Prevalence of Disability in HIV-Infected Children Attending an Urban Paediatric HIV Clinic in Johannesburg, South Africa

This is an article I wrote and was published as a requirement of my MSc Med in Child Health. The full article can be found here.

Prevalence of Disability in HIV-Infected Children Attending an Urban Paediatric HIV Clinic in Johannesburg, South Africa.

Abstract

With the success of evolving cART, HIV has become a chronic condition, however, children vertically infected with HIV have been shown to have developmental difficulties and disabilities. This study aimed to investigate the prevalence of disabilities among a group of HIV infected children in South Africa and whether they are being referred and accessing support services.

A cross-sectional study was conducted at a paediatric HIV clinic in Johannesburg. Parents were interviewed about their child using the Ten Question Screen for Disability questionnaire along with a follow up questionnaire. Data from the child’s clinic file were recorded.

Of the 200 children whose parents were interviewed, 50.5% experienced disabilities, where 58.4% of those had more than one co-existing disability. The most commonly reported disabilities were, developmental delay (27%), cognitive and behaviour difficulties (21%), communication difficulties (17%) and physical disabilities (13%).  Of the children who reported disability only 46% had been referred to one or more of the following support services; Audiologist, Occupational Therapist, Physiotherapist, Psychologist and/or Speech and Language Therapist. A history of low birth-weight, tuberculosis, lower respiratory tract infections and low pre-ART CD4% were found to be factors associated with the presence of developmental difficulty and/or delay.

The prevalence of disability in children infected with HIV is high and these children are not being referred and/or accessing the appropriate support services. Government policy and clinic practice need to shift focus of management of children with HIV, to integrate services that can assist with developmental potential and quality-of-life.

Keywords: word; paediatric, HIV, disability, development, child

What is Developmental Coordination Disorder (DCD)?

Developmental coordination disorder (DCD) what it says it is… a disorder of the development of coordination. There have been many definitions between the scientific and clinical communities which are discussed in depth and at length!

However I like to think of DCD as a deficit in coordination, resulting in delays and difficulties with motor skill development, associated with deficits in sensory processing, psychosocial and language development as well as difficulties with academic performance.

WHAT CAUSES DCD?

Until recently DCD was seen as an idiopathic disorder (meaning no-one knew what caused it!). Historically research has focused on associated risk factors for DCD which include genetic factors, prematurity, increased (fetal) toxin exposure (e.g. cigarette, alcohol, drugs) and maternal stress and depression. Many of these factors can be associated with poor socioeconomic status and as a result poor socioeconomic status is also often linked with DCD.

With the advent of functional magnetic resonance imaging (fMRI) more researchers have explored the aetiology (cause) of DCD, and have recently developed two main theories. The first is “Micro-structural damage to various brain areas and spinal cord” (Zwicker et al 2012 as cited in Ferguson et al 2014, McLeod et al 2014).  The second theory is that of “intrinsic maturational problems of the developing brain and insufficient stimulation of the delayed brain” (Zwicker et al 2012 as cited in Ferguson et al 2014)). It is universally accepted that the Central Nervous System (CNS) (brain & spinal cord) is what controls and coordinates the body, then logically as a disorder of the development of coordination, DCD must be a result of atypical development of the CNS.

By applying the Movement Analysis and Education Strategies approach (Maes 2015) which is supported by Leonard HC (2016) we can deepen our understanding of how a child with DCD develops.

Let’s look at typical development. In typical development, the ability to move in a coordinated manner is the consequence of a number of events that have their foundation on preceding events. The CNS continually coordinates movement from conception to death. As a baby and toddler, the ability of the CNS to coordinate movement allows for the child to explore. By exploring different movement patterns and receiving sensory feedback from these movements; a child develops a repertoire of postural and movement skills. The more skills (increased repertoire) you develop the more options you have of combining these skills to achieve a task. The more combinations you can make, the more tasks you can do and the better and more refined task execution becomes.

In other words; to be able to look typical while doing a task or activity one must have adequate posture and movement skills available which will depend on the coordination ability which in turn depends on an intact CNS. It is a balancing act, where one block depends on the block below and the block above it to maintain stability.

If a typically developing child has not developed an adequate skill set (foundation) for a particular task or activity they can look atypical, until they have developed more complex skills, increased their skill repertoire and refined their selectivity of skills in order to master the task. This concept continues into adulthood. For example have you watched someone trying to learn to ski or snowboard for the first time?

