Children's participation in decisions regarding their nursing care: an ethnographic study of children, parents and nurses in the oncology setting
dc.contributor.advisor
Haycock-Stuart, Elaine
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dc.contributor.advisor
Tisdall, Kay
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dc.contributor.author
Siew Pien, Lee
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dc.contributor.sponsor
other
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dc.date.accessioned
2018-05-30T13:12:04Z
dc.date.available
2018-05-30T13:12:04Z
dc.date.issued
2018-07-03
dc.description.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.
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dc.identifier.uri
http://hdl.handle.net/1842/31008
dc.language.iso
en
dc.publisher
The University of Edinburgh
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dc.subject
children
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dc.subject
parents
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dc.subject
nurses
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dc.subject
decisions
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dc.subject
participation
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dc.subject
ethnography
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dc.subject
Malaysia
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dc.title
Children's participation in decisions regarding their nursing care: an ethnographic study of children, parents and nurses in the oncology setting
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dc.type
Thesis or Dissertation
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dc.type.qualificationlevel
Doctoral
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dc.type.qualificationname
PhD Doctor of Philosophy
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