When an HIV baby lies still, seemingly content with the world, it doesn't mean he isn't in pain.
The child simply can't muster up the energy to voice the agony he is in.
While his body is plagued by infection upon infection, the child can only lie still, silently accepting what comes his way.
But when you look closer, when you touch him, when you give him a hug, you'll find that his body is laced with signs of tension. Clenched fists, crossed legs, shallow breathing, a fluttering heart – all clues to the pain he suffers.
The pain can now be measured
Thanks to groundbreaking work done by a South African researcher, the pain suffered by babies and children, both here and abroad, can now be measured by means of two simple scales.
These scales enable doctors to recognise pain, assess it and manage it effectively in children, who otherwise wouldn't have had a voice.
Dr Rene Albertyn, researcher at the Red Cross Children's Hospital in Cape Town, is being recognised worldwide for the development of her so-called Touch Visual Pain Scale (TVP) and PEDHIV Scale.
The TVP scale, the first of its kind, cuts across all language and culture barriers. It uses touch and observation to assess not only a child's pain, but also any anxiety or discomfort that he may experience.
Years of hands-on experience with HIV-positive babies and children, and children who have suffered burn wounds, led to this important breakthrough.
Photo: Dr Albertyn at work at the Red Cross Children's Hospital (Source: Die Burger).
Children 'didn't have pain'
Paediatric pain isn't a new concept. As far back as 1968, researchers were writing about pain in children.
But, back then, the conclusion was always that children simply didn't experience pain – at least not post-operatively. Experts reckoned that children's neurological systems simply weren't sufficiently developed.
It became a situation of: "If the child can't tell you he has pain, he doesn't have pain," Albertyn says.
Only recently, researchers started to realise that this assumption simply didn't hold true.
As a result, the management of paediatric pain became more of a priority in developed countries. Pain scales started to emerge, and dedicated pain units became a fixture in many hospitals.
Pain in Africa
But, for the past few decades, African children have not benefited from the progress made in developed countries.
Despite the fact that a number of adult pain clinics are available in South Africa, similar support have not been available to the young child - neither here nor elsewhere on the African continent.
The problem is that, in Africa, the languages and cultures are simply too diverse. Pain is communicated in hundreds of different ways.
Due to this cultural and language diversity, the African child's insight into pain is vastly different to that of the child who grows up in a developed country, according to Albertyn. In these countries, one or two cultures usually dominate.
In countries such as Britain, the USA and Canada, children are exposed to television, music etc from very early in life. This means that these children talk about different aspects of life – including pain – very differently than children who aren't exposed to these factors.
"The result is that, when we, as African health professionals try to use a pain scale developed in a developed country, it simply doesn't work. It's like trying to learn how to drive by reading a book, without getting any practical experience," Albertyn says.
Instead, "you almost need to feel the child's pain in your soul before you can evaluate it. It took me 15 years to be able to do it".
Albertyn's work recently led to the development of the first comprehensive paediatric pain unit in South Africa and on the African continent. This unit is at the Red Cross Children's Hospital.
Pain vs. anxiety
She explains that pain is made up of two separate components: on the one hand, physical pain; on the other, a psychological component, which manifests as anxiety.
"You can't separate the two. Where the one is, there is the other," she says.
This is another area where African children differ from their overseas counterparts. "My kids don't only have pain; they also have anxiety. And these two factors must be treated separately."
In her search for a pain scale, Albertyn found that most overseas scales focused merely on the different aspects of pain – for example, its intensity, location and duration.
"I simply don't have the time to measure all of those factors. For me, it is more important to establish whether the medication prescribed to the child is working, or not," she says.
Focus on effectiveness of treatment
Apart from pain and anxiety, Albertyn recognises that the child's level of discomfort can also play an important role, and that this should also be assessed.
The first thing Albertyn looks for when she's assessing a new child, is for possible causes of discomfort, such as a wet nappy, hunger, and thirst.
Only when these factors are ruled out, does she start to consider the child's pain and anxiety – and whether medication is really necessary.
The administration of medication isn't a simple process either.
She explains that different medications have different effects on children, and that it takes experience to figure out which one works best.
"It's important to always stay on top of where you are in terms of pain, anxiety and discomfort," she says.
The pain scale
This is where Albertyn's Touch Visual Pain Scale proves to be particularly useful.
The 10-point scale makes provision for signs of pain and anxiety that can be assessed either by looking at the ill child or by touching him.
"In many instances, I can't communicate with the child, so I must use observation," Albertyn says.
Signs of pain and anxiety include an asymmetrical head, verbalisations of pain, facial tension, clenched fists, crossed legs, shallow breathing, and an increased or irregular heartbeat.
When she first assesses the child, she gives a point out of 10 for each of these signs to get the so-called "baseline score".
"I look at what the child's body tells me," she says.
Then, depending on the degree of pain and anxiety, medication can be administered, but only if it is really necessary.
After a period of 20-30 minutes, the child is assessed again, once more by means of the pain scale. If there is no change in these signs, Albertyn knows that she has to try a different approach.
In this way, all the children at the Red Cross Children's Hospital are assessed on a regular basis, and treated accordingly.
A holistic approach
Albertyn notes that medication is only used as a last resort, and that she works closely with reflexologists and aromatherapists to try and relieve pain and anxiety where possible.
"Many of the children are simply in need of physical touch," she says.
She also teaches parents how to use the scale, which gives them a tool to manage their children's pain when they are discharged.
The dying child
This passionate researcher has been witness to many a dying child – an experience she describes as "extremely humbling".
And even here, in the last moments of a child's life, her pain scales have an important role to play.
"I want to let the child die with dignity, something I regard as a basic human right. So, I ask myself, 'Is the child as comfortable as possible?' This can be measured, using a pain scale, after which appropriate treatment can be administered," she says.
"And, yes, it is possible for a child to die without experiencing any pain – if he is treated correctly."
For further information, Dr Rene Albertyn can be contacted via e-mail: firstname.lastname@example.org.
- (Carine van Rooyen, Health24)
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