In DCD, as a consequence of this minor damage to the developing central nervous system the child’s brain is unable to coordinate typical patterns of movement. This impacts the way the child learns to develop postural and movement skills, resulting in a poor foundation of skills (e.g. decreased repertoire of movement and postural skills). The particular set of skills that the child develops/learns will in turn affect the way they interact with the environment and engage in tasks/activity/play. As discussed previously, if the child does not have the skill set for environmental interaction and/or the task/activity required they will appear atypical compared with their peers. The way the child engages in tasks will affect how they engage in further, more difficult tasks. As tasks become more challenging (requiring more/different/complex skills), the child will look more atypical because they haven’t developed the correct skill set due to atypical coordination. In other words; the foundation of coordination (CNS) is not working as well as it could resulting in atypical coordination resulting in the child learning atypical movement skill and the child looking atypical during a task or activity as a consequence. If the foundation is unbalanced it will unbalance the whole tower.

The way a child engages in a more difficult tasks depends on how they have engaged in previous tasks (their foundation). As a result, the fall-out of children with DCD is only noticed once the child reaches school-going age as the complexity of tasks a child is expected to perform increases. The more complex the task, the more the deficit becomes more obvious.

In summary, if a developing infant struggles to coordinate their bodies, it will affect the exploration of their bodies and their environment. In turn it will affect how they experience sensory input which will impact their feedback and feedforward systems. If your sensory processing is atypical then the development of motor learning and further skill acquisition is affected (Leonard 2016). Skills could include any form of function from, vision, perception, gross motor skills, fine motor skills, executive function, attention to working memory etc.

REFERENCES
American Psychiatric Association (2013) The Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5). Arlington, VA. Available at: www.dsm5.org (accessed 21/03/16).Anon ( (n.d.))

Astronaut Training: A Sound Activated Vestibular-Visual Protocol. Vital Links. Available at: http://www.vitallinks.net/pages/Astronaut-Training-A-Sound-Activated-Vestibular-Visual-Protocol.php (accessed 29/03/16).

Blank R, Smits-Engelsman B, Polatajko H and Wilson P (2012) European Academy for Childhood Disability. European Academy for Childhood Disability (EACD): recommendations on the definition, diagnosis and intervention of developmental coordination disorder (long version). Developmental Medicine & Child Neurology 54(1): 54–93.

Ferguson GD, Jelsma J, Versfeld P and Smits-Engelsman BCM (2014) Using the ICF Framework to Explore the Multiple Interacting Factors Associated with Developmental Coordination Disorder. ResearchGate 1(2). Available at: https://www.researchgate.net/publication/261409477_Using_the_ICF_Framework_to_Explore_the_Multiple_Interacting_Factors_Associated_with_Developmental_Coordination_Disorder (accessed 28/03/16).

Hamer E, Bos A and Hadders-Algra M (2016) Specific characteristics of abnormal general movements are associated with functional outcome at school age. – PubMed – NCBI. . Available at: http://www.ncbi.nlm.nih.gov/pubmed/26896696 (accessed 29/03/16).

Harris SR, Mickelson ECR and Zwicker JG (2015) Diagnosis and management of developmental coordination disorder. CMAJ: Canadian Medical Association journal = journal de l’Association medicale canadienne 187(9): 659–665.

van den Heuvel M, Jansen DEMC, Reijneveld SA, Flapper BCT and Smits-Engelsman BCM (2016) Identification of emotional and behavioral problems by teachers in children with developmental coordination disorder in the school community. Research in Developmental Disabilities 51-52: 40–48.

Leonard HC (2016) The Impact of Poor Motor Skills on Perceptual, Social and Cognitive Development: The Case of Developmental Coordination Disorder. Frontiers in Psychology 7. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779971/ (accessed 28/03/16).

van der Linde BW, van Netten JJ, Otten BE, Postema K, Geuze RH and Schoemaker MM (2014) Psychometric properties of the DCDDaily-Q: a new parental questionnaire on children’s performance in activities of daily living. Research in Developmental Disabilities 35(7): 1711–1719.

Maes J-P (2015) Movement Analysis and Education Strategies for the treatment of children wth Cerebral Palsy and similar neurological conditions – Course Notes . Available at: www.maestherapy.com.

McLeod KR, Langevin LM, Goodyear BG and Dewey D (2014) Functional connectivity of neural motor networks is disrupted in children with developmental coordination disorder and attention-deficit/hyperactivity disorder. NeuroImage. Clinical 4: 566–575.

O’Brien JC, Williams HG, Bundy A, Lyons J and Mittal A (2008) Mechanisms that underlie coordination in children with developmental coordination disorder. Journal of Motor Behavior 40(1): 43–61.

