What is a chronic health condition?
DEFINITION - A chronic health condition can be described as one that:
1. Lasts longer than 3 - 6 months
2. Is biologically based
3. Has a significant impact on the life of a person, and
4. Requires more than usual access to healthcare services for support.
(There are more detailed definitions available on CLAN's website for those who are interested).
In children, chronic health conditions cover the full spectrum of medical knowledge and endeavour. There are different ways of describing chronic health conditions (or sometimes "diseases") that affect children, and they may be classified as:
- Congenital - meaning a child is born with the conditions (eg Down syndrome; hypothyroidism)
- Acquired - meaning a child develops the condition at some time after birth (eg Type 1 Diabetes; epilepsy)
- Preventable - meaning the child could possibly not have acquired the disease if a specific action had been taken to stop it (eg HIV; traumatic injuries)
- Non-Preventable - meaning there is nothing that could have been done (that we yet know of) to stop the child from having the condition (eg Autism; Congenital Adrenal Hyperplasia)
- Communicable - the chronic disease is somehow infectious (eg HIV, TB)
- Non-Communicable - the chronic condition is not infectious in any way (eg Asthma and epilepsy)
So what is the world doing about chronic health conditions for children?
The 2011 UN Meeting on Non-Communicable Diseases (NCDs) is an opportunity to talk more about the importance of including children in policies that will strengthen health systems and take a sustainable, intergenerational, lifecycle approach to the prevention of NCDs. Please find out ways that you can get more involved in raising the profile of children!
Maybe you know a child with a chronic health condition?
If you stop and think about all the people and families and children you know, it is almost certain you will know a child with a health condition that lasts longer than 3 months... asthma, diabetes, epilepsy, cerebral palsy, down syndrome, cancer, autism... these are all common examples.
It is worth taking a moment to think about this person you know some more... If they live in a high-income country (like Australia, England, America, Singapore), chances are this child is enjoying a quality of life on par with the best that can be achieved with that particular health condition. Their life will be fulfilling and meaningful, and they will be living to their full potential. Their basic rights are being respected.
If that child lives in a low-income country, chances are their quality of life and prognosis are much, much different. Children in resource-poor settings do not enjoy the same access to health care, medication and support, and as a result the chronic health condition they live with takes a much greater toll on their young body and ultimately on their life.
Why aren't chronic health conditions of childhood in resource-poor countries talked about more by world leaders?
Why don't we hear much about children who are living with chronic conditions such as Asthma, Autism, Diabetes, Down syndrome, Congenital Heart Disease, Hypothyroidism, hearing loss and visual impairment in resource-poor countries from world leaders and policy makers?
Well, to begin with, there is an erroneous perception that it's not a big problem. Discussions focus on acute illness, and there is sometimes the erroneous attitude that chronic conditions aren't a major problem. CLAN has often heard the mantra "it's all too hard, and developing countries are in such a terrible state of affairs anyway that it's not worth getting into this level of detail yet". This is a very short-sighted approach. Not only can the rates of chronic conditions in low-income countries be as high as - if not higher than - in high income countries (eg HIV, TB and some cancers), but also the combined burden of illness from all chronic conditions that affect children is enormous! The reality is that until action is taken to help health systems in low-income settings deal more effectively with chronic conditions, all children with any chronic condition will suffer unnecessarily, with families left to manage on their own with very little support.
Perhaps another major reason chronic health conditions in children are neglected is the terminology that is used. When governments and policy makers talk about "Chronic Disease" they can fall into the trap of neglecting to discuss children, and assume that the chronic disease discourse refers only to lifestyle disease and is only relevant to adults. There are two problems with this approach:
- Firstly, lifestyle diseases are amongst the most common chronic diseases in the world (and include things such as obesity, high blood pressure and Type 2 Diabetes), and whilst these particular chronic diseases may initially seem much less relevant to children than adults - afterall, these diseases take many, many years to develop - and are not the major causes of suffering and disability in children when it comes to chronic health conditions, the simple fact is that they all start in childhood! If society is not protecting our children from the very risk factors that cause these conditions (unhealthy foods, lack of exercise, tobacco and alcohol) then it is almost certain our children will develop lifestyle diseases in the future. A lifecycle approach to preventing lifestyle diseases of adults means that it is essential to include children in all chronic disease policies.
- Secondly, "chronic disease" (as we saw from the definitions above) means more than just "lifestyle disease". A chronic disease is any condition that lasts more than 3-6 months, is biologically based, has a significant impact on the life of a person, and requires more than the usual amount of health services for support. Children are affected by a huge range of chronic health conditions and health systems must be able to manage these conditions in sustainable, effective ways. Indeed, there is a "golden window" in the early childhood years where a small input into a child's environment and development can have a profound impact on the future health of a person over their entire life. Whilstever the chronic disease discourse focuses exclusively on lifestyle diseases in adults, there will continue to be a systematic failure of health policies to address the special needs of children with chronic health conditions.
Another reason why children with chronic health conditions in resource poor settings are not discussed a lot is because of an imbalance of power. Families of children with chronic health conditions in resource-poor settings often spend all of their time, energy and money looking after their children - they do not have the power to advocate for themselves or their children. Chronic conditions of childhood have a very serious impact on family budgets, because parents are willing to spend everything they have to save their children... Sadly, bankrupting the family is rarely enough to save the children, and once a child dies their story is also lost forever...
NCD Child ( www.ncdchild.org) is an emerging international platform for advocacy and action around the issues facing children who are living with chronic health conditions in resource-poor settings, and there have been some encouraging steps forward in recent years. For instance, the second edition of the WHO's Pocket Book of Hospital Care for Children now includes information on chronic conditions (such as Asthma and Rheumatic Heart Disease); UNICEF plans to include a chapter on NCDs in their iconic Facts For Life series; and the recent resolution on NCDs from the 66th World Health Assembly (May 2013) specifically acknowledges Asthma, Rheumatic Heart Disease, Type 1 Diabetes and Leukaemia as NCDs that affect children.
Nonetheless, there is more work needed to systematically deal with longer-term health conditions that afflict children everywhere.
It is time for the international community to take a serious look at how the massive global inequity that exists for children living with chronic health conditions in resource-poor settings is going to be sustainably and effectively redressed.
These children all have the same chronic health condition...
They are a community of people who need the world to hear their voices - now!