Universitas Indonesia Conferences, The 4th International Conference for Global Health (ICGH)

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Participation in health care decisions for children with leukemia
Siew Pien Lee, Siti Roshaidai Mohd Arifin

Last modified: 2019-09-01

Abstract


Introduction: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. 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.

Results: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, and being able to make their own decisions. The degrees to which children participated in decisions fluctuated throughout the course of their hospitalization; moving from lesser degrees of participation to greater involvement and vice-versa.

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.