Transplanted children's experiences of daily living: children's narratives about their lives following transplantation.

Transplantation is often an appropriate choice of treatment for children with end-stage renal, liver, heart or lung disease. Over the last decade, mortality and morbidity figures have been relatively stable and quality of life fairly good in children who have undergone organ transplantation. Few studies however, have focused on the experiences of transplantation from the child's perspective. The child's view is an important factor when evaluating the 'true' outcome and quality of life after transplantation. The aim of the present study was to illuminate the meaning of transplanted children's experiences of daily living. Unstructured interviews were carried out with 18 children and adolescents, aged 4-18 yr, who had undergone organ transplantation. Their narratives were transcribed and interpreted using a phenomenologic-hermeneutic method inspired by the philosophy of Ricoeur. Two main themes emerged: Being satisfied with life, with the themes: being able to live a normal life; someone who cares; coping with one's new life; and being dissatisfied with life, with the themes: not being able to live a normal life; lacking someone who cares; not being respected; existential thoughts. Most of the children and adolescents were of the opinion that they lived a normal life while the rest strived to achieve a normal life. Social support and mental support were of great importance and, when lacking, had negative consequences. Multi-disciplinary co-operation between healthcare professionals and between the healthcare system, the school and the family is crucial in order to optimize the outcome and quality of life after organ transplantation in children.

Living with ulcerative colitis: experiences of adolescents and young adults.

The problems associated with ulcerative colitis and its treatment have effects on adolescents and young adults dissimilar from as well as more profound than those on older individuals. Adolescents are confronted with problems such as biological, psychological and social changes as well as role changes related to peers and family. This inductive study aimed to describe the adolescents' experiences of living with ulcerative colitis. A total of 28 subjects were asked about their experiences both at the present time and at the time their first symptoms appeared. Verbatim transcribed thematized interviews were analysed according to a method influenced by the constant comparative method for grounded theory. Eight categories were grounded in the data, forming a model which describes the process from onset of disease to present time. The main variable identified was: reduced living space, a strategy to manage the new situation. Dependent on the reactions received from significant others, the outcome for the adolescents hovered between feelings of self-confidence and lack of self-confidence. If the adolescents experienced support, the living space was expanded again. The results might be of great value when caring for and assisting young persons with a chronic disease in general, and in particular when taking care of adolescents with a recently diagnosed inflammatory bowel disease.

Physical health status in young subjects after colectomy: an application of the Roy model.

The aim of this study was to describe the long-term physical health status after colectomy in 30 young subjects with ulcerative colitis, 11 of whom had ileostomies. The subjects, aged between 14 and 31 years of age, were assessed post-operatively for their physical health status. In assessing physiological adaptation in these subjects four basic needs were the foci: nutrition, elimination, activity and rest, and protection. Adaptation problems related to nutrition, elimination, activity/rest and protection were found in four, 17, 17 and three subjects respectively. Nine out of 30 had pain that influenced their daily life. Six out of 30 subjects had no adaptation problems at all. Nineteen subjects found their health to be 'excellent' or 'good' despite the adaptation problems reported.

Incidence and prevalence of inflammatory bowel disease in children in south-western Sweden.

The incidence and prevalence of inflammatory bowel disease were estimated in all children less than 16 years of age living in the city of Göteborg and in three countries in South-Western Sweden, from 1983 to 1987. One hundred and thirty-two patients were classified according to set criteria into one of four diagnostic categories: ulcerative colitis, Crohn's disease, probable Crohn's disease and indeterminate colitis. The crude incidence of inflammatory bowel disease was 5.3 per 100,000 children per year and the prevalence 21.5 per 100,000 children. This study lends support to the hypothesis that Crohn's disease has increased among Swedish children. Crohn's disease now appears to be at least as common as ulcerative colitis. Thirty-five of 55 patients first classified as indeterminate colitis or probable Crohn's disease later fulfilled the criteria of ulcerative colitis or Crohn's disease during a mean follow-up period of 4.6 years. This study emphasizes the importance, in epidemiological studies of inflammatory bowel disease, of including those cases where a definite diagnosis of ulcerative colitis or Crohn's disease cannot be established initially and of re-evaluating the initial diagnosis regularly.

Evaluation of a Swedish version of the Ostomy Adjustment Scale.

The main aim of the present study was to adapt an instrument measuring patients' adjustment to life with an ostomy to Swedish conditions and to test reliability and validity of the adapted instrument. The Ostomy Adjustment Scale (OAS), which is focused on three domains: physical function, psychologic state, and social interaction, was selected as suitable. After translation into Swedish, equivalence and internal consistency of the scale were calculated. Subjects with various types of urine or faeces diversions were recruited for self-rating with the OAS and a visual analogue scale estimating total quality of life (QOL). The instruments were tested in 48 patients with five different diagnoses, 36 with and 12 without ostomy, and re-tests were carried out in 25 of the patients. Reliability (Cronbach's alpha) was 0.95. A positive correlation was found between the OAS and QOL (r = 0.67), indicating that the instrument has some validity.