Parental participation in paediatric surgical care. Clinical, ethical and economic considerations

Abstract: In order to deliver optimal paediatric care, we need to know what children and their parents need, expect, and experience. Thus, the general aim of the studies upon which this thesis is based was to elucidate different aspects of parental participation in the care of their child during hospitalisation for paediatric surgery, a specific aim being formulated for each of the four studies. The aim of the first study was to determine the extent to which parents of hospitalised children participate in the care of their child, and to compare parental and professional views on increased parental participation. The study showed that parents stay together with their hospitalised child and often participate in basic care. Parents (n=40) and professionals (n=44) agreed that parental participation could be increased, providing parents were given instruction and guidance. However, professional and parental opinion differed as to which nursing tasks were appropriate for parents to take on. The aim of the second study was to gain increased knowledge and understanding of parental experience of hospitalisation, and to identify and analyse situations described by parents as problematic. Findings at qualitative interviews (n = 20) generated three hypotheses. The participation is dependent upon the strategy a parent adopts in order to feel secure, the participation influences the child's experiences concerning pain and sleep, and the participation would be increased by giving parents more information about care, and by giving guidance as to their possible roles. Some problematic situations defined by the parents were identified, analysed and discussed. The aim of the third study (involving 331 parents) was to test two of the hypotheses at two hospitals. The results confirmed a pattern, developed in the previous study. The aim of the fourth study was to assess possible benefits and costs of increased parental participation in the care of children undergoing surgery at a day-care unit. By giving parents increased information about their child's care and strengthen their parental role parents took a greater responsibility for their child's postoperative care. Children in an intervention group (n=92) had a better postoperative outcome in terms of earlier discharge and less postoperative inconvenience than children in a control group (n=88). The costs for utilising nursing personnel were reduced by 11%. This new knowledge can be used to develop appropriate and effective routines enabling an optimal care for each hospitalised child.