Definition of Terms Used
What is a chronic health condition?
A chronic health condition has been defined by The Council for Children and Adolescents with Chronic Health Conditions (CCACHC, 2005, ¶ 1) as one that includes four key factors:
2. Lasts for an extended period of time
3. Brings about significant change in the life of the child, and
4. Requires more than the usual amount of medical care.
The duration of a chronic health condition is generally accepted as being longer than 3 months, and often persist for a lifetime.
A chronic health condition "is either not curable or has residual features that result in limitations in daily living requiring adaptation in function or special assistance" (Schwab & Gelfman, 2001, p. 609).
Chronic conditions generally require ongoing, continuous treatment. Children with chronic health conditions may be well or ill at any given time, and should ideally have access to quality healthcare to ensure opitmal ongoing management of their health condition so as to enable them to enjoy the highest quality of life possible with their particular health condition.
In resource-poor countries, children with chronic health conditions experience an inequitable burden of illness. Some factors contributing to this include:
- lack of global awareness of the difficulties facing children with chronic conditions
- systematic exclusion of children from global health policies (particularly those relating to chronic disease)
- strong association between poverty, disability and death. Financial insecurity prevents affordable access to medicine, equipment and quality healthcare
- health systems in resource-poor settings are not developed to cope with chronic disease in adults, much less children
- social and cultural barriers prevent full integration into society and schools
- children and families living with chronic disease have no power or resources to advocate for change themselves
- when children die, their stories die with them, and the chance for their experiences to inform the world and lobby for change is lost forever
What is a chronic disease?
A chronic disease has been described by the World Health Organisation (WHO) as a disease of long duration and generally slow progression".
Globally, chronic disease is a major cause of preventable disability and death.
By definition, a chronic disease can be experienced by children as well as adults. However, the international chronic disease discourse tends to focus almost exclusively on preventable lifestyle diseases of adults (such as obesity, high blood pressure, Type 2 Diabetes, Cardivascular Disease and smoking related diseases). This systematic exclusion of children from international chronic disease health policy discussions is extremely deterimental to global child health.
What is a disability?
It can be difficult to easily define what is meant by a "disability". Many people who are living with a disability prefer to use the term "differently abled"!
The WHO has defined disability as "an umbrella term covering impairments, activity limitations and participation restriction". Put simply, a disability can refer to any restriction or lack of ability resulting from an impairment to perform an activity within daily living.
There are many different types of disability that people may have, including: physical; intellectual; sensory; neurological; acquired brain injury; psychiatric; presence in the body of disease carrying organisms; being treated as if you have a disability; and dual disability (two of the above including a psychiatric disability).
Chronic disease... chronic health condition... disability....
The terms "chronic health condition", "chronic disease" and "disability" are sometimes used interchangeably, but there are important differences:
- a disability may be caused by a chronic disease or chronic health condition, but a disability is NOT a disease.
- by definition, a chronic disease could equally be referred to as a chronic health condition, but a chronic health condition is not necessarily a disease (eg a person with Down syndrome is unlikely to see themselves as having a "disease" - they have just been created differently). The word "disease" can have very negative connotations for some people. For these reasons, CLAN generally tends to use the term "chronic health condition" rather than "chronic disease"
- some chronic health conditions do not necessarily result in a disability - particularly if they are well managed (eg asthma, diabetes and hypothyroidism) - but without quality healthcare will automatically result in disability and/or death
- by their very nature, some chronic health conditions are always associated with a varying degree of disability (eg spina bifida, Down syndrome)
- disabilities themselves can be further exacerbated by inadequate access to quality care, discrimmination and social isolation
"Chronic disease", "chronic health condition" and "disability" are all labels that need to be used carefully, because incorrect use of terminology can systematically exclude people from policy discussions (as we see in the current global chronic disease discourse, where children with chronic health conditions are almost never discussed). So it is important to understand the terminology and use it properly wherever possible.
Most important of all though, we must ensure children with chronic health conditions and disabilities are systematically INCLUDED in all future policies.