Inflammatorisk tarmsjukdom (IBD), bestående av Crohns sjukdom (CD) och ulcerös kolit (UC), är en kronisk sjukdom som drabbar både vuxna och barn. I Sverige idag finns cirka 60 000 individer som är diagnostiserade med sjukdomen. Även om endast cirka två procent av alla individer som har IBD är barn, har 10-25 procent av alla IBD-patienter insjuknat som barn (<18 år). Orsaken till insjuknandet är fortfarande oklar, men arvets betydelse är välkänd. Typiska symtom är: buksmärtor, diarré samt blod och slem i avföringen. Sjukdomens förlopp är svårt att kontrollera, då den kommer i skov och oftast utan förvarning. Hos barn som drabbas kan sjukdomen hämma tillväxten samt orsaka försenad pubertet.
Diagnostiken baseras på en noggrann anamnes (sjukhistoria), en endoskopisk undersökning (endoskopi är ett samlingsnamn för undersökningar där ett endoskop används) samt inflammatoriska markörer i blod och avföring. Fortfarande finns inte någon kurativ behandling för sjukdomen, men befintliga behandlingar kan minska symtomen och drabbade barn kan uppleva relativt symtomfria perioder. Det är välkänt att sjukdomen har en negativ inverkan på barnets livskvalitet, och en koppling mellan sjukdomens aktivitet och sänkt livskvalitet har kunnat ses. Historiskt sett har forskningen kring barn med IBD fokuserat på föräldrars och professionellas perspektiv, medan denna avhandling baseras på barnens perspektiv, med fokus på barn i åldersgruppen 10-18 år.
genomföras är det nödvändigt att tarmen är ren. Undersökningen görs via ändtarmen med en mjuk slang försedd med kamera och ljus.
Det övergripande syftet med denna avhandling var att undersöka barns perspektiv på att genomgå koloskopi och på att leva med IBD. Ett ytterligare syfte var att undersöka om natriumpikosulfat (NaPico) kan användas som ett lämpligt laxeringsalternativ för att rengöra tarmen inför koloskopi.
I den första delstudien intervjuas 17 barn om sina upplevelser av att genomgå en koloskopi och dess förberedelse. Urvalskriterierna för att ingå i studien var: att barnet skulle genomgå en koloskopi för första gången och att barnet kunde tala och förstå svenska språket. Informanterna instruerades att berätta om sina upplevelser, och om de känslor och tankar som uppstod i samband med undersökningen. Intervjuerna transkriberades och analyserades med hjälp av innehållsanalys. I analysen av barnens berättelser framkom fyra kategorier: Att förbereda sig själv, Att hantera situationen, Att delta motvilligt och Att känna emotionellt stöd. Dessa kategorier utgjorde underlag för ett övergripande tema: En privat angelägenhet. Koloskopi och dess förberedelse beskrevs som något barnen inte var villiga att prata om med sina kompisar eller sjukvårdspersonalen, och det framkom att de hade olika strategier för att hantera situationen. Trots detta uttalade barnen behov av information och stöd för att klara undersökningen.
Syftet med den andra delstudien var att belysa föräldrarnas upplevelser när deras barn genomgår en koloskopi med polyetylenglykolbaserat laxeringsmedel (PEG). Individuella intervjuer med 12 föräldrar (11 kvinnor och en man) utfördes 7-10 dagar efter barnens koloskopi. Intervjuerna analyserades med innehållsanalys. Föräldrarna hade motstridiga känslor när de var tvungna att få barnet att dricka laxeringsmedlet och när de upplevde att de inte kunde visa sin empati för barnet. De upplevde att de saknade vägledning av sjukvårdspersonalen, och de hade en känsla av att de förlorade sin föräldraroll.
Dessa två delstudier ledde fram till den tredje studien med syftet att jämföra tarmrengöring vid användande av PEG och natriumpikosulfat (NaPico) samt barnens tolerans och acceptans av dessa. Studien genomfördes som en randomiserad kontrollerad studie. Totalt erbjöds 84 barn och föräldrar att
delta och 72 barn med medföljande föräldrar deltog i undersökningen. Den undersökande läkaren bedömde tarmens renhet med hjälp av ett instrument. För att mäta barnens tolerans respektive acceptans användes två olika enkäter. Totalt 71 barn genomgick koloskopi, varav 67 protokoll fanns tillgängliga för analys gällande tarmrensningskvalitet. Alla koloskopier kunde genomföras. Statistiska beräkningar visade att det inte fanns någon skillnad mellan grupperna gällande renhet; dock tolererade och accepterade barnen NaPico signifikant bättre, utifrån såväl barnens som föräldrarnas svar. Denna studie hade ett relativt lågt antal deltagare, varför NaPico endast kan rekommenderas som ett möjligt alternativ till PEG.
