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.