Rosenblum S and Regev N (2013) Timing abilities among children with developmental coordination disorders (DCD) in comparison to children with typical development. Research in Developmental Disabilities 34(1): 218–227.
Schoemaker MM and Smits-Engelsman BCM (2015) Is Treating Motor Problems in DCD Just a Matter of Practice and More Practice? ResearchGate 2(2). Available at: https://www.researchgate.net/publication/274633943_Is_Treating_Motor_Problems_in_DCD_Just_a_Matter_of_Practice_and_More_Practice (accessed 19/03/16).

Schoemaker MM, Smits-Engelsman BCM, Sugden D and Chambers M (2005) Neuromotor task training: a new approach to treat children with DCD. ResearchGate. Available at: https://www.researchgate.net/publication/30491534_Neuromotor_task_training_a_new_approach_to_treat_children_with_DCD (accessed 19/03/16).

Smits-Engelsman BCM, Blank R, Kaay A-CVD, Meijs RM-VD, Brand EV-VD, Polatajko HJ and Wilson PH (2012) Efficacy of interventions to improve motor performance in children with developmental coordination disorder: A combined systematic review and meta-analysis. Developmental Medicine & Child Neurology 55(3). Available at: https://www.researchgate.net/publication/232736455_Efficacy_of_interventions_to_improve_motor_performance_in_children_with_developmental_coordination_disorder_A_combined_systematic_review_and_meta-analysis (accessed 19/03/16).

Smits-Engelsman B and Jelsma D (2011) Development Co-ordination Disorder – Course Notes. University of Cape Town, Department of Health and Rehabilitation Science Division of Physiotherapy.

Smits-Engelsman B, Schoemaker M, Delabastita T, Hoskens J and Geuze R (2015) Diagnostic criteria for DCD: Past and future. Human movement science 42. Available at: https://www.researchgate.net/publication/274571746_Diagnostic_criteria_for_DCD_Past_and_future (accessed 19/03/16).

Snapp-Childs W, Mon-Williams M and Bingham GP (2013) A SENSORIMOTOR APPROACH TO THE TRAINING OF MANUAL ACTIONS IN CHILDREN WITH DCD. Journal of child neurology 28(2): 204–212.

Thornton A, Licari M, Reid S, Armstrong J, Fallows R and Elliott C (2016) Cognitive Orientation to (Daily) Occupational Performance intervention leads to improvements in impairments, activity and participation in children with Developmental Coordination Disorder. Disability and Rehabilitation 38(10): 979–986.

 

CEREBRAL PALSY – it’s about the brain!

March is Cerebral Palsy month. Cerebral Palsy (CP) is a common childhood condition, occurring in 1.8–2.3 cases per 1000 children in high income countries, and 2.7 case per 1000 children in low income countries (1). Yet, I am often surprised at how few people know what CP is.

A Google search reveals confusing and sometimes contradictory information. My heart goes out to those parents with children who have just been diagnosed with CP… the information is overwhelming and scary and bewildering… how to make sense of it all?

And the bottle line is; CP is pretty simple… but the brain.. Ah! The incredible miracle and mystery that is the human brain… that is what makes CP so complex!

What is CP?  

CP is a collective term for a large variety and spectrum of movement difficulties as a result of damage to the developing brain. What is the developing brain? A child’s brain begins to develop in utero within the first week after the eager little sperm found its target. The brain continues to develop at a rapid pace until the child is about one year. So, CP is a result of any brain damage caused in utero, during birth or within the first year of life. After one year, any brain damage is often referred to as something else.

Good’ol Wikipedia defines CP as a “group of movement disorders…” Which I must say, I don’t wholly agree with. CP is damage to the brain… that is what the child experiences… as an observer, as an outsider, what we see is the result of that damage, which is the atypical development and atypical movement.

How can this brain damage occur?

As I have said before, the brain is really incredible, and what is even more incredible is the speed at which this complex organ develops. Different parts of the brain develop at different times during the course of development and therefore different parts of the brain are more susceptible that others, to changes in its environment at different times.

A child born preterm, may exhibit one type of brain changes, while a full term baby who didn’t get enough air at birth will present with a different pattern of brain injury. These will be different to a child who experienced a stroke at 1 day old, or a child whose mother lost a lot of blood while she was pregnant or a child that suffered a near drowning at 8 months old or a child who is HIV positive.

Sometimes, a child has CP and doctors can’t say how the brain damaged happened… maybe it was a genetic mutation? Maybe the mother has a virus while she was pregnant that no-one knew about?

The problem is, as the medical profession, we don’t always have all the answers… especially when it comes to the brain.

If one child has the same mechanism of brain injury and at the same time in development as another child, will they have the “same” CP.

No. The brain of one person is never the same as the brain of another person. Remember, development depends on genetics as well as environment. Two children with CP may look similar in the way they move but they are never the same.

