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Background: Adolescent idiopathic scoliosis (AIS) affects 1 – 3% of all children aged 10 – 16 years; of these approximately 80% are girls. Scoliosis surgery is a major (one of the most extensive) elective paediatric orthopaedic procedure and is known to cause severe and excruciating pain that requires advanced postoperative pain management. Until now, scoliosis surgery has mainly been studied in terms of corrective surgical outcomes, and techniques for surgery and pain management. Adolescents’ narratives and experiences of recovery after scoliosis surgery, as well as psychological aspects in correlation to postoperative pain have seldom been studied.

Aim: The overall aim of this thesis was to explore adolescents’ experiences of undergoing scoliosis surgery, experiences and self-reporting of pain, and psychological consequences.

Methods: This thesis comprises four studies. The participants in Studies I and II belonged to the same cohort, all of whom underwent corrective surgery in the period from 2004 to 2007. In Study I there was a cohort of 87 adolescents and young adults with different types of scoliosis, some of whom had impaired verbal communication. The patients and their parents/caregivers were asked to complete a survey with questions regarding experienced pain, nausea and overall satisfaction with the hospital stay. Study II was a qualitative study in which six adolescents from the cohort in Study I were interviewed. The adolescents included in Study II had idiopathic scoliosis, and the interviews took place about two years after they had undergone surgery. Study III, which included 37 adolescents, was a prospective study of adolescents with idiopathic scoliosis (AIS) from four spine centres in Sweden. They completed two psychometric instruments and one structured interview both before surgery and about six months afterward. They also self-measured pain on the third postoperative day. In Study IV the adolescents included belonged to the same cohort as in Study III. In this prospective, mixed-method study, the participants self-reported pain before surgery, every four hours for the first five days after surgery, once a day for the first fourteen days at home after discharge from the hospital, and finally at the six-month follow-up. They were also asked to keep a diary during the first two weeks at home after discharge from the hospital. At the six-month follow-up they were interviewed about the overall experience of undergoing scoliosis surgery: how they experienced the time before surgery, during the hospital stay and the recovery period up through the date of the interview. iv

Results: Study I showed that the patients experienced severe pain and nausea postoperatively during the hospital stay. The parents/caregivers felt helpless and sometimes lacked confidence in the nurses. Despite this, overall satisfaction with the hospital stay was rated as good. Study II showed that the adolescents experienced nervousness and fear before surgery, severe pain and postoperative nausea and vomiting (PONV) during the hospital stay, had problems with the scars and experienced social difficulties during recovery. Nightmares were reported for up to two years after surgery. In Study III, the ratings of stress symptoms were higher before surgery than after. There were significant correlations between stress symptoms before surgery and levels of postoperative pain. There were also significant correlations between levels of postoperative pain and stress symptoms at the six-month follow-up. In Study IV, postoperative pain ratings showed great individual variation, and in the analysis of drop-outs it was found that those who did not keep a diary at home self-reported higher levels of pain at the six-month follow-up as well as higher levels of stress symptoms and internalizing symptoms. The participants described experiences of severe pain at the hospital and also during recovery. Nausea, constipation and lack of energy emerged from the narratives - but so did the desire to get back to school, sports and friends. The adolescents described how they were hovering between suffering and control and also striving towards normality. Conclusion: The results indicate a need for interventions among adolescent patients to reduce stress symptoms before major surgery. Nurses need to identify adolescents with stress symptoms, use stress-reduction techniques, and support adolescent patients with coping strategies aimed at reducing preoperative stress and managing postoperative pain. Postoperative pain management needs to be improved, both as regards pain assessment and pharmacological and non-pharmacological pain management. Nurses need to improve their medical technical skills in order to optimize pain treatment. After discharge from the hospital adolescents have to struggle with difficulties at home such as pain, nausea, constipation, mobilization and a lack of energy. An intervention with follow-up telephone calls during the second week at home could reduce stress and help resolve difficulties. Since this study indicates stress symptoms at the six-month follow-up, there should also be a nurse interview to check on well-being and to see if any further intervention is needed at that time. If preoperative stress can be reduced, postoperative pain management optimized and the recovery period better supported, the overall experience of going through scoliosis surgery should improve.