bland personer med förvärvad hjärnskada är det cirka 40 procent som arbetar (Vestling et al., 2005; Vestling et al., 2003). Det är alltså en skillnad i sysselsättning mellan de som har en funktionsnedsättning i allmänhet och de som har en förvärvad hjärnskada. Arbetsmarknaden är uppbyggd på konkurrens och söker den mest produktiva och kvalificerade arbetskraften till den lägsta kostnaden (Michailakis, 2002), vilket kan leda till att personer med funktionsnedsättningar såsom förvärvad hjärnskada har svårt att hävda sig i konkurrensen. Hälso- och sjukvårdsystemet Hälso- och sjukvårdssystemet består av komponenter såsom sjukskrivande läkare, andra vård- och rehabiliteringsprofessioner, rehabiliteringsåtgärder och samverkan med andra aktörer. Personer som förvärvar en hjärnskada och diagnostiseras blir ofta sjukskrivna efter skadan, och då bidrar hälso- och sjukvården genom läkaren med till exempel underlag och sjukintyg till



27

personens sjukskrivning, men det finns också många andra professioner som utför behandlingsinsatser och åtgärder i detta system. Efter den inledande akuta fasen följer rehabilitering, vilket enligt Socialstyrelsens definition är: insatser som ska bidra till att en person med förvärvad funktionsnedsättning, utifrån dennes behov och förutsättningar, återvinner eller bibehåller bästa möjliga funktionsförmåga samt skapar goda villkor för ett självständigt liv och ett aktivt deltagande i samhällslivet (Socialstyrelsen, 2007). Av prioriteringsutredningen framkommer att hälso- och sjukvårdens uppdrag omfattar 1)

medicinsk bedömning bestående av diagnostik

2)

behandling för att bota och lindra

3)

omvårdnad för att tillgodose allmänmänskliga och personliga behov.

Större behov av vård ska gå före mindre, men livskvalitetsrelaterade behov vid sjukdom och skada väger lika tungt som hälsorelaterade behov. När en diagnosgrupp såsom personer med förvärvad hjärnskada har en hög prioritet gäller det samtliga effektiva åtgärder för: diagnostik, behandling, omvårdnad, habilitering och rehabilitering och prevention. Dessutom har en del personer i denna målgrupp nedsatt autonomi och de bör då särskilt

28



beaktas (Regeringskansliet, 1995). Med andra ord har rehabilitering i vissa sammanhang en mycket hög prioritet och är en viktig del i hälso- och sjukvårdens uppdrag. Under sjukskrivningen är ett väl fungerande samarbete mellan aktörerna betydelsefullt för personens arbetsrehabilitering (Nilsing, Soderberg, Bertero, & Oberg, 2013). Aktörerna omfattar olika yrkeskategorier på vårdcentralen eller rehabiliteringskliniken såsom läkare, sjukgymnast, arbetsterapeut, sjuksköterska och kurator, men också andra externa verksamheter såsom Försäkringskassan, Arbetsförmedlingen och chefer på arbetsplatsen. I en studie av aktörerna i arbetsrehabiliteringen uppfattades dock denna samverkan som otydlig och den kom ofta igång sent i processen (Nilsing et al., 2013). De som kan och ska återgå i arbete är hjälpta av en tidig kontakt med chefen på arbetsplatsen samt av kontakter mellan arbetsplatsen och hälsooch sjukvården respektive hälso- och sjukvården och Försäkringskassan (Petersson & Hensing, 2009). Kontakten ska bygga på ömsesidig tillit och öppen kommunikation. För att någon ska kunna återkomma i arbete kan det vara nödvändigt att modifiera arbetsuppgifterna, till exempel andra uppdrag eller deltidsarbete, och i en del fall måste personen helt byta jobb. Hälso- och sjukvården kan vara behjälpliga i de medicinska, psykologiska och sociala bedömningar som behöver göras och som ofta är komplexa (Hensing, 2015). MARIE MATÉRNE Återgång


29

Forskning om interventioner vid rehabilitering visar bland annat stark evidens för att arbetsrelaterade interventioner i kombination med utbildning och coachning är effektivt för återgång i arbete (Donker-Cools et al., 2016). Sammanställningen visar också att de insatser som är mest effektiva är individuella anpassningar, delaktighet för person, medverkan från arbetsgivaren, träning av sociala och arbetsrelaterade färdigheter och hantering av känslomässiga upplevelser. Socialförsäkringssystemet Socialförsäkringssystemet innehåller komponenter som rör personens arbetsförmåga och anställningsbarhet, lagar och regelverk. Även i detta system återfinns samverkan med andra aktörer. Vid bedömning och beslut om rätten till sjukpenning och sjukersättning, bedömning av arbetsförmåga, anpassningar och annat rehabiliteringsarbete ingår socialförsäkringssystemets olika myndigheter såsom Försäkringskassan och Arbetsförmedlingen (Ståhl, 2015). Deras perspektiv representerar ett regelstyrt och byråkratisk synsätt. För personer som har behov av ersättning under en period av sjukskrivning regleras detta i socialförsäkringsbalken (Socialdepartementet, 2010), som också beskriver förmåner vid sjukdom eller arbetsskada. Definitionen av arbetsförmåga är oklar trots dess centrala roll i arbetsrehabiliteringen (Eklund & Falkdal Hansen, 2015). Begreppet beskrivs som en personlig egenskap med ett relationellt 30



samband (Eklund & Falkdal Hansen, 2015). För en person som drabbas av hjärnskada påverkas arbetsförmågan i olika grad beroende på hur allvarlig skadan är, vilket påverkar både de personliga egenskaperna och relationerna till andra. För att kunna bedöma arbetsförmågan bör hänsyn tas till personens alla livsområden, dvs. även andra områden såsom familjeliv, fritid och skötsel av hemmet (Eklund & Falkdal Hansen, 2015). Den som bäst kan bedöma en persons arbetsförmåga är personen själv, och han eller hon kan också bäst förutse sin egen förmåga i framtiden (Ekbladh, 2008). Anställningsbarheten är en annan faktor att ta hänsyn till efter förvärvad hjärnskada, och den går att studera på individ-, organisations- och samhällsnivå (Thijseen, Van der Heijden, & Rocco, 2008). Individnivån handlar om personens egen ansträngning och möjligheter att återgå i arbete. Organisationsnivån handlar om att matcha tillgången på arbetskraft med efterfrågan, och samhällsnivån relaterar till arbetsmarknadspolitiken. Personens anställningsbarhet efter förvärvad hjärnskada påverkas av hans eller hennes kunskaper och kompetenser, yrkesspecifika erfarenheter, sociala kapital och personliga egenskaper samt av utbudet av arbeten och det geografiska läget. Dessutom inverkar omgivningen och de lagar som reglerar arbetsmarknaden (Berntson & Marklund, 2007).



31

Det svenska socialförsäkringssystemets grundläggande princip är att alla som har möjlighet ska arbeta och försörja sig. Inom området finns flera lagar som reglerar arbetsrehabilitering, och en av de viktigaste föreskrifterna är den om arbetsanpassning och rehabilitering som beskriver arbetsgivarens ansvar och uppdrag (1994). Av 12 § framgår att arbetsgivaren skall anpassa de enskilda arbetstagarnas arbetssituation med utgångspunkt från deras förutsättningar för arbetsuppgifterna. Därvid skall särskilt beaktas om den enskilde arbetstagaren har någon funktionsnedsättning eller annan begränsning av arbetsförmågan. Paragrafen är ett viktigt lagstöd för personer som ska återkomma i arbete efter hjärnskada. Sverige ratificerade Förenta Nationernas internationella konvention om rättigheter för personer med funktionsnedsättning 2008 (2006). I konventionens artikel 26 punkt 1, beskrivs att konventionsstaterna ska arbeta med åtgärder för att uppnå största möjliga oberoende för personer med funktionsnedsättning, genom full fysisk, mental, social, och yrkesmässig förmåga till delaktighet på alla livsområden. För att underlätta arbetet ska konventionsstaterna organisera och förstärka habiliterings- och rehabiliteringsstödet samt upprätta program, särskilt inom områdena hälsa, sysselsättning, utbildning och social service (Förenta Nationerna, 2006). I artikel 27 beskrivs också rätten till arbete och sysselsättning för personer med funktionsnedsättning, 32



bland annat rätten att tjäna sitt uppehälle genom att kunna välja ett arbete på arbetsmarknaden och ha en god arbetsmiljö som är öppen och tillgänglig för alla. För personer med förvärvad hjärnskada finns i dag inget enhetligt program för arbetsrehabilitering (Socialstyrelsen, 2012) och endast cirka 40 procent arbetar igen efter skadan (Vestling et al., 2003). Socialdepartementet har konstaterat att när det gäller samverkan finns utrymme för förbättring i arbetsrehabiliteringsprocessen. Det finns till exempel inga tydliga riktlinjer för hur samarbetet och ansvarsfördelningen mellan rehabiliteringsaktörerna ska ske, vilket de anser är en kvalitetsbrist som kan få betydelse för personens möjligheter att återgå i arbete (Socialdepartementet, 2011).

Problemformulering Endast cirka 40 procent av de personer som förvärvar en hjärnskada i Sverige återgår i arbete (Vestling et al., 2005; Vestling et al., 2003). De personer som återgår i arbete har ofta hög motivation, men trots det saknar många möjlighet att arbeta efter skadan (Rubenson et al., 2007). Det finns forskning inom området, framför allt i ett internationellt perspektiv, men vi vet lite om återgång i arbete för personer i Sverige med förvärvad hjärnskada. De som lyckas återgå och skapa ett hållbart arbetsliv i Sverige har erfarenheter av möjligheter och hinder från denna



33

rehabilitering som är intressanta att studera utifrån ett svenskt perspektiv för att öka möjligheten att återgå i arbete. Att ha stöd från omgivningen i arbetsrehabiliteringen är viktigt, men få studier finns om stödpersoners erfarenheter av att vara ett stöd under denna process. Därför är det viktigt att studera just deras erfarenheter. Inga tidigare studier har hittats som fokuserat på denna typ av stöd och de så kallade stödpersonernas uppfattning om att vara ett stöd för dessa personer i arbetsrehabiliteringen. Denna kunskap är värdefull för att ge rätt typ av stöd under arbetsrehabiliteringen för personer med förvärvad hjärnskada. Att studera en stor population personer i ett longitudinellt perspektiv i Sverige är intressant för att få veta mer om vilka faktorer som kan ge bättre förutsättningar för personer med förvärvad hjärnskada att återgå i arbete. Det är också intressant att veta om arbete har betydelse för livskvaliteten över tid. Arbetsrehabilitering är en process som ändras över tid, och mer kunskap om hur den påverkar livskvaliteten kan ge ökad motivation för personerna. Men det finns ingen forskning om livskvalitetens förändring, från utskrivning från sjukhuset till uppföljning ett år efter skadan, trots att rehabilitering är en förändringsprocess. Inte heller finns någon forskning som belyser förändring av livskvaliteten i relation till andra faktorer, förutom återgång i arbete, som påverkar personer med förvärvad hjärnskada. 34



Den här avhandlingen syftar till att öka kunskapen om dessa områden för att skapa bättre förutsättningar för personer med förvärvad hjärnskada att återkomma i arbetslivet.



35

Syfte Avhandlingens övergripande syfte är att studera vilka möjligheter och hinder som finns för personer med förvärvad hjärnskada att återgå i arbete och vilken betydelse återgång i arbete har för dessa personers livskvalitet. Delstudiernas syfte är att: I.

öka kunskapen om personer med förvärvad hjärnskadas erfarenheter av möjligheter och hinder för framgångsrik återgång i arbete

II.

undersöka stödpersoners uppfattning om att vara ett stöd för personer med förvärvad hjärnskada i arbetsrehabiliteringen

III.

undersöka förändringar av livskvaliteten i relation till återgång i arbete för personer med förvärvad hjärnskada

IV.

identifiera faktorer som hindrar återgång i arbete för personer med förvärvad hjärnskada.

36



Metod I de studier som ligger till grund för denna avhandling har både kvalitativ och kvantitativ metod använts för att undersöka frågeställningarna. De två första studierna har svarat på frågor om erfarenheter och uppfattningar, vilket lämpligast gjordes genom intervjuer som datainsamlingsmetod. De två sista studierna har undersökt faktorer som har betydelse för livskvalitet och återgång i arbete, vilket gjorde att kvantitativ metod användes. I tabell 1 framgår studiedesign, antal inkluderade deltagare och datainsamlings- och analysmetod för de fyra delstudierna i avhandlingen. Tabell 1 Studiedesign, antal inkluderade deltagare och datainsamlings- och analysmetod i studie I–IV Studiedesign

Antal inkluderade

Datainsamlingsmetod Analysmetod

Studie I Semistrukturerad Intervju, kvalitativ design

Studie II Semistrukturerad Intervju, kvalitativ design

Studie III Registerstudie, kvantitativ retrospektiv kohortstudie med longitudinell design

10 personer med förvärvad hjärnskada Målstyrt (strategiskt) urval Kvalitativ innehållsanalys

9 stödpersoner

1 486 personer med förvärvad hjärnskada

Studie IV Registerstudie, kvantitativ retrospektiv kohortstudie med longitudinell design 2 008 personer med förvärvad hjärnskada

Lämplighetsurval

Målstyrt (strategiskt) urval

Målstyrt (strategiskt) urval

Kvalitativ innehållsanalys

Linjär och multipel regressionsanalys

Relativ risk



37

Datainsamling studie I och II I den första studien kontaktades öppenvårdsteamet för personer med lätt till måttlig hjärnskada för att rekrytera personer som matchade inklusionskriterierna. För att välja deltagare till studie I gjordes ett målstyrt urval (Bryman, 2011). Öppenvårdsteamet valde ut 20 personer som stämde med inklusionskriterierna, hälften män och hälften kvinnor. De valdes ut för att täcka ett spektrum av olika arbetsgivare: privata, kommunala, regionala och statliga. Målet med urvalet var att välja personer som var relevanta för forskningsfrågorna och som kunde bidra med ett bred och djup erfarenhet av sina upplevelser av fenomenet (Bryman, 2011; Patton, 2002). Inklusionskriterierna var: 1) arbetat minst ett år efter skadan 2) kunna förstå och tala svenska 3) ålder 18–65 år. Dessutom skulle könsfördelningen i urvalsgruppen vara jämn. Exklusionskriterierna var: känt drog- eller alkoholberoende eller annan svår känd sjukdom som kunde påverka det psykosociala tillståndet hos personen. Tabell 2 ger en översikt över informanterna i studie I och II. Tio av dem som matchade inklusionskriterierna kontaktades av öppenvårdsteamet och de gav sitt samtycke till att lämna ut adress och telefonnummer till forskaren. Därefter kontaktades

38



personerna via brev och senare per telefon av forskaren. Personerna som skulle delta i studien informerades under telefonsamtalet om studiens syfte och tillvägagångssätt, och de tio personerna som kontaktades samtyckte skriftligen till att delta i studien. Deltagare i studie II utsågs av personerna i studie I. Redan i informationsbrevet till studie I uppmanades personerna med förvärvad hjärnskada att identifiera och namnge en stödperson som hade varit ett betydelsefullt stöd för dem under arbetsrehabiliteringen. Vid intervjuerna lämnade personerna uppgifter om namn och telefonnummer till dessa stödpersoner som senare skulle kontaktas och intervjuas i studie II. Innan intervjuerna med stödpersonerna skulle ske togs förnyad kontakt med personerna med förvärvad hjärnskada för att få bekräftelse på att de fortfarande samtyckte till denna kontakt. Alla personer i studie I, utom en, samtyckte till kontakt med stödpersonerna i studie II. Totalt nio stödpersoner, sex kvinnor och tre män, lämnade muntligt och skriftligt samtycke till att delta i intervjustudien (se tabell 2). I studie I och II fick de inkluderade personerna själva välja var de intervjuades. I studie I genomfördes intervjuerna på personens arbetsplats, i hemmet och i ett fall på intervjuarens kontor, i slutet av 2009 och början av 2010. I studie II genomfördes alla in-



39

tervjuer på forskningsenheten, utom en som gjordes i stödpersonens hem. Alla genomfördes av en intervjuare våren 2014. Alla intervjuer i respektive studie genomfördes av samma intervjuare. Intervjuguiden till studie I innehöll frågor om personen med förvärvad hjärnskadas bakgrund (arbete, utbildning och arbetets betydelse),

arbetsrehabilitering

(arbetsrehabiliteringsinsatser,

hjälpmedel, händelse som betytt något särskilt under arbetsrehabiliteringen och framtiden) och arbetsliv (bemötande från andra, stödperson, nuvarande arbetssituation, möjligheter och hinder nu och i framtiden). Studie II:s intervjuguide innehöll följande frågeområden: stödpersonen (rollen som stödperson och uppdrag från arbetsgivaren), hjärnskadan (stödpersonens uppfattning om svårigheter och hinder som beror på hjärnskadan), arbetsliv (beskrivning av personen med förvärvad hjärnskadas arbetsliv, arbetsorganisationens stöd, motivation och meningsfullhet) och stöd (stödets betydelse, möjligheter och hinder för återgång i arbete, bemötande och stöd, anpassning av arbetsuppgifter). Alla intervjuer spelades in på band och tog 45–60 minuter. Intervjuerna transkriberades ordagrant av sekreterare, forskare (studie I) eller doktorand (studie II).

40



Tabell 2. Översikt, informanter i studie I och II. Person med förvärvad hjärnskada (studie I) Diagnos

Född

Kön

Stroke

1954

K

År som skadad vid intervju 4

Stroke

1955

M

8

Stroke

1983

K

7

Hjärntumör

1962

K

9

Stroke

1968

K

3

Stroke

1963

M

9

SAH*

1962

K

5

Stroke

1955

M

4

TBI**, bilolycka

1959

M

6

TBI**, överfall

1965

M

5

Stödperson (studie II)

Yrke (vid skadan och vid intervju) Studievägledare – samma Leg. sjuksköterska – samma

Arbetstid vid intervju

Yrke/funktion

Kön

Formellt mandat

50 %

K

Nej

M

Nej

Cafébiträde – massör Förskolelärare – administratör Controller – samma Elektriker – ekonomiassistent Logistik, transport – samma Controller – samma

50 %

Personaladministratör, kollega Säkerhetssamordnare, kollega Arbetsgivare, chef Arbetsgivare, chef

K

Ja

K

Ja

Säljare, kollega Öppenvårdsteam

M

Nej

M

Nej

75 %

Öppenvårdsteam

K

Nej

100 %

K

Nej

Informationsansvarig – informationsassistent Verkstadsarbetare – samma

50 %

Samma organisation, släkting Arbetsgivare, personalchef

K

Ja

Ej intervjuad

-

-

75 %

50 % 100 % 50 %

75 %

*SAH = Subaraknoidal blödning (Subarachnoid hemorrhage), **TBI = Traumatisk hjärnskada (Traumatic brain injury)



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Analys studie I och II Dataanalysproceduren för studie I och II följer samma tillvägagångssätt, och båda studierna analyserades med hjälp av kvalitativ innehållsanalys (Graneheim & Lundman, 2004). Analyserna fokuserade på intervjupersonernas erfarenheter och upplevelser som stämmer med syftet i respektive studie. En kvalitativ innehållsanalys urskiljer variationer i intervjuerna genom att identifiera likheter och skillnader i textinnehållet. När de 10 intervjuerna var klara bedömde forskargruppen i studie I att materialet var mättat, och ingen ny information tillfördes (Sandelowski, 1995). Först lästes de transkriberade intervjuerna flera gånger av forskargruppen för att skapa en helhetsbild, i likhet med hur analysprocessen beskrivs av Graneheim och Lundman (2004). Analyserna strukturerades och genomfördes sedan med stöd av dataanalysprogrammet NVivo (version 10, QSR International). Den första intervjun i respektive studie analyserade gruppen tillsammans. Övriga analyser genomfördes av doktoranden. Analysen i varje studie genomgick fem steg. Första steget innebar att varje intervju startade med att identifiera meningsbärande enheter av texten, vilket innebar att identifiera ord, meningar och stycken som hör ihop genom samma innehållsliga innebörd. I det andra steget kondenserades meningsenheterna till kortare centrala delar, utan att innehållet gick förlorat och utan att tolka 42



det. I det tredje steget skapades koder, dvs. en etikett som beskriver innebörden i den kondenserade meningsenheten. Inte heller i detta steg skedde någon tolkning av materialet utan koden skulle vara textnära. I fjärde steget abstraherades koderna och slogs samman för alla intervjuer i respektive studie, till subkategorier och kategorier som var manifesta och beskrivande, som inte innehöll någon tolkning. Inga data som svarade på syftet fick uteslutas för att en lämplig kategori saknades (Krippendorff, 2004). I det sista, femte steget bildades subteman och teman, och då sammanfogades det underliggande och latenta budskapet i ett antal kategorier som hörde ihop. Detta var en tolkande nivå som skulle fånga hela materialets innehåll (Graneheim & Lundman, 2004). Detta sista steg från subkategorier och kategorier över till subteman och teman genomfördes av hela forskargruppen och diskuterades till dess att konsensus nåddes. Citaten i studierna var viktiga för att återge det empiriska resultatet (Bryman, 2011). Citaten valdes ut omsorgsfullt för att skapa en spridning bland intervjupersonerna och därmed fånga hela den intervjuade gruppens uppfattningar.

Datainsamling studie III och IV Studie III och IV bygger på data för personer med förvärvad hjärnskada som registrerades i kvalitetsregistret WebRehab Sve-



43

rige mellan 1 januari 2007 och 15 januari 2016. WebRehab Sweden är öppet för alla kliniker och enheter i Sverige som bedriver rehabilitering, till exempel rehabiliteringsmedicin, geriatrik, neurologi och ortopedisk rehabilitering. Det finns en slutenvårdsdel i registret, där grunddata dokumenteras vid inskrivning på 23 enheter i Sverige. Registret omfattar cirka 1 800 slutenvårdstillfällen per år och har en täckningsgrad på ca 75 procent av vårdplatserna i landet. WebRehab Sweden är kategoriserat till certifieringsnivå 2, vilket innebär att registret bland annat har en täckningsgrad som överstiger 60 procent, online-återkoppling av relevant information som kan stödja förbättringsarbete, öppen redovisning av indikatorer, redovisning av förbättrade resultat, öppen redovisning av patientrapporterade mått och aktivt systematiskt arbete för att säkra datakvaliteten samt att registret används aktivt för forskning (Nationella kvalitetsregister, 2018a). Syftet med registret är att: förbättra kvaliteten i rehabiliteringsprocessen, utnyttja begränsade resurser på bästa sätt, vara ett stöd för vårdprocessutveckling, möjliggöra jämförelser mellan enheter, samla kunskap om små patient- och diagnosgrupper och ge underlag för forskning (Nationella kvalitetsregister, 2018a). När den första registreringen görs i registret schemaläggs också uppföljningar 1 och 2 år efter insjuknandedatumet, och de registreras i öppenvårdsdelen. Data kan därför följas för perso-

44



ner över tid. Inrapportering till registret sker direkt via ett internetbaserat formulär eller pappersformulär till en databas. På varje enhet finns någon eller några personer som har en kontrollfunktion för att öka ifyllnadsgraden och kontrollera data som registrerats. Registret innehåller information om demografiska data, remissvägar och vårdtider. Det visar också förekomsten av fysisk, psykisk och kognitiv funktionsnedsättning mätt med ett antal olika instrument och förekomsten av komplikationer. Vid uppföljning ett år efter skadan registreras flera variabler som mäter psykosociala och individuella faktorer. Slutligen finns flera olika instrument som mäter hälsorelaterad livskvalitet, livstillfredsställelse och delaktighet samt registrets eget formulär, kallat nöjdhetsformuläret, som handlar om hur nöjd personen är med sin sjukhusvistelse. Instrument och variabler I studie III och IV har ett antal instrument och variabler använts som beskrivs nedan. EuroQol five dimensions (EQ5D) (EuroQoL group, 1990) användes för att mäta livskvaliteten (Ferrans, 1996). EQ5D är ett patientrapporterat resultatmått i fem dimensioner (rörlighet, hygien, huvudsakliga aktiviteter, smärta/besvär och oro/nedstämdhet). Varje dimension har tre nivåer av svårighetsgrad (EuroQoL MARIE MATÉRNE Återgång


45

group, 1990). De fem dimensionerna kan räknas om till ett preferensbaserat indexvärde som kan variera mellan -0,594 dvs. sämre än döden och + 1,000 dvs. bästa tänkbara hälsa (Dolan, 1997). EQ5D innehåller också en visuell analog skala från 0 (värsta tänkbara hälsa) till 100 (bästa tänkbara hälsa, EQ VAS (Brands, Köhler, Stapert, Wade, & Van Heugten, 2014). På så vis genererar EQ VAS ett individuellt självskattat hälsotillstånd. Båda variablerna användes i studien och tillmättes lika stort värde eftersom de mäter olika områden: EQ5D index är preferensbaserat och EQ VAS mäter individuellt självskattat hälsotillstånd. Glasgow Outcome Scale (GOSE) (Wilson, Pettigrew, & Teasdale, 1998) är ett av de mest använda instrumenten för att bedöma hjärnskadans allvarlighetsgrad. Det är en global skala för funktionellt utfall och beskriver övergripande funktion i förhållande till läget före skadan (Jennett, Snoek, Bond, & Brooks, 1981; Teasdale, Pettigrew, Wilson, Murray, & Jennett, 1998). Skalan består av åtta kategorier: I) död, II) vegetativt stadium, III) svår hjärnskada, helt beroende av annans hjälp, IV) svår hjärnskada, delvis beroende av annans hjälp, V) medelsvår hjärnskada, kan inte återta tidigare aktiviteter, (VI) medelsvår hjärn-

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skada, kan delvis återta tidigare aktiviteter, VII) god återhämtning, kan återta tidigare aktiviteter men har besvär, och VIII) god återhämtning, kan återta tidigare aktiviteter och har inga besvär. Functional Independence Measure (FIM) omfattar 18 aktiviteter grupperade i sex funktionella områden: (I) personlig vård, (II) sfinkterkontroll, (III) kortare förflyttningar, (IV) längre förflyttningar, (V) kommunikation och (VI) social och intellektuell funktion (Keith, Granger, Hamilton, & Sherwin, 1987; McDowell & Newell, 1996). FIM är ett resultatmått som bygger på patientobservation, ofta genom konsensusutlåtande i ett multidisciplinärt team (Keith et al., 1987). FIM-poängen för varje funktionsområde sträcker sig från 1 (total assistans) till 7 (fullständigt oberoende). I studie III sammanfördes nivån 1–7 i tre kategorier: totalt assistansberoende, lite hjälp behövs och ingen hjälp behövs. FIM motorisk funktion mäts genom att kombinera funktionsområdena I till IV (13 aktiviteter), med en gradering 13–91 poäng och kognitiv funktion genom att kombinera områdena V och VI (5 aktiviteter) med graderingen 5–35 poäng. Återgång i arbete vid uppföljningen operationaliserades som anställd eller egenföretagare som arbetade 50 procent eller mer vid insjuknandet och som var helt sjukskriven vid utskrivning från



47

sjukhuset. Vid uppföljning ett år efter skadan arbetade personen 50 %. Diagnosvariabel hade sju kategorier och gjordes om till tre: stroke (stroke och subaraknoidal blödning), traumatisk hjärnskada och andra hjärnskador (postinfektiös eller postinflammatorisk hjärnskada, anoxiska hjärnskador och andra hjärnskador). Sjukhusvistelsens längd begränsades till 0–357 dagar, och de personer som hade längre vårdtid togs bort på grund av att de då inte hade möjlighet att återgå i arbete inom ett år. De delades in i följande kategorier: kort (0–24 dagar), måttlig (25–68 dagar) och lång vårdtid (69–357 dagar). Civilstånd och att ha barn hemma var i registret sju kategorier. Variablerna hade kombinerats med att vara gift och ha barn, och de redigerades till två nya variabler: att vara singel (ja/nej) och att ha barn hemma (ja/nej). Boende och personligt stöd bestod av fyra kategorier som blandade boende (eget boende eller särskilt boende) och personligt stödbehov (med stöd eller inget stöd). Denna variabel gjordes om till en variabel som bara tog hänsyn till om personen behövde

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stöd eller inte. Kategorin inget stöd användes för dem som levde i eget boende utan hjälp i det dagliga livet trots sin hjärnskada. Körkort. Data för studie III kodades som förändring av körkortvariabeln från utskrivning från sjukhuset till uppföljning ett år efter skadan. Fyra olika kategorier av förändring användes. I studie IV hämtades data om körkort från utskrivning och kodades som ja eller nej. Nöjdhetsformulär. Vid utskrivning från sjukhuset ombeds alla personer fylla i ett formulär, skapat av WebRehab Sweden, bestående av 7 frågor. Frågorna handlar om 1. personalens bemötande, 2. patientens samarbete med personalen, 3. rehabiliteringen, 4. eget inflytande över rehabiliteringen inklusive individuell rehabiliteringsplan, 5. information om sjukdomen eller skadan, 6. information om vart man kan vända sig vid behov av stöd efter rehabiliteringen, 7. information och bemötande som familj och närstående har fått under rehabiliteringen. Svarsalternativen anges på en 5-gradig skala mycket nöjd, nöjd, missnöjd, mycket missnöjd och vet ej. Skalan gjordes om till nöjd (bestående av mycket nöjd och nöjd) och missnöjd (missnöjd och mycket missnöjd). Svaret vet ej sågs som bortfall.