It also depends on the extent of the injury, the scenario may be the same, but one child may have less damage than another child.

How does this brain injury affect a child?

What we have to remember is that up until the point of injury, the brain was developing normally… therefore, we have an area that doesn’t work so good, in a normal brain. It’s like having a broken toe that’s really sore… the rest of your body works perfectly, but you look weird the way you walk and stand, because of one part that doesn’t work so well.

Different parts of the brain, have different functions therefore, depending on the location of the brain injury, it will have different effects on the brain’s function.

In short, this brain damage results in some children moving too much and some children moving too little. In some children it appears that their legs are affected and others it appears that their arms are more affected, or their neck or their back. Some can talk and others can’t even swallow. Some children will walk and others will never. Some child will have sensory difficulties and other won’t, some will have behaviour difficulties and others not so much… and all of this is on a spectrum… from mild to severe.

The brain has to coordinate the child’s movement in space… the child has to solve problems posed to it by gravity and the function they need to do (whether that function is looking at mom, or swallowing or breathing or walking or sitting or balancing). Therefore what we see as “atypical” and “a movement disorder” is just the child’s strategy of solving a problem with the way their brain works.

BUT REMEMBER… the child may look like they move differently and that their “hamstrings are too tight” or they have a “spastic bicep” or their hips are dislocated… but these are secondary problems as a result of living in a world with gravity. The primary difficulty is in the BRAIN. At the beginning… there is nothing wrong with the child’s muscles or bones.

Does CP get better or get worse?

CP is a static condition. Meaning that once the brain injury has occurred and the child is medically well, the damage in the brain cannot get worse. However what we see in a child with CP changes. Depending on the brain injury, the child develops, they learn to coordinate their body in a certain way, and they can do more things, however as they grow and get heavier and secondary changes take place, or they get therapy and other interventions… it can appear that people with CP that they are getting better or getting worse. The injury is not changing, it is just how they choose to use their brain that changes.

So what is an official definition?  

There are plenty of super wordy, academic definitions about CP that change on a regular basis. The one, I like the best is by Jean-Pierre Maes, which says;

“Cerebral Palsy is a persistent condition where atypical postural tone reflects the use of atypical patterns of coordination. These atypical patterns of coordination are determined by the original impairment of the central nervous system (the brain), the ways the person has learnt to develop postural stability and to interact with the environment and subsequent musculoskeletal changes. In CP, atypical coordination of movement develops and changes over time even though the original cause of the disorder in non-progressive.” (2)

CP is complex because the brain is complex, and I definitely could not do it justice in a short(ish) blog post. Please feel free to contact me should you want some more information.

References

  1. Kakooza-Mwesige A, Andrews C, Peterson S, Wabwire Mangen F, Eliasson AC, Forssberg H. Prevalence of cerebral palsy in Uganda: a population-based study. Lancet Glob Health. 2017 Dec 1;5(12):e1275–82.
  2. Maes J-P. Movement Analysis and Education Strategies for the treatment of children with Cerebral Palsy and similar neurological conditions, Specialist Course Hand-outs. 2017.

About Me!

Hi Cape Town!

My name is Shane, I’m a qualified physiotherapist and I have just moved back to Cape Town for a new (if not dryer) adventure.

I started my journey towards being a paediatric physio when I was a child and was packed off to physio by a teacher for “low tone”. Physio was pretty fun and I figured if you could help someone and they had fun at the same time, then that is pretty cool!

I studied at UCT, completed my community service in northern Kwazulu-Natal and found my way back to Cape Town, where I was very happily employed at Paarl School for Children with Disabilities for five years. I loved working there and it helped grow a passion for treating all children, but particularly those who had been diagnosed with cerebral palsy. My knowledge base grew and I was afforded plenty of time by the school to attend courses and improve my skills.

However, I love learning new things and felt I needed to improve my knowledge base. I went to Johannesburg to complete a Masters in Medicine in child neuro-developmental health and worked part time in a private practice there. At the same time, I become very involved in learning more about an approach to treating children called Movement Analysis and Education Strategies (MAES).

As a physiotherapist, I have spent a lot of time analysing HOW children and adults move. The MAES approach was the first approach I have come across that not only looks at how a child moves but delves deeper into WHY they move the way they do. It is an approach that analyses movement, from the mover’s point of view and not as an outside observer.  It deepens the understanding of movement and is more about the psychology of movement than the actual movements itself. This approach has helped me individualise my assessments and treatment to each child taking into account every child’s own specific needs.

After completing the Masters (which took at least a year longer than I anticipated), I have returned to Cape Town to start a new chapter. I am looking forward to the adventure that is PhysioKids: Shane Brassell Phsyiotherapy!