Den fjärde studien syftade till att belysa barnens levda erfarenhet av att ha sjukdomen IBD. Fenomenologisk hermeneutik användes som analysmetod då intervjuer med sju barn (tre flickor och fyra pojkar) mellan 13 och18 år analyserades. De svårigheter barnen upplevde i det dagliga livet var framför allt baserade på sjukdomens oförutsägbara och okontrollerade karaktär. De strävade efter att känna sig friska och ville upplevas som friska av sin omgivning. Barnen kopplade helt och hållet sin sjukdom till tarmen och inte till sig själva som individer. Sjukdomen påverkade barnens liv negativt, men barnen berättade också att de bemödade sig om att återskapa den balans som gått förlorad på grund av sjukdomen.
ACKNOWLEDGEMENTS
This thesis was carried out at the Department of Care Science, Faculty of Health and Society, Malmö University, and I am grateful for the opportunity to write it. I would like to extend my warmest gratitude to everyone who has had any part in this work, but first and foremost to all the children and their parents who contributed with their participation. I would also like to express my sincere gratitude to the following persons:
My supervisor, Professor Ewa Idvall, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for believing in me and letting me grow through my research education, and for your valuable critique when reading my manuscripts and discussing them with me.
My co-supervisor, Senior Lecturer Ann-Cathrine Bramhagen, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for your encouraging words and support. I was often beset by doubts, but you never doubted me. Thank you for your valuable critique and our discussions, and thank you for being with me.
My co-supervisor, Senior Lecturer Anne Wennick, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for sharing your knowledge with me and for your valuable critique.
My co-author, Associate Professor Daniel Agardh, Children’s University Hospital, Malmö. Thank you for your support and speedy, valuable comments, and for believing in me and my ideas.
My contact person and colleague, Anna Andersson, thank you for your important assistance with my studies, especially regarding study III.
Professor Per-Anders Tengland, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for being generously supportive throughout the analysing process of the data in study IV.
Professor Ania Willman, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for reading and commenting on paper IV.
Elisabeth Carlsson and Mia Hylén, thank you for taking the time to read and comment on my thesis and for helping me to get in the right direction with it.
Håkan Lövquist, thank you for your help with the statistics in paper III. Katarina Graah-Hagelbäck, thank you for your careful proofreading of parts of this thesis.
Karin Örmon, my colleague, roommate and dear friend, thank you for all your support. You are very valuable to me.
My doctoral colleagues Jenny, Annika, Mona, and Christel, thank you for all our discussions, your constructive criticism, and your confidence in me during this time. Special thanks to Annette Holst-Hansson, my doctoral colleague, my friend, and my companion in many courses. Thank you for all the moments when we laughed and cried together, and for being a nice and supportive friend through all these years.
My colleagues at the Faculty of Health and Society, thank you for your interest in my work. Special thanks to Marianne Kisthinios, Anne-Marie Wangel, and Anna Carlsson for all our precious coffee breaks and for being there and listening; to Monzer El-Dakkak and Vedran Boskovic for IT
My dear friend Margareta Jalmtorp, who is with me in spirit, thank you for being my friend.
My wonderful friends, Zeljka and Tomislav Josipovic, Lejla and Emir Hadjihasanovic, Yvonne and Carl-Gustav Christenssen, and the Kovacevic family, thank you for being there and enriching my life.
My parents, Maja-Antonija and Sefik Alajbegovic, thank you for always being there and believing in me. My wonderful sister and my best friend, Sanja, and her family, Milorad-Bato, Srdjan, and Aljosa Remetic, thank you for being such an important part of my life, for believing in me and listening. I love you! Finally, but most especially, my children Sasa, Dino (my angel) and Denni, thank you for your love and belief in me. Thank you Dino for showing me which way I need to go. My love for you is eternal. My daughter-in-law Silvia Marinkovic, my grandchild Stella, and my bonus grandchild Danilo, thank you for enriching my life. Last in this thesis but first in my heart, the love of my life Asim Lola Vejzovic. Thank you for all your infinite love and patience. I love you all!
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