49

Tillvägagångssätt De instrument och variabler som valdes ut till studie III var de som hypotetiskt kunde förändra livskvaliteten inom ett brett spektrum av områden som berörde personen: personrelaterade data (ålder, kön, födelseland, utbildning, partnerskap och barn), hjärnskaderelaterade data (diagnos, afasi, GOSE, FIM motorisk och kognitiv förmåga), aktivitetsrelaterade data (körkort och återgång i arbete) rehabiliteringsdata (tid på sjukhus), omgivningsdata (stöd i hemmet) och hälsorelaterad livskvalitet (EQ5D). Dessa variabler täcker en stor del av det biopsykosociala perspektivet. I studie IV valdes data för att beskriva en helhet av faktorer som potentiellt kan påverka återgången i arbete: personrelaterade variabler (ålder, kön, födelseland, utbildning, partnerskap och barn), hjärnskaderelaterade variabler (diagnos, afasi, sjukhusvistelse, GOSE, FIM rörlighet och kognition, rörlighet EQ5D, smärta/besvär EQ5D och oro/nedstämdhet EQ5D), aktivitetsrelaterade variabler (hygien EQ5D, huvudsakliga aktiviteter EQ5D och körkort) och rehabiliteringsvariabler (nöjdhet med rehabiliteringen, nöjdhet med samarbetet med personalen, inflytande över rehabiliteringen inklusive individuell rehabiliteringsplan, information om sjukdomen/skadan, information om vart man kan vända sig vid behov av stöd efter rehabiliteringen, information och bemötande som familj och närstående fick under 50



rehabiliteringen, nöjdhet med behandlingen från personalen och stöd i hemmet samt ifall en skriftlig rehabiliteringsplan har upprättats och använts). Efter godkänd etikansökan togs kontakt med kvalitetsregistrets registerhållare, för att få tillgång till data. När registret godkänt uttag extraherades data av en statistiker som slog samman data till en fil där alla aktuella variabler ingick. Data från totalt 11 346 personer med förvärvad hjärnskada (stroke, subaraknoidal blödning, traumatisk hjärnskada, postinfektiös/postinflammatorisk hjärnskada, anoxisk hjärnskada och andra hjärnskador) ingick i filen som mottogs av forskarteamet. Personer med förvärvad hjärnskada inkluderades bara i datautdraget vid sitt första skadetillfälle och den första sjukhusvistelsen. Baserat på forskningsfrågorna i studie III och IV inkluderades följande personer i studierna: 1) personer i arbetsför ålder mellan 18 och 66 år 2) personer som hade data från inskrivning och utskrivning från sjukhuset samt uppföljning ett år efter skadan 3) personer som arbetade 50 procent eller mer vid inskrivning för att sedan vara 100 procent sjukskrivna vid utskrivningen. I studie III användes data för de personer som hade fyllt i EQ5D vid uppföljning och populationen utgjordes av 1 487 personer. Medelåldern i studie III var 52 år; 62 procent var män och 76 procent av alla hade drabbats av stroke. MARIE MATÉRNE Återgång


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I studie IV inkluderades de personer som hade haft ett lönearbete som anställd eller i privat regi, arbetat minst 50 procent före skadan, var 100 procent sjukskrivna vid utskrivningen från sjukhuset och hade data vid uppföljning ett år efter skadan. Med dessa kriterier omfattade den slutliga studiegruppen för studie IV totalt 2 008 personer. Dessa delades in i två grupper med 690 personer som återgått i arbete och 1 318 personer som inte återvänt till arbetslivet. Medelåldern i studie IV var 51 år, 64 procent var män och 73 procent av alla hade drabbats av stroke. I studie III och IV hämtades data för ålder, kön, födelseland, utbildning, diagnos och afasi från inskrivningen på sjukhuset. Variabeln för sjukhusvistelse gjordes genom att räkna antalet dagar från inskrivning till utskrivning, för båda studierna. I studie III skapades förändringsvariabler från utskrivning till uppföljning ett år efter skadan för följande variabler: EQ5D index och VAS, civilstånd, barn i hushållet, GOSE, körkort och personligt stöd i hemmet. För studie IV hämtades data för resterande variabler vid utskrivning från sjukhuset.

Analys studie III Syftet med studie III var att undersöka hur arbete kan förändra livskvaliteten för personer med förvärvad hjärnskada, men även andra faktorer som kunde ha betydelse för livskvaliteten. Som mått användes det hälsorelaterade livskvalitetsinstrumentet

52



EuroQol five dimensions (EQ5D). Det är ett av de mest använda generella standardiserade instrumenten (EuroQoL group, 1990) och har rekommenderats som mätinstrument för hälsorelaterad livskvalitet, bland annat för personer med traumatiska hjärnskador (Bullinger et al., 2002). Både EQ5D Index och VAS användes som mått. Eftersom syftet var att undersöka förändring av livskvalitet gjordes båda dessa mått om till förändringsmått där förändringen i hälsorelaterad livskvalitet mättes från utskrivningen från sjukhuset till uppföljningen ett år efter skadan.

Analysen i studie III genomfördes i IBM SPSS version 22.0 (IBM Corp., Armonk, 197 NY, USA). Före analysen dummykodades vissa variabler. Variabeln har värdet Ja när analysenheten har egenskapen som är av värde, och annars Nej. För att undersöka om återgång i arbete och de andra faktorerna påverkade livskvaliteten utfördes först en linjär regressionsanalys med förändringsmåttet för hälsorelaterad livskvalitet (EQ5D), genom EQ VAS och EQ5D-index som beroendevariabel med en oberoende variabel åt gången. I nästa steg genomfördes en multipel regressionsanalys för att justera för influenser av andra variabler och se sambandets styrka. Det var inte möjligt att justera för mer än en variabel åt gången, eftersom svarsfrekvensen varierade för olika variabler. Ett p-värde < 0,05 ansågs vara statistiskt signifikant (Bland, 2015).



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Analys studie IV Även i studie IV användes IBM SPSS version 22.0 (IBM Corp., Armonk, 197 NY, USA) för att genomföra analyserna. I denna studie är beroendevariabeln dikotom, dvs. ”personerna har återgått i arbete” – ja/nej. Antalet händelser av ett visst slag som observeras under en viss tid används för att i efterhand skatta sannolikheten för att händelsen ska inträffa. Sannolikheten för att personen ska återgå i arbete, dividerat med det totala antalet deltagare, kallas för risk. Risken kan variera mellan 0 och 1 (0–100 procent). Relativa risken uttrycker hur stor risken är för ett visst utfall beroende av exponeringen för en viss annan variabel (Andersson, 2016). Till exempel kan risken för att inte återgå i arbete större bland de som blivit av med sitt körkort (exponerad) än de som inte blivit av med körkortet (inte exponerad). Även det 95 procentiga konfidensintervallet för varje riskkvot beräknades. Chi-2 med Fishers exakta test användes för att beräkna pvärdet (Bland, 2015). Ett p-värde < 0,05 ansågs vara statistiskt signifikant.

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Etiska överväganden För avhandlingens studier finns två etikgodkännande, ett för studie I och II (2008/349) och ett för studie III och IV (2016/055). Båda etikprövningarna gjordes av Regionala etikprövningsnämnden i Uppsala. De etiska överväganden som gjorts inom ramen för detta avhandlingsarbete följer de fyra grundprinciperna från Humanistisk-samhällsvetenskapliga forskningsrådet: informationskravet, samtyckeskravet, konfidentialitetskravet och nyttjandekravet (2003; Vetenskapsrådet, 1990, 2017). Uppgifter om personerna i studierna har hanterats konfidentiellt och rapporterats på ett sådant sätt att de inte går att identifiera av utomstående. Insamlat material har endast använts för forskningsändamål så som det är angivet i delstudiernas syfte, i etikansökan och i forskningsplanen.

Etik studie I och II I den skriftliga och muntliga informationen till personerna i studie I och II ingick framför allt information om studiernas syfte och möjligheten att när som helst avbryta sitt deltagande. Alla personer i dessa båda studier gav sitt muntliga och skriftliga samtycke till att delta. I studierna gjordes överväganden om hur mycket data som skulle samlas in, innan mättnad uppstod



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(Sandelowski, 1995). Det är en viktig aspekt att inte samla in data som inte används. Vad gäller intervjuerna i studie I ställdes frågor till personerna som handlade om skadetillfället och deras minnen återuppväcktes. Det fanns en risk för att det kunde medföra obehag för dem, men intervjun kunde också innebära ett tillfälle till bearbetning och reflektion tillsammans med någon som intresserade sig för deras erfarenheter. Intervjupersonerna i studie I erbjöds att ha med sig någon person som stöd under intervjutillfället om de önskade, men ingen antog detta erbjudande. På motsvarande sätt erbjöds de också stöd från kurator ifall obehagskänslor skulle uppstå i samband med intervjutillfället. Det blev inte aktuellt för någon av personerna. När studie II skulle genomföras togs förnyad kontakt med personerna i studie I för att få muntligt samtycke till att kontakta de föreslagna stödpersonerna, då flera år hade gått sedan de första gången godkänt förfrågan. Kontakten togs av respekt för personerna även om de tidigare hade samtyckt till kontakt och intervju med stödpersonerna. Vid detta senare tillfälle samtyckte alla personer i studie I utom en till att kontakt fick tas med den stödperson som de tidigare föreslagit. De nio kvarstående stödpersonerna accepterade och samtyckte skriftligt till att delta i studie II. Samtliga citat i de båda intervjustudierna har avidentifierats för

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att identiteten på personerna inte ska kunna röjas. Detta gjordes med hänsyn till konfidentialitetskravet.

Etik studie III och IV I studie III och IV lämnade kvalitetsregistret skriftlig och muntlig information och inhämtade samtycke till deltagande i kvalitetsregistret. I samband med detta samtycke informerades också deltagarna om att data kan komma att användas för forskning. Varken registerhållaren eller forskargruppen gjorde någon ytterligare förfrågan i samband med utlämnandet av registerdata angående enskilda deltagares samtycke, och det ansågs heller inte nödvändigt av etikprövningsnämnden. Att behandla känsliga personuppgifter om diagnoser, skattad autonomi, livskvalitet, arbete och utbildning kan innebära integritetsintrång. Registerhållaren har tagit ställning till att uppgifterna är viktiga för att kunna följa upp och dra slutsatser på lång sikt om personers rehabilitering och kunna jämföra insatser mellan enheter för att utveckla verksamheterna för personernas bästa. Behovet av att se samband mellan olika sjukdomar eller skador, rehabiliteringsinsatser och utfall är också stort ur forskningssynpunkt. Forskaren har ingen rätt att få ut uppgifter från kvalitetsregistret utan att det prövas om obehag kan uppstå för individen och uppgifter kan sekretessbeläggas. För forskning på



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data som kan knytas till en levande person gäller etikprövningslagen

(2003)

och

dataskyddsförordningens

regelverk

(Europaparlamentet, 2017). I de studier som genomförts inom ramen för denna avhandling har inga individuella resultat använts utan all data har aggregerats på gruppnivå.

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Resultat Studie I: Erfarenheter av återgång i arbete Resultatet från studie I visar tre teman som beskriver personer med förvärvad hjärnskadas erfarenheter när det gäller möjligheter och hinder för återgång i arbete: •

individuell anpassning

•

motivation

•

kognitiv och social förmåga, se tabell 3.

Dessa tre teman kan beroende på kontexten vara en möjlighet eller ett hinder. Till exempel blir det ett hinder om ingen individuell anpassning av arbetet har gjorts, medan anpassningar ökar möjligheten för personen att återgå i arbete. Ett tema som framkommer är att rehabiliteringen kontinuerligt behöver anpassas efter individens behov av insatser och stöd i arbetsrehabiliteringen. Det kan handla om individuella anpassningar för att möta fysiska, psykiska och kognitiva behov samt social träning. En del behöver anpassningar på arbetsplatsen i många år efter skadan. Insatserna från arbetsgivaren har dock sällan utformats efter personens individuella behov, och kännedom om personens svårigheter är därför betydelsefull i situationer som handlar om individuella anpassningar. Att behoven är individuella och kontinuerligt behöver utvärderas bidrar till att personerna själva måste vara delaktiga i sin egen arbetsrehabilitering, vilket de uppfattar som positivt. MARIE MATÉRNE Återgång


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Personer med förvärvad hjärnskada upplever också att motivation är viktigt för att lyckas återkomma i arbetslivet. Om motivationen är för hög kan de dock pressa sig själva att återgå i arbete för fort eller i för hög omfattning. Denna press kan ge negativa konsekvenser, till exempel en ny sjukskrivning. Om motivationen i stället är för låg saknas den egna drivkraften för att återgå i arbete. Då är stödet från stödpersoner, arbetsgivare och rehabiliteringspersonal viktigt. Det sista temat handlade om att hjärnskadan ofta innebär kognitiva svårigheter och sociala begränsningar. Alla personer i studien led av hjärntrötthet och uppmärksamhets- och koncentrationssvårigheter. Flera hade svårt att hitta ord, hade lättare afasi eller problem med siffror. Några led av nedstämdhet, var mindre stresståliga och arbetade långsammare än tidigare. Tid och takt hade blivit ett bekymmer, då det tog längre tid att utföra visa arbetsuppgifter. Flera hade också svårigheter med minnet. Flera av dem beskrev också att de kognitiva svårigheterna kunde leda till sociala begränsningar som till exempel att minnet ställde till svårigheter som innebar att personen kom försent till möten och arbetsgruppen blev irriterad. Sociala begränsningar kunde till exempel innebära att en person med afasi hade svårigheter att delta i ett samtal med vänner och arbetskamrater.

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Studie II: Stödpersoners uppfattning av stöd vid återgång i arbete Studie II visar att stödpersonerna har en multidimensionell syn på sin roll som stöd för personer med förvärvad hjärnskada vid deras återgång i arbetslivet. De har alltså många olika funktioner och roller i arbetsrehabiliteringen. Stödpersonerna var utvalda av personerna med förvärvad hjärnskada själva och de hade olika roller i förhållande till dem, såsom anhörig, personalchef, kollega, professionella och chef. De kunde bidra med stöd genom långvarig kännedom om personen oavsett om de hade arbetsgivarens mandat eller inte. Tre övergripande teman om stödpersonernas uppfattning om sin roll som stöd framkom efter analysen: •

engagemang

•

anpassning

•

samverkan.

Av tabell 3 framkommer vilka kategorier som bildat dessa teman i resultatet. Det första temat handlar om att stödpersonens engagemang skapar förutsättningar för personen med hjärnskada att höja sin motivation för att återgå i arbete. Stödpersonerna kan genom sitt engagemang också fungera som diskussionspartner i olika sammanhang på arbetsplatsen eller i andra miljöer och ge uppmuntran. Detta engagerade stöd ger omgivningen signaler om



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personens fortsatta möjligheter att inkluderas i arbetslivet. Avsaknad av engagerat stöd ger enligt stödpersonerna sämre förutsättningar för att återgå i arbete. Det andra temat handlar om det stöd som stödpersonen kan ge i samband med diskussioner om anpassningar på arbetsplatsen. Diskussionerna kan innefatta samtal mellan personen och representanter för arbetsplatsen och ibland myndigheter, där stödpersonerna kan bistå personen genom sin kunskap om personens förmågor och begränsningar. Framför allt har stödpersonerna god kunskap om personens kompetens och sociala förmåga. Stödet kan också underlätta anpassningen i arbetsgruppen för personen genom att stödpersonen hjälper till för att han eller hon ska bli accepterad i arbetsgruppen efter skadan. Stödpersonerna upplever också att de genom olika typer av anpassningar, till exempel i arbetsgruppen, kan stötta personen att bygga upp sitt självförtroende igen, genom att han eller hon känner sig accepterad och lättare lyckas med olika uppgifter när anpassningar gjorts på ett lämpligt sätt. Det kan vara värdefullt om stödpersonen själv har varit drabbad av någon form av sjukdom eller funktionsnedsättning och genomgått arbetsrehabilitering. Denna erfarenhet kan öka stödpersonens förmåga att känna igen processen och det underlättar därmed för personerna med förvärvad hjärnskada.

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Det tredje temat, samverkan, handlar om att stödpersonerna kan ge stöd i samverkanssituationer genom sin kunskap om personens behov. Alla stödpersonerna kände personen innan skadan, och flera av dem beskrev att de hälsat på personen redan på sjukhuset och sedan följt hela arbetsrehabiliteringen för att fortsätta vara ett stöd även när personen återgått i arbete. Stödpersonerna upplevde att de kunde underlätta samarbetet och samverkan; de kunde till exempel bistå personen i samband med frågor som rörde ekonomi och intyg som ofta innefattade samverkan med andra myndigheter och organisationer.



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Tabell 3: Resultat studie I och II, teman och kategorier Studie Tema Kategorier Studie I Individuell Öppenhet och dialog anpassning Dålig behandling och stöd i arbetsrehabiliteringsprocessen Bra bemötande med empati Anpassning av arbetstiden Anpassning av arbetsuppgifter Krävande att vara den drivande kraften i sin egen arbetsrehabilitering Lönebidrag skapar förutsättningar för bibehållande av arbete Motivation Stimulans, erkännande och välmående ger motivation att återgå i arbete Återgång i arbetslivet ger en framtidstro och vilja Skapa mål för att återgå I arbete Andra värderingar och livsstilsförändringar efter skadan Hitta strategier för att förbättra möjligheterna till livskvalitet och bra bemötande från omgivningen Kognitiva Svårigheter med självkänsla och psyket efter skadan och sociala Ökad trötthet efter skadan förmågor Kommunikations- och kognitionssvårigheter efter skadan Skadan gör att jag hamnat i beroendeställning till andra Ekonomin har blivit sämre Studie II Engagemang Motivation och drivkraft för återkomst i arbetslivet Stöd från omgivningen Strategier för stöd till stödpersonerna Dåligt stöd ger inget resultat Stress och höga krav hindrar återkomst Stödets funktion är diskussionspartner, kontinuitet och uppmuntran Anpassning Anpassning av arbetsförhållanden Kompetens och social förmåga viktiga personliga egenskaper Återanpassning ger självförtroende Svårare med anpassning efter skada Stor arbetsplats på öppna arbetsmarknaden Samverkan Samverkan viktig faktor Information och kommunikation Ekonomi och intyg tungarbetat Återgång till samma arbete en framgångsfaktor Tydlig organisation och ansvar

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Studie III: Förändring av livskvalitet vid återgång i arbete Resultatet från studie III visar att personer med förvärvad hjärnskada som återgår i arbete efter skadan hade ökat sin livskvalitet fram till uppföljningen ett år efter skadan jämfört med de som inte kunnat återgå i arbete, vilka istället hade en minskning av livskvaliteten. Detta resultat visades i båda delskalor av EQ5D, VAS och det preferensbaserade indexet. Resultatet kvarstod även efter justering för andra faktorer som associerats med förändring av livskvaliteten. Vidare framkom att livskvaliteten ökade mer bland personer med högskoleutbildning än de som personer som hade gått grundskola. De personer som ökade sin fysiska förmåga enligt GOSE jämfört med de som inte förändrade sin fysiska förmåga ökade också sin livskvalitet och personer som fick sitt körkort tillbaka efter att det återkallats jämfört med de som inte fått det tillbaka. Det fanns inget samband mellan personrelaterade data såsom ålder, kön, partnerskap, barn eller födelseland och ökad livskvalitet. Inte heller diagnos, vistelse på sjukhus, afasi, funktionsförmåga enligt FIM och stöd i hemmet gav något samband med förändrad livskvalitet.

Studie IV: Faktorer som hindrar återgång i arbete I studie IV visar resultatet att det finns faktorer som är negativt relaterade till möjligheten att återgå i arbete inom ett brett spektrum av områden: demografiska, hjärnskaderelaterade, aktivitetsrelaterade och rehabiliteringsrelaterade områden. MARIE MATÉRNE Återgång


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Bland de personrelaterade faktorerna visar resultatet att kvinnligt kön, födelseland utanför Sverige, lägre utbildningsnivå och inga barn i hushållet har ett negativt sambandmed möjligheten att återgå i arbete. De hjärnskaderelaterade faktorernas utfall resulterade i att närvaro av afasi, längre sjukhusvistelse, låg fysisk funktionsförmåga, låg kognitiv funktionsförmåga, hög nivå av smärta och besvär, samt hög nivå av oro och nedstämdhet minskar möjligheterna att återgå i arbete. Bland faktorer som påverkar aktivitetsförmågan visar resultatet att möjligheterna att återgå i arbete minskar för dem som inte kan klara sin hygien själv, inte kan genomföra sina huvudsakliga aktiviteter och inte kan få sitt fått sitt körkort tillbaka. Slutligen minskar chansen att återgå i arbete vid rehabiliteringsfaktorer såsom att vara missnöjd med rehabiliteringen samt saknainflytande över sin rehabilitering och sin rehabiliteringsplan. Resultatet visar, något förvånande, att färre av de som hade upprättat en rehabiliteringsplan också hade återgått i arbete.

Sammanfattning av avhandlingens resultat Resultaten har sammanfattats i fyra områden: personrelaterade faktorer, hjärnskadefaktorer, aktivitetsfaktorer och rehabiliteringsfaktorer, se tabell 4. De personrelaterade faktorernas resultat visar att högskoleutbildning möjliggör en återgång i arbetslivet och har samband

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med positiv förändring av livskvaliteten. Dessutom ökar chansen att återgå i arbete för den som är man, född i Sverige och har barn i hushållet. När det gäller de hjärnskaderelaterade faktorerna har fysisk och kognitiv förmåga, frånvaro av afasi, avsaknad av smärta, oro och nedstämdhet och kortare sjukhustid positiv betydelse för återgången i arbete. Dessutom har social förmåga hos personen med förvärvad hjärnskada och engagemang hos stödpersonen betydelse. Vad gäller livskvalitet har de med hög motorisk förmåga störst förändring av livskvaliteten. Aktivitetsrelaterade faktorer som påverkar återgången i arbete är motivation hos personen, förmåga att klara hygienen själv och utföra de huvudsakliga aktiviteterna samt få körkortet tillbaka. Att få körkortet tillbaka påverkar också livskvaliteten positivt. Stödpersonen har en viktig funktion vad gäller att hjälpa till med anpassningar i olika situationer för att underlätta för personen med förvärvad hjärnskada. Vad gäller de rehabiliteringsrelaterade faktorerna ökar möjligheterna för personen att återkomma i arbete om insatser, rehabilitering och arbete anpassas individuellt efter personens förmåga. Det kan till exempel innebära att individerna har inflytande över rehabiliteringsplaneringen och är nöjda med rehabiliteringen samt genom att stödpersonerna finns med i samverkanssituationer där de kan hjälpa till med att föra fram personens MARIE MATÉRNE Återgång


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behov och förmågor. Men att ha en skriftlig rehabiliteringsplan ökar inte chansen att återgå i arbete. Slutligen påverkas livskvaliteten positivt av att personen kan återgå i arbete. Tabell 4 Sammanfattning av resultat i de fyra delstudierna Faktorer Studie I Studie II Studie III Studie IV Återgång Återgång i Ökning/höjÅtergång i arbete i arbete arbete ning av livskvalitet PersonInte tillInte tillHögskoleutKön (man) relaterad lämpbart lämpbart bildning Födelseland (Sverige) Högskoleutbildning Barn (i hushållet) HjärnKognitiva EngageHög moto- Frånvaro av afasi skada och mang risk Kortare sjukhustid sociala funktion Fysisk funktion Kognitiv funktion Avsaknad av smärta Ingen oro/nedstämdhet Aktivitet MotivatAnpassFå körkort Dagliga färdigheter (ADL) ion ningar tillbaka Huvudsakliga aktiviteter Körkort RehabiliIndividuSamverÅtergång i Nöjd med rehabilitering ellt kan arbete teringen anpassad Inflytande över rehabiliteringsplaneringen Ingen skriftlig rehabiliteringsplan

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Diskussion I detta kapitel diskuteras inledningsvis resultatet utifrån personrelaterade faktorer, hjärnskadefaktorer, aktivitetsfaktorer och rehabiliteringsrelaterade faktorer, såsom det sammanfattats i resultatet se tabell 4. Sedan diskuteras resultatet i förhållande till Sherbrookemodellen och slutligen kommer en metoddiskussion, slutsats och förslag till fortsatt forskning.

Resultatdiskussion Personrelaterade faktorer I studie IV visar resultatet att kvinnor har högre risk för att inte kunna återgå i arbete efter hjärnskadan än män. Även andra studier visar att männen har en fördel vad gäller återgång i arbete (Arwert et al., 2017; Saeki & Toyonaga, 2010; Waljas et al., 2014; Van Velzen et al., 2009). Statistiska centralbyråns (SCB) statistik för år 2016 visar att det i befolkningen är ungefär 5 procent fler män än kvinnor som arbetar (Statistiska centralbyrån, 2016a). Resultatet för befolkningen i allmänhet handlar inte hur många som återkommer efter skada eller sjukdom, men det visar att fler män än kvinnor arbetar och får anses överförbart till personer med förvärvad hjärnskada som ingår i befolkningen. Dessa resultat kan bero på att familjestrukturen har betydelse för hur



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många som återgår till och är aktiva på arbetsmarknaden. Kvinnor är oftare ansvariga för hemmet och de hemmavarande barnen (Busch et al., 2009). En annan faktor är ålder som i studie IV inte har någon betydelse för återgången i arbete. Andra studier visar dock att de som är yngre lättare kan återgå i arbete än de som är äldre (Busch et al., 2009; Hofgren et al., 2010; Saeki & Toyonaga, 2010). Om resultatet i delstudie IV stämmer med förhållandena i Sverige kan det tolkas som positivt för personer i arbetsför ålder med förvärvad hjärnskada, för det kan betyda att alla får möjlighet till arbetsrelaterade insatser utan hänsyn till ålder. De personer som var födda utanför Sverige hade högre risk att inte återgå i arbete efter hjärnskadan än de som var födda i Sverige, enligt studie IV. SCB:s statistik visar också att andelen i befolkningen som var aktiva på arbetsmarknaden åren 2005–2016 var 13 procent lägre bland de personer som var födda utanför Sverige (Statistiska centralbyrån, 2016a). En person med förvärvad hjärnskada och annat födelseland innebär sannolikt en ökad risk för att man inte har samma möjlighet att återgå i arbete. Samtidigt visar studie III att livskvaliteteten inte påverkas av vilket land personen var född i. Det är värdefullt för de personer som är födda i ett annat land och dessutom har svårt att återgå i arbete efter skadan att livskvaliteten trots allt inte försämras mer än för andra. 70



Studie IV visade att personer med högskoleutbildning har större möjligheter att återgå i arbete än personer med enbart grundskoleutbildning, vilket är i linje med andra internationella studier (Donker-Cools et al., 2016; Treger et al., 2007). Personer med en högskoleutbildning har en större förbättring av livskvaliteten, enligt studie III. Även här finns andra studier som visar att universitetsutbildning påverkar personens livskvalitet positivt (Treger et al., 2007; Trygged, Ahacic, & Kåreholt, 2011). En hypotes är att de som har högre utbildning i större utsträckning också har mer kvalificerade arbeten, till exempel tjänstemannapositioner med arbetsuppgifter som oftare går att anpassa på olika sätt (Saeki & Hachisuka, 2004; Wang et al., 2014; Vestling et al., 2003). Det visade sig i studie IV att barn i hushållet har en positiv effekt på möjligheten att återgå i arbete efter förvärvad hjärnskada. Men att vara gift eller leva i partnerskap gör däremot ingen signifikant skillnad. Barns betydelse för arbetsrehabiliteringen kan bero på att de är en källa till ökad motivation och drivkraft (Strandberg, 2006). Liknande resultat ses i en annan studie om familjestöd till individer med traumatisk hjärnskada (Nalder et al., 2012). Resultaten pekar på att det är viktigt med stöd från nära familjerelationer för möjligheten att lyckas med rehabiliteringen.



