Experiences versus Expectations for Service Provision for Children with Complex Medical Conditions. Implications for Educational Psychologists

This research had two main purposes, to build up a theoretical model of the
experiences and expectations of children with CMC and their parents and also
to understand the implications of these findings. The key conclusions arising
from this study are around the importance both individual systems and the
interaction of those systems around the child can have a positive or negative
influence on future development. Adults generally change emotional and
psychological state as time goes by and they move through stages as they
come to terms with the impact on their children's and their own lives.
The interaction of these findings has serious implications for service provision
in a practical sense, specifically in regard to the educational system, but also
in wider terms, whereby the 'child centred approach', followed to the exclusion
of other systems, could actually turn out to be harmful as the needs of the
parent could be ignored. In explanation, solely focussing on the needs of the
child, especially the physical needs, risks excluding thought around the needs
of the parent, who may not be able to adopt the role that is assumed by wider
society and by service providers. This approach in itself then negatively
impacts on the child's development. Support for the parent, in addition to
direct support for the child, could truly be argued as helping the child. A parent
with adequate coping mechanisms seems more likely to be able to advocate
and support the child effectively.
The practical implications drawn from the research are to ensure that
organisational support is inclusive of the parents, and is also directed at their
needs around information and emotional support. In regards to the practice of
the educational psychologist, this includes observation of wider systems,
information brokering, expectation management and being a gatekeeper to
specialised services. [from Conclusions in absence of an author abstract]

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