Children's participation in decisions regarding their nursing care: an ethnographic study of children, parents and nurses in the oncology setting

Abstract

Background: The rights of children to freedom of expression and receiving information are underpinned by Articles 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC) (1989), which was ratified by the Malaysian government in 1995. There has been increasing shifts toward recognising the importance of children’s rights with many initiatives to realise and uphold the rights of children in Malaysia. However, no previous studies of children’s participation have been conducted in Malaysia. The aim of this study was to explore children’s participation in decisions regarding their nursing care from the perspective of the children, their parents, and nurses in an oncological ward in Malaysia. Methods: This was a focused ethnographic study. Participant observation was carried out with 61 participants (21 children, 21 parents, and 19 nurses) in the paediatric oncology-haematological ward, Malaysia. Semi-structured interviews were conducted with 21 participants (6 children, 7 parents, and 8 nurses). The existing documents pertinent to the research focus were examined to validate the participant observations and interview findings. Data were analysed using Roper and Shapira’s (2000) focused ethnographic data analysis techniques. Findings: There were different degrees of the participation of children in decisions among children diagnosed with leukaemia, including: being physically present, being informed, being consulted where children can express their wishes and opinions during the provision of nursing care, and being able to make their own decisions in relation to their nursing care. The degrees to which children participated in decisions fluctuated throughout the course of their hospitalization; moving from lesser degrees of participation (passive participant) to greater involvement (active participant) and vice-versa. The extent to which children participated in decisions were significantly influenced by the children’s preferences for participation. The preferences of children also fluctuated over the course of their illness and treatment. There were several factors contributing to children’s participation in decisions including; i) interpersonal relations in the child-parent-nurse interactions; ii) experiences of the child (veteran or novice); iii) attitude of nurses; iv) parental role; and v) the ward policy. Conclusion: The children want to be involved and really appreciate participation in communication and decisions but their opportunities for participation are somewhat limited. This study calls for a flexible model to assess children’s preferences for participation and different forms of participation for children in relation to decision-making in paediatric oncology.