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Flera av de personrelaterade faktorerna kan samverka och göra det svårare för en person att återgå i arbete (Söder & Grönvik, 2008). Att till exempel förvärva en hjärnskada, vara kvinna och ha ett annat ursprungsland gör att personen får extra svårt att återgå i arbete. Hjärnskaderelaterade faktorer Resultatet i studie I och IV visar att en god fysisk förmåga är viktigt för återgången i arbete, och även detta stämmer med tidigare forskningsresultat (Arwert et al., 2017; Fride et al., 2015; Saeki & Toyonaga, 2010; Shames et al., 2007; Tanaka et al., 2011; Van Velzen et al., 2009; Vestling et al., 2003). Vidare visar studie III att en god fysisk förmåga leder till större förbättring av livskvaliteten. Även detta resultat bekräftas av andra studier som visar att personer som klassar sin motoriska förmåga högt upplever att deras återgång till samhällslivet går lättare (Gerber, Gargaro, & McMackin, 2016). Personer med begränsade möjligheter att vara fysiskt aktiva har sämre hälsorelaterad livskvalitet (Bize, Johnson, & Plotnikoff, 2007), vilket med stor sannolikhet kan överföras till personer med förvärvad hjärnskada. Studie I och IV påvisar att en hög kognitiv förmåga hos personer med förvärvad hjärnskada underlättar återgången i arbetslivet. En person i studie I beskrev till exempel att han efter skadan fått svårt med minnet, till exempel att komma ihåg möten. Han ställde sin mobiltelefon en kvart före varje mötes start för att bli 72



påmind om mötet. Det finns andra exempel på anpassningar för att hantera kognitiva svårigheter, bland annat att anpassa information, skapa strukturer för olika aktiviteter under arbetsdagen och tillgängliggöra miljön. I de nationella strokeriktlinjerna framgår att det är viktigt att följa upp och kontrollera den kvarvarande kognitiva funktionsförmågan hos personer med stroke (Socialstyrelsen, 2018). Genom en sådan uppföljning kan den hjärnskadades kognitiva förmåga kartläggas och man kan förskriva anpassningar eller hjälpmedel som underlättar arbetslivet. Studie IV visar att personer med afasi har sämre möjlighet att återgå i arbete än de utan afasi. Det stämmer med andra studier (Dalemans, De Witte, Wade, & Van den Heuvel, 2008) som också visar att de som återgår får mindre krävande arbetsuppgifter än vad de hade före skadan. I studie I beskrev dock en person med lättare afasi som lyckats återgå i arbete, hur hon hanterade sina språkbegränsningar genom att använda bilder för att kommunicera sin målsättning. Studie IV visar att kortare vårdtid på sjukhuset ökar möjligheterna att återgå i arbetslivet efter förvärvad hjärnskada. Vidare visar studie III att livskvaliteten förbättras om vårdtiden är kort. I studie IV framkommer också att det finns ett samband mellan hjärnskadans omfattning, återgången andelen som återgår i arbete och vårdtiden. En lättare hjärnskada innebär kortare vårdtid i populationen för studie IV och därmed större sannolikhet MARIE MATÉRNE Återgång


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för att återgå i arbete. Flera andra studier har visat att en mild hjärnskada ökar sannolikheten för kort vårdtid på sjukhuset (Donker-Cools et al., 2016; Ketchum et al., 2012; Van Velzen et al., 2009; Wang et al., 2014). Personer med måttlig till svår smärta har större risk att inte kunna återgå i arbete än de utan smärta, enligt studie IV. Endast en studie om smärta och återgång i arbete hittades som gäller personer med traumatisk hjärnskada, och den visade att många personer drabbas av kronisk smärta efter skadan (Uomoto & Esselman, 1993). Studien hade dock ingen koppling till arbetslivet. Det betyder att mer forskning på området behövs, men det kan konstateras att många drabbas av smärta och det är angeläget att smärta utreds, behandlas och följs upp för att öka möjligheterna för dessa personer att återgå i arbete. Även oro eller nedstämdhet minskar möjligheten att återgå i arbete efter förvärvad hjärnskada, enligt studie IV. Flera andra studier visar också att oro och nedstämdhet är ett hinder för arbetsåtergång (Arwert et al., 2017; Fride et al., 2015; Van Velzen et al., 2009). Det är betydelsefullt att kontinuerligt undersöka, eventuellt behandla och ge stöd för de psykologiska konsekvenserna av hjärnskadan såsom oro och nedstämdhet för att öka möjligheterna för personer med förvärvad hjärnskada att återgå

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i arbete. En studie visar att hela 53 procent av personer med traumatisk hjärnskada led av omfattande depression under första året efter skadan (Bombardier et al., 2010). Resultatet i studie I visar att personens sociala förmåga är en viktig egenskap när det gäller att bli accepterad av kollegor och chefer på arbetsplatsen. Flera personer i studie I beskrev att kollegorna på arbetsplatsen hade svårt att förstå att de hade en hjärnskada eftersom den inte syntes utanpå, och att den påverkade deras möjlighet till social interaktion negativt. En annan person i studie I beskrev att kollegorna på arbetsplatsen hade läst på om hjärnskador för att ge henne ett bättre bemötande när hon kom tillbaka, vilket hon uppskattade. Den sociala interaktionen med kollegor på arbetsplatsen är också en viktig del i arbetsrehabiliteringen (Tjulin, Maceachen, Edvardsson Stiwne, & Ekberg, 2011). De som har kvar sin sociala förmåga har lättare att få hjälp och stöd från omgivningen (Shames et al., 2007). Det kan innebära att kollegor kan stödja personen på väg tillbaka till arbetet och på arbetsplatsen genom att visa på hans eller hennes värde och motverka stigma som rör funktionsnedsättningen (Goffman, 2014). Genom att motverka stigma ökar möjligheten för personen att känna sig trygg och ge ärlig information om sin arbetsförmåga (Kirsh et al., 2009). Öppenhet om arbetsförmågan kan i sin tur leda till bättre individuell anpassning av arbetsuppgifterna (Karasek & Theorell, 1990). MARIE MATÉRNE Återgång


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Slutligen visar resultaten i studie II att stödpersonens roll handlar om deras engagemang för personen med förvärvad hjärnskada. Engagemanget är en faktor för att personerna ska kunna behålla eller få motivation för att återgå i arbete. En stödperson beskrev att han var viktig som diskussionspart för personen med förvärvad hjärnskada som kände sig orolig; stödpersonen kunde bekräfta honom och vara ett slags trygghetsfilter. Engagemanget handlade om att ställa rimliga krav på personen med förvärvad hjärnskada, vilket stödpersonerna kunde hjälpa till med eftersom de alla kände personen och dennes förmågor väl. Ett engagerat stöd från kollegor och chefer är också viktigt. Resultatet är i linje med annan forskning som visar att nyckelfaktorer är en kombination av stöd, engagemang (Bonneterre et al., 2013), kunskap om personens livsförhållande och konsekvenser av skadan som ger motivation till personer med förvärvad hjärnskada att återgå i arbete (Bonneterre et al., 2013; Gilworth, Eyres, Carey, Bhakta, & Tennant, 2008). Aktivitetsrelaterade faktorer Aktivitetsrelaterade faktorer är de möjligheter och hinder som påverkar en persons förmåga att utföra aktiviteter efter skadan. Motivation är enligt studie I en av de viktigaste faktorerna för att personer med förvärvad hjärnskada ska nå målet att återgå i arbete, men den behöver vara balanserad efter personens förmåga, så att den inte är för hög eller för låg. Motivation beskrivs 76



i litteraturen som tvådelad: inre motivation faktorer (intrinsic) och yttre motivation(extrinsic) (Deci, Koestner, & Ryan, 1999). Den inre motivationen kan vara en handling som förstärks av sig själv såsom att kunna återgå till arbetet av egen kraft. För att ha en stark motivation behöver personen höja sin inre motivation, till exempel genom att lyckas återta färdigheter som han eller hon hade innan skadan. Den yttre motivationen innebär att ett beteende förstärks genom att det följs av belöning, till exempel beröm från omgivningen. Yttre faktorer kan vara motiverande, men bara om de har koppling till vad personen har presterat på till exempel arbetet. Att enbart lita på belöning och uppmuntran i sig räcker alltså inte. Studie I visar att den egna motivationen hänger samman med möjligheten att komma tillbaka till arbetet. Genom att lyckas återkomma kände personerna med förvärvad hjärnskada att allt skulle återgå till det normala, och detta var deras drivkraft (Medin, Barajas, & Ekberg, 2006; Rubenson et al., 2007; Stergiou-Kita et al., 2010). För de personer som hade svårt att återgå till arbetet eller inte kunde gå tillbaka till samma tjänst påverkades motivationen negativt. För dem kunde andra faktorer i livet bli viktiga såsom naturen och familjen, och på så vis kunde även deras motivation öka. I studie II visar stödpersonernas engagemang att motivationen hos personen med förvärvad hjärnskada kan öka om stödpersonernas beröm och uppmuntran är kopplad till återgång i arbetet. Motivationen att MARIE MATÉRNE Återgång


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lyckas komma tillbaka till arbetslivet bör alltså beaktas för varje person som förvärvar en hjärnskada (Frostad Liaset & Loras, 2016; Rubenson et al., 2007; Van Velzen et al., 2011). Om personen kan utföra lite eller ingen personlig hygien själv är det högre risk att personen inte kan återgå i arbetslivet efter förvärvad hjärnskada, enligt studie IV. Inga andra studier har påträffats som studerar relationen mellan personlig hygien och återgång i arbetslivet. Vidare visar studien att risken ökar för dem som i liten utsträckning eller inte alls kan utföra tidigare dagliga aktiviteter såsom fritidssysselsättningar. För att kunna återgå till sina dagliga aktiviteter är det viktigt med återhämtning och att känna sig engagerad i uppgifterna (Teasell, Bayona, Salter, Hellings, & Bitensky, 2014). Även i studie I beskrev flera personer vikten av återhämtning från arbetet genom olika typer av aktiviteter med familjen och i naturen. Både personlig hygien och dagliga aktiviteter är uppgifter där flera olika delar ingår, och personen kan behöva hjälp för att återta förmågor han eller hon hade före skadan och/eller förstå sin nya situation och kunna anpassa sig till den. I studie I finns exempel på hur arbetsplats, arbetstid och arbetsuppgifter har anpassats för att personerna med förvärvad hjärnskada ska kunna återgå i arbete. Studie II visar hur denna anpassningssituation kan underlättas av stödpersonerna som ofta har en nära och viktig kunskap om personen. De kan hjälpa 78



till i anpassningen genom att diskutera och engagera sig i personens arbetsrehabilitering. Diskussioner kunde till exempel handla om anpassning av raster, arbetstider och arbetsuppgifter. Tidigare forskning visar också att möjligheten att återgå ökar om personen är inkluderad i beslutsprocessen kring anpassningar (Van Velzen et al., 2011). Stödpersonen kan alltså vara en facilitator i diskussioner om anpassningar på arbetsplatsen. Att ha körkort har betydelse, och att få körkortet återkallat ökade risken för att personen inte ska kunna återgå i arbete, enligt studie IV. Även i studie I och II fanns deltagare som beskrev att indraget körkort lett till svårigheter med transporter till och från jobbet. Vidare visar studie III att den största förändringen av livskvalitet hade de personer som fick sitt körkort återkallat vid utskrivningen från sjukhuset och sedan fick det tillbaka vid uppföljningen ett år efter skadan. De som inte hade fått det tillbaka och de som inte hade körkort före skadan hade däremot en försämring av livskvaliteten. Också andra studier har visat att körkort har betydelse för ett produktivt liv med till exempel delaktighet i samhällslivet och arbete för personer med förvärvad hjärnskada (Fraas & Calvert, 2009; Rapport, Bryer, & Hanks, 2008). Personer med betydande funktionsnedsättning har större sannolikhet att bli mindre delaktiga på grund av transportrelaterade problem, och blir oftare tvungna att avbryta till exempel ett



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möte för att passa en transport såsom buss eller färdtjänst (Bascom & Christensen, 2017). Rehabiliteringsrelaterade faktorer Rehabiliteringsrelaterade faktorer handlar om upplevelsen av den rehabilitering som personen tagit del av för att kunna återgå i arbetslivet efter skadan. Återgång i arbete som målsättning ger motivation och en förhoppning om att livet ska bli som förut (Burns et al., 2018; Medin et al., 2006; Rubenson et al., 2007; Stergiou-Kita et al., 2010). För de personer som kan återgå i arbete visar studie III den största ökningen av livskvaliteten mätt från utskrivning från sjukhuset till uppföljning ett år efter skadan. Även andra studier har visat att livskvaliteten ökar för de som kan återgå i arbetslivet (Arwert et al., 2017; Corrigan et al., 2001; Fride et al., 2015; Passier et al., 2011; Vestling et al., 2003). Att kunna återgå i arbete handlar framför allt om vikten av att vara betydelsefull och känna stolthet (Vestling, Ramel, & Iwarsson, 2013), men också att kunna bidra ekonomiskt, vara delaktig i samhället och interagera med andra (Alaszewski, Alaszewski, Potter, & Penhale, 2007; Hartke, Trierweiler, & Bode, 2011; Vestling et al., 2013). Resultatet att återgång i arbete ger ökad livskvalitet är viktigt för att rehabiliteringsinsatserna i möjligaste mån ska kunna riktas mot återkomst i arbetslivet för personer med förvärvad hjärnskada.

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Enligt deltagarna i studie I behövs individuella anpassningar för att uppnå en optimal arbetsrehabilitering. Det kan till exempel gälla stöd i kontakter med myndigheter, träning och återgång i en anpassad takt. Alla deltagare i studie I beskrev att det handlade om att skapa dialog med viktiga personer i arbetsrehabiliteringen och på arbetsplatsen för att möjliggöra individuella anpassningar. Även andra studier visar att anpassningar handlar om kommunikation (Worrall et al., 2011) och olika individuella lösningar (Häggström & Larsson Lund, 2008) för att underlätta arbetsåtergången med hänsyn till skadan och personens hela livssituation. Genom koncentration på arbetsrehabiliterande åtgärder som är anpassade för personen av de professionella i arbetsrehabiliteringen, med fokus framför allt på de som är i riskzon för att inte kunna återgå i arbete, kan arbetsåtergång underlättas (Donker-Cools et al., 2016). De personer som var nöjda med inflytandet över sin rehabilitering och den individuella rehabiliteringsplanen hade större möjligheter att återkomma i arbetslivet, enligt studie IV. Ingen annan studie med samma syfte har hittats, men begränsad evidens finns för att personer med neurologiska, kardiovaskulära och respiratoriska funktionsnedsättningar som deltar i planeringen av sin rehabilitering i högre grad följer den träningsregim som beslutats (Levack et al., 2006). Det finns också stark evidens



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för att särskilt svårnådda mål kunde förbättra personens förmåga. Studie IV visar också att om personen är nöjd med behandlingen på sjukhuset ökar chansen för att han eller hon ska kunna återgå i arbete, vilket gör att det är viktigt att personen får god vård. Att få vara delaktig i sin egen rehabilitering ökar sannolikt också möjligheten att återgå i arbete. Samarbete i arbetsrehabiliteringen underlättas om personen kan återgå till sin tidigare arbetsplats, enligt studie II. Flera stödpersoner menar att det är viktigt för samarbetet att de kom in tidigt i processen för att ge personen med förvärvad hjärnskada stöd tillsammans med professionella. Också andra studier har visat att samverkan underlättas om det finns en etablerad relation mellan stödpersonen och de professionella (Tate, Simpson, & McRae, 2014). Att återvända till en arbetsgivare och arbetskamrater som har kunskap om personens kompetens och sociala situation underlättar också samarbetet med arbetsplatsen och andra professionella i arbetsrehabiliteringen. Det visar sig även att samarbete i rehabiliteringen mellan interna och externa aktörer ökar chansen för att kunna återgå i arbete tidigt efter skadan (Van Velzen, Van Bennekom, Sluiter, & Frings-Dresen, 2015). Sammanfattningsvis är samarbete tidigt i rehabiliteringen betydelsefullt för återgången i arbete.

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Resultatets relation till Sherbrookemodellen Sherbrookemodellen har inledningsvis använts som en struktur för att beskriva de olika delsystemen i arbetsrehabiliteringen för personer med förvärvad hjärnskada. Resultatet av studierna i avhandlingen visar att det finns ett samspel mellan de olika delsystem som omnämns i Sherbrookemodellen, men bara delar av avhandlingens resultatet återfinns i modellen. Med hjälp av det systemteoretiska perspektivet i Sherbrookmodellen går det att förklara komplexiteten i samspelet mellan de olika systemen (Jönhill, 1997). Denna avhandlings utgångspunkt är individen och de anpassningar och faktorer som har betydelse för individens återgång i arbete. Inom och mellan systemen i Sherbrookemodellen (se modellen figur 1) samspelar olika ”nivåer”. Ett sådant exempel illustreras i det följande. En person som behöver nedsatt arbetstid, till exempel på grund av kognitiv uttröttbarhet (hjärntrötthet), för att orka utföra sina arbetsuppgifter kan få det enligt lag (socialförsäkringsbalken). Då ska en läkare göra en bedömning och skriva ett underlag om sjukskrivning för personen, och sedan fattar Försäkringskassan beslut i ärendet. Om personen förblir sjukskriven påverkar det arbetsplatsens system då någon annan måste göra arbetsuppgifterna. En sådan sjukskrivning som kan vara kortvarig eller långvarig påverkar systemet på olika sätt och



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nivåer; till exempel kan relationen mellan personen med förvärvad hjärnskada (den sjukskrivna) och arbetskollegorna försämras då arbetskamraterna kan få mer att göra. Det är inte alltid kollegorna är lojala med sin skadade arbetskamrat eller ens vet varför personen är sjukskriven. I studie I fanns det en person som beskrev en sådan spänd situation med arbetskamrater som fällt ”skarpa kommentarer” om hennes bristande arbetskapacitet. Detta är ett exempel på hur olika faktorer i och mellan systemen i modellen påverkar och interagerar med varandra. I slutänden får detta konsekvenser för individen och hans eller hennes möjligheter att återgå i arbetslivet efter sin förvärvade hjärnskada. Sherbrookemodellen har i avhandlingen varit användbar för att strukturera och beskriva arbetsrehabiliteringen utifrån de olika delsystemen, men utifrån resultaten i avhandlingens delstudier visar sig modellen ha vissa begräsningar. I Sherbrookmodellen är faktorerna i alla delsystem utom individens resurser/copingförmåga placerade utanför individen själv. Modellen lägger inre aspekter på samma nivå som yttre aspekter. Resultatet i avhandlingens delstudier visar att faktorer inom familjeliv, vardagliga aktiviteter och fritidsliv är viktiga faktorer för möjligheten återgå i arbete även om de i sig inte är en del av arbetet. Genom att strukturellt hålla isär de inre och yttre aspekterna skulle därför Sherbrookmodellen överensstämma

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bättre med hjärnskadade individers situation och vara mer lämplig för att beskriva och förstå deras arbetsrehabiliteringsprocess. Den här föreslagna revideringen av modellen innebär att individens fysiska, kognitiva och affektiva funktionsförmågor blir en del av individen (se figur 2). Dessa förmågor som individen har får därmed en tydligare betydelse för alla delsystem i modellen. I stället för individens resurser/copingförmåga skulle ett nytt delsystem kunna bildas med de faktorer som handlar om individens system. Som ses i figur 2, ligger först familjeliv som beskriver det direkta samspelet mellan individen och familjen. Utanför detta ligger individens förmåga att omsätta sina färdigheter i vardagslivet, såsom t ex personlig hygien, boendet och hushållet. Utanför denna ligger, faktorer som rör fritidslivet, vilket innehåller aktiviteter och sammanhang som personen tycker om att sysselsätta sig med utanför sitt arbete. Den yttersta aspekten är fortfarande sociala relationer och inkluderar relationer till andra, närstående och vänner i omgivningen. Denna aspekt inbegriper även nätverkets relationer som indirekt rör individen. Detta delsystem i den reviderade Sherbrookmodellen föreslås benämnas för Individens system. Dess aspekter med familjeliv, vardagsliv, fritidsliv och sociala relationer får konsekvenser när det gäller att skapa en helhetssyn, inkluderande det sociala systemet, runt arbetsrehabilitering för individer med förvärvad hjärnskada.



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Figur 2: Förslag till en utvecklad Sherbrookemodell som illustrerar delsystem som är inblandade i sjukskrivning, rehabilitering och återgång i arbete och inkluderar det nya delsystemet - Individens system.

Metoddiskussion Enligt Bryman (2011) är det en styrka om olika metoder används för att studera en företeelse. Studierna i avhandlingen är designade så att de undersöker angränsande frågor med olika metoder. Två studier undersöker möjligheter och hinder när det gäller gång i arbetslivet med två olika kategorier av intervjupersoner.

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En tar reda på vilka faktorer som hindrar återgång i arbete. Slutligen ingår en studie i avhandlingsarbetet som besvarar frågan om personens livskvalitet förändras i relation till återgång i arbete. Återgång i arbete har i denna avhandling definierats som arbete på minst 50 % vid uppföljningen, bland dem som arbetade till 50 % eller mer vid inskrivningen på sjukhuset och var helt sjukskrivna vid utskrivningen. Alla fyra studierna har använt samma avgränsning i inklusionskriterierna, vilket skapar en enhetlighet i avhandlingen. Men resultatet kanske inte är generaliserbart till andra grupper som till exempel de som gått tillbaka till arbete i mindre omfattning än 50 %. Studie I och II Valet av metod, urvalet av intervjupersoner, forskarnas förförståelse, analytiska förmåga, datakvaliteten, användning av citat och tolkningen av resultatet är faktorer som ökar trovärdighet i resultatet vid kvalitativa studier (Bryman, 2011). I avhandlingens delstudie I och II representerade forskarna olika erfarenheter (förförståelse) av målgruppen. Genom att diskussioner av innehållet i analysen gjordes till dess att konsensus uppnåddes en högre trovärdighet än om endast en forskare genomfört analysen ensam (Bryman, 2011; Graneheim & Lundman, 2004; Kvale &



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Brinkmann, 2009). Citat från intervjuerna användes i båda studierna för att belysa personernas erfarenheter och uttalanden (Graneheim & Lundman, 2004). Intervjuerna i studie I genomfördes 2009–2010, med den då nya rehabiliteringskedjan som innebar nya tidsmarginaler för sjukpenning. Före 2008 kunde personerna också beviljas tidsbegränsad sjukersättning, vilket innebar att de under denna period inte behövde lämna in nya läkarintyg. Om intervjuerna gjordes i dag med nya kontextuella faktorer skulle detta kunna påverka resultatet genom att personerna inte känt sig så stressade av att förhålla sig till tidsgränserna de tidsgränser som fanns. I studie I utgjordes populationen av ett målstyrt urval (Bryman, 2011). I studie II användes ett lämplighetsurval eftersom intervjupersonerna var utvalda av personerna i studie I. Detta urval fick inte samma spridning som det i studie I och kanske har fenomenet inte fångats med samma djup i studie II. I intervjusituationen kan personerna som deltar i intervjuerna haft svårt att minnas det efterfrågade fenomenet, vilket kan hända

vid

intervjuer

som

omfattar

retrospektiv

data

(Sandelowski, 1993). I studie I hade några av deltagarna en kognitiv nedsättning som kan innebära svårigheter med minnet. Dessa personer levde dock fortfarande med sina skador och de hade alla kontakt med stödpersonerna som senare intervjuades i

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studie II. Det innebär att alla dagligen hade tillgång till upplevelser och erfarenheter av arbetsliv och förvärvad hjärnskada, och det är rimligt att tänka sig att de också lättare kunde minnas hur det var. Studie III och IV I studie III och IV användes kvalitetsregisterdata för observationella studier och en kohort inkluderades utifrån inklusionskriterierna (Jacobsson Ekman, Lindahl, & Nordin, 2015). Ett relativt omfattande datamaterial kunde hämtas ur registret. Däremot kan data från registerstudier hålla mindre god kvalitet genom att inte data är komplett för samtliga patienter (internt bortfall). Detta kan bero på exempelvis felläsning, felinmatning, svårtolkade frågor eller att det är möjligt att välja bort att besvara vissa frågor vid uppföljning i registret. I WebRehab Swedens fall gjordes uppföljningen ett år efter skadan (Jacobsson Ekman et al., 2015). I studie III innebar det interna bortfallet att i regressionsanalyserna kunde resultatet endast justeras för en förväxlingsvariabel (eng confounder) åt gången. Ett annat problem med registerdata är att registret kan saknavissa intressanta variabler. För denna avhandlings frågeställningar hade till exempel frågor omkring hjälpmedel och anpassningar av arbetssituationen, såsom anpassad arbetstid och andra



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faktorer av betydelse för arbetsåtergång och arbetsliv. Fler variabler som rör aktiviteter och rehabilitering hade också varit värdefulla i studie III och IV.

Slutsatser av avhandlingens resultat Materialet innefattar olika typer av data upplevelser, erfarenheter och faktorer. Studierna i avhandlingen visar att återgång i arbete för personer med förvärvad hjärnskada är komplex. Det inbegriper många faktorer inom olika områden: personrelaterade faktorer och hjärnskaderelaterade faktorer, aktivitetsrelaterade faktorer och rehabiliteringsrelaterade faktorer. Möjligheterna att återgå till arbete efter skadan ökar om personerna ifråga har motivation, får en individuell anpassning och har bra social och kognitiv förmåga. Motsatsen hindrar dem. Stödpersonerna ansåg att de kan vara ett stöd i arbetsrehabiliteringen för personer med förvärvad hjärnskada genom sitt engagemang, genom att hjälpa till i samarbetssituationer och genom att vara ett stöd vid anpassningar. Resultatet visar att de som kan återgå i arbete får en ökad livskvalitet jämfört med de som inte kan återgå i arbete. Livskvaliteten ett år efter skadan ökar också mer bland de som har högskoleutbildning, har en god fysisk förmåga och har fått sitt körkort tillbaka.

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Slutligen visar resultatet att många faktorer tillsammans underlättar återgången i arbete för personer med förvärvad hjärnskada. Faktorer såsom att vara man, vara född i Sverige, ha en högskoleutbildning och ha barn i hushållet underlättar. Vidare underlättar hjärnskaderelaterade faktorer såsom att inte ha afasi, ha bra fysisk förmåga (ingen smärta, kortare tid på sjukhus), en hög kognitiv förmåga och inte känna sig orolig eller nedstämd. Vardagliga färdigheter (hygien), huvudsakliga aktiviteter (arbete, fritid m.m.) och körkort var också faktorer av relevans, liksom att vara nöjd med sin rehabilitering och ha inflytande över den och planeringen.

Fortsatt forskning Arbetsrehabilitering för personer med förvärvad hjärnskada enligt

Socialstyrelsen

ha

sin

grund

i

ett

vårdprogram

(Socialstyrelsen, 2012), en checklista eller rekommendationer som anpassas efter individens behov, och som utgår från evidens. De nationella riktlinjerna för stroke kan ligga till grund för ett sådant vårdprogram (Socialstyrelsen, 2018), det kan kompletteras med program för andra typer av hjärnskador och riktas mot arbetsrehabilitering. Det behövs också mer forskning om vilka rekommendationer som ska ingå i ett sådant vårdprogram eller en sådan checklista för arbetsrehabilitering.



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Det finns internationella studier som utvärderar rehabiliteringsåtgärder (Glintborg & Hansen, 2016) och deras effekter på återgång i arbetslivet, men ytterst få Svenska (Statens offentliga utredningar, 2011). Rehabiliteringsåtgärder får betydelse i den kontext där personen befinner sig och det saknas kunskap om samverkan mellan olika myndigheter i arbetsrehabiliteringen (Statens offentliga utredningar, 2011). Genom att studera samverkan inom olika verksamheter och mellan olika aktörer går det att utveckla metoder och modeller för arbetsrehabilitering. Till exempel skulle Sherbrookemodellen (Loisel et al., 2005) kunna utvecklas för att också beskriva processer mellan olika system i arbetsrehabiliteringen för personer med förvärvad hjärnskada. Ett annat viktigt forskningsområde är studier arbetsförmågebedömningar som kan underlätta arbetsrehabilitering. Ett viktigt bidrag skulle vara att genomföra studier där arbetsförmågebedömningsskalan, Work ability support scale (WSS) används som ett verktyg för planering av arbetsrehabilitering (Fadyl, McPherson, Schluter, & Thurner-Stokes, 2015; Turner-Stokes et al., 2014). Detta instrument är inte översatt och validerat för svenska förhållanden, vilket först behöver göras för att sedan implementeras. WSS skulle kunna underlätta återgång i arbete genom att vara ett systematiserat sätt att mäta arbetsförmåga under arbetsrehabiliteringen och vid återgång i arbete.

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Socialdepartementet har utarbetat en ny lag som börjar gälla den 1 januari 2019 med införande av rehabiliteringskoordinatorer som en obligatorisk funktion inom hälso- och sjukvården (Socialdepartementet, 2018). Den nya lagen ska gälla koordineringsinsatser för vissa personer som behöver stöd vid återgången i arbete. Det vore därför intressant att följa implementeringen av denna nya lag och studera effekterna för personer med förvärvad hjärnskada som får stöd av koordinatorernas arbete.



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Summary in English Introduction Approximately 26 500 cases of stroke per year are recorded in Sweden, (Socialstyrelsen, 2017) and a further 14 000 are treated in hospital for traumatic brain injury, but there are also hidden statistics to consider (Socialstyrelsen, 2014). Additionally, approximately 1300 people diagnosed with brain tumors and other nervous system disorders suffer brain injury, and other causes include diseases and bleeding (Socialstyrelsen, 2016). This means that more than 41 800 people suffer from acquired brain injury in Sweden yearly. Those who suffer from brain injury may have physical difficulties such as muscle weakness or paralysis, pain, poor balance, and vision and hearing impairment (Fagius & Aquilonius, 2006; Krogstad, 2012). They may also have cognitive difficulties with time management and sense of direction, spatial awareness, memory, attention, and concentration. Other problems that may arise are fatigue, which causes low energy and powerlessness, and problems with the executive skills that involve difficulty in goal setting, planning, and organizing. Many people with acquired brain injury have psychosocial impairments that can cause changes in personality, mood swings, depression, and stress. These difficulties may affect family life, relationships, working life, leisure, and activities of daily living. 94



Many of those with acquired brain injury lived a normal life in society until the brain damage occurred. For some, the injury affects all areas of life, including medical, psychological, and social aspects (Krogstad, 2012). Approximately 35–41 percent of those with acquired brain injury can return to work after the injury (Vestling et al., 2005; Vestling et al., 2003). Return to work for those with acquired brain injury has been explored, above all in an international context, but little is known about the situation in Sweden. One Swedish study indicated that it can be a complex process (Rubenson et al., 2007). Work rehabilitation support for people with acquired brain injury is important, both from professionals and from informal support persons selected by the affected individual; the support person’s experience about giving support has never been studied before. Research on quality of life for people with acquired brain injury has mainly focused on specific diagnoses, for example stroke or traumatic brain injury, but only a few studies have been conducted on those with acquired brain injury in general. There is no previous research about factors that affect quality of life from hospitalization to follow-up. Nor about return to work and other factors that can affect change in quality of life. Finally, there are no other studies in Sweden with a longitudinal perspective and a large population of those with acquired brain injury.



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Aim The overall aim of the thesis is to study opportunities and barriers for people with acquired brain injuries to return to work and the impact it has on their change in quality of life.

