Slipping through the Policy Cracks: Children with Chronic Illness in Early Childhood Settings
Ashton, Jean, Bailey, Jeff, Australian Journal of Early Childhood
The importance of the early years for children's cognitive and social development is unquestioned, especially in light of recent brain research (Schiller, 2001). Early intervention for children with disabilities is also thought to be essential (Hardiman, 2001) to mediate many of the problems associated with physical and intellectual impairment, to support the later integration of children into mainstream schooling and ultimately as fully functioning members of society. Frequent absences from early childhood services, periods of hospitalisation, decreased energy and motivation as a result of their conditions, all place children with chronic illnesses at risk, socially and academically. Rarely, however, are chronic illnesses perceived as disabling to the same degree as physical or intellectual impairments; therefore, provision for their support is missing from most policies and only infrequently addressed in early childhood settings.
Defining chronic illness
Chronic illnesses are long-term or permanent conditions that interfere with ordinary physical, psychosocial, or social functioning. Defined as non-pathological alterations, they are typically characterised by a range of factors including permanence, residual disability, the need for special training for rehabilitation and long periods of supervision or care (Chronic Illness Alliance, 2002; National Commission on Chronic Illness, 1956, cited by Hymovich & Hagopian, 1992). The presence of a chronic illness may persist over a substantial period or for more than three months in any year, and can require ongoing periods of hospitalisation (Chronic Illness Alliance, 2002; Pless & Douglas, 1971; Pless & Pinkerton, 1975; Thompson & Gustafson, 1996).
Children whose medical conditions qualify as chronic illnesses may have kidney, liver or heart disease, metabolic problems and/or a wide range of birth defects. Other conditions include cystic fibrosis, diabetes, haemophilia and severe asthma and some of the unresolved respiratory problems associated with low birth weight. Muscular dystrophy, childhood cancers, head trauma, seizures, spinal cord injuries and paediatric AIDS are all chronic illnesses found amongst young children (Stein, 1989). Even though chronic illnesses vary in stability and predictability, they may limit children's functioning and require specialised medical care and/or ongoing regularised treatments (Eiser, 1993; Faux, 1998).
During the past 40 years medical advances have prolonged the life expectancies of many children with chronic illnesses (Faux, 1998). The identification of children's chronic illness has been facilitated by improved early diagnosis and treatment, which have given an expectation of life to children who previously died in infancy or childhood (Faux, 1998). For example, while the median survival age for a child with cystic fibrosis was 11 years in 1966, by 1993 it had risen to 29.4 years (Cystic Fibrosis Foundation, 1992, in Broome, Knafl, Pridham & Feetham, 1998). Also, Faux (1998) notes that new categories of chronically ill children have been created through the use of advanced technology. In some cases, organ damage can even be repaired at the foetal stage, in utero.
While there are no precise figures, estimates reveal that around two per cent of the total child population of North America have a severe chronic illness and a further three per cent have multiple chronic conditions (Newacheck & Stoddard, 1994). Based on North American statistics, on a per capita basis, Shiu (2001) estimates that approximately 17,000 children in the 4-17 age range, living in the Sydney region, have chronic conditions and a further 25,000 children have multiple conditions.
The importance of early development
Given the rate of change in development and abilities during children's early years, the impact of chronic illness should not be underestimated. …