An indepth study over time on the effect of child and parent factors on the perceived quality of life of children treated for brain tumour or for leukaemia (Dr. Colin Kennedy)
3 Year Funding of £87,490.34
2004-2007
Joint funding by SDBTT & UKBTS
Previous studies of the psychosocial consequences for the child and their parents of childhood cancer have used a variety of methods focusing mainly on negative outcomes of the cancer experience. On the whole these studies have found that children and parents cope well with the cancer experience. However, few of these studies focused on children with brain tumours even though they may well differ from children with other types of cancer in terms of the effectsthe tumour and treatment have on their lives.
Children and parents do not necessarily share the same views on the impact of the cancer experience. It is important to try to understand why that is and what effect such a difference in perspective may have on the child's quality of life. It is possible that parental distress negatively affects parents' perceptions of the child's emotions and behaviours. It is therefore helpful to get a more independent view of the child by asking a teacher about the child. Parental distress may also have an effect on the child's well being. When studying the child's quality of life, it is important to find out how parents perceive the cancer experience and to find out whether this reflects a general attitude or just a passing phase. It is also important to assess parental coping strategies as these may have a mediating effect on not only their own quality of life but also their child's quality of life.
One of the problems with using standardized questionnaires is that they may not be sensitive enough to detect subtle effects of the cancer experience. Also, if done on only one occasion, the answers may only reflect how the child is at that moment in time but the effects of the cancer and its treatment on the child may well change over time.
A method of investigation that has been largely neglected is the interviewing of participants which allows the researcher to find out how the cancer experience has affected quality of life but from the participant's own point of view. People may be inclined to be more truthful during a face to face interview rather than on a questionnaire, and this method could help to provide a deeper understanding of the effect of the cancer experience on the child and parent.
This research will study children with three different types of serious illness and their parents over time to see if children with a brain tumour have a poorer quality of life and whether it changes. All this information could then be used to help children and parents who are more negatively affected by the cancer experience.
Process:
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