Material and method Different methodologies and analysis have been used in this thesis; see the overview in table 1. Study I and II In Study I, the outpatient team for people with mild to moderate brain injury was contacted to recruit informants to the study. Strategic selection was made (Bryman, 2011) by selecting those with experience of the phenomenon. The inclusion criterion was that all participants should have returned to working at least half time. The informants in study I selected participants for Study II, by identifying someone who had been a significant support person to them during the work rehabilitation process. All interviews took between 45–60 minutes, and they were recorded and later transcribed. Both Study I and Study II were analyzed using qualitative content analysis (Graneheim & Lundman, 2004). The analysis was conducted using the NVivo software program. During the analytical steps, the construction of categories and themes, the entire research group was involved in the discussion until consensus 96



was reached. The quotes were chosen carefully to capture the full range of views expressed by the interviewees. Study III and IV Study III and Study IV are based on data gathered from the quality register WebRehab Sweden between 1 January 2007 and 15 January 2016. The purpose of the register is to improve the quality of the rehabilitation process, to support care process development, to enable comparisons between rehabilitation devices, and to provide research data (Nationella kvalitetsregister, 2018b). After the approved ethics application, the quality register was contacted for data access. A statistician from the register extracted the data, resulting in a sample of 11 346 people with acquired brain injury. Individuals were included only at their first injury and hospital stay. The following categories were included in both studies: 1) people of working age (between 18 and 66 years); 2) people with data from admission to hospital, discharge from hospital, and follow-up one year after injury; 3) people who worked 50 percent or more at admission to hospital and were on 100 percent sick leave at the time of discharge from hospital. In Study III, a subset of 1487 people were included, namely, those with data from the quality-of-life instrument, EQ-5D at follow-up. In Study IV, 2008 people were included in the final study group. These were divided into two groups: 690 people who returned to work and 1318 people who did not return to MARIE MATÉRNE Återgång


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work. The analysis in Study III and Study IV was conducted with IBM SPSS version 22.0 (IBM Corp., Armonk, 197 NY, USA). In Study III, linear regression analysis was used to investigate whether return to work and other factors affected quality of life (quality-of-life change between discharge from hospital to follow-up one year after the injury). In the next step, multiple regression analysis was performed to adjust for the influence of simultaneous variables and see the strength of the association. It was not possible to adjust for more than one variable at a time, considering that the response rate varied for different variables (Bland, 2015). In Study IV, descriptive statistics (mean and standard deviation) were used to characterize the sample, then the risk ratio (RR) and 95% confidence interval of returning to work was estimated for each of the predictor variables. Finally, the chisquare test and Fishers exact test were used to compare groups.

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Table 1 Materials and methods Study design

Included

Material and methods Analysis

Study I Semi structured interviews, Qualitative design

Study II Semi structured interviews, Qualitative design

10 people with acquired brain injury Strategic selection Content analysis

9 support persons Suitability selection Content analysis

Study III Register study, Quantitative, retrospective cohort study with longitudinal design 1486 people with acquired brain injury Strategic selection Linear- and multiple regression analysis

Study IV Register study, Quantitative, retrospective cohort study with longitudinal design 2008 people with acquired brain injury Strategic selection Risk ratio

Results The aim of Study I was to increase knowledge about the experiences of people with acquired brain injury concerning the opportunities and barriers for a successful return to work. The results showed three key themes for the return-to-work process: 1) individually adapted rehabilitation, 2) motivation, and 3) cognitive and social abilities. They may refer to opportunities or barriers depending on the context in which they are addressed, the situation in which the person is treated, or the extent to which the workplace is adapted.



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The aim of Study II was to explore the support persons’ perceptions of being a support to someone with acquired brain injury in the vocational rehabilitation process. The results showed that the support persons' perception of their support role for someone with acquired brain injury returning to work was multidimensional. Their experience was that they had many different functions and roles in the individual’s work rehabilitation. The support persons were selected by the participants with acquired brain injury themselves and had a variety of relationships with them, such as family member, staff manager, colleague, or manager. They were able to provide support through long-term knowledge of the person with acquired brain injury, whether or not they had the employer's mandate. Three overall themes about the support person’s experience of their role emerged from the analysis: 1) commitment, 2) adaptation, and 3) cooperation. The aim of Study III was to investigate changes in quality of life in relation to return to work among patients with acquired brain injury. The results showed that people with acquired brain injury who returned to work had improved quality of life at follow-up one year after injury compared to their quality of life at discharge from the hospital, unlike those who could not return to work. This effect remained after adjustment for other factors associated with quality of life such as age, sex, diagnosis and

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marital status. Furthermore, there was a significantly greater improvement in quality of life for people who had a university education, those who increased their physical ability, and those who had their driver’s license reinstated if it had been withdrawn. There was no correlation between increased quality of life and person-related data such as age, sex, partnership status, children, or country of birth. No correlation was found between quality of life and diagnosis, hospitalization, aphasia, functional capacity, or home support. The aim of Study IV was to investigate risk markers for not returning to work among people with acquired brain injury. In this study, the results shows that a wide range of factors were associated with the ability to return to work. The person-related factors showed that male gender, being born in Sweden, having a university education and having children living at home were positively associated with the ability to return to work. Brain injury-related factors that were associated with an increased opportunity to return to work were the absence of aphasia, shorter hospitalization, high physical ability, high cognitive ability, low pain/discomfort, and low anxiety/depression. Among factors associated with activity, the results showed that individuals who were able to manage their personal hygiene, to carry out their main activities and to get their driving license reinstated had increased possibilities of returning to work. Finally, rehabilitation MARIE MATÉRNE Återgång


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factors that gave an increased opportunity to return to work were satisfaction with rehabilitation, having influence over the rehabilitation and the personal rehabilitation plan. The results also showed that using a standardized rehabilitation plan reduced opportunities for returning to work.

Conclusions Return to work for people who acquire a brain injury is complex and multi-dimensional. The results of these studies show that a wide-ranging combination of personal experience and understanding was involved, related to person, brain injury, activity, and rehabilitation. The results showed that support persons, the family, professionals, employers and others in the work rehabilitation process all facilitated return to work for individuals with acquired brain injury. The person-related factors that were positively associated with return to work were male gender, being born in Sweden, having a university education and having children living at home. Having had a university education was positively associated with the opportunity to return to work and with an improved quality of life. Brain injury-related factors included having good physical, cognitive, and social ability, as well as having only short-term hospitalization. Furthermore, the absence of aphasia, pain, and

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anxiety/depression were also positively associated with opportunities for return to work; all these factors in association with milder brain injury were positively associated with greater opportunity to return to work. Quality of life also improved for those who had a high physical function. Activity-related factors, such as motivation, were positively associated with the ability to return to work; motivation could be improved by the encouragement and commitment of a support person. The support persons could be helpful in various ways, both for assisting with practical adaptations and in discussions with the employer. Individuals with brain injury who could manage their personal hygiene and main activities and who got their driver’s license reinstated also found it easier to return to work. Having a recalled driver’s license reinstated is also associated with improved quality of life. The rehabilitation-related factors showed that individual adaptations in work rehabilitation and at the workplace were of great importance for return to work. Being satisfied with the rehabilitation and having influence over both rehabilitation and rehabilitation planning are important factors for the possibility to return to work. Cooperation is also important, in both the hospital during rehabilitation and with external actors in work rehabilitation, such as the employer, the insurance company, and the re-



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habilitation clinic. Moreover, return to work has a positive association with improved quality of life and is a desirable goal after acquired brain injury.

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Tack Resan har kommit till vägs ände och avhandlingen är klar. Det har bitvis känts som ett maratonlopp där insatsen har varit hög och utfallet oklart – som mitt första maratonlopp där jag var osäker på om jag skulle klara mig till målet rent fysiskt, psykiskt och socialt. När jag kom till upploppet på Stockholms stadion förstod jag att min träning och envishet hade tagit mig i mål; tårarna rann och glädjen var enorm. Även denna resa har varit lång och ibland krokig, men nu är jag framme, och samma euforiska känsla infinner sig. Denna resa hade inte varit möjlig utan de personer som funnits omkring mig, och jag vill av hela mitt hjärta tacka er alla! Jag vill börja med att tacka mina fantastiska handledare som stått vid vätskestationerna längs hela banan, Lars-Olov Lundqvist och Thomas Strandberg. Ni har bidragit med kompetens, olika perspektiv, omtanke och ovärderliga synpunkter. Jag kan inte nog tacka er båda för ert stora engagemang och er vilja att coacha mig fram till målet. Vi kan tillsammans vara stolta och glada över vår prestation. Jag vill tacka mina chefer på Område habilitering och hjälpmedel, Mats Eriksson och Jens Windeborg, som stöttat mig med förutsättningar för att genomföra mina studier ekonomiskt och praktiskt. Jag förstår att det är dags att betala tillbaka. Marga-



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reta Möller, verksamhetschef på universitetssjukvårdens forskningscentrum (UFC), har bidragit med ekonomi, uppmuntran och en kreativ forskningsmiljö. Under åren som doktorand har jag haft två arbetsplatser och många fantastiska kollegor på habiliteringen och på UFC som gett mig stöd på olika sätt, tack! Några kollegor har varit särskilt betydelsefulla. Camilla, min fantastiska rumskamrat som stöttat och uppmuntrat mig: Tillsammans har vi skrattat och torkat varandras tårar, tillsammans är vi starka. Du är bäst, helt enkelt! Lisa, min underbara kollega som är lätt att samarbeta med och som fått dra ett stort lass under åren. Ett annat gäng som förtjänar särskild uppmärksamhet är alla fina löparvänner på UFC med Mialinn i spetsen tillsammans med Lasse, Emma N., Karin, Erik och Anna D. Vilka underbara rundor vi haft, med snack och problemlösning! Jag vill också tacka kollegorna på Institutet för handikappvetenskap. Feridon, tack för att du puttade igång mig och sa att jag skulle bli forskare många år innan jag själv förstod att det var möjligt. Per, för att du uppmuntrade och trodde på mig redan när vi skrev vår D-uppsats. Ni har båda funnits där under hela forskartiden – stöttat, hejat och uppmuntrat med mysiga luncher. Det har varit ovärderligt. Några andra som särskilt bistått mig är Alexia Jaldung som hjälpte mig med översättning av citaten i min första studie; jag 106



var osäker och fick din hjälp. Professor Grahame Simpson, du har på ett lättsamt sätt hjälpt mig med din ovärderliga erfarenhet av forskning inom hjärnskadeområdet. Du är generös och inkluderande och skapar möjligheter, framför allt genom International Network for Social Workers in Acquired Brain Injury (INSWABI) där jag är medlem och tillhör styrelsen. Thank you Grahame! Anders Estling och Anette Liljegren i öppenvårdsteamet för personer med förvärvad hjärnskada som hjälpt till när olika frågor dykt upp. Alla deltagare i studierna, utan er hade detta inte varit möjligt. Flera personer har också genom åren granskat manus, deltagit på seminarier och lagt ner extra arbetstid för att min forskning ska hålla kvalitet: Agneta Carlsson Anderzén, Johanna Gustafsson, Peter Appelros, Bert Danermark, Ann Björkdahl, Emma Nilsing-Stridh och Christian Ståhl. Camilla Ehnfors på Örebro universitet, du har bistått på många olika sätt. Medicinska biblioteket, er hade jag inte klarat mig utan, vilket stöd! Sedan vill jag också tacka mina vänner som funnits där. Mina gamla vänner Kicki, Cissa och Christina och min syster Madde som stått för den mjuka, varma och omtänksamma uppmuntran. Lilla tjejgänget som träffats över en bit mat, varit seriösa och busiga, Anna, Maggan och Camilla. Men också Mia som peppat



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med skojigheter genom små filmsnuttar och andra magiska metoder. Bästa löparkompisarna, Maria Engström och Maria Eriksson. Att följa sitt hjärta har gett mig många möjligheter i livet. Det startade med valet av livspartner. Min fina Janne, du har funnits vid min sida i 30 år. Tack för allt stöd, all omtanke och kärlek. Du är mitt allt, jag älskar dig! Våra fantastiska döttrar Hanna och Lina, tack för all uppmuntran och praktisk hjälp, ni är min livsvärld. Slutligen vår nya kärlek, Maja, detta svarta lilla yrväder, vild, vacker och full av energi, som kommer ge mig nya utmaningar framöver.

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STUDIE I

125

Opportunities and barriers for successful return to work after acquired brain injury: A patient perspective Marie Matérnea,∗ , Lars-Olov Lundqvista,b and Thomas Strandbergb

¨ ¨ Health Care Research Center, Faculty of Medicine and Health, Orebro University, Orebro, Sweden ¨ ¨ of Law, Psychology and Social Work, Orebro University, Orebro, Sweden

a University b School

Received 9 July 2015 Accepted 12 May 2016

Abstract. BACKGROUND: Many people who suffer an acquired brain injury (ABI) are of working age. There are benefits, for the patient, the workplace, and society, to finding factors that facilitate successful return to work (RTW). OBJECTIVE: The aim was to increase knowledge of opportunities and barriers for a successful RTW in patients with ABI. METHOD: Five men and five women with ABI participated. All had successfully returned to work at least 20 hours a week. Their experiences were gathered by semi-structured interviews, which were subsequently subjected to qualitative content analysis. RESULTS: Three themes that influenced RTW were identified: individually adapted rehabilitation; motivation for RTW; and cognitive and social abilities. An individually adapted rehabilitation was judged important because the patients were involved in their own rehabilitation and required individually adapted support from rehabilitation specialists, employers, and colleagues. A moderate level of motivation for RTW was needed. Awareness of the person’s cognitive and social abilities is essential, in finding compensatory strategies and adaptations. CONCLUSIONS: It seems that the vocational rehabilitation process is a balancing act in individualized planning and support, as a partnership with the employer needs to be developed, motivation needs to be generated, and awareness built of abilities that facilitate or hinder RTW. Keywords: Content analysis, vocational rehabilitation, qualitative interviews

1. Introduction 1.1. Acquired brain injury Acquired brain injury (ABI) occurs as a result of a cerebrovascular accident, infection, tumor, intoxication, or trauma to the head [1]. In Western countries, ABI has an annual incidence of 100–300 per 100,000 population [2]. The yearly incidence of ABI in Sweden is 45,000–50,000 [3, 4], and approximately 5,000 ∗ Address for correspondence: Marie Matérne, University ¨ Health Care Research Center, Box 1613, S-701 16 Orebro, Sweden. Tel.: +46196026266; Fax: +4619255559; E-mail: [email protected].

of affected persons are of working age, between 18 and 65 years old [5]. Acquired brain injury is often a lifelong disability that entails a marked change in a person’s life [6]. It involves all biopsychosocial levels [7, 8], with return to work (RTW) being a main goal for people with ABI [9, 10]. In this study, RTW means return to previous work or to a new job, with at least 50% work time, and maintained working at least 1 year post-injury. It is regarded as a primary indicator of successful rehabilitation, thus serving as a proxy for recovery and a measure of rehabilitation. It affects the person’s self-image, wellbeing, and life satisfaction, and leads the person to experience a state of normalcy in

1051-9815/17/$35.00 © 2017 – IOS Press and the authors. All rights reserved This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License (CC BY-NC 4.0).

STUDIE I

Work 56 (2017) 125–134 DOI:10.3233/WOR-162468 IOS Press

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M. Matérne et al. / Opportunities and barriers for successful RTW

society, and become a symbol of success. People with ABI often experience difficulties to return to work [11]. In particular, marginalization at work affects identity and psychosocial wellbeing [12]. Therefore, successful RTW is important from an individual’s perspective [13]. 1.2. Vocational rehabilitation The term vocational rehabilitation (VR) denotes all efforts to help someone to return to work and remain in work despite disability [14]. For people with brain injury, VR can be a struggle, and a challenging, longterm process [15, 16]. In Sweden, the VR process involves many actors, such as the Swedish Social Insurance Agency, employers, and the health care system [17]. The Swedish Social Insurance Agency has been mandated to investigate the right to sickness benefits and coordinate them. The employer has the main responsibility for rehabilitation and needs to ensure that the workplace is suitably organized for people with disabilities [18]. Vocational rehabilitation is performed in collaboration with the local social insurance office. It is aimed at enabling the worker to resume work with his or her employer as soon as possible. Although no law demands that employers provide occupational health programs, small and medium-sized companies often share joint occupational health service centers. These service centers, in cooperation with health care, make assessments of a worker’s ability to work and provide other types of support, such as individual counseling, physical training, and treatment [17]. 1.3. Previous research In a previous Swedish study [19], four out of five persons with stroke below 65 years of age still had cognitive dysfunction 1 year after the stroke; one of five was dependent in activities of daily living, and 20% had returned to employment after 3 years. Hence, people who went back to work several years after the injury often had a long rehabilitation with a work trial. Therefore, longer follow-up periods are needed [15, 19]. The ability to return to work varies across Europe, from about 65% in the Netherlands [20], to approx. 35% in Sweden [21, 22]. Studies from the US show a range, between 18% and 78% [20]. Vocational rehabilitation is time-consuming and the ability to return to work is enhanced by motivation and self-efficacy, in combination with external support [23]. When ABI

patients describe the VR process they say that the hospital-based rehabilitation focuses on body functions and a return to daily activities rather than on RTW [23]. They also report a lack of information about their impairments. Hence, VR of individuals with ABI is a complex process and research aimed to understand mechanisms that underlie a successful RTW is warranted [24]. Previous qualitative research on VR after brain injury [15, 25, 26] reports that information, long-term support, motivation, accommodating management, psychosocial perspectives at the workplace, and flexible working hours are important. These studies also highlight the social value of having a job, and the long-term efforts needed to return to the workplace. None of these studies have, however, been specifically directed at success of RTW in people with ABI. Therefore, the aim of this study is to increase knowledge about experiences of opportunities and barriers for a successful RTW in persons with ABI. 2. Method This study is a qualitative, semi-structured interview study focusing on ABI sufferers’ own experiences of VR. Semi-structured interviews are based on open-ended questions arranged in a logical order to cover the aim of the research. The intention of using semi-structured interviews is to learn more about subjective experiences. Semi-structured interviews were selected as a method because the intention was to get the participants to talk freely about their experience, within the structure of an interview guide [27]. This study is inspired by a hermeneutic theory of science, the purpose of which is to interpret, understand, and describe human experience [28]. 2.1. Participants Participants were recruited from an outpatient unit for people with mild and moderate brain injury in a county in Sweden (Table 1). According to the medical record, seven of the participants had had a mild, and three a moderate brain injury. Inclusion criteria were: 18–65 years of age; RTW after ABI; participation in VR with successful results (i.e., had returned to pre-injury work or to a new job, with at least 20 hours per week at work, during 1 year); ability to communicate in spoken Swedish. The criterion of 20 hours was selected as an indicator for successful RTW. Before injury, all participants had

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No.

Diagnosis

Degree of injury

Age at interview, yrs

Sex

Years since injury

1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

Stroke Stroke Stroke Brain tumor Stroke Stroke Subarachnoid hemorrhage Stroke Traumatic brain injury Traumatic brain injury

Mild Mild Moderate Mild Mild Moderate Mild Mild Moderate Mild

55 54 27 47 41 46 47 54 50 44

F M F F F M F M M M

4 8 7 9 3 9 5 4 6 5

had the ability to work full-time (i.e., 40 hours per week). All participants had contact with the outpatient unit at the time of the interviews. Exclusion criteria were: known drug or alcohol abuse; and severe ABI or other illnesses (e.g., psychiatric diagnosis, neurological disorders) that could affect the possibility to return to work. This study was approved by the regional ethical review board in Uppsala (reference No. 2008/349). Written informed consent was obtained from each participant before the interview.

Occupation at the time of the injury

Occupation after the injury

Study counselor Registered nurse Café assistant Preschool teacher Controller Electrical fitter Logistician, transports Controller Information officer Technical fitter

The same The same Masseur School assistant The same Finance assistant The same The same Information assistant The same

Working time (%) at interview 50% 75% 50% 50% 100% 50% 75% 100% 50% 75%

the participants would talk as freely as possible, but still stay within the boundaries of the key areas [27, 30]. The participants were free to decide where the interviews would take place. Seven chose to be interviewed at their workplace. Two interviews were held at the researcher’s office, and one at the participant’s home. Each interview lasted 60–90 minutes. All interviews were conducted by the same interviewer (T.S.), and were audio-recorded, and transcribed by a secretary. During the interviews, the researcher continued until the researcher decided that saturation had been reached [30].

2.2. Procedure 2.3. Analysis A purposive sampling was chosen to match the criterion of successful RTW [29]. The outpatient unit identified approximately 20 potential participants based on the inclusion criteria. Ten were identified to be contacted for participation in the study, five men and five women, aged 27–55. The team leader for the outpatient unit, a social worker, initially contacted the participants by telephone, and invited them to participate in the study. All gave permission to the researcher to contact them, first by letter and later by telephone, and all agreed to participate. Interviews were conducted using an interview guide based on the study aim and questions concerning the aim [30]. The interview guide consisted of three key areas. The first was about background and consisted of questions about work before the injury, current work, and the perceived importance of work. Questions about VR in the second area included rehabilitation, planning of continued VR, adaptation, and aids. The third area was about working life, i.e., about how the participants were treated at work, about support persons at the workplace, and the future in terms of their career. The goal of the interviews was that

Qualitative content analysis, as described by Graneheim and Lundman [31], was used to analyze the data material. Content analysis can capture variations between the transcribed interviews, which was considered an advantage in this study. The data was structured using the qualitative software program Nvivo10 (QSR International, Inc., Cambridge, MA, USA) to support the analysis. Two researchers (M.M., T.S.) worked in parallel during the analysis to reduce the risk of any item being lost or being inadvertently added to the material [31, 32]. In content analysis, the unit of analysis is the transcribed interview text [31]. The interview transcriptions were read and reread in order to gain an overall sense of the content. Data was in the first step grouped by content area of the interview guide. Thereafter, in the second step, the creation of meaning units began, within each content area. A meaning unit is a meaningful part of the text that is shortened into a condensed meaning unit, an abstraction of the text while preserving the essential content, as described in the literature [27, 31]. The third step was to create codes, which are labels of condensed meaning

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Table 1 Participants’ details

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units [31]. Codes with similar content formed subcategories. These were, in the fourth step, combined into categories. Categories represent a descriptive level and should contain as little interpretation as possible [31]. The fifth step of the analytical process was creating themes, which describe the content of all interviews [27, 31]. The first and third author (M.M., T.S.) cooperated in the fifth step to formulate the themes.

3. Results Three themes were identified, capturing the essence of the material: (i) individually adapted rehabilitation; (ii) motivation for RTW; and (iii) cognitive and social abilities. These themes summarize the findings of the empirical material and address the aim regarding opportunities and barriers for successful RTW. All themes included opportunities and barriers, depending on how they had been adapted to the person’s individual circumstances. 3.1. Individually adapted rehabilitation This theme includes the following categories: transparency and dialog; demanding to be the driving force or receiving individually tailored rehabilitation; conditions for staying in work; attitudes of empathy or lack of empathy; modification of tasks and working time. 3.1.1. Transparency and dialog All participants mentioned a successful VR process with a high level of transparency and dialog between all involved (i.e., the authorities, their colleagues, and themselves). They described their relation and interaction with the administrators, at the Swedish social insurance agency, and at the Swedish public employment services, as meaningful, respectful, and positive. The participants described different kinds of valuable support (e.g., from support persons, from their training, and during rehabilitation). When RTW was most successful, the participants described it in terms of a partnership. One participant had experienced of two types of support, namely, from one administrator who seemed to not care at all, and from another who cared very much. She thought that the administrator who was engaged in the VR, and who followed up her progress, had given her good support.

I think that it’s important that he followed up on me, to see how it’s going. Because what I missed when I was at this company, they just let me go . . . totally . . . without any idea about the disease I had. (Interviewee 3) One participant said she did not think society supported her enough. She had had to become a driving force in her own VR process. She described how she and her relatives had to fight throughout the process, so that she could continue participating in society through employment. She wondered what would have happened without her fighting spirit and without help from her relatives. One and a half years, I think, I had been at home when I began work training . . . but it was stressful and I had to rethink . . . find by myself what to work with. (Interviewee 3) 3.1.2. Demanding to be the driving force or receiving individually tailored rehabilitation All participants described different situations and reactions from employers and colleagues. One participant described a workplace that succeeded in supporting her return to work almost without her noticing the transition between job training and being integrated at work. In this case, her boss took the initiative, which to her made the RTW feel easier because she had less burden and felt welcome at the workplace. And I was really scared the first time I went back to work . . . but it turned out just like I had been there [visiting at coffee break]. We made a little contract [me and the boss] that I would go twice a week . . . and at the beginning, I wouldn’t have to say anything, only listen. But then it turned out that I stayed around and chatted with one person and another, and then . . . my boss says, “Now you need to start work training again, because you are here all the time anyway.” (Interviewee 1) 3.1.3. Conditions for staying in work A male participant who had suffered the misfortune of being retrenched from work at the time of his ABI eventually received wage subsidies, which meant that he was under no pressure to perform at his new workplace. He could work at his own pace and leave his anxieties behind. The only concern he


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Yes, so tense and oh, they knew . . . and they were really well informed. I don’t know; they even had a workplace meeting about me and then they had read everything that they could find about strokes. (Interviewee 1)

The job I have now is almost perfect for me. It’s like, I have flexible hours and I can arrive at work at half past seven, half past eight, or half past nine, or so . . . I have some tasks for example, that I can prioritize and work on . . . if I don’t feel able to concentrate. (Interviewee 6)

The participants talked about adaptation of working hours to enable RTW. Six of the participants had jobs without clear deadlines, which meant that they could have flexible working time and feel free to conduct their work in their own time; they thought this was an advantage.

3.1.4. Attitudes of empathy or lack of empathy The interaction between the person with brain injury and his or her colleagues will, in the best scenario, give a feeling of acceptance, support, and increased self-esteem. One of the participants described the support she had received from a colleague with personal experience of illness and sick leave. On her own initiative, this colleague became a support person, both for the participant and for the employer. The participant felt that this support from the colleague was something special, and it was important to know that someone else had made a successful RTW; it gave her a feeling of hope and success. Yes, I think because she was also afflicted [with breast cancer] a few years ago and then she was also on sick leave from work . . . and then, there wasn’t anyone who called her at home. . . . So when she came back [to work], she decided that it would never happen again around her in her work department. (Interviewee 1) 3.1.5. Modification of tasks and working time Nine of the participants mentioned that informing the workplace about the disability helped increase the likelihood of a positive attitude from colleagues and management, and of modification of tasks according to ability. Some provided this information themselves; some had help from the outpatient unit. One participant did not want to inform his colleagues or management about what the disability meant, as he had a high desire for privacy. He felt that his colleagues were treating him with poor understanding and ignorance, which became a barrier. Another participant told that some of her colleagues had found information about strokes to prepare themselves for meeting her in her new condition.

And we have tried different working hours . . . and find that my best time is before noon. (Interviewee 4) 3.2. Motivation for return to work This theme consists of the following categories: creating goals and boosting confidence; stimulating work tasks and recognition at work; changes in life values and lifestyle after injury. 3.2.1. Creating goals and boosting confidence All participants talked about their motivation for work as a meaningful goal in life. This was based on the thought that if they could succeed in returning to work, everything in life would be back to normal, to the way it was before the injury. This was a driving force and boosted their confidence during the rehabilitation process. I feel that, for me, the rehabilitation isn’t quite complete or real until I am able to work fulltime . . . I might not get there, but my goal is to get back to full-time. (Interviewee 2) But it could at the same time be a hindrance if the process went too fast and led to regress in the process. Five of the participants talked about setbacks during the process. They were motivated and had goals, but the VR became challenging. One described the consequences for her, which was that she felt depressed and had to reduce her working hours. And then the demands started . . . I had really fought to get back to where I was [before the injury] and then I thought it was time. We had a lot to do here [at work] and I felt I should get back to work 75% . . . but then I shouldn’t have [done that]. (Interviewee 5)

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felt had to do with the fear that the Swedish public employment service might withdraw his wage subsidy because the present employer might not be able to afford to employ him any longer under the same conditions.

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Creating goals in the VR process was important for at least eight of the participants. In general, the main goal was going back to work and most of the participants wanted to return to work full-time. One participant, who also had aphasia, used a picture to show her colleagues and the rehabilitation staff her goals. Once she had outlined her goals, she felt she could get support when her motivation was lower. When you don’t have language, you can use pictures. I had an old picture that I had worked on [earlier] at work. I made a picture of how I wanted it to be and I showed it to everyone. (Interviewee 1) 3.2.2. Stimulating work tasks and recognition at work One participant said that she wanted to continue her professional development, but she felt she did not have the capacity. She could not manage to work more than 50%, and had problems with cognitive functioning as well, which became an obstacle. Another participant was happy about feeling needed at work and said she liked the challenges she was given. It is very valuable to go to work and feel appreciated for what you do, get challenges and develop. (Interviewee 4) Good support at the work environment, in terms of creating a social context at work and also finding social acceptance among employers and relatives, was important. All participants described the feeling of being understood and accepted by their employer after ABI. I had the advantage of having very understanding employers . . . I had many good colleagues who helped me a lot. (Interviewee 5) 3.2.3. Changes in life values and lifestyle after injury Another issue that could affect the motivation for work was that, after an ABI, values change. Things in life that used to be important may not be important anymore and things that were not prioritized before injury suddenly become essential. For three of the participants, work had been the most important thing in life, pre-injury. After the injury, other values became important, such as family life and nature.

