Vardagslivet består, för de flesta sex-åriga barn, av en mängd situationer och aktiviteter som ofta är komplexa i sin natur t ex lek utomhus med kompisar, middag med familjen, simskola och Tv-spel med syskon. För att fungera i dessa situationer behöver barn utveckla färdigheter, anpassade för aktiviteten och för miljön där vardagssituationen äger rum. Barn behöver också fungera i interaktion med andra och uppfylla de sociala roller som förväntas utifrån ålder, mognad, social och kulturell miljö. Barn födda för tidigt har i ett fler- tal studier visat ökad risk för kognitiva och motoriska svårigheter och bete- endeproblem vilka kan ha betydelse för vardagsfungerandet.
Det övergripande syftet med avhandlingen var att undersöka vardagsfun- gerande hos sex-åriga barn födda för tidigt. Avhandlingen inkluderade stu- dier om föräldrars uppfattningar om sina barns vardagsfungerande, samband mellan riskfaktorer förknippade med för tidig födsel och vardagsfungerande (studie I), mönster av vardagsfungerande (studie II), barnens uppfattningar om egen kompetens i vardagsaktiviteter (studie III), samt barnens uppfatt- ningar och beskrivningar av betydelsefulla vardagssituationer (studie IV). Genom insamling av data från nationella register, föräldraenkäter, ett bildba- serat intervjuverktyg samt intervjuer utifrån barnens egna fotografier rörde sig avhandlingen från ett gruppbaserat perspektiv till ett individbaserat per- spektiv och från ett barnperspektiv till barnets perspektiv. Totalt deltog 144 barn födda för tidigt, 222 barn födda i fullgången tid och barnens föräldrar. Resultaten visade att de flesta föräldrar uppfattade att deras barn hade ett gott vardagsfungerande, med goda färdigheter i motorik, kommunikation och interaktion med andra och med små beteendeproblem. De barn som var mycket för tidigt födda, uppfattades ha mer svårigheter i sitt vardagsfunge- rande jämfört med de fullgånget födda. Trots det visade resultaten att för ti- dig födsel har mindre betydelse för barns vardagsfungerande än beteende- problem såsom hyperaktivitet. Barn födda för tidigt och barn födda i full- gången tid fanns representerade i de sju identifierade variationsmönster av vardagsfungerande, de flesta barn med mönster av starkt vardagsfungerande. Ett mindre antal, både barn födda för tidigt och barn födda i fullgången tid,
63
uppvisade mönster av svagt vardagsfungerande. Trots att olika faktorer (fär- digheter, beteende, förmåga att interagera) var framträdande i mönstren, är det troligt att det är interaktionen mellan de olika faktorerna som är avgö- rande för barns vardagsfungerande. De barn födda för tidigt som deltog i en utav studierna, beskriver sig själva som skickliga i de flesta vardagsaktivite- ter. Barnen uttryckte att betydelsefulla vardagssituationer är att göra saker, själv eller med andra och på olika platser. Barnen beskrev också vikten av ha ändamålsenliga färdigheter och att ha personer eller husdjur att vara med och känna sig älskad av. De uttryckte längtan efter att få göra mer saker, få lära sig nya färdigheter och bli skickligare i andra. Resultaten i avhandlingen vi- sar att också vardagsfungerande bör inkluderas i uppföljningen av barn födda för tidigt och omfatta riskfaktorer så väl som beteende- och omgiv- ningsfaktorer. Förskolebarn födda för tidigt har förmågan att reflektera över sitt eget fungerande och kan uttrycka behov och önskningar för att vara del- aktiga i vardagssituationer, därför bör även unga barn tillfrågas och inklude- ras i planering av kliniska insatser som rör deras vardagsliv.
64
Acknowledgements
I would like to express my sincere gratitude to all of those who, in different ways have inspired, supported and contributed, during the years, to making this thesis possible. Especially I send my thanks to:
All the children and their parents who shared their perceptions and thoughts about everyday functioning, making this work possible and giving the most important insights. I am especially grateful to the children who in a generous way, in their photographs and stories, let me in to the multidimensional eve- ryday lives of six year olds.
My main supervisor associate professor Lena Almqvist for your support and inspiration. You have encouraged me to appreciate the small nuances and the complexity of research. Thank you for patiently teaching me to respect the research that I, in moments of despair, rejected as insignificant, and for intro- ducing exciting theories, models, research approaches and statistical analysis. My co-supervisor professor Lene Martin, thank you for giving me this oppor- tunity and including me in the project. I do appreciate your generosity in let- ting me influence the design of the thesis and your firm yet encouraging ques- tions, comments and for your knowledge in the art of scientific writing. My co-supervisor Katarina Strand Brodd for sharing your scientific and clin- ical knowledge. I admire your warmth in the meeting with all the children and your fantastic ability to make parents proud, letting them know their children are “the best in the world”.
I am truly grateful to the School of Health, Care and Social Welfare at Mälar- dalen University for, in collaboration with Landstinget Sörmland, providing me the opportunity to conduct my research studies.
A special thanks goes to Maria Harder, co-author in study IV, who, though it was time for holiday, shared her knowledge and time in qualitative analysis and writing. We had interesting discussions and a lot of laughs!
65 Associate professor Maja Söderbäck, professor Imelda Coyne, associate pro- fessor Jakob Håkansson and the research group ChiP4 for your helpful review
of my work during these five years.
I also would like to thank Eva-Maria Annerbäck, Fou-centrum/CKFD, Land- stinget Sörmland, for your support in this new collaboration between Mälar- dalen University and Landstinget Sörmland.
My fellow doctoral students at the School of Health, Care and Social Welfare, and especially to Anna Ståhlberg, Camilla Ramsten, Caroline Eklund, Linda Sellin, Maria Elvén, and Rose-Marie Johansson-Pajala with whom I have shared both ups-and-downs.
Åsa Snöljung and colleagues at the Department of Physiotherapy, Mälardalen University who embraced me to their team.
The neonatal team at the paediatric clinic, Mälarsjukhuset, Eskilstuna, and particularly to Anna Viltling, Malin Paulsson, Maria Carlsson and Martina Dube, and a special thanks to Tuija Nordberg who helped me identifying the children for study III and IV.
A special thanks to Camilla Lillefors for your fantastic pictures
My dear mother and my late father who always have been there and wished the best for me.
My husband and best friend, Andreas, for your patience, encouragement and belief in me. You have supported me by reading, commenting, interpreting and transcribing my texts, by discussing concepts, methods and statistical analyses and by giving me time to loose myself in the project. Most of all, I thank you for your sincere and generous love and all the fun we have together. And finally, Johanna, Clara, Alva and Ebba, my dear and beautiful daughters. My research expedition really started ten years ago when you were just young elementary school girls. With strong everyday functioning, taking great re- sponsibility for yourselves and our family, you have contributed with skills in language, cooking, dancing, medicine, and writing and above all with joy and love!
66
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