An exploration of the UK carer world

Life-limiting/threatening illnesses - research

From a doctoral thesis

This area of research has been confounded by problems of definition and the semantics of 

whether conditions are life-threatening or life-limiting. The latest contribution proposed 

is that a life-threatening illness is one where there is a possibility that a medical 

intervention might prove successful (even if the treatment poses a threat to life). 

LLCs are those for which there is currently no available cure and the condition is likely to lead 

to the child dying prematurely. In practice, the distinction is often arbitrary since an 

individual child may oscillate between the two definitions especially during acute 

exacerbations of the illness, for example in children with cystic fibrosis. 

For the purpose of this thesis a LLC is defined as:  

Any illness or condition developed in childhood whereby the 

child is likely to die before adulthood or with a limited 

expectation of life thereafter. Alternatively, any condition 

developed in childhood that, without intervention, will cause a 

child to die prematurely (NHS Executive 1998:5). 

p 14 here


palliative care mentioned 62 times in the document


In the Biblio but not found in the above text:

Nyatanga, B. (2005) Adapting to death, dying and bereavement. In Faull, C., Carter, Y. & 

Daniels, L. (Eds) (2005) Handbook of palliative care. London: Blackwell. Google   pdf  p98


Community children’s nursing services in the 21st century

Every Child Matters provides a major opportunity for developing services that ensure the health and social care needs of children with complex care needs are met, as Joan Myers explains

Community children’s nursing (CCN) services here in the UK here have evolved in an ad hoc way to respond to local needs, with no national strategic planning or commissioning (RCN 2000). The first few CCN teams in Rotherham in 1949, Birmingham and Paddington in 1954, Southampton in 1969 and Gateshead 1974 were originally developed to care for children with acute infectious diseases or short-term conditions (Muir and Sidey 2000). CCN services grew slowly at first, and by the late 1980s there were 24 teams (Whiting 1988).  source  links added

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