You appreciate things in a different way, differently to what you did before; otherwise you would take everything for granted. (Interviewee 7) Six of the participants talked about finding strategies to improve their quality of life, which also included work. One man said that work, as it had become after injury, limited his leisure time. For him, time for resilience, respite, and exercise became more important post-injury, as did having a sustainable quality of life. If he did not have enough leisure time he could not manage to do good work and his family life was also impacted. That was the reason why he worked part time. Then I get tired and it causes my family life to suffer and I don’t have time to keep up with my physical rehabilitation. (Interviewee 9) 3.3. Cognitive and social abilities This theme consists of the following categories: communication, learning and other cognitive difficulties; cognitive fatigue; and social dependence and lower self-esteem. 3.3.1. Communication, learning and other cognitive difficulties All participants described in different ways how their cognitive impairments affected their ability to communicate and return to work. They also talked about their memory problems. To overcome some of these difficulties, they used Post-it® notes, cell phones, and colleagues as memory support, but still, memory problems persisted. I forget meetings and appointments, sometimes I just can’t remember. I can completely forget about what I was supposed to do in the next half an hour . . . and that is why I have this telephone set at 15 minute intervals. (Interviewee 5) Cognitive difficulties, with memory problems and difficulties learning new things, were a hindrance for all the participants and made them more dependent on others. This barrier not only affected their ability to do their job, but also the ability to change work. Some described their fear of changes in the organization, and they feared applying for a new job. All changes meant new circumstances and new things to learn, e.g., new computer systems, new colleagues, and new routines. Such changes required more energy than they would have required pre-injury, and it also took


I have difficulties learning new things . . . but the things I knew before the brain injury, they are in my head. (Interviewee 10)

3.3.2. Cognitive fatigue Cognitive fatigue-related problems include losing concentration and no longer being able to pay attention, which may affect the person’s ability to work full-time. It is important for a person to get to know the extent of his or her disability after an ABI. All participants found strategies to make the best of their work situation despite their difficulties; but on the other hand, it was a struggle to adapt to the new situation. One participant described a solution to reduce the problem: I have difficulties keeping focused on one thing . . . I usually have several assignments to work on at the same time . . . I’m able to work on one assignment for 1 or 2 hours and then put it aside, take the next assignment and work with that. (Interviewee 8)

3.3.3. Social dependence and lower self-esteem All participants described lower self-esteem postinjury. They talked about their new circumstances and how they felt about themselves. Their pride and self-esteem had suffered and they also had lower confidence in their ability to cope with things. One of the participants described her situation at the workplace, which affected her self-esteem. She reported that it was difficult for her to explain about her brain injury as it was not visible. She related that her cognitive function also affected her self-esteem and her dependence on her colleagues. Colleagues at her workplace had made sharp comments and she thought they didn’t know about her injury. Sometimes I am hurt by such [dismissive] comments, and I don’t even have the energy to explain [about the injury]. (Interviewee 4)

4. Discussion The purpose of this study was to increase knowledge about opportunities and barriers for successful RTW in persons with ABI, based on their experiences. The main factors for successful RTW in this study were an individually adapted VR process, balanced motivation to return to work, and cognitive and social abilities. Individually adapted rehabilitation means that the individual is in focus of the rehabilitation efforts and that adaptations to work and the life situation have to be made constantly. An individually adapted VR process is a multidimensional task. People with ABI need individually designed treatment [33]. The Swedish society tends to take an individualized work approach [34] where citizens constantly have to make choices. A person with ABI might have difficulties to personally make all these choices. Such a person might require help to make decisions and adjustments in the VR process [25]. This need for individualized support continues for a long time and the support system plays an important role in this process [35]. A solution for the participants’ needs was found, in some cases, with support from a case manager who could coordinate the various partners cooperating in the VR process [36]. The participants talked about the importance of interactions with the authorities and their employer, supporting them in their VR process. They described these interactions as a partnership. A successful partnership assumes that there should be a long-term collaboration, involving two or more actors. It also assumes that the participants must be empowered to act on their own mandate; that all partners contribute with something; and that there must be a formal arrangement that allows the parties to make decisions together [37]. Successful partnerships are dependent on engagement, commitment, and trust [38]. In this study, the partnership with the outpatient unit was crucial for successful RTW. When critical points in the VR appeared, the outpatient unit would help with support through actions, for example by participating in meetings or getting in contact with the authorities. Some participants talked about a good relationship with their employers, whereas others were afraid that reorganization and new tasks at work would be a hindrance, too complicated to manage. Other studies also found that it is important to have a relationship of confidence with the employer who cares about the employees’ needs and wellbeing [26]. Employers face emotional and practical issues when supporting

STUDIE I

more time to learn new things. Some said that it was very hard to discover that their memory was not the same and that learning new things, which used to be easy, no longer was.

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persons with stroke in returning to work [7]. In one study, employers said that they had a lack of knowledge and experience, and would welcome advice from clinicians [7]. All participants in this study talked about their motivation to return to work even if they struggled to balance work, family life, and leisure time. Participants felt that if they succeeded in getting back to work, everything would return to normal. This was a driving force also reported in other ABI research [15, 23, 24]. In this study, the participants explained that if the motivation is too high, however, this can lead to setbacks in the rehabilitation process, which can have a substantial impact on, and become a obstacle to, RTW. One participant especially talked about this high level of motivation and her setbacks led to depression, so she had to decrease her working time. Support and treatment from the outpatient unit or other authorities could perhaps prevent such setbacks. One factor that the participants described that increased the motivation for RTW was the feeling of being accepted in society following the ABI. The social interaction with work colleagues was also important for many, as it provided satisfaction in life [39]. So was the struggle for a state of normalcy, and successful RTW became the proof of such normalcy [9]. All participants talked about their difficulties after the ABI. One of the factors that affected them was cognitive fatigue. Cognitive fatigue after brain injury is a common occurrence [40]. It can affect working as well as social capacity and can be disabling. All participants described cognitive fatigue, both at work and in life situations in general, for example in home situations. Knowledge about cognitive fatigue is important in understanding the consequences for the injured. This knowledge is important, not only for the injured themselves, but for rehabilitation actors and employers so that the injured person’s work environment can be adjusted according to need. Some examples of how to make adjustments in the work environment were mentioned in the interviews, such as technical aids, and having flexible work hours, adjusted work tasks, and support. Other cognitive difficulties described by the participants have also been reported previously, and include difficulties with attention, memory, structure planning, and learning new things [24]. Ponsford et al. (2014) found that self-esteem often decreases after ABI, and this was also a finding in the present study [41]. For example, one woman said that she did not have the strength to explain the

consequences of her injury to colleagues because of negative attitudes at work. She received support in giving information to her colleagues and employer, which reduced some of the misconceptions about ABI, increased her self-esteem, and turned misunderstanding to understanding of how ABI really affects the possibility to successfully return to work. The result can be categorized into two main areas: societal factors and personal factors. Regarding the first, individually adapted rehabilitation is society’s responsibility. On the other hand, motivation for RTW, as well as cognitive and social ability, can be categorized as personal factors, in accordance with another study [26]. These findings could have complex, but attractive, consequences for persons with ABI: complex, because it is difficult to influence society’s structures for people with ABI. Attractive, because, at a personal level, the findings suggest that persons with ABI can affect the result of their own VR process by stating what they need from the VR to be successful. Cognitive and social function can be managed with the right support and, given the right support, the patient with brain injury can learn to find a balance and the right amount of motivation for RTW. 4.1. Methodological discussion In this study, a sample of ten participants was considered adequate, according to Kvale and Brinkmann [30]. To determine an adequate sample size in research is a matter of judgment and experience in evaluating the quality of the information [42]. The interviews were informative and extensive and the researchers judged that the data was sufficient for a qualitative analysis. In accordance with ethics principles, no more data than is necessary should be collected [43]. Participants in research projects can often change their stories from one telling to the next as new experiences cause them to see the nature of, and connection between, the events in their lives differently from one time to the next [44]. In this retrospective study, some of the participants had memory problems, which could have affected our findings. The aim was to study the participants’ own experiences. One of the few techniques available for doing this is through interviews. The participants were all living with ABI and were having to deal with it in their working life and life in general, which suggests that these were experiences they would remember.


Further research may focus on the role and function of a support person during VR, and the collaboration between society, support persons, and people with ABI in managing the VR process. Furthermore, it would be interesting to study how people with ABI could be empowered and participate more actively in their own VR.

[2] [3]

[4]

[5]

5. Conclusion An individually adapted VR process is, according to our findings, important for a successful RTW, which also means that the brain injured patient has to be involved in his or her own VR. Support from society, employers, colleagues, and relatives is important. Motivation for RTW is essential, but there has to be a balance in motivation, otherwise the motivation can turn into a hindrance. Goal setting is useful as a driving force and to increase motivation. Awareness of cognitive and social abilities is essential for finding strategies to handle different situations that occur in VR. The support may be organized as a long-term contribution to enable a successful RTW.

[6] [7] [8] [9] [10]

[11]

[12]

Acknowledgments We acknowledge the valuable help of the outpatient unit. We extend our thanks to the interviewees who participated in this study. This study was supported by grants from the University Health Care ¨ Research Center, Region Orebro County Sweden, and the Swedish Association of Brain Injured and Families.

Conflict of interest

[13]

[14] [15] [16]

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

[17]

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JOURNAL OF SOCIAL WORK IN DISABILITY & REHABILITATION 2016, VOL. 15, NOS. 3–4, 351–369 http://dx.doi.org/10.1080/1536710X.2016.1220880

Marie Matérnea, Lars-Olov Lundqvistb, and Thomas Strandbergc University Health Care Research Center, Faculty of Medicine and Health, The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; bSchool of Law, Psychology, and Social Work, Faculty of Medicine and Health, University Health Care Research Center, The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; cInstitution for Law, Psychology, and Social Work, The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden

a

ABSTRACT

The aim of this article is to explore the perception of being a support person for clients with acquired brain injury undergoing vocational rehabilitation. Nine support persons, identified by clients with brain injury, were interviewed. Interviews were analyzed using qualitative content analysis, resulting in 3 themes for assisting the client: commitment, adaptation, and cooperation. Within each theme, multiple dimensions were identified, reflecting the complexity of vocational rehabilitation following acquired brain injury. Commitment built on social relations is linked to sustainability of support. The included support persons’ role was especially valuable in contexts where adaptation and cooperation were required.

KEYWORDS

Acquired brain injury; content analysis; empathy and support; inclusion; rehabilitation; return to work; support person; vocational rehabilitation

Previous research shows that support is essential for successful return to work (RTW) in people with acquired brain injury (ABI; Forslund, Roe, ArangoLasprilla, Sigurdardottir, & Andelic, 2013; Gilworth, Eyres, Carey, Bhakta, & Tennant, 2008; Matérne, Lundqvist, & Strandberg, in press; Tomberg, Toomela, Ennok, & Tikk, 2007). However, research about support persons’ perceptions of assisting clients with ABI in the vocational rehabilitation (VR) process is limited. The objective of this study is therefore to explore support persons’ perceptions of supporting clients with ABI in a successful RTW. Vocational rehabilitation denotes all efforts to help someone to return to work and remain in work despite disability (Waddell, Burton, & Kendall, 2008). In Sweden, the VR process involves many parties, such as the Swedish Social Insurance Agency, the Swedish public employment service, employers, and the health care system (SOU, Swedish Government Official Report, 2011). The investigation of claims for sickness benefits and the coordination of benefits are the responsibility of the Swedish Social Insurance Agency. CONTACT Marie Matérne, MSW, PhD Candidate [email protected] University Health Care Research Center (UFC), Faculty of Medicine and Health, The Swedish Institute for Disability Research, Örebro University, Box 1613, Örebro S-701 16, Sweden. © 2016 Taylor & Francis

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Support Persons’ Perceptions of Giving Vocational Rehabilitation Support to Clients With Acquired Brain Injury in Sweden

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The rehabilitation and VR process in Sweden is a tax-funded service. Employers have the obligation to organize the workplace and work as best they can to meet the rehabilitation needs of their employees with disabilities (Swedish Work Environment Authority, 1977). What the VR process might look like varies from individual to individual. Personal support systems like case management, as seen in the United Kingdom or Australia, for instance, do not systematically exist in Sweden (Clark-Wilson et al., 2016; Lannin, Henry, Turnbull, Elder, & Campisi, 2012). Acquired brain injury is an umbrella term that includes brain damage from cerebrovascular accidents, infections, tumors, toxins, and traumatic brain injury (Campbell, 2000). ABI can result in cognitive, physical, emotional, or behavioral impairments, leading to permanent changes in functioning, with consequences for all aspects of the person’s life, such as the person’s ability to return to work (Campbell, 2000). ABI has an annual incidence of about 100 to 300 per 100,000 people of working age in Western countries (Fortune & Wen, 1999). In Sweden, the yearly incidence of people who acquire a brain injury is approximately 45,000 to 50,000 (Kleiven, Peloso, & von Holst, 2003; Lexell, Lindstedt, Sörbo, & Tengvar, 2007). Clients with ABI who come back to work rate their life satisfaction higher compared with those still unemployed (Jacobsson, 2010; Kendall, Muenchberger, & Gee, 2006). To return to work is a major goal for many persons with ABI (Alaszewski, Alaszewski, Potter, & Penhale, 2007; Johansson & Tham, 2006). However, RTW rarely happens without extensive support. A support system built for the brain-injured person for keeping in contact with the workplace during the transition phase from sick leave back to work is invaluable (Ellingsen & Aas, 2009). It enables continuous follow-up with the person and facilitates interaction between the parties involved in the VR process, such as the person with ABI, the workplace, the rehabilitation clinic, and the social insurance agency (Ellingsen & Aas, 2009). Support from all the parties throughout the VR process is essential for the client to successfully return to work. Asked to state who is most important for their recovery and motivation, persons with brain injury have indicated that apart from society and employers, close relatives play an important role (Strandberg, 2009). The family is particularly important because clients with ABI need support for a long time after their injury (Strandberg, 2009). Consequently, one study reported that clients with support from family members in their everyday life experienced lower levels of emotional distress compared to clients receiving no family support (Stergiou-Kita, Dawson, & Rappolt, 2011). It has also been found that involving close family members in the everyday life of persons with ABI leads them to experience less emotional distress during the VR process (Hooson, Coetzer, Stew, & Moore, 2013). Furthermore, other informal support, such as from close friends, also plays an important role and studies show that those with

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Method In this study, the definition of successful RTW corresponds to the definition used in previous research (Matérne et al., in press), which is to return to previous work or to a new job at least 50% (e.g., 4 hr a day, 5 days a week) for at least 1 year, after brain injury. There is, to the best of our knowledge, no consensus in the literature on what defines successful RTW. Participants

All participants in this study were support persons for brain-injured clients participating in a previous study and all provided their support for 8 to 14 years (Matérne et al., in press). The participating clients in that study were 5 men and 5 women aged 27 to 55 years, with mild to moderate ABI, who had gone through VR with successful results. The clients were all recruited

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support from friends have a higher probability of returning to work compared to those without support from friends (Forslund et al., 2013). This informal support also lasts longer compared to professional support (Willer & Corrigan, 1994). Although family and friends are vital, other kinds of support provided by vocational services and rehabilitation staff (e.g., social workers cooperating with occupational therapists) are important for the clients’ RTW ability. For example, clinicians could explain the impact of treatment interventions and make recommendations, as clients require information about their injury so that they can participate in decisions about their own rehabilitation, sometimes together with family members (Kissinger, 2008; Knox, Douglas, & Bigby, 2013). Another essential issue is to get professional support from clinicians in dealing with psychological problems. This help is also important in the VR process (Hooson et al., 2013). Social support at work from colleagues and employers is another factor contributing to the brain-injured person’s feeling of being understood and accepted (Ellingsen & Aas, 2009). Whereas a previous study reporting clients’ experiences of successful RTW (Matérne et al., in press) contributes to qualitative research on the subject, little research has focused on support at the workplace and from other support persons. This study focuses on support persons identified by the clients in our previous study (Matérne et al., in press). No studies focusing on support persons were identified from the previous literature. To date, very little is known about the role of support persons in VR, and it follows that they are an underutilized resource in current VR models as applied by social and health professionals. The aim of this study is to explore the support persons’ perceptions of being a support for clients with ABI in the VR process.

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Table 1. Characteristics of the included support persons and the clients with acquired brain injury (ABI). Support persons (participants)

No. Sex 1

F

2

M

3 4

F F

5 6

M M

7

F

8

F

9

F

Occupation/function

Formal or informal mandate to support the client

The clients with ABI

Diagnosis

Years since the brain injury

Employment consultant/coworker Security coordinator/coworker Employer/manager Employer/manager

Informal

Stroke

9

Informal

Stroke

13

Formal Formal

Stroke Brain tumor

12 14

Salesperson/coworker Social worker at the outpatient unit for patients with ABI Occupational therapist at the outpatient unit for patients with ABI Employed in the same organization/next of kin Employer/personnel manager

Informal Formal

Stroke Stroke

8 14

Formal

Subarachnoid hemorrhage

10

Informal

Stroke

Formal

Traumatic brain injury (car accident)

9 11

Occupation postinjury Study counselor Registered nurse Masseur School assistant Controller Finance assistant Logistician, transportation Controller Information assistant

from an outpatient clinic in a Swedish county. Their main postinjury problem was cognitive impairment. The ABI clients were asked to select a person who had, in their opinion, been the most important support person in their VR process. Nine of the 10 clients identified a support person and gave permission to the researcher to contact this person. The nine support persons were contacted by letter. They all volunteered to participate in this study. Characteristics of the participants and the clients are shown in Table 1. The study was approved by the regional ethical review board in Uppsala, Sweden. Written informed consent was obtained from the participants before the interviews. Procedure

An interview guide was designed by formulating interview questions to address the aim of the research (Kvale & Brinkmann, 2009). Semistructured interviews were chosen because the researcher wanted the participants to talk freely within a structure (Kvale & Brinkmann, 2009; Richards & Morse, 2013). The interviews were performed with the intention to learn more about the support persons’ perceptions of giving support in the VR process. The interview guide consisted of four key areas, which covered (a) the support person’s background, (b) the consequences of work for the brain-injured


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Analysis

A hermeneutic approach has been used as a theory of science in this study. This scientific approach provides an interpretation and understanding of texts and aims to reach an understanding of the life-world of an individual or a group of individuals (Gadamer & Lewis, 1997). For analysis of the data, qualitative content analysis was conducted (Graneheim & Lundman, 2004). This method was chosen because it is focused on texts and is suitable for analysis of sensitive and multifactorial phenomena with a distinct research question (Elo & Kyngäs, 2008). Content analysis can capture variations in the interview texts, highlighting similarities and differences, which was considered an advantage in this study. In this study, an inductive approach was used for open-minded examinations and transparency, because there are no previous studies dealing with this phenomenon (Elo & Kyngäs, 2008). The data were structured using the qualitative software program NVivo10 (QSR International, Inc., Cambridge, MA). The analysis, described by Graneheim and Lundman (2004), consisted of seven steps. The first step started with creating meaning units from a meaningful part of the text. The second step was to condense the meaning units. In the third step, the condensed meaning units were coded with a label. Several codes with similar content were formed into subcategories in the fourth step; these were combined, in the fifth step, into categories. This fifth step was on a manifest and descriptive level. Several categories together formed the sixth step with subthemes, which was on a latent level. In the seventh, and final, step, subthemes are formed into themes, which describe the latent content. The whole analysis process was conducted by the first author and discussed with the second and third authors. In the last two steps, all authors first worked individually and then discussed the findings until consensus was

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client from the support person’s point of view, (c) working life for the client, and (d) support. The interview questions were piloted with a human resource officer before the data collection started. No modification was made to the interview guide after this interview. The participants were free to decide where the interview should take place. Eight of the interviews were conducted in the researcher’s office and one in the support person’s home. Each interview lasted 60 to 90 min. All interviews were conducted by the first author, and were audio-recorded and transcribed. The topic of the study, perception of VR, was not that complex for the participants. If unsure of a participant’s statement, the interviewer checked with the participant during the interview to clear up any misunderstandings. The material obtained from the 9 participants was rich and included statements covering 225 pages, with the participants having no problem expressing their thoughts on the subject.

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reached about the subthemes and themes. Consensus in this study was a group process in which the input from the three authors was carefully considered, based on listening to each other, to reach an agreement and make a decision on which subthemes and themes best represented the text. No triangulation to validate the findings was conducted. Results The data analysis resulted in three themes that described the support person’s perception of being a VR support to a client with ABI. The themes were commitment, adaptation, and (c) cooperation. Each theme consisted of three subthemes (see Table 2). The themes are discussed next. Commitment

The first of the three themes concerns commitment. All participants talked about the importance of commitment from different perspectives. They described their commitment to the client and to the client’s VR process and the impact this commitment had for the client’s successful RTW. The support persons’ commitment meant being a part of the VR process and being involved in the client’s working life. Table 2.

Findings divided into themes, subthemes, and categories.

Themes Commitment

Subthemes

Categories

Supporting the client’s motivation and drive The support person’s role and empathy

Motivation and drive Poor support gives no result Support from the environment Supporting strategies of support persons Stress and high standards are a barrier for successful RTW The support person’s role is to be a discussion partner, ensure continuity, and provide encouragement Skills and social skills are important personal characteristics Reintegration provides confidence Adaptation of working conditions RTW according to own ability Adaptation of working time Workplaces are more difficult to adjust to after a brain injury It is easier to adapt large workplaces on the open labor market Information and communication Economy and certificates can be cumbersome to explain Return to the same job is a success factor Cooperation is a key factor Clear organization and accountability are important

Support from the workplace Adaptation

Social and professional skills as adaptation Adaptation of the client’s working conditions Adaptability of the workplace and working environments

Cooperation

Clear responsibility for the client Return to the same workplace Coordination of the VR process

Note: RTW = return to work; VR = vocational rehabilitation.


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The support person’s role and empathy Another subtheme within this theme of commitment was that of the support person’s role. The description the participants gave of their role included “sowing the seeds” for finding new avenues and opportunities for the client in the work situation. Participants further believed that their function as a sounding board and a discussion partner was important. One of the participants described his role as follows: I’ve been an important person, and I’ve given him a sense of security and calm, and have sort of been able to confirm him. He’s been able to communicate this apprehensiveness … to me, so I’ve been a sort of security filter for him. (Interviewee 6)

An important component of their role as support person was, according to all the participants, the ability to empathize with the client’s situation. One support person had personal experience of being seriously ill herself. She felt that she understood the client better; she had a natural commitment for the task, and could easily put herself in the client’s situation with feelings of empathy. She felt that her own illness and experience of successful RTW helped her in supporting the client. But of course, if you experience a serious health event, like I’d developed breast cancer, obviously your life changes considerably. That’s what you hold on to—to friends and to your day-to-day life—in a whole new way. … You understand what it’s like when you get some extremely serious disease. (Interviewee 1)

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Supporting the client’s motivation and drive One of the three subthemes concerned support as a motivation and drive for the client. The support persons perceived that it was easier for the client to return to work if they themselves were motivated. Lack of commitment on the part of the support person was perceived to negatively affect the client’s motivation and consequently also his or her chances to return to work. The participants believed that they played an important role in keeping the client motivated and all of them considered themselves to be highly committed in their support. The support persons also thought that reasonable demands on the work tasks set by the employer and colleagues were important for the client’s motivation. To be a support in the process of setting reasonable demands, the support persons believed that they and the employer first and foremost needed information about the client’s condition with respect to the brain injury. With adequate information, it was easier for the support person, the employer, and the client’s colleagues to set reasonable demands and be committed to, and supportive in, the client’s VR process. One support person described a motivated client who also had managers that set reasonable demands on the client: “Well, partly I think it’s this particular motivation and incentive … I also think that the bosses somehow, actually adapted and made just enough demands” (Interviewee 9).

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Support from the workplace Another subtheme that emerged was the importance of support from the working environment. All the support persons emphasized the importance of support from colleagues and others involved in the VR process. The participants talked about commitment at the workplace. Seven of the participants described the important role of acting as a communicator between the client, and his or her colleagues and managers. They highlighted the support from managers as invaluable in successful RTW. One of the participants said that the manager was unsupportive and not sufficiently committed, so the client lost motivation for RTW. I mean, you’ve got to admit X recovered extremely well, but [he] is naturally dealing with the effects of this stroke as well as the first one … and lost his forward momentum. If you’re not getting any support from management either, you lose a great deal of your drive. (Interviewee 2)

In some workplaces, it was natural to help each other; several of the participants had experienced this. For instance, one support person gave an example of a workplace that she thought did not support the client enough; the employer resumed an old conflict when the client came back to work after her sick leave. This support person felt that the employer had no sense of empathy at all. It became quite turbulent at the workplace and the client had a bad start to her RTW. Another participant who worked in a logistics company said that his workplace was committed to solving problems and trying to help each other in different ways. He felt that his colleague’s brain injury was regarded at the workplace as just another problem to solve. The support person felt that his role in his colleague’s VR process was no different from his normal work as a problem solver. It was like a challenge for him and the workplace to support the client. We’re actually very used to it, because many people at work here are problem solvers. … That’s actually a large part of what we do [solve problems]. So for us it’s just another thing to tackle. (Interviewee 8)

Adaptation

The second theme was adaptation. Adaptation, according to the support persons, was about the client’s social and professional capacity to adapt, the adaptation of the client’s working conditions, and the workplace’s potential to adapt the environment that could help the client to manage working life. Social and professional skills as adaptation One aspect of adaptation of the client’s skills is the social competence several of the participants observed in the brain-injured persons. They defined the client’s social competence as the skill to communicate and interact with others,


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Adaptation of the client’s working conditions All participants gave examples of different kinds of adaptations for the client at work, ranging from adapted work tasks to completely different work. For example, one participant described a client who worked with children in a preschool. She could not handle the noise and messy environment after her brain injury. Her employer offered her a new job as an administrator for the preschool. Describing an open-minded employer who tried to adapt the work situation for the client, another support person said: Yes, it’s partly that they are extremely helpful—they want things to go well for the client and are open to change … not just during rehabilitation, but also later on the job—there’ll be certain things this person doesn’t have to do. (Interviewee 7)

Four of the participants thought that there was a big difference between public and private employers with regard to the possibilities to adapt the working situation. One participant who also was an employer in a publicsector company argued that it was much easier for public-sector companies to make adaptations, both in terms of working time and in terms of performance, compared to companies in the private sector. This employer accepted that the employee did the best she could, without any pressure at all. Another participant with the same experience argued that public companies accept more gradual change and do not have the same financial pressure as companies in the private sector: “It’s probably an organization that is not exposed to competition. … I’m not saying it’s like, ‘Here we are with our quill pens,’ but you’re not seeing new accounting software every year” (Interviewee 6). Adaptability of the workplace and working environment One support person who was the employer of a person with ABI proposed that it has become much harder to adapt the working conditions compared to a few years ago. Her experience was that previously, employers could be more tolerant with people who did not perform their duties quickly or well

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both verbally and nonverbally. These abilities helped the client in his or her RTW. Social skills helped the person with ABI to be accepted more readily in the working group and also to get help with work tasks from colleagues. Another kind of adaptation that some participants talked about as important was the client’s professional competence. Those support persons who assisted clients with extensive professional knowledge and skills facilitated the employer’s task to adapt the clients’ work tasks because the more skilled and knowledgeable the brain-injured person, the wider the work assignment area: “Involve X in the issues that I know he’s really good at, so he feels he can continue working and focusing on issues about which he is knowledgeable” (Interviewee 2).

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enough. She thought that the cyclical implication, taking into account the economic situation, of this for adaptation affected the possibilities to return to work and also became a societal problem in the end: “But it’s super strict now. It’s back to the job you had before. … So I’ve had people [employed] after X who have had other concerns and I haven’t been able to help them in the same way, it’s tough” (Interviewee 4). Several participants gave examples of how the labor market has become more demanding, saying that it has become easier for employers to dismiss staff members who cannot perform the tasks for which they were hired. This applies to both the private and the public sector. One support person who had met several persons with brain injury at her workplace described that her perception was that workplaces sometimes do not have any willingness at all to cooperate in terms of adaptation or finding new work tasks for a braininjured employee: “I’ve been at workplaces where their attitude is, if you can’t manage these tasks, we haven’t got anything [for you to do]. There’s no room for any kind of adaptation” (Interviewee 7). Another support person, who was the owner and manager of a small family business, made adaptations immediately and developed the business based on the needs that she saw the client had. She had the mandate to make decisions about all kinds of customizations, for example, relating to working time, workloads, and assignments for the client: “So, the organization we had then was amazing; it was such an inspiration for her to feel she was free to do what she wanted, so she has really grown with that” (Interviewee 3). Cooperation

The third theme was cooperation, which the participants described as an overall collective action on the organizational level to plan for a successful RTW for a client. This organizational level includes authorities who are involved in the VR process for the client. This theme also included cooperation at the workplace among the employer, colleagues, and the client. Clear responsibility for the client In the VR process, there has to be cooperation among several government agencies, employers, and the client to create a successful RTW. Talking about cooperation, 7 of the participants emphasized clarity regarding the different parties’ roles in the VR process; without clarity, there could be confusion about who does what. The participants gave examples of when the cooperation did not work because of uncertainties between the parties. For example, when there is a change in management, information about the client can get lost and the new manager might not have sufficient information about the client to make decisions about adaptations.


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With knowledge about the client’s abilities and inabilities, there is increased cooperation among the parties involved in the VR process. Knowledge about the client’s needs and disability facilitates cooperation: “I believe information is quite important … who is supposed to know? How are we going to follow it up? New people coming and going, it’s a matter of integrity and consideration for the individual” (Interviewee 9).

Partly [the fact] that he could return to his own job, and [partly] that he as a person had a good ground to stand on. … Going back to work is tough, but in some way, it’s what he has done [because] he’s familiar with the work, he’s used to the working conditions. (Interviewee 9)

Coordination of the vocational rehabilitation process In the participants’ views, those who are involved in the VR process (e.g., employers, the authorities, and outpatient unit staff such as social workers and occupational therapists) all have to coordinate directly with each other to enable the client to reach the goal of returning to work. The cooperation should start soon after the injury, and should include the professionals, as one participant argued: It’s important to be there and give early support, and that you get professional help and figure out with the [client] … what I can manage, what I will be able to manage, and how much I should be able to manage now? Support in that process! (Interviewee 2)

Discussion The aim of this study is to explore support persons’ perceptions of supporting clients with ABI in achieving a successful RTW. The analysis elicited three themes that described what the support persons perceived as important for the client to successfully return to work: commitment, adaptation, and

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Return to the same workplace Eight of the participants had experience of supporting clients returning to the same workplace as before the injury. Four of the clients also returned to the same duties they held preinjury; this signified success on the part of the clients. One of the participants described that the previous work of a client with ABI had been in economics, but that, after the injury, he experienced problems with numbers and had to change work. With cooperation among the client, the social worker (from the outpatient unit for clients with ABI), and the employer, they found work with new assignments. In this case, it was a job that the client had done previously and could still perform with modifications. Another participant described her client’s return to the previous work as follows:

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cooperation. All support persons testified their commitment to the client. They perceived their role to be vital for the client, especially where adaptation and cooperation were required. The results show that the support persons’ commitment was a factor in helping create and sustain the clients’ motivation in the VR process. Also, support and commitment from colleagues and managers at the workplace played a significant role for a successful RTW. However, we found that the ability of support persons, colleagues, and managers to give support was dependent on adequate knowledge about the client’s conditions and needs, which is consistent with findings from other studies (Gilworth et al., 2008). Lack of support from the work environment created low client motivation for RTW and also lower commitment from the support person. So it could be hypothesized that one of the key factors to successful RTW is to ensure that adequate support is combined with commitment to create highly motivated clients. This hypothesis is in line with findings by Bonneterre and colleagues that workplace support is a key factor for job retention (Bonneterre et al., 2013). Previous research shows that support through job coaches, supportive coworkers, or employers with a personal experience of disease or disability could be important for the motivation and ability of workers with ABI to sustain employment (Macaden, Chandler, Chandler, & Berry, 2010). This is consistent with the findings of this study. In our study, one participant reported that she herself had experienced a disease and the subsequent struggle to return to work. She believed that she was better able to understand the client’s situation and had become more committed in the client’s VR process because of her own personal experience. The results therefore suggest that designating a support person who himself or herself has a personal experience of work rehabilitation could be a favorable approach for supporting clients with ABI to successfully return to work. If it is not possible to find a colleague with a personal experience of work rehabilitation, a coworker could function as a mentor and give support, including support in productivity and self-esteem (Target, Wehman, Petersen, & Gorton, 1998). Previous research shows that continuity and long-term support are necessary because recovery from ABI takes a long time (van Velzen, van Bennekom, van Dormolen, Sluiter, & Frings-Dresen, 2011). In this study, the participants had given support to the brain-injured persons for 8 to 14 years. As the complexity and difficulty of work tasks change during recovery, a person with ABI needs to have someone close to discuss these issues with during the whole VR process and also for a long time afterward. Where the client can choose the support person himself or herself and build a social relationship with this person, this facilitates and sustains the work for a longer time (Matérne et al., in press). When the clients in our previous study were asked to choose the most supportive person, they all chose people in the near surroundings, persons


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at work, relatives, or professionals from the outpatient unit for ABI patients. Only three chose a person with a formal responsibility for client support. It can be concluded that an important support person is not necessarily a person with formal power to act in the rehabilitation process. Much more important is that this person should have a focus on the support, as a discussion partner; for example, helping in the decision-making process for the client (Knox et al., 2013). The interviewed support persons also gave the client confirmation, acted as facilitator for the client at work in different ways, informed colleagues of the client’s needs, and understood the client’s difficulties. All these actions from the support persons to facilitate the VR process contributed to the successful VR and a sustainable working life for the clients. Research also shows that it is easier for the client to return to the workplace if he or she is socially accepted by his or her colleagues and managers, because he or she will then receive help if needed (Shames, Treger, Ring, & Giaquinto, 2007). Social skills are, in other words, an important factor for the possibility to return to work. The support persons in this study played an important role in the development of the clients’ social skills. A brain-injured person has trust and confidence in his or her support person and together they can reflect on his or her social capabilities. A workplace often has to adapt work tasks for the client to return after brain injury. The client’s professional skills play a key role in this adaptation. Previous studies have suggested that people with white-collar jobs and higher education have better opportunities for job adaptation, contributing to an easier RTW process, compared to their blue-collar counterparts (Kassberg, Prellwitz, & Larsson Lund, 2013; Keyser-Marcus et al., 2002; Walker, Marwitz, Kreutzer, Hart, & Novack, 2006). One of the participants in this study, who herself was a manager and could make decisions about the work situation for the client, adapted the client’s work all the time and took into account the disability the client had. This is also in line with Van Velzen et al. (2011), who found the most success occurs if the decision-making process takes place near, and includes, the client. Similarly, in this study, the support persons played an important role in this adaptation process by acting as discussion partners and thus helping to find new opportunities for developing or adapting the client’s work tasks. Cooperation in the VR process is likewise important for a successful RTW. Returning to the preinjury workplace appears to be the best option for a successful RTW. This is in line with findings by Tate, Simpson, and McRae (2014), who argued that the client has already established a relationship with the employer at the preinjury workplace, which facilitates RTW. Furthermore, he or she feels supported in returning to an existing social network at the workplace. Also, returning to a known situation minimizes the need for new learning. Our findings support this. We also found that the employer of a client returning to a known situation is emotionally involved and has

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more knowledge of the client’s competence, which facilitates cooperation in the VR process. Consequently, going back to the preinjury workplace seems to reduce the client’s anxiety about the VR process and as a result gives better possibilities for employer–employee cooperation (Tate et al., 2014). The participants in this study had different kinds of assignments as support persons. Some had a formal mandate as support persons, whereas others acted in a more informal capacity. Regardless of having a formal or an informal mandate, the participants stated that their powers regarding the employer– employee cooperation were unclear. The support persons perceived that nobody is fully in charge of the collaboration, which creates a lack of clarity for all involved, not least the client. The Swedish Social Insurance Agency has a responsibility for coordination, but the assignment is in fact unclear (Ekberg, Eklund, & Hensing, 2015). Vestling, Ramel, and Iwarsson (2013) found that a personal mentor can help the client to return to work. We also found this, but emphasize that this mentor should be well aware of the consequences of the client’s brain injury and should be given mandate in the VR process. Despite the fact that the included support persons had different mandates, missions, roles, gender, age, and work, we found that their perceptions of support to the client were comparatively equal. Study reflections

This study is exploratory and describes the support persons’ perceptions of the VR support they gave persons with ABI. However, the results are limited in terms of generalizability to the population of support persons, as we only had 9 participants. The participants in this study had different types of occupations, client relationships, mandates (formal or informal), and working roles, which provided a heterogeneous group and rich material. This is an advantage in a qualitative study that aimed to study differences in the results. All the participants came from a limited geographical area in Sweden, which could give a smaller cultural difference in the group. However, in this study, the clients themselves selected the support persons who were interviewed, which adds interest from a client participation perspective. The group that the support persons in this study supported have mild to moderate ABI, which could, in part, explain the successful RTW outcomes. The situation for persons with severe ABI would be quite different; for instance, more extensive support systems would be required, particularly formal or structured VR service delivery. Therefore, it was not possible to generalize our findings to persons with severe ABI. Participants in research can change their stories from one telling to the next as a consequence of memory recall. Furthermore, new experiences cause them to see the nature of, and connection between, the events in their lives differently from one time to the next (Sandelowski, 1993). Some years had passed


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Future research

This study explores the support persons’ perceptions. One further question that arises is how other parties perceive the VR process. How can the different parties, such as employees, the social insurance agency, or rehabilitation clinics, interact with each other to achieve the best outcome in the VR process for the client? Furthermore, it is interesting to know more about the clients’ participation in their own VR, because, as we found in this study, the clients’ participation was perceived as a main factor for successful VR. Another research issue concerns the role of VR service provision in Sweden. There is no formal or consistent implementation of VR in Sweden, and the participants in this study raised the matter of lack of role clarity and leadership in the VR process. This area needs more attention to provide a better understanding of the role and contribution that VR services can or could make to the VR process. Conclusion

Support persons are important to clients with ABI for successfully returning to work. To be chosen by the client to be a support person, with or without a formal mandate, created a commitment. The support persons further perceived that they could be of help in situations that required both adaptation and cooperation. There are many complex and strategic issues that emerge for clients during the VR process that require reflection and decision making. In these situations, the support persons perceived that they were fulfilling an important role. The support person role is often

STUDIE II

by, but all the participants still had contact with the client; six continued being a support person to the client even at the time of the interviews. The aim was to study the participants’ perception, and we captured their opinions about their work as support persons. Therefore, the memory of what it was like to be a support for these participants could be kept alive and the risk of forgetting important events in the VR process was lower than if they had completely lost contact with the clients. It is important to ensure the validity of the research, which in this study was done by designing the interview questions and study method (Richards & Morse, 2013). The intent was not to verify that data were labeled and sorted in exactly the same way, but to determine whether the researchers agreed with the way those data were labeled and sorted (Woods & Catanzaro, 1988). To preserve the meanings of the quotes, a language editing company made an initial translation from Swedish to English. This was then reviewed by the authors, with some minor corrections being made to the quotes in discussion with the translator.

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an underutilized resource and could be used systematically in the VR process for clients with ABI. Acknowledgments We extend our thanks to the interviewees who participated in this study.

Funding This study was supported by grants from the University Health Care Research Center, Region Örebro County, Sweden; the Swedish Stroke Association; and the Norrbacka-Eugenia Foundation.

Notes on contributors Marie Matérne, MSW, is a social worker. She has worked in a range of areas within the field of disability. She started her career as an assistant nurse and later was a social worker in different rehabilitation clinics. She has also worked as the head of a company that provided personal assistance for people with disability and as the head of an adult habilitation center. She has also been involved in various projects and committees to give people with disabilities possibilities to enter the labor market or return to work after injury or disease. Now she is working part time as a business developer for Habiliation and assistive technology in Region Örebro County and part time as a PhD candidate in disability research, and her project is about return to work after acquired brain injury. She is a member of the Executive Committee of the International Network of Social Workers in Acquired Brain Injury. Lars-Olov Lundqvist, PhD, is Associate Professor in psychology and research leader at the University Health Care Research Center, Örebro University, Sweden, and former head of the Centre for Rehabilitation Research, Region Örebro County. He has a broad background in psychology, with specific expertise in epidemiological, psychometric, and experimental research in affective neuroscience. His work is mainly focused on emotional regulation and challenging behaviors in general and clinical populations. He is recognized for his proficiency in statistical analysis, including general linear model, confirmatory factor analysis, and item response theory. He is supervisor of five PhD students and has broad experience in evaluating others’ works as a member of the Region Örebro County Research Committee, a PhD examination board member, and expert reviewer for three scientific journals on a regular basis. He is involved in several international research collaborations and has extensive experience in leading scientific conferences. For more than 10 years he was the head of the Disability and Rehabilitation Research conference in Örebro. Thomas Strandberg, PhD, is a Senior Lecturer in caring sciences and disability research at Örebro University and the Swedish Institute for Disability Research. He worked earlier in the Social Care Department as a social worker with people with intellectual disabilities and as a high school teacher in the health care program in upper secondary school. He defended his thesis, Adults with Acquired Traumatic Brain Injury: The Changeover Process and Consequences in Everyday Life, in 2006. His research focuses on rehabilitation and returning to working life after acquired brain injury and also on disability theory. He is a member of the board of the Nordic Network on Disability Research and during recent years he has held the position as head of school at the School of Law, Psychology, and Social Work, Örebro University, Sweden.

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BRAIN INJURY https://doi.org/10.1080/02699052.2018.1517224

Change in quality of life in relation to returning to work after acquired brain injury: a population-based register study Marie Matérne

a,c

, Thomas Strandberg

b,c

, and Lars-Olov Lundqvist

a,b,c

a University Health Care Research Center, Region Örebro County, Örebro, Sweden; bSchool of Law, Psychology and Social Work, Örebro University, Örebro, Sweden; cThe Swedish Institute for Disability Research, Örebro University, Örebro, Sweden

ARTICLE HISTORY

Purpose: This study investigated changes in quality of life (QoL) in relation to return to work among patients with acquired brain injury (ABI). Method: The sample consisted of 1487 patients with ABI (63% men) aged 18–66 years (mean age 52) from the WebRehab Sweden national quality register database. Only patients who worked at least 50% at admission to hospital and were on full sick leave at discharge from hospital were included. QoL was measured by the EuroQol EQ-5D questionnaire. Results: Patients who returned to work perceived a larger improvement in QoL from discharge to followup one year after injury compared to patients who had not returned to work. This difference remained after adjustment for other factors associated with improved QoL, such as having a university education, increased Extended Glasgow Outcome Scale scores and getting one’s driving licence reinstated. Conclusion: Return to work is an important factor for change in QoL among patients with ABI, even after adjusting for other factors related to QoL. This is consistent with the hypothesis that having employment is meaningful, increases self-esteem and fosters participation in society. Thus, helping patients with ABI return to work has a positive influence on QoL.

Received 27 February 2018 Revised 13 July 2018 Accepted 24 August 2018

Introduction In Western countries, it is estimated that about 100 to 300 per 100,000 adults of working age live with an acquired brain injury (ABI) (1). In Sweden, approximately 5000 adults of working age acquire a brain injury every year, giving an incidence of about 90 per 100,000 people between 18 and 65 years old (2). Acquired brain injury is an umbrella term that includes brain damage from cerebrovascular accidents, infections, toxins, tumours and traumatic brain injury (3) and it can affect all aspects of a patient’s life (3). Physical impairment (3) as well as reduced cognitive function such as fatigue, memory and concentration problems are common, affecting the patient’s functioning in everyday life (4,5). With reduced cognitive function, it becomes harder to manage social life, living independently (6,7), getting a job or returning to work (8–14). Overall, people acquiring a brain injury experience reduced mental health (10,15) and quality of life (QoL) (16,17). Studies show that patients’ perceived QoL is strongly related to the severity of the brain injury and the degree of injury (18–21), but even a mild ABI can negatively affect a patient’s perceived QoL to a great extent (22). Factors such as preserved cognitive ability (12), physical functioning (8), motor independence (9), ability to walk (12) and absence of depression (8,9,11) have an impact on QoL. Furthermore, higher QoL has been found among patients with ABI who avoided comparing life with how it was before the injury, did not rate health status as very important, placed increased value

KEYWORDS

Stroke; traumatic brain injury; vocational rehabilitation; rehabilitation; life satisfaction

on the family (23), had an optimistic life orientation, good social support and task-oriented coping styles (7). One of the most important factors for improving QoL is being able to return to work (8–13). Studies show that people who had returned to work rated their QoL higher than those who had not returned to work (8,9,11,12). These studies measured QoL 1–5 years after ABI and found associations between a healthy and productive lifestyle and QoL (8,9,11). However, previous research has seldom measured the influences of RTW on QoL using change scores, despite the fact that rehabilitation is a process over time (24), thus change is the ultimate aim of rehabilitation. Usually, studies have a cross-sectional design and correlate QoL with other variables at a certain point in time. Thus, measuring change scores can reveal factors important for QoL changes. Since brain injury rehabilitation is about changing the condition of the patient, studying the relationship between factors over time should be of central importance. To the best of our knowledge there are no such studies exploring the change in QoL from hospital discharge to follow-up (e.g. one year later) for patients with ABI and what factors could either hinder or facilitate QoL change. Therefore, the aim of this study was to investigate the change in QoL in relation to return to work among patients with ABI.

Method In Sweden, national quality registers with detailed clinical data are well established (25). These registers provide an important

CONTACT Marie Matérne [email protected] University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Box 1613, Örebro, 701 16, Sweden. Color versions of one or more of the figures in the article can be found online at www.tandfonline.com/ibij. © 2018 The Author(s). Taylor & Francis Group, LLC This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.

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ABSTRACT

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source for population-based research. One such register, the WebRehab Sweden, is directed at brain injury rehabilitation (26). The register was established in 1997 and includes all 21 county councils in Sweden that have at least one brain injury rehabilitation unit. The register covers about 75% of the existing rehabilitation clinics in Sweden. It has a steering group that has produced a manual for the registrations, makes a yearly report about the data and discusses issues about the instruments. Each rehabilitation unit that participates in the register also has a local coordinator (26). This helps to increase the reliability for the data in this study. Patients are assessed at three time points: (I) at admission to the hospital, (II) at discharge from the hospital and (III) at follow-up one year after injury (26). Importantly for the present study, the register measures, among other variables, return to work and QoL. Thus, WebRehab Sweden is well suited to exploring the relationship between returning to work, and change in QoL among people with ABI. Ethical approval was given by the Regional Ethical Review Board in Uppsala, Sweden (ref. 2016/055). After application, the responsible administrator for WebRehab Sweden agreed to extraction of data and a statistician from the register assembled the data files and sent them to the researchers. Patient inclusion in the study The study comprises patients registered in WebRehab Sweden between 1 January 2007 and 15 January 2016. Based on the research question, the following inclusion criteria were used in the study: 1) having an acquired brain injury (i.e. stroke, subarachnoid haemorrhage, traumatic brain injury, postinfectious or postinflammatory brain injury, anoxic brain injury or other brain injury); 2) having only one registered injury and hospitalisation period; 3) being of working age (18–66 years); 4) working 50% or more at admission (employed or selfemployed); 5) not working at all at discharge (i.e. on full sick leave) and 6) having QoL data registered both at discharge and at follow-up. Based on these inclusion criteria there were 1487 patients eligible for inclusion in the study, as shown in the flow diagram in Figure 1. Measures The EuroQol five dimensions questionnaire (EQ-5D) (27) was used to measure QoL (28). EQ-5D is a patient-reported outcome measure. It is a standardised instrument measuring status in five dimensions (mobility, self-care, usual activities, pain/discomfort and anxiety/depression). Each dimension has three levels of severity (16,27). These five dimensions are converted into a preference-based index value which can vary between −0.594 and + 1.000 (29). The value 1 corresponds to complete health and 0 corresponds to being dead. Notably, an index value below 0 is fully possible, because the respondents compare themselves with a population-based profile and some patients may rate their QoL as worse than being dead. The EQ-5D questionnaire also includes a visual analogue scale, EQ VAS (27), which is a rating scale from 0 (worst imaginable health) to 100 (best imaginable health) (30). Respondents mark a point along a 100 mm line to

indicate their estimated overall health at that moment. The EQ-5D questionnaire has been shown to be a valid measure of QoL after stroke (31) and the EQ-5D index has been validated against populations in several countries. The Extended Glasgow Outcome Scale (GOSE) (32) is one of the most frequently used instruments to assess outcome after head injury; it is a global scale for functional outcome and describes overall function relative to before the injury (33,34). The scale is in 8 categories ranging from (I) dead, (II) vegetative state, (III) lower severe disability, (IV) upper severe disability, (V) lower moderate disability, (VI) upper moderate disability, (VII) lower good recovery and (VIII) upper good recovery. Prior to analysis, GOSE was recoded into three categories on the basis of patients’ change in GOSE from discharge to follow-up: a decrease in GOSE, no change in GOSE and an increase in GOSE. The Functional Independence Measure (FIM) involves 18 activities, grouped into six functional areas: (I) self-care, (II) sphincter control, (III) mobility, (IV) locomotion, (V) communication and (VI) social cognition (35,36). FIM is an outcome measure rated from patient observation, often by consensus opinion in a multidisciplinary team (35). The FIM score for each functional area ranges from 1 (Total assistance), the lowest possible score, to 7 (Complete independence), the best possible score. In the present study, the levels 1–7 were rescored into three categories: total assistance, some help needed and no help needed. Motor function can be measured by combining areas I to IV (13 activities), with a score from 13–91 points, and cognitive function by combining areas V and VI (5 activities), with a score from 5–35 points. It was specifically designed to show how much help the patient needs and his or her ability to function independently, and it can measure changes among patients with different disorders over time. FIM was not measured at follow-up in WebRehab Sweden because the whole hospital team did not meet the patient at follow-up. Working at follow-up was defined as being employed or self-employed 50% or more. This criterion for working has been used in previous studies (13,14). Prior to analysis, some variables in the WebRehab Sweden register that were a mix of two concepts were rescored into new variables to ease the analysis, as outlined below; in other cases, categories within a variable were combined. Diagnosis The Diagnosis variable has seven categories and was rescored into three categories: stroke (stroke and subarachnoid haemorrhage), traumatic brain injury (traumatic brain injury) and other brain injuries (postinfectious or postinflammatory brain injury, anoxic brain injury and other brain injuries). Length of stay in hospital Has a range from admission to discharge between 0 and 357 days and was divided into following categories; short (0–24), moderate (25–68) and long (69–357). Marital status and having children at home In the register, the Household variable has seven categories. Since this variable combined being married with having children, it was rescored into two new variables: Being single (Yes/No) and Having children at home (Yes/No), treating the ‘other’ and ‘don’t know’ alternatives as missing data. The being single

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3

1) Patients with acquired brain injury Assessed for eligibility (n=15 992) Patients with several hospitalization episodes Excluded (n=2505) 2) Only one registration and hospitalization period (n=13 487) Patients younger than 18 or older than 66 years Excluded (n=2145)

4) Working 50% or more at admission (employed or self-employed) (n=5056)

Patients working less than 50%, unemployed, on parental leave or studying at admission Excluded (n=6286)

Patients working at discharge Excluded (n=1002)

5) Not working at all at discharge (i.e. on full sick leave) (n=4054) Patients lacking data on work status at follow up and QoL data at both discharge and follow-up (n=2567) 6) Having work status data registered at follow up and QoL at both discharge and follow-up (n=1487)

Figure 1. Flow diagram of patient inclusion in the study. (Abbreviations: QoL, quality of life; EQ VAS, EuroQol five-dimension questionnaire visual analog scale; EQ-5D, EuroQol five-dimension questionnaire.).

variable and having children at home variables were recoded into four categories, respectively, based on the change from discharge to follow-up. Accommodation and personal support The independent living variable consisted of four categories that mixed type of accommodation (independent or special) and personal support needs (with support or no support). This variable was rescored into a Personal support variable, disregarding type of accommodation and taking into account only whether the person was living with support or no support. The category no support was applied to those living independently without any help in their everyday life despite their brain injury. The accommodation and the personal support variables were recoded into four categories, respectively, based on the change from discharge to follow-up.

Driver’s license Having a driver’s license was scored as Yes or No. Driver’s license was rescored into four recoded categories based on the change from discharge to follow-up.

Statistical analysis All analysis was conducted using IBM SPSS Statistics version 22.0 (IBM Corp., Armonk, NY, USA). Before the analysis, all categorical and ordinal variables were dummy coded (0/1). Since the aim of this study was to investigate the QoL change in connection with returning to work and other relevant factors, change scores (from discharge to follow-up) were computed for all dependent and independent variables except age, gender, diagnosis, country of birth, education, aphasia/

STUDIE III

3) Of working age (18–66 years) at discharge and follow-up (n=11 342)

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dysphasia, GOSE and FIM. Length of hospital stay was measured as days between admission and discharge. To investigate influences of return to work and other variables on QoL, we first performed univariate linear regression analysis with the EQ VAS and EQ-5D index variable regressed on each of the independent variables. Secondly, to adjust for influences of concomitant variables we performed multiple regression analyses with EQ VAS and EQ-5D index on return to work and each of the other independent variables found to be significant in the univariate regression analyses. Because of missing data, it was not possible to adjust for influences of more than one concomitant variable at a time. Therefore only one independent variable could be adjusted for at the time in the multiple regression analysis (37). A p < 0.05 was regarded as statistically significant (37).

Results Characteristics of the study sample are shown in Table 1. About 60 % of the patients were men and the mean age was 52 years, slightly skewed towards somewhat older patients. There was no significant difference in age between men and women. Most of the patients were born in Sweden (90%) and spoke Swedish (97%). The majority had finished upper secondary school or higher education (89%). More women (42%) than men (32%) had completed university studies (χ2 = 9.91, p = 0.002). Most of the patients had a diagnosis of stroke approximately evenly distributed among women (77%) and men (75%). However, a higher proportion of men (17%) than women (10%) were diagnosed with traumatic brain injury (χ2 = 13.39, p < 0.001), and more women (13%) than men (8%) were diagnosed with other brain injuries (χ2 = 9.03, p = 0.003). The patients’ hospital stay ranged from 0 to 357 days, with a mean of 51.20 days and a standard deviation (SD) of 40.11. Functional outcome, measured by GOSE, showed that, at discharge, a more than half of the registered patients (67%) had a moderate disability (> 5 on a 1–8 scale) (32). At discharge, they had a mean FIM motor function score of 80.41 (SD 14.94) on a scale of 13–91. Their mean FIM cognitive function score at discharge was 30.02 (SD 5.30) on a scale of 5–35. The univariate linear regression analyses were performed on all variables, and the results are given in Table 2. As hypothesised, patients returning to work (n = 570) showed a greater improvement in QoL (EQ VAS and EQ-5D index) from discharge to follow-up compared to those who did not return to work (n = 917). Similarly, the analyses showed that an increased GOSE score from discharge to follow-up was related to increased QoL scores (EQ-5D index). Moreover, the analyses showed that patients with a university degree showed a greater improvement in QoL (EQ VAS) than patients who had only completed compulsory school (9 years). The analysis of the influence of change in possession of a driving licence on QoL showed that, compared to those who did not have licence at discharge nor at follow-up, patients whose licence was suspended at discharge and reinstated at follow-up reported improved QoL (EQ VAS and EQ-5D index), whereas those patients who had a driving licence at discharge but later had to surrender it reported decreased QoL (EQ VAS and EQ-5D index).

None of the demographic variables (age, gender, country of birth, marital status or having children in the household) or sickness- or disability-related variables (type of diagnosis, length of stay in hospital and aphasia) showed any significant influence on QoL change. Finally, neither FIM motor function or cognitive function showed any significant association with QoL change. Multiple regression analysis Finally, since there were many variables significantly related to QoL in addition to return to work, multiple regression analyses were performed to investigate the relationship between return to work and change in QoL when influences from the other variables were taken into account. However, because of missing data in some of the variables, only one independent variable at time could be adjusted for. The results from the multiple regression analyses showed no difference in regard to the relationship between return to work and change in QoL (EQ VAS and the EQ-5D index), as found in the univariate analysis.

Discussion The aim of the present study was to investigate the change in QoL in relation to return to work among patients with ABI, using data from the WebRehab Sweden quality register. As hypothesised, the present study showed that returning to work was one of the most important factors related to QoL change in people with ABI, even when adjusting for the influence of other variables. In addition to return to work, this study showed that education level, GOSE score and possession of a driving licence were related to a significant change in patients’ QoL. As shown in Figure 2 (EQ VAS) and Figure 3 (EQ-5D index), patients’ QoL improved from admission to discharge, but only patients who returned to work showed a further improvement in QoL at the one-year follow-up. Given the effect size, the variable that had the most impact on QoL was functional ability measured by GOSE, which is in keeping with findings from other studies (20). This result is consistent with a study that asked patients who had sustained an ABI within the past four years to rate their disability in Disability Rating Scale. Those patients who rated their disability as low found community integration easier and also rated their QoL higher than those who rated their disability as high (38). Patients who had a university degree showed an improved QoL from discharge to follow-up. To the best of our knowledge, no other studies with patients with ABI have investigated the relationship between education level and QoL. In addition, a study of 11,175 individuals from South Korea examined a combination of education level and perceived social class on self-rated health and life satisfaction (39). The study found that a combination of education level and perceived social class was associated with life satisfaction and self-rated health. Thus, it can be hypothesised that also among patients with ABI, a higher educational level is related to better financial resources and lager social network which may impact QoL. Further research on the relationship between education level and QoL among patients with ABI is warranted.

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Table 1. Characteristics, mean and standard deviation (SD) between EQ VAS and EQ-5D Index at discharge and follow-up. EQ VAS Variable

N (%) 1487 917 (62%) 570 (38%) 1487 78 (5%) 135 (9%) 312 (21%) 648 (44%) 314 (21%) 1487 924 (62%) 563 (38%) 915 824 (90%) 25 (3%) 31 (3%) 35 (4%) 868 94 (11%) 466 (54%) 308 (35%) 1487 1127 (76%) 214 (14%) 146 (10%) 1485 379 (25%) 738 (50%) 368 (25%) 957 766 (80%) 191 (20%) 1218 41 (3%) 266 (23%) 911 (74%) 1218 20 (2%) 394 (32%) 804 (66%) 1030 – – 48 (5%) 119 (11%) 171 (17%) 467 (45%) 209 (20%) 16 (2%) 1394 398 (28%) 60 (5%) 59 (4%) 877 (63%) 1394 898 (64%) 69 (5%) 70 (5%) 357 (26%) 179 160 (11%) 9 (1%) 8 (1%) 2 (0.1%) 1276 585 (46%) 590 (46%) 19 (1%) 82 (7%)

Follow-up Mean (SD)

Discharge Mean (SD)

Follow-up Mean (SD)

62.79 (20.20) 72.51 (18.26)

62.30 (20.65) 77.55 (17.31)

0.58 (0.30) 0.73 (0.25)

0.58 (0.32) 0.78 (0.25)

72.59 65.27 67.08 65.82 66.38

74.80 69.12 69.81 67.15 67.03

0.73 0.68 0.64 0.62 0.64

0.70 0.72 0.67 0.63 0.65

(18.44) (20.06) (20.95) (19.75) (19.93)

(18.45) (19.78) (19.93) (21.22) (21.40)

(0.26) (0.24) (0.30) (0.30) (0.31)

(0.28) (0.26) (0.32) (0.32) (0.32)

67.51 (19.62) 64.88 (20.63)

68.92 (20.93) 67.19 (20.54)

0.65 (0.29) 0.62 (0.30)

0.66 (0.32) 0.64 (0.30)

68.13 68.79 63.14 57.29

69.90 65.92 65.47 64.52

0.66 0.67 0.56 0.53

0.68 0.66 0.56 0.53

(18.55) (20.74) (21.91) (20.73)

(19.86) (20.48) (21.29) (21.84)

(0.27) (0.25) (0.30) (0.35)

(0.30) (0.25) (0.28) (0.42)

66.49 (17.27) 69.35 (18.39) 65.16 (20.04)

65.51 (19.97) 68.93 (20.67) 71.53 (19.09)

0.60 (0.30) 0.66 (0.27) 0.65 (0.28)

0.61 (0.31) 0.67 (0.30) 0.70 (0.31)

66.04 (19.96) 68.92 (20.51) 66.52 (19.84)

67.65 (20.91) 71.69 (19.84) 67.97 (20.88)

0.63 (0.29) 0.66 (0.31) 0.64 (0.29)

0.65 (0.31) 0.67 (0.31) 0.68 (0.32)

72.97 (17.07) 66.55 (19.34) 59.85 (22.02)

75.40 (18.04) 68.72 (20.13) 59.76 (21.86)

0.75 (0.22) 0.65 (0.28) 0.51 (0.33)

0.76 (0.23) 0.67 (0.30) 0.51 (0.36)

65.88 (20.67) 63.34 (19.98)

67.63 (21.01) 65.86 (21.80)

0.63 (0.30) 0.63 (0.27)

0.64 (0.33) 0.62 (0.32)

49.66 (17.88) 57.70 (20.75) 68.88 (19.26)

46.63 (24.11) 57.96 (22.69) 71.18 (18.86)

0.07 (0.32) 0.40 (0.29) 0.72 (0.23)

0.09 (0.38) 0.44 (0.35) 0.73 (0.25)

59.00 (19.32) 62.61 (21.37) 67.52 (19.57)

60.14 (30.71) 62.35 (22.68) 70.25 (19.33)

0.28 (0.43) 0.53 (0.35) 0.68 (0.25)

0.40 (0.41) 0.52 (0.38) 0.71 (0.27)

– – 52.73 (24.03) 59.57 (22.53) 63.82 (21.97) 68.05 (18.87) 70.80 (18.73) 73.19 (22.12)

– – 52.74 (24.04) 60.40 (21.90) 66.17 (20.93) 69.98 (19.71) 74.74 (19.53) 78.21 (9.53)

– – 0.22 (0.37) 0.47 (0.34) 0.63 (0.30) 0.69 (0.24) 0.75 (0.24) 0.75 (0.19)

– – 0.26 (0.40) 0.48 (0.36) 0.64 (0.32) 0.71 (0.26) 0.76 (0.24) 0.77 (0.17)

65.54 70.00 69.89 66.28

(21.00) (18.84) (18.08) (19.61)

67.28 72.63 67.28 68.53

(21.61) (20.07) (23.75) (20.08)

0.64 0.68 0.66 0.64

(0.27) (0.28) (0.29) (0.30)

0.67 0.69 0.64 0.65

(0.29) (0.30) (0.33) (0.31)

65.73 66.01 65.92 68.17

(20.09) (21.73) (20.42) (19.04)

67.40 68.01 67.04 70.91

(21.19) (22.21) (21.04) (18.85)

0.63 0.66 0.66 0.65

(0.29) (0.30) (0.30) (0.27)

0.65 0.68 0.68 0.68

(0.31) (0.32) (0.28) (0.31)

70.93 (18.02) 43.13 (18.70) 74.25 (6.48) 57.00 (0.00)

73.13 18.24 53.33 21.79 70.50 20.68 52.50 10.61

0.72 (0.24) 0.42 (0.29) 0.67 (0.23) 0.49 (0.28)

0.74 (0.23) 0.57 (0.23) 0.62 (0.34) 0.49 (0.28)

62.99 70.91 63.63 69.63

62.82 74.88 50.26 72.06

0.57 0.72 0.68 0.73

0.56 0.77 0.48 0.74

(20.93) (17.76) (23.83) (18.83)

(Abbreviations: EQ-5D, EuroQol five-dimension questionnaire; EQ VAS, EQ-5D visual analog scale.)

(21.91) (17.09) (24.63) (20.61)

(0.32) (0.24) (0.24) (0.24)

(0.35) (0.23) (0.39) (0.23)

STUDIE III

Returned to work No Yes Age (at admission) 18–30 31–40 41–50 51–60 61–66 Gender Men Women Country of birth Sweden Nordic countries (except Sweden) European countries (except Nordic) Countries outside Europe Education level (years in education) Compulsory school (9) Upper secondary school (≥12) University Diagnosis Stroke (including SAH) Traumatic brain injury Other kind of brain injury Length of hospital stay Short (0–24) Moderate (25–68) Long (69–365) Aphasia/dysphasia (at discharge) No Yes FIM (at discharge) Motor Total assistance 1–2.99 Some help needed 3–5.99 No help needed 6–7 Cognition Total assistance 1–2.99 Some help needed 3–5.99 No help needed 6–7 GOSE (at discharge) Very severe disability 1 Very severe disability 2 Severe disability 3 Severe disability 4 Moderate disability 5 Moderate disability 6 Good recovery 7 Good recovery 8 Change marital status Single–Single Single–Married/Partner Married/Partner–Single Married/Partner–Married/Partner Change children living in household No children–No children No children–Children Children–No children Children–Children Change personal support No support–No Support No support–Support Support–No support Support–Support Change driving licence (DL) No DL–No DL No DL–DL DL–No DL DL–DL

EQ-5D index

Discharge Mean (SD)

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Table 2. Mean and SD in EQ VAS and EQ-5D index change (change between discharge and follow-up). Univariate regression coefficients B;β in QoL change (change between discharge and follow-up) in EQ VAS and EQ-5D index. EQ VAS change (discharge to follow-up) (n = 1360) Variable Returned to work No Yes Age (at admission) 18–30 31–40 41–50 51–60 61–66 Gender Men Women Country of birth Sweden Nordic country European country Non-European country Education Compulsory school (9) Upper secondary school (≥12) University Diagnosis Stroke (including SAH) Traumatic brain injury Other kind of brain injury Length of hospital stay Short (0–24) Moderate (25–68) Long (68–357) Aphasia/dysphasia (at discharge) No Yes FIM (at discharge) Motor (13–91) Total assistance (1.00–2.99) Some help needed (3.00–5.99) No help needed (6.00–7.00) Cognition (5–35) Total assistance (1.00–2.99) Some help needed (3.00–5.99) No help needed (6.00–7.00) Change in GOSE No Change in GOSE Decreased GOSE Increased GOSE Change in marital status Single–Single Single–Married/Partner Married/Partner–Single Married/Partner–Married/Partner Change in children living in household No children–No children No children–Children Children–No children Children–Children Change in personal support No support–No support No support–Support Support–No support Support–Support Change in driving licence (DL) No DL–No DL No DL–DL DL–No DL DL–DL

Mean (SD)

Mean (SD)

B; β

−0.003 (0.31) 0.05 (0.26)

REF 0.05; 0.09***

REF 1.23; 0.02 0.10; 0.002 –1.37; −0.03 –1.93; 0.04

−0.03 (0.25) 0.03 (0.26) 0.03 (0.29) 0.02 (0.29) 0.003 (0.30)

REF 0.07; 0.07 0.06; 0.09 0.05; 0.09 0.04; 0.05

REF 0.70; 0.02

0.01 (0.29) 0.02 (0.29)

(19.87) (18.76) (23.88) (25.85)

REF −5.28; −0.04 0.96; 0.01 4.93; 0.05

0.03 (0.28) −0.01 (0.20) 0.004 (0.30) 0.001 (0.31)

−0.69 (18.99) −0.42 (20.00) 6.37 (20.22)

REF 0.27; 0.01 7.06; 0.17**

0.01 (0.32) 0.01 (0.28) 0.05 (0.27)

1.21 (21.81) 2.63 (23.18) 2.15 (20.52)

REF 1.41; 0.02 0.94; 0.01

0.02 (0.28) 0.01 (0.33) 0.04 (0.28)

REF -0.01; −0.01 0.02; 0.02

2.19 (19.35) 1.74 (22.31) 0.27 (23.52)

REF −0.45; −0.01 –1.92; −0.04

0.01 (0.26) 0.02 (0.30) 0.004 (0.30)

REF 0.01; 0.02 –0.01; −0.02

1.53 (22.08) 1.27 (26.15)

REF 1.22; −0.05

−0.67 (22.58) 4.93 (20.30) 2.37 3.61 2.48 1.01 0.45

(18.48) (22.94) (22.78) (21.67) (21.76)

1.25 (21.49) 1.94 (22.53) 1.82 -3.46 2.79 6.75

B; β

EQ-5D index change (discharge to follow-up) (n = 1486)

REF 5.60; 0.13***

REF 0,01; 0.02 REF −0.03; −0.02 –0.02; −0.02 –0.03; −0.02 REF 0.002; 0.004 0.04; 0.07

0.01 (0.29) −0.01 (0.32)

REF 0.01; 0.03

−5.00 (22.08) 0.02 (25.50) 2.19 (21.27)

REF 5.02; 0.09 7.19; 0.14

0.02 (0.43) 0.04 (0.35) 0.01 (0.27)

REF 0.02; 0.03 –0.01; −0.02

2.64 (29.17) −1.14 (23.64) 2.74 (21.46)

REF −3.78; −0.08 0.11; 0.002

0.12 (0.41) −0.01 (0.32) 0.03 (0.28)

REF −0.13; −0.21 –0.09; −0.14

1.41 (23.60) −1.48 (24.22) 5.09 (22.49)

REF −2.89; −0.04 3.68; 0.08

0.005 (0.29) −0.15 (0.31) 0.07 (0.28)

REF −0.16; −0.18*** 0.07; 0.11*

1.77 2.81 −2.84 1.88

(22.96) (23.89) (25.14) (21.07)

REF 1.04; 0.01 –4.61; −0.04 0.11; 0.002

0.03 0.01 −0.02 0.02

(0.29) (0.35) (0.29) (0.29)

REF −0.02; −0.02 –0.05; −0.04 –0.01; −0.02

1.29 2.08 1.55 2.62

(22.17) (21.24) (27.57) (20.21)

REF 0.78; 0.01 0.25; 0.003 1.33; 0.03

0.02 0.02 0.02 0.03

(0.29) (0.25) (0.32) (0.28)

REF 0.01; 0.01 0.01; 0.01 0.01; 0.02

1.92 9.38 −3.75 3.00

(16.77) (17.82) (23.21) (0.00)

REF 7.45; 0.09 –5.67; −0.071 0.08; 0.01

0.02 −0.15 −0.04 0.00

(0.24) (0.27) (0.33) (0.00)

REF 0.13; 0.12 –0.06; −0.05 –0.02; −0.01

−0.39 3.56 −13.37 1.85

(23.80) (20.01) (19.37) (17.64)

REF 3.95; 0.09** −12.98; −0.08* 2.24; 0.03

−0.01 0.05 −0.20 0.02

(0.31) (0.26) (0.31) (0.23)

REF 0.06; 0.11*** −0.19; −0.08** 0.03; 0.02

* p < 0.05, ** p < 0.01, and *** p < 0.001. (Abbreviations: EQ-5D, EuroQol five-dimension questionnaire; EQ VAS, EQ-5D visual analog scale; N/A = not applicable.)

Patients who had surrendered their driving licence at the time of discharge but had it reinstated at follow-up reported improved QoL. This is consistent with a US study showing that driving a car is associated with independent living and

community integration among people who had suffered a traumatic brain injury (40). An interview study about relevant factors for a productive lifestyle after ABI found that driving was one of the main goals for regaining an independent life

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7

Figure 3. Boxplot with median and quartiles for EQ-5D index at admission, discharge and follow-up for patients who had returned to work (RTW) and who had not returned to work (not-RTW) at follow-up. (Abbreviations: EQ-5D, EuroQol five-dimension questionnaire.).

and also a contributor for empowerment (41). A driving licence is equally important for community integration and participation. A number of variables hypothesised to be associated with QoL, such as age and gender, showed no statistical significance in the analyses. Previous studies in Sweden on the general population found that QoL, measured by SF-36, decreased with age, particularly for the physical functioning aspect of QoL (42). One reason for this discrepancy could be the use of different scales, SF-36 and EQ-5D. Perhaps more plausible, however, is that sustaining an ABI profoundly affects a person’s life and that any influence of age becomes minor in comparison. In another study on patients with transient ischemic attack, which has symptoms similar to stroke, women had lower QoL than men in all

areas that were measured with the Nottingham Health Profile (work, housekeeping, family, sex, leisure time and vacation) except social life (43). Since we measured change in QoL but they measured QoL at a single time point, six to eight weeks after the injury, the results are not fully comparable. Moreover, we found no association between QoL and being born outside Sweden, being married or in a partnership, or living with children. In particular, the lack of an association between being married or in a partnership and QoL was surprising, since people with traumatic brain injury who are married or living with a partner report greater QoL than those living alone (44,45). One reason for this difference between studies could be related to cultural variations, the other studies being made in Brazil and USA (44,45).

STUDIE III

Figure 2. Boxplot with median and quartiles for EQ-VAS at admission, discharge and follow-up for patients who had returned to work (RTW) and who had not returned to work (not-RTW) at follow-up. (Abbreviations: EQ VAS, EuroQol five-dimension questionnaire visual analog scale.).

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M. MATÉRNE ET AL.

Finally, injury-related variables, such as type of diagnosis, length of stay in hospital, FIM and presence of aphasia, did not show any significant association with change in QoL. Having aphasia did not change QoL in the present study, which is not in line with previous research which found that stroke patients who had aphasia after one year reported poorer QoL (46). The EQ VAS reflects a person’s subjective judgement of overall QoL and the EQ-5D index reflects the subjective judgement of capabilities compared to a preference-based health profile (27). Thus, these two measures in EQ-5D reflect somewhat different aspects of the patient’s QoL. In the present study, however, the results from the two measures were similar in magnitude and in the direction of the relationships, which adds to the validity of the results.

Study limitations Although the WebRehab Sweden material is large and well suited to testing hypotheses such as those in the present study, it has its limitations. The proportion of missing data in some of the variables was problematic, although this is common in quality registers where registration of some variables is optional. As a consequence, in this study it was not possible to adjust for more than one confounding variable at a time in the multiple regression analysis and at the same time retain a reasonable sample size and reliable results. Thus, large sample size studies to explore what factors that increase QoL after ABI are warranted, and our method with linear regression first and then multiple regression could overcome this problem.

Conclusion The present study showed that returning to work and improved functioning (on GOSE) were the most influential factors for increasing QoL in people living with ABI. In addition, education level, and getting a suspended driving licence reinstated also influenced QoL, but to a lesser degree. From a clinical perspective, rehabilitation interventions directed at improving QoL for patients with ABI should focus on the abilities that are necessary for the patient to be able to return to work. We suggest that future research on brain injury rehabilitation should focus on longitudinal studies and QoL changes, which could help us understand what can predict a sustainable QoL and working life.

Acknowledgments We wish to thank WebRehab Sweden for the provision of data.

Declaration of interest The authors report no conflict of interest. This study was supported by grants from the University Health Care Research Centre, Region Örebro County, Sweden.

ORCID Marie Matérne http://orcid.org/0000-0002-7048-1925 http://orcid.org/0000-0002-4578-0501 Thomas Strandberg http://orcid.org/0000-0002-6703-7575 Lars-Olov Lundqvist

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39.

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42. 43. 44.

45. 46.

and update on advancing the use of the Glasgow Outcome Scale. J Neurotrauma. 1998;15(8):587–97. doi:10.1089/neu.1998.15.587. Keith RA, Granger CV, Hamilton BB, Sherwin FS. The functional independence measure: a new tool for rehabilitation. Adv Clin Rehabil. 1987;1:6. McDowell I, Newell C. Measuring Health - A Guide to Rating Scales and Questionnaires. New York: Oxford University Press; 1996. Bland M. An introduction to medical statistics. 4th ed. Oxford: Oxford University Press; 2015. Gerber GJ, Gargaro J, McMackin S. Community integration and health-related quality-of-life following acquired brain injury for persons living at home. Brain Inj. 2016;30(13–14):1552–60. doi:10.1080/02699052.2016.1199896. Jae-Hyun K, Ki-Bong Y, Eun-Cheol P, Sang Gyu L, Tae Hyun K, Kim J-H, Yoo K-B, Park E-C, Lee SG, Kim TH. Combined effects of education level and perceived social class on self-rated health and life satisfaction: results of Korean labor and income panel study wave 8-wave 15. Health Qual Life Outcomes. 2015;12:1–10. Rapport LJ, Bryer RC, Hanks RA. Driving and community integration after traumatic brain injury. Arch Phys Med Rehabil. 2008;89(5):922–30. doi:10.1016/j.apmr.2008.01.009. Fraas MR, Calvert M. The use of narratives to identify characteristics leading to a productive life following acquired brain injury. Am J Speech Lang Pathol. 2009;18(4):315–28. doi:10.1044/10580360(2009/08-0008). Sullivan M, Karlsson J. The Swedish SF-36 health survey III. Evaluation of criterion-based validity: results from normative population. J Clin Epidemiol. 1998;51(11):1105–13. Franzén-Dahlin Å, Laska A. Gender differences in quality of life after stroke and TIA: a cross-sectional survey of out-patients. J Clin Nurs. 2012;21(15/16):2386–91. doi:10.1111/j.1365-2702.2011.04064.x. de Cássia Almeida Vieira R, Hora EC, de Oliveira DV, de Oliveira Ribeiro MC, de Sousa RMC. Quality of life of victims of traumatic brain injury six months after the trauma. Rev Lat Am Enfermagem. 2013;21(4):868–75. doi:10.1590/S0104-11692013000400006. Steadman-Pare D, Colantonio A, Ratcliff G, Chase S, Vernich L. Factors associated with perceived quality of life many years after traumatic brain injury. J Head Trauma Rehabil. 2001;16(4):330–42. Hilari K, Wiggins RD, Roy P, Byng S, Smith SC. Predictors of healthrelated quality of life (HRQL) in people with chronic aphasia. Aphasiology. 2010;17(4):365–81. doi:10.1080/02687030244000725.

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21. Williams G, Willmott C. Higher levels of mobility are associated with greater societal participation and better quality-of-life. Brain Inj. 2012;26(9):1065–71. doi:10.3109/02699052.2012.667586. 22. De Almeida Lima DP, Filho CS, De Campos Vieira Abib S, Poli De Figueiredo LF. Quality of life and neuropsychological changes in mild head trauma: late analysis and correlation with S100B protein and cranial CT scan performed at hospital admission. Injury. 2008;39(5):604–11. doi:10.1016/j.injury.2007.11.008. 23. Gould KR, Ponsford JL. A longitudinal examination of positive changes in quality-of-life after traumatic brain injury. Brain Inj. 2015;29(3):283–90. doi:10.3109/02699052.2014.974671. 24. Socialstyrelsen. Termbanken. Stockholm: Rehabilitering [Rehabilitation]; 2007. [accessed 2018 Feb 13]. http://termbank. socialstyrelsen.se/. 25. Emilsson L, Lindahl B, Köster M, Lambe M, Ludvigsson JF. Review of 103 Swedish Healthcare Quality Registries. J Intern Med. 2015;277(1):94–136. doi:10.1111/joim.12303. 26. WebRehab Sweden. 2018 [accessed 2018 Feb 13]. http://www.ucr. uu.se/webrehab/. 27. EuroQoL group. EuroQoL-a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208. 28. Ferrans CE. Development of a quality of life index for patients with cancer. Oncol Nurs Forum. 1990;17(3):15–21. 29. Dolan P. Modeling valuations for EuroQol health states. Med Care. 1997;35(11):1095–108. 30. Brands I, Köhler S, Stapert S, Wade D, Van Heugten C. Influence of self-efficacy and coping on quality of life and social participation after acquired brain injury: a 1-year follow-up study. Arch Phys Med Rehabil. 2014;95(12):2327–34. doi:10.1016/j.apmr.2014.06.006. 31. Dorman PJ, Waddell F, Slattery J, Dennis M, Sandercock P. Is the EuroQol a valid measure of health-related quality of life after stroke? Stroke. 1997;28:1876–82. 32. Wilson JTL, Pettigrew LEL, Teasdale GM. Structured interviews for the Glasgow Outcome Scale and Extended Glasgow Outcome Scale: guidelines for their use. J Neurotrauma. 1998;15:573–84. doi:10.1089/neu.1998.15.573. 33. Jennett B, Snoek J. Disability after severe head injury: observations on the use of the Glasgow Outcome Scale. J Neurol Neurosurg Psychiatry. 1981;44(4):285–93. 34. Teasdale GM, Pettigrew LE, Wilson JT, Murray G, Jennett B. Analyzing outcome of treatment of severe head injury: a review

9

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1

Risk markers for not returning to work among patients with acquired brain injury: a population-based register study

1

University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden

2

School of Law, Psychology and Social Work, Örebro University, Örebro, Sweden

3

The Swedish Institute for Disability Research, Örebro University, Örebro,

Sweden

Contact information: Marie Matérne E-mail: [email protected] Phone: +46703529350

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Marie Matérne1,3, Thomas Strandberg2,3 and Lars-Olov Lundqvist1,2,3

2

Abstract (150 – 250 words) Purpose: The aim of this study is to investigate person-related, injury-related, activity-related and rehabilitation-related risk markers for not return to work among patients with acquired brain injury (ABI). Methods: Retrospective data from the Quality register, WebRehab Sweden, on an ABI cohort of 2008 patients, was divided into two groups: those who had returned to work (n=690) and those who had not returned to work (n=1318) within a year of the injury. Results: Risk ratio analyses showed that several factors were risk markers for not returning to work: personal factors, including being a woman, being born outside of Sweden, having a low education level, and not having children in the household; injury-related factors, including long hospital stay (over 2 months), aphasia, low motor function, low cognitive function, high pain/discomfort, and high anxiety/depression; activity-related factors, including low function in selfcare, inability to perform usual activities, and not having a driver´s license; and rehabilitation-related factors, including being dissatisfied with the rehabilitation process and the attentiveness of the staff having limited influence over the rehabilitation plan, or not having a rehabilitation plan at all. Conclusion: Several factors in different aspects of life were risk markers for not returning to work among patients with ABI. This suggests that rehabilitation and

3 interventions need to address not only direct injury-related issues, but also personrelated, activity-related, and rehabilitation-related factors in order to increase the patient´s opportunities to return to work.

Keywords: (5 key words selected from the National Library of Medicine Medical Subject Headings) 1.

Brain Injuries, 2. Return to work, 3. Rehabilitation, vocational, 4. Employment, 5. Registries

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4

Introduction One of the main causes of disability worldwide is acquired brain injury (ABI), which may result from cerebrovascular accidents, infections, toxins, tumors, or trauma to the brain [1-5]. Most people with ABI want to live a normal everyday life after the injury, such as returning to work, earning their subsistence and participating in society [6]. However, for many individuals with ABI it is a challenge to return to work. In Sweden, approximately 26 500 people are affected by stroke annually [7], a further 14 000 are treated in hospital for traumatic brain injury, but there are also hidden statistics to consider [8]. Each year, approximately 1300 people with different tumors in the brain are also diagnosed [9] and finally there are other kind of ABI caused by diseases. For people with ABI, vocational rehabilitation is often a long process [10] and, in Sweden, only 35%–41% of them have returned to work after two to three years [4, 5]. This is in line with international findings showing that about 40% of individuals with an ABI return to work within two years [11]. Thus, the probability of returning to work after an ABI is generally low, which influences both the individual and the society. Several factors have been identified as associated with return to work among people with ABI. In the present study, we have categorized the factors into four areas: person-related factors, injury-related factors, activity-related factors and rehabilitation-related factors.

5 Regarding the person-related factors age [3, 12, 13] and gender [3, 12, 14-16], older people [3, 12, 13] and women [3, 12, 14-16] have a higher risk of not returning to work after ABI. Education is another important area, in that having a low education level [17-19] increases the risk of not returning to work. For instance, it has been shown that patients without a university degree are 2.3 times less likely to return to work than university graduates [20]. Others have shown that younger patients with stroke who had a university degree were 13 percent more likely to return to work than those without a university degree [19]. In

was found in one study to be a positive predictor for returning to work [21], although others have not found any association between marital status and returning to work [3]. Patients who that are less motivated [22, 23], who do not emotionally accept their disability [24], who are inflexible and unrealistic in their vocational goals, or who have a more avoidant coping style [14] are less likely to return to work. Moreover, how patients talk about and understand (or do not understand) their rehabilitation and return-to-work process can influence their opportunities to return to work [25]. In regard to injury-related factors, particularly those related to the degree of injury, such as multiple bodily injuries [16], low physical ability [3, 5, 12, 14, 15, 26-30], and a prolonged stay in hospital [13-15, 17, 24, 31] are significant predictors for taking a longer time to return to work. Moreover, being diagnosed

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addition, the individual’s social network is important, for instance being married

6 with depression [14, 15, 26], having low cognitive ability [5, 23, 26], and the presence of fatigue [32-34] are all associated with worse return-to-work outcomes. Concerning activity-related factors, such as performing activities of daily living independently at admission to hospital for a first stroke, were associated with a three times higher chance of returning to work early than for individuals who were totally dependent on others for activities of daily living [3]. One study on cardiac arrest [35] showed that those who were discharged to their own homes had fewer neurological deficits, were more able to handle activities of daily living, had fewer cognitive difficulties, and could more easily return to work. Another relevant factor for an independent lifestyle after ABI was transportation, both for community integration and for vocational rehabilitation [36]. About rehabilitation-related factors, research into individual rehabilitation planning, active participation in inpatient care, and how that affects return to work among patients with ABI is scarce. However, studies have shown that patients with neurological, cardiovascular, and respiratory impairments who were included in the planning of their rehabilitation goals were more compliant with the training regime than those who were not included in the planning [37]. In summary, existing research shows that a variety of factors can affect the opportunities for patients with ABI to return to work. Most research has focused mainly on personal and injury-related factors and less on activity and

7 rehabilitation factors. For instance, there is little research concerning how home support, rehabilitation planning, and possessing a driver’s license affect return to work for patients with ABI. Also, research into person-related factors affecting return to work, such as being born in another country, partnership status, and having children living at home is warranted. In addition, the legal and social framework of a particular country may have consequences for patients with ABI and their return to work. Thus, the aim of this study was to investigate personrelated, injury-related, activity-related, and rehabilitation-related risk markers for

Method The regional Ethical Review Board in Uppsala, Sweden (ref. 2016/055) approved the study. After ethical approval, an application was sent to the quality register WebRehab Sweden for data access. The application was agreed, and a statistician from the register extracted data and made it available to the researchers.

Study population WebRehab Sweden is a quality register that collects data on brain-injured patients upon admission to hospital, at discharge from hospital, and at follow-up one year after the injury [38]. WebRehab Sweden started 1997 and covers 75% of the rehabilitation medicine clinics in Sweden [38]. Between 1 January 2007 and 15

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not returning to work among patients with ABI.

8 January 2016 (the data collection period for the present study), the register included a total of 11 346 patients with ABI. The inclusion criteria for the present study were: 1) being 18–66 years old 2) having an ABI (i.e., stroke, subarachnoid hemorrhage, traumatic brain injury, post-infectious/post-inflammatory brain injury, anoxic brain injury, or other brain injury), 3) working 50% or more (employed or self-employed) at admission to hospital, 4) not working at all at discharge from hospital (i.e., being on 100% sick leave), and 5) having follow-up data. A total of 2008 patients were included. For a flow chart, see Figure 1. Those patients who appeared several times in the data file were only included in the study at the first registered injury period. Only those with a maximum hospitalization period of one year and a hypothetical chance of returning to work within one year were included.

Measures Dependent variable (outcome) Returned to work. This variable was scored as Yes if the patient worked at least 50%, in paid employment or self-employed, at follow-up one year after the injury and No if they were working less than 50% at follow-up.

9

Independent variables (predictors) Demographic data consisted of age (in years) at admission, gender, education (compulsory school, upper secondary school, or university), and country of birth (Sweden or outside Sweden). Hospital stay was measured in days from admission to discharge. Diagnosis was categorized at admission to hospital into seven groups and in this study rescored into three categories: stroke (stroke and subarachnoid

infectious/post-inflammatory brain injury, anoxic brain injury, brain tumors, and other brain injuries). Functional outcome was measured using the Extended Glasgow Outcome Scale (GOSE) [39]. GOSE assesses overall function after a head injury relative to preinjury function on a global scale in eight steps [40, 41]. The scores range from dead (I), vegetative state (II), lower severe disability (III), upper severe disability (IV), lower moderate disability (V), upper moderate disability (VI), lower good recovery (VII), and upper good recovery (VIII). In this study, the eight GOSE levels were rescored into three categories, with GOSE category I–IV labeled as poor recovery, category V–VI as moderate recovery, and category VII–VIII as good recovery.

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hemorrhage), traumatic brain injury, and other brain injuries (post-

10 Motor and cognitive function was measured using the Functional Independence Measure (FIM) [42, 43]. FIM is categorized into 18 activities. Each of the activities is scored from 1 (total need of assistance) to 7 (complete independence). These activities are grouped into six areas of function: (I) self-care, (II) sphincter control, (III) mobility, (IV) locomotion, (V) communication, and (VI) social cognition [42, 43]. FIM is assessed by observing the patient [42]. The activities in category I–IV measure motor function and the activities in category V and VI measure cognitive function. In the present study, the motor function and cognitive function mean scores were rescored into three levels: total assistance (a mean score from 1.00 to 2.99), some help needed (a mean score from 3.00 to 5.99), and no help needed (a mean score from 6.00 to 7.00). Partnership status and having children living at home. The register contains seven categories for the household variable, confounding ‘marital status’ and ‘having children’. These variables were rescored into two new variables: Being single (Yes or No) and having children living at home (Yes or No), the alternatives “don´t know” and “other” were excluded from analysis. Home support. In the register, the housing variable included a mix of accommodation types (ordinary or special) and support in the home (support and no support). This variable was rescored into a new Home support variable scored

11 as those with support (Yes) and those without support (No), regardless of type of accommodation. Driver’s license. Having a driver’s license at discharge was scored as Yes if the patient still had one, and No if the license had been suspended or the patients never had any. Individual rehabilitation plan. This tool outlines the intended rehabilitation process for the individual patient. The plan is established jointly with the patient,

The aim of the plan is to increase the patient’s participation in his or her rehabilitation process. The WebRehab register contains two questions on this topic: ‘Has a written rehabilitation plan been prepared?’, scored as No or Yes and ‘Has a written rehabilitation plan been used?’, scored as Not used or Yes / partly used. Satisfaction with the rehabilitation. The register also contains a patient-reported experience measure (PREM) with seven questions regarding the patient’s degree of satisfaction with 1) the attention received from the staff, 2) the cooperation with the staff, 3) the rehabilitation process, 4) the patient’s influence over the rehabilitation process, including the individual rehabilitation plan, 5) the information given about the brain injury, 6) the information given on where to get more support if needed after discharge from hospital, and 7) the information and

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health care representatives, the municipality, the relatives, and the employer [44].

12 attention the family and relatives had received during the patient’s rehabilitation at the clinic. Each question was scored on a four-point Likert scale from ‘very dissatisfied’ to ‘very satisfied’. In the present study, the responses ‘very dissatisfied’ and ‘dissatisfied’ were rescored as dissatisfied and the responses ‘satisfied’ and ‘very satisfied’ were rescored as satisfied. There was also a ‘don´t know’ alternative, which was excluded from the analyses. Health status. This was measured by five questions covering mobility, self-care, usual activities (e.g. work, studies, household chores, family and leisure activities), pain/discomfort, and anxiety/depression. The questions were taken from the EuroQol five dimensions questionnaire, EQ-5D [45]. Each question was scored in three levels: severe problems, some problems, and no problems. In this study, the questions were treated as individual variables.

Statistical analyses All data analysis was performed using IBM SPSS Statistics version 22.0 (IBM Corp., Armonk, NY, USA). Descriptive statistics (mean and standard deviation) were used to characterize the sample. The risk ratio (RR) and its 95% confidence interval (CI) for returning to work was estimated for each of the predictor variables using the chi-square test with Fisher’s exact test. A p-value of 0.05 or less was regarded as statistically significant.

13

Results As shown in Figure 1, the analyses are based on 2008 patients. Of these, 690 had returned to work and 1318 had not returned to work at follow-up one year after the injury. Baseline characteristics of the study sample are shown in Table 1. The risk ratios for not returning to work are given in Table 2. The results showed that, among the person-related factors, being a woman, being born outside Sweden, having a lower educational level, and not having children in the

related factors, a hospital stay of more than 25 days increased the risk of not returning to work. In addition, those with aphasia had a larger risk of not returning to work than those without aphasia. Concerning motor and cognitive functions measured by the FIM, those classified as needing total assistance or some help needed had a higher risk of not returning to work than those who did not need help. Both those with moderate disability and those with poor recovery according to the GOSE measure had a greater risk of not returning to work than those with good recovery. In addition, those who were confined to bed or had problems with mobility were less likely to return to work. Furthermore, patients who had pain/discomfort or anxiety/depression had a higher risk of not returning to work compared to those with no pain/discomfort or anxiety/depression problems. There

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household increased the risk of not returning to work. Among the brain injury-

14 was no significant difference in the risk of not returning to work in relation to the type of brain injury diagnosis. Concerning the activity-related factors, patients with low ability to perform self-care or usual everyday activities had a higher risk of not returning to work than those who had no problems with these activities. Having one’s driver’s license suspended at discharge also increased the risk of not returning to work. The presence or absence of home support was not a significant risk marker for not returning to work. Concerning rehabilitation-related factors, the patients’ satisfaction with the information they received about the brain injury, information to the family, information on where to turn with questions related to the brain injury after discharge from the hospital, and the cooperation with the staff, were unrelated to the risk of not returning to work. However, being satisfied with the rehabilitation process and being satisfied with their own influence over the rehabilitation planning process were associated with a higher likelihood of returning to work. Contrary to expectations, having a rehabilitation plan increased the risk of not returning to work. Finally, neither the patients’ satisfaction with the attention from staff or whether an existing written rehabilitation plan had actually been used were significantly related to the risk of not returning to work.

15

Discussion The purpose of this study was to investigate risk markers for not returning to work among patients with ABI. The main result showed that several factors influence the risk of not returning to work. In keeping with previous research, women had a greater risk of not returning to work within a year after a brain injury compared to men [3, 12, 14-16]. In Sweden, almost as many women as men participate in the workforce [46]. Nevertheless, women in Sweden may still be discriminated

could make returning to work harder for women with ABI [47]. The results showed that individuals born outside Sweden had higher risk of not returning to work than those born in Sweden. Statistics Sweden report that people born in Sweden have a working rate of 84% while people born outside Sweden have a rate of 71% [48]. No studies about immigrants with ABI, and return to work were found, but a study on low back pain compared native-born patients and immigrants entering rehabilitation noted that immigrants might have special needs that should be addressed when planning rehabilitation [49] which also may be the case for patients with ABI. The results showed that a high education level was essential for returning to work. Having a university degree increased the chances of returning to work after an ABI, something that has also has been found by others [17-19]. An explanation is that a university degree gives a wider range of possible job assignments. In our

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in working life; for example, gender norms that exist within a specific workplace

16 study, 45% of the individuals with a university degree returned to work, but only 32% of those with compulsory school education returned to work. A higher education level generally predicts higher income and higher socioeconomic status [19]. Higher education is also often associated with white-collar jobs, and these positions are often more flexible [5, 24, 50]. Therefore, giving the patients the possibility of education during the rehabilitation period could be a positive factor for at least some of these patients, but the education would have to be adapted to the patient’s individual capacity. Those in households with children had a significantly higher likelihood of returning to work than those in households without children. No other research findings have been found in this area, but children in the household can be a driving force [51]. Returning to working life makes it possible to show the children that everything is normal again after the injury. Moreover, it has been argued that living in a relationship provides a natural support system for an individual with brain injury [21], but, in our study, being married or living with a partner was not associated with a higher likelihood of returning to work, and similar results has been found by other studies [3, 52]. Nevertheless, there are some findings that indicate that marriage may be a positive predictor for returning to work [21] and others have shown that support from family is important for patients with brain injuries on returning to work [53, 54].

17 The present study did not find age to be a risk marker for not returning to work. This is contrary to previous findings, that younger stroke patients could more easily return to work because they had less indicators of stroke severity, such as hypertension or diabetes prior to their stroke [12]. In regard to injury-related factors, patients with lower motor function showed a higher risk of not returning to work, which is in line with findings in many other studies [3, 5, 12, 14, 15, 26-30]. Those who needed some help with cognitive function (FIM) and those who needed total assistance had a higher risk of not

needed cognitive support, and required help at work had a more complex returnto-work process, as shown in several other studies [5, 23, 26]. A long period of hospital stay was another risk marker for not returning to work. Those with a longer stay in hospital had a many times higher risk of not returning to work than those with a shorter hospital stay. Several other studies have found a similar result [13-15, 17, 24, 31]. Some of them explained that the longer stay in hospital was found with patients who had a more severe injury, making it harder to return to work [15, 17, 24, 31]. Patients with aphasia had a higher risk of not returning to work than those without aphasia. A review showed that employment decreased after aphasia and return to work was often at a less demanding level [55]. Patients with aphasia

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returning to work. The patients who had problems with cognition, continually

18 experienced that it was a struggle to handle activities of daily living and that their aphasia had an impact on their participation in society [56]. Those with moderate or extreme pain/discomfort had higher risk of not returning to work than those without pain/discomfort. This is in line with previous research, which showed that severe head and/or bodily pain after mild traumatic brain injury predicted a delayed return to work [57]; this is possibly also the case for patients with other kinds of ABI. Finally, our results showed that it was harder to return to work if the patient also suffered from anxiety or depression, which is in keeping with other studies [14, 15, 26]. There was, however, no increased risk of not returning to work in relation to type of diagnosis, indicating that the diagnosis may play a lesser role than the individual’s functional level. Those with poor self-care ability in activities of daily living, such as dressing and washing themselves, had an increased risk of not returning to work. This result is consistent with other studies showing that patients who can independently perform activities of daily living return to work earlier after the injury [3]. In our study, those who had problems with their usual activities, such as studies, household chores, and family and leisure activities, had a higher risk of not returning to work. In addition, those who had their driver’s license suspended had a higher risk of not returning to work, which is in line with other findings that having a driver´s license was associated with a productive lifestyle

19 after ABI [58]. However, having home support did not influence the risk of not returning to work. Finally, regarding rehabilitation-related factors satisfaction with the rehabilitation process and the individual’s influence over the process, including the individual rehabilitation plan, increased the chances of returning to work. This is in line with other research showing that patients who could understand the rehabilitation were more likely to return to work [25]. One way to help patients understand the rehabilitation is to form a

is transparent for the patient and the staff. However, our results showed, counterintuitively, that having a written rehabilitation plan was associated with a greater risk of not returning to work, regardless of whether this written individual rehabilitation plan was used or not. It may be that patients with minor injuries and a short rehabilitation period are less likely to get a rehabilitation plan and more likely to be able to return to work without needing such support. Another possible explanation is that patients with brain injury have rehabilitation plans from different hospital departments and other organizations that are not coordinated, so the plans that were created have not actually been used or followed up. Future research may shed some light on this result. Although previous research has shown that information given to the patient and family is an important aspect in the return-to-work process [23], our study

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rehabilitation plan that create a predictable vocational rehabilitation process that

20 found no association between satisfaction with information about the brain injury, satisfaction with information on where to turn for information after the hospitalization period, or satisfaction with the information and attention given to the family and returning to work.

Study limitations Although there are strengths with the study regarding sample size, there are some limitations that have to be addressed, such as the relatively large proportion of missing data. The lack of data is mostly due to the fact that many of the variables were optional for the clinics to assess. As a result, only 18% of the total cohort could be included in the present study. Another limitation is that there were no data on the exact number of days between discharge from hospital and the time when the patient returned to work, or on what percentage of full-time work they started with and at what point they increased their working hours. Finally, a weakness is that the quality register provides fixed variables, which limits the type of possible research questions [59]. Consequently, in our study, it would have been interesting to examine more rehabilitation-related risk markers as well as risk markers related to adjustments in the vocational rehabilitation process.

21

Conclusion The present study showed that all areas of person-related, injury-related, activityrelated, and rehabilitation-related factors are associated with the likelihood of returning to work for patients with ABI. The return-to-work process is complex, with all areas interacting with each other to increases the risk of not returning to work. Most notably, being a woman, being born outside of Sweden, having only a compulsory school diploma, and not having children in the household increased

hospital stay, aphasia, low motor function, low cognitive function, high pain/ discomfort, and high anxiety/depression worsened the chances of returning to work. Of the activity-related factors, low function in self-care, low function in usual activities, and low personal influence over the rehabilitation plan also gave a higher risk of not returning to work after ABI.

Acknowledgements We are grateful to WebRehab Sweden for making data available for research. This study was supported by grants from the University Health Care Research Centre, Region Örebro County, Sweden.

Declaration of interest The authors declare that they have no conflict of interest.

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the risk of not returning to work after ABI. Of the injury-related factors, long

22

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Busch MA, Coshall C, Heuschmann PU, McKevitt C, Wolfe CDA. Sociodemographic differences in return to work after stroke: the South London Stroke Register (SLSR). Journal of Neurology, Neurosurgery 2009;80(8):888. Hofgren C, Esbjörnsson E, Sunnerhagen KS. Return to work after acquired brain injury: Facilitators and hindrances observed in a sub-acute rehabilitation setting. Work: A Journal of Prevention, Assessment and Rehabilitation 2010;36(4):431-39. Arwert HJ, Schults M, Meesters JJL, Wolterbeek R, Boiten J, Vliet Vlieland T. Return to Work 2–5 Years After Stroke: A Cross Sectional Study in a Hospital-Based Population. Journal of Occupational Rehabilitation 2017;27(2):239-46. van Velzen JM, van Bennekom CM, Edelaar MA, Sluiter JK, Frings-Dresen MW. Prognostic factors of return to work after acquired brain injury: A systematic review. Brain Inj 2009;23(5):385-95. Waljas M, Iverson GL, Lange RT, Liimatainen S, Hartikainen KM, Dastidar P, et al. Return to work following mild traumatic brain injury. J Head Trauma Rehabil 2014;29(5):443-50. Donker-Cools B, Wind H, Frings-Dresen M. Prognostic factors of return to work after traumatic or non-traumatic acquired brain injury. Disabil Rehabil 2016;38(8):733-41. Treger I, Shames J, Giaquinto S, Ring H. Return to work in stroke patients. Disabil Rehabil 2007;29(17):1397-403. Trygged S, Ahacic K, Kåreholt I. Income and education as predictors of return to working life among younger stroke patients. BMC Public Health 2011;11:742-42. Walker WC, Marwitz JH, Kreutzer JS, Hart T, Novack TA. Occupational categories and return to work after traumatic brain injury: A multicenter study. Arch Phys Med Rehabil 2006;87(12):1576-82. Harris C. Factors influencing return to work after aneurysmal subarachnoid hemorrhage. J Neurosci Nurs 2014;46(4):207-17. Rubenson C, Svensson E, Linddahl I, Bjorklund A. Experiences of returning to work after acquired brain injury. Scand J Occup Ther 2007;14(4):205-14.

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Matérne M, Lundqvist L-O, Strandberg T. Opportunities and barriers for successful return to work after acquired brain injury: a patient perspective. WORK: A Journal of Prevention, Assessment & Rehabilitation 2017;56(1):125-34. Wang Y-C, Kapellusch J, Garg A. Important factors influencing the return to work after stroke. Work 2014;47(4):553-59 7p. Landstad BJ, Ahrberg Y. Conceptualizing the driving forces for successful rehabilitation back to work. Disabil Rehabil 2017:110. Fride Y, Adamit T, Maeir A, Ben Assayag E, Bornstein NM, Korczyn AD, et al. What are the correlates of cognition and participation to return to work after first ever mild stroke? Top Stroke Rehabil 2015;22(5):317-25. Passier PE, Visser-Meily JM, Rinkel GJ, Lindeman E, Post MW. Life satisfaction and return to work after aneurysmal subarachnoid hemorrhage. J Stroke Cerebrovasc Dis 2011;20(4):324-9. Gabriele W, Renate S. Work loss following stroke. Disabil Rehabil 2009;31(18):1487-93. Tanaka H, Toyonaga T, Hashimoto H. Functional and Occupational Characteristics Associated With Very Early Return to Work After Stroke in Japan. Arch Phys Med Rehabil 2011;92:743-8. Shames J, Treger I, Ring H, Giaquinto S. Return to work following traumatic brain injury: Trends and challenges. Disabil Rehabil 2007;29:1387-95. Ketchum JM, Almaz Getachew M, Krch D, Banos JH, Kolakowsky-Hayner SA, Lequerica A, et al. Early predictors of employment outcomes 1 year post traumatic brain injury in a population of Hispanic individuals. NeuroRehabilitation 2012;30(1):13-22. Kauranen T, Turunen K, Laari S, Mustanoja S, Baumann P, Poutiainen E. The severity of cognitive deficits predicts return to work after a first-ever ischaemic stroke. Journal of Neurology, Neurosurgery 2013;84(3):316-21.

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van Velzen J, van Bennekom C, van Dormolen M, Sluiter J, Frings-Dresen M. Factors influencing return to work experienced by people with acquired brain injury: A qualitative research study. Disabil Rehabil 2011;33(23/24):2237-46. Hartke RJ, Trierweiler R. Survey of survivors' perspective on return to work after stroke. Top Stroke Rehabil 2015;22(5):32634. Hofgren C, Lundgren-Nilsson A, Esbjornsson E, Sunnerhagen KS. Two years after cardiac arrest; cognitive status, ADL function and living situation. Brain Inj 2008;22(12):972-8. Fraas M, Balz M, DeGrauw W. Meeting the long-term needs of adults with acquired brain injury through community-based programming. Brain Inj 2007;21(12):1267-81. Levack WM, Taylor K, Siegert RJ, Dean SG, McPherson KM, Weatherall M. Is goal planning in rehabilitation effective? A systematic review. Clin Rehabil 2006;20(9):739-55. Stibrant-Sunnerhagen K, Flansbjer U-B, Lannsjö M, Tölli A, Lundgren-Nilsson A. WebRehab: a Swedish database for quality control in rehabilitation. J Rehabil Med 2014;46(10):958-62. Wilson JTL, Pettigrew LEL, Teasdale GM. Structured interviews for the Glasgow Outcome Scale and Extended Glasgow Outcome Scale: Guidelines for their use. J Neurotrauma 1998;15:573-84. Jennett B, Snoek J. Disability after severe head injury: observations on the use of the Glasgow Outcome Scale. J Neurol Neurosurg Psychiatry 1981;44(4):285-93. Teasdale GM, Pettigrew LE, Wilson JT, Murray G, Jennett B. Analyzing outcome of treatment of severe head injury: a review and update on advancing the use of the Glasgow Outcome Scale. J Neurotrauma 1998;15(8):587-97. Keith RA, Granger CV, Hamilton BB, Sherwin FS. The functional independence measure: a new tool for rehabilitation. Adv Clin Rehabil 1987;1:6-18. McDowell I, Newell C. Measuring Health - A Guide to Rating Scales and Questionnaires. New York: Oxford University Press; 1996.

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HSL. In: Regeringskansliet, editor. 30; 2017. EuroQoL group. EuroQoL-a new facility for the measurement of health-related quality of life. Health Policy 1990;16(3):199-208. Statistics Sweden. Stora skillnader i sysselsättningsgrad mellan småbarnsföräldrar [Large differences in employment rates between parents of small children] [Internet]. 2016 [cited 2018 13/06]. Available from: http://www.scb.se/sv_/Hittastatistik/Statistik-efteramne/Arbetsmarknad/Arbetskraftsundersokningar/Arbetskrafts undersokningarna-AKU/23265/23272/Behallare-forPress/403978/. Stergiou-Kita M, Mansfield E, Sokoloff S, Colantonio A. Gender Influences on Return to Work After Mild Traumatic Brain Injury. Arch Phys Med Rehabil 2016;97(2 Suppl):S40-5. Statistiska centralbyrån. Mäns och kvinnors arbetsmarknad åren 2001-2016, AM 110 SM 1602 [The labour market for men and women during the years 2001-2016]. Stockholm; 2016. Lindström I, Areskoug B, Allebeck P. Do immigrant patients differ from native Swedish patients with back pain when entering rehabilitation? Advances in Physiotherapy 2002;4(2):74-84. Saeki S, Hachisuka K. The association between stroke location and return to work after first stroke. J Stroke Cerebrovasc Dis 2004;13(4):160-63. Strandberg T. Vuxna med förvärvad traumatisk hjärnskada omställningsprocesser och konsekvenser i vardagslivet: en studie av femton personers upplevelser och erfarenheter av att leva med förvärvad traumatisk hjärnskada [Adults with acquired traumatic brain injury]. Örebro; 2006. McLean R. Employment status six months after discharge from inpatient rehabilitaiton for a mild-to-moderate physical disability. Ann Acad Med Singapore 2007;36(1):18-21. Nalder E, Fleming J, Cornwell P, Foster M. Linked Lives: The Experiences of Family Caregivers During the Transition from Hospital to Home Following Traumatic Brain Injury. Brain Impairment 2012;13(01):108-22.

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Strandberg T. Adults with acquired traumatic brain injury: Experiences of a changeover process and consequences in everyday life. Soc Work Health Care 2009;48(3):276-97. Dalemans RJP, De Witte LP, Wade DT, Van den Heuvel WJA. A description of social participation in working-age persons with aphasia: A review of the literature. Aphasiology 2008;22(10):1071-91. Niemi T, Johansson U. The lived experience of engaging in everyday occupations in persons with mild to moderate aphasia. Disabil Rehabil 2013;35(21):1828-34. Cancelliere C, Kristman VL, Cassidy JD, Hincapié CA, Côté P, Boyle E, et al. Systematic Review of Return to Work After Mild Traumatic Brain Injury: Results of the International Collaboration on Mild Traumatic Brain Injury Prognosis. Arch Phys Med Rehabil 2014;95(3, Supplement):S201-S09. Fraas MR, Calvert M. The use of narratives to identify characteristics leading to a productive life following acquired brain injury. Am J Speech Lang Pathol 2009;18(4):315-28. Jacobsson Ekman G, Lindahl B, Nordin A. Nationella kvalitetsregister i hälso- och sjukvården [National Quality Register in Health Care]. Stockholm: Karolinska institutet; 2015.

28

Figure caption Figure 1 Flow chart of the inclusion process

Figure 1 Aged 18-66 and having an acquired brain injury Included n=11 346

Working ≥ 50% (employed or self-employed) at admission Included n=5062

Working < 50% (employed or self-employed) at admission Excluded n=6284

Working at discharge Excluded n=1003

Not working at discharge (i.e., 100% on sick leave) Included n=4059 Lost due to no follow-up data on return to work Excluded n=2051 Included in study n=2008

29 Table 1. Baseline characteristics at admission of persons who returned to work (RTW; n = 690) or did not return to work (non-RTW; n = 1318) within 357 days after acquired brain injury Variables

Non- RTW N=1318 (66%)

RTW N=690 (34%)

2008 (100) 129 (7) 181 (9) 458 (23) 896 (45) 345 (17) 2008 (100) 1278 (64) 730 (36) 1248 (100) 1099 (88) 149 (12) 1180 (100) 117 (10) 653 (55) 410 (35) 1918 (100) 643 (34) 1275 (66) 1918 (100) 1310 (68) 608 (32)

1318 (100) 76 (6) 112 (9) 302 (23) 604 (46) 224 (17) 1318 (100) 787 (60) 531 (40) 785 (100) 667 (85) 118 (15) 743 (100) 79 (11) 439 (59) 225 (30) 1254 (100) 424 (34) 830 (66) 1254 (100) 878 (70) 376 (30)

690 (100) 53 (8) 69 (10) 156 (23) 291 (42) 121 (18) 690 (100) 491 (71) 199 (29) 463 (100) 432 (93) 31 (7) 437 (100) 38 (8) 214 (50) 185 (42) 664 (100) 219 (33) 445 (67) 664 (100) 432 (65) 232 (35)

2008 (100) 1476 (73) 336 (17) 196 (10) 1312 (100) 981 (75) 331 (25) 2008 (100) 537 (27) 943 (47) 528 (26) 1400 (100) 308 (22) 824 (59) 268 (19) 1590 (100) 1149 (72) 348 (22) 93 (6) 1591 (100) 986 (62) 533 (33) 72 (5) 1464 (100) 761 (52) 663 (45) 40 (3) 1464 (100) 623 (42)

1319 (100) 986 (75) 206 (16) 126 (9) 885 (100) 630 (71) 255 (29) 1317 (100) 224 (17) 625 (47) 469 (36) 912 (100) 127 (14) 543 (60) 242 (26) 1073 (100) 684 (64) 302 (28) 86 (8) 1073 (100) 572 (53) 438 (41) 63 (6) 959 (100) 404 (42) 517 (54) 38 (4) 959 (100) 358 (37)

690 (100) 490 (71) 130 (19) 70 (10) 427 (100) 351 (82) 76 (18) 690 (100) 313 (45) 318 (46) 59 (9) 488 (100) 181 (37) 281 (58) 26 (5) 518 (100) 465 (90) 46 (9) 7 (1) 518 (100) 414 (80) 95 (18) 9 (2) 505 (100) 357 (70.5) 146 (29) 2 (0.5) 505 (100) 265 (52)

STUDIE IV

Person-related factors Age group (mean 51.02; SD 10.41) 18–29 30–39 40–49 50–59 60–66 Gender Man Woman Country of birth Sweden Outside Sweden Education Compulsory school (9 years of education) Upper secondary school (12 years of education) Marital status Single Living with a partner Children No children in household Children in household Injury-related factors Diagnosis Stroke TBI Other kind of brain injury Aphasia/dysphasia No Yes Hospital stay (mean 52.34 days; SD 42.87) Short (0–24 days) Moderate (25–68 days) Long (68–357 days) Functional outcome Good recovery (VII–VIII) Moderate disability (V–VI) Very severe and severe disability (I–IV) Motor function No help needed 6–7 Some help needed 3–5.99 Total assistance 1–2.99 Cognitive function No help needed 6–7 Some help needed 3–5.99 Total assistance 1–2.99 Mobility I have no problems walking about I have some problems walking about I am confined to bed Pain/Discomfort I have no pain or discomfort

Total N=2008 (100%)

3030

Matérne, M., Strandberg, T., Lundqvist, L-O Risk markers for not returning to work among patients with ABI

I have moderate pain or or discomfort I have moderate pain discomfort I have extreme pain or or discomfort I have extreme pain discomfort Anxiety/depression Anxiety/depression I am notnot anxious or or depressed I am anxious depressed I am moderately anxious or or depressed I am moderately anxious depressed I am extremely anxious or or depressed I am extremely anxious depressed Activity-related factors Activity-related factors Self-Care Self-Care I have no no problems with self-care I have problems with self-care I have some problems washing or or dressing myself I have some problems washing dressing myself I am unable to to wash or or dress myself I am unable wash dress myself Usual Activities Usual Activities I have no no problems with performing mymy usual activities I have problems with performing usual activities I have some problems with performing mymy usual I have some problems with performing usual activities activities I am unable to to perform mymy usual activities I am unable perform usual activities Driver’s License Driver’s License NoNo Yes Yes Home support Home support Accommodation without support Accommodation without support Accommodation with support Accommodation with support Rehabilitation-related factors Rehabilitation-related factors The rehabilitation process The rehabilitation process Dissatisfied Dissatisfied Satisfied Satisfied The individual´s cooperation with thethe staff The individual´s cooperation with staff Dissatisfied Dissatisfied Satisfied Satisfied The individual’s influence over thethe rehabilitation The individual’s influence over rehabilitation process including hishis or or herher rehabilitation plan process including rehabilitation plan Dissatisfied Dissatisfied Satisfied Satisfied The information given about thethe brain injury The information given about brain injury Dissatisfied Dissatisfied Satisfied Satisfied The information onon where to to getget support if needed The information where support if needed after discharge from hospital after discharge from hospital Dissatisfied Dissatisfied Satisfied Satisfied The attention given to to thethe individual byby thethe staff The attention given individual staff Dissatisfied Dissatisfied Satisfied Satisfied Has a written rehabilitation plan been prepared? Has a written rehabilitation plan been prepared? NoNo Yes Yes Has a written rehabilitation plan been used? Has a written rehabilitation plan been used? NoNo Yes Yes The information and attention thethe family and The information and attention family and relatives had received during thethe individual’s relatives had received during individual’s rehabilitation at at thethe clinic rehabilitation clinic Dissatisfied Dissatisfied Satisfied Satisfied

771771 (53) (53) 7070 (5)(5) 1464 (100) 1464 (100) 809809 (55) (55) 610610 (42) (42) 4545 (3)(3)

545545 (57) (57) 5656 (6)(6) 959959 (100) (100) 468468 (49) (49) 455455 (47) (47) 3636 (4)(4)

226226 (45) (45) 1414 (3)(3) 505505 (100) (100) 341341 (67) (67) 155155 (31) (31) 9 (2) 9 (2)

1464 (100) 1464 (100) 1092 (75) 1092 (75) 327327 (22) (22) 4545 (3)(3) 1464 (100) 1464 (100) 459459 (31) (31)

959959 (100) (100) 640640 (67) (67) 278278 (29) (29) 4141 (4)(4) 959959 (100) (100) 231231 (24) (24)

505505 (100) (100) 452452 (89) (89) 4949 (10) (10) 4 (1) 4 (1) 505505 (100) (100) 228228 (45) (45)

709709 (49) (49) 296296 (20) (20) 1909 (100) 1909 (100) 1762 (93) 1762 (93) 147147 (7)(7) 259259 (100) (100) 244244 (94) (94) 1515 (6)(6)

493493 (51) (51) 235235 (25) (25) 1250 (100) 1250 (100) 1167 (93) 1167 (93) 8383 (7)(7) 152152 (100) (100) 140140 (92) (92) 1212 (8)(8)

216216 (43) (43) 6161 (12) (12) 659659 (100) (100) 595595 (90) (90) 6464 (10) (10) 107107 (100) (100) 104104 (97) (97) 3 (3) 3 (3)

1427 (100) 1427 (100) 1616 (1)(1) 1411 (99) 1411 (99) 897897 (100) (100) 556556 (62) (62) 341341 (38) (38) 857857 (100) (100)

932932 (100) (100) 1616 (2)(2) 916916 (98) (98) 2 (100) 2 (100) 2 (100) 2 (100) 0 (0) 0 (0) 533533 (100) (100)

495495 (100) (100) 0 (0) 0 (0) 495495 (100) (100) 895895 (100) (100) 554554 (62) (62) 341341 (38) (38) 324324 (100) (100)

2727 (3)(3) 830830 (97) (97) 1411 (100) 1411 (100) 8585 (6)(6) 1325 (94) 1325 (94) 1268 (100) 1268 (100)

2424 (4)(4) 509509 (96) (96) 911911 (100) (100) 6363 (7)(7) 848848 (93) (93) 821821 (100) (100)

3 (1) 3 (1) 321321 (99) (99) 499499 (100) (100) 2222 (4)(4) 477477 (96) (96) 447447 (100) (100)

6666 (5)(5) 1202 (95) 1202 (95) 1446 (100) 1446 (100) 1111 (1)(1) 1435 (99) 1435 (99) 2008 (100) 2008 (100) 214214 (11) (11) 1794 (89) 1794 (89) 1799 (100) 1799 (100) 1212 (0.5) (0.5) 1787 (99.5) 1787 (99.5) 828828 (100) (100)

4949 (6)(6) 772772 (94) (94) 942942 (100) (100) 1010 (1)(1) 931931 (99) (99) 1318 (100) 1318 (100) 116116 (9)(9) 1202 (91) 1202 (91) 1205 (100) 1205 (100) 5 (0.5) 5 (0.5) 1200 (99.5) 1200 (99.5) 514514 (100) (100)

1717 (4)(4) 430430 (96) (96) 505505 (100) (100) 1 (1) 1 (1) 504504 (99) (99) 690690 (100) (100) 9898 (14) (14) 592592 (86) (86) 594594 (100) (100) 7 (1) 7 (1) 587587 (99) (99) 314314 (100) (100)

1919 (2)(2) 809809 (98) (98)

1313 (2)(2) 501501 (98) (98)

6 (2) 6 (2) 308308 (98) (98)

Matérne, M., Strandberg, T., Lundqvist, L-O Risk markers for not returning to work among patients with ABI

31 31

TableTable 2. Relative risk (RR) notof returning to work brain injury. 2. Relative risk of (RR) not returning to after workacquired after acquired brain injury. Variables Variables

Ref 1.05 1.07 1.05 1.07

Pa

Pa

Ref 1.05 1.07 1.05 1.07

Ref Ref 0.87–1.28 0.87–1.28 0.98–1.18 0.98–1.18 1.00–1.11 1.00–1.11 0.95–1.21 0.95–1.21

0.638 0.638 0.146 0.146 0.058 0.058 0.240 0.240

Ref Ref 1.40 1.40

Ref Ref 1.22–1.60 1.22–1.60