Lori Chait-Rubinek. Caring for children with disabilities, Don't Forget the Bubbles, 2017. Available at:
`I recently completed my first rotation as a doctor in the Emergency Department. Prior to entering the medical workforce, I had spent most of my employed life as a respite carer looking after and assisting children with developmental disabilities. I thought about these kids and how difficult an Emergency Department (ED) environment would be for them, as it is a place of hyper-sensory overload – noisy, bright lights and with constant movement. Yet when I looked at the literature I found limited qualitative data describing this patient groups experience in this setting.
The Australian Institute of Health and Welfare defines ‘disability’ as ‘profound or severe core limitations’ with activities such as self-care, mobility and communication. The Australian Bureau of Statistics estimates that around 7% (or 290,000) of Australian children aged between 0-14 years of age live with some level of disability. Of these children, intellectual and sensory/speech disabilities had the highest prevalence. The most commonly affected age group includes children aged 5-9 (5.8%) followed by 10-14 (3.9%) and 0-4 (2.2%). Core limitations are more commonly seen in the Indigenous population (30%) and amongst families of lower socioeconomic status.
These statistics suggest that there will be a reasonably high likelihood that a doctor will be required to care for a child with a disability in any paediatric rotation. Therefore it’s important to have at least some knowledge of how to deal with issues that may arise. Caring for sick children at the best of times is daunting, and even more so for inexperienced junior doctors. Caring for sick children with additional limitations adds an extra element of difficulty that requires guidance. With no how-to guide and little research, I asked parents of children with disabilities to share their medical stories and drew on my own respite care experience to highlight some issues which doctors may face when caring for children with special needs in an acute care setting.
David*, a 4- year old boy, was rushed to emergency by his mum for extreme abdominal pain,that later turned out to be appendicitis. At the time, he was undergoing testing for an autism spectrum disorder due to ongoing sensory processing issues. One of the ways this manifested was his disdain for oral pain medications. His mother explained that “they aren’t just yuk in taste for him- they are traumatic and he becomes hysterical to the point of vomiting.”
Despite this, the initial offer from the treating doctor was for oral analgesia only, as per protocol. After becoming hysterical on first administration and vomiting the second dose, David was charted for IV analgesia. When David later returned home from the hospital, his mum explained that “he refused all analgesia, even that which he would normally take with little argument prior to hospitalisation.”
Treating pain is perhaps the most important task when a patient presents to the ED. Treating pain in children with developmental disabilities brings its own challenges. There can be issues with
- Recognising pain,
- Assessing pain
- Managing pain
The experience above highlights problems with the latter.
In children with developmental disabilities, the absence of typical verbal and non-verbal communication of pain creates a risk of both under-treatment and failure to diagnose underlying disease/injuries. Some practical tips for recognising pain in this population include:
- using cues based on the developmental level rather than the actual age of the child;
- a good assessment of other potential manifestations of pain including moaning, crying, reduced appetite, increased sleep and irritability or reduced activity;
- alternative non-verbal communication of pain including eye gaze, vocalisations and facial grimace
- picture symbols (in a subset of children) may also be helpful.
Assessing pain level
When approaching assessment of pain in children with disabilities it is important to approach each child as an individual and to note the following:
- take into account the child’s disease/disability and pain source;
- understand how the individual communicates and use the child’s carer to assess whether there has been an acute change in usual behaviours; and
- assess how this has changed over time, particularly as a result of any analgesia administered.
Mckay and Clarke reviewed the effectiveness of the following pain assessment tools in children with severe learning disabilities:
The NCCPC (Non-communicating Children’s Pain Checklist)
This observational tool for assessing pain in children with severe learning disabilities has two versions including a revised version for short/long term pain (NCCPC-R) and for post-operative pain (NCCPC-PV). This tool has been found to discriminate between pain and calm consistently.
This is another observational pain assessment tool. The pros of this tool include individualisation and scope for parents to identify unique pain behaviours.
This is a behaviour rating scale. The disadvantage with this tool is that it does not indicate serious pain requiring intervention. It is useful in that it aids the parents to identify pain related behaviours which can then be relayed to the treating doctors.
No pain assessment tool is perfect. Assessment of pain should occur using a variety of information sources over multiple time points.
This population shares similar analgesic options with other paediatric patients in regards to combinations of pharmacologic and non-pharmacological approaches to pain management. Choices should be individualised and the correct modality chosen based on the presenting condition. David’s story highlights the additional need to enlist the help of the carer to pick the best modality. This may mean deviating from the World Health Organisation analgesic ladder to find what works best in an individual child with special needs.
Mary* is the mother of two children with developmental delay. One of her children, Alex*, has severe autism. Alex is a non-verbal communicator, has repetitive/obsessive behavioural patterns and severe developmental delay. He also suffers from anxiety and ADHD. Alex loves music and his red jumper.
During a visit to the doctor, Alex required an injection. He ran around the room screaming and in distress, to which Mary is accustomed. Both Mary and the doctor tried the usual means of calming communication including singing and letting him hold his red jumper. It didn’t work. Unsure of what to do next, Mary made one last suggestion to Alex – “Would you prefer the injection on the bum cheek rather than the arm?” Alex nodded, received the injection in a much calmer manner and they went about the rest of day.
You be forgiven for not directly communicating with a non-verbal disabled child, especially in an acute care setting where treatment may be emergent. However, it should be remembered that they deserve to be consulted about their care and all decisions that affect them as per the United Nations Convention on the Rights of the Child and the Rights of Persons with Disabilities. This is a particular challenge as such individuals often have their own means of communicating ranging from augmentative and alternative communication techniques (such as the picture exchange communication system) to signs such as looking up or down to signal “yes/no.”
The key to overcoming this challenge is calling on the knowledge and experience of the child’s carer. After Mary relayed her story, I asked her what she thought doctors should know about communicating with her children. Mary responded that ‘Parents know best. Our children are not going to behave like other children, they aren’t able to express themselves like other children. A doctor needs to use parents to help in the medical process.’ Following that piece of advice, one of the very first questions to parents of a child with a disability should be – “How can I effectively communicate with your child?”
In a qualitative study, Sharkey et al used parents and professionals to identify barriers and facilitators for communicating with disabled children in a hospital setting…
Interestingly, the parent participant noted that using ‘quiet moments’ also helped to facilitate communication. This paper highlighted that effective communication is multifaceted and requires a team effort for success. Whilst it may appear that more time is required to communicate effectively in these circumstances, having a practical and empathetic approach may actually save time down the track. Good communication techniques allow for easier identification of the presenting problems as well as their solutions.
As a work experience student, I was asked by a nurse to sit with an 8 year old patient while he waited to be seen by a doctor in the ED. He had cerebral palsy and presented to the hospital following a seizure. We spoke about his hobbies, his family, the subjects he enjoyed at school and those he didn’t. He was sweet, bright and funny. After a while of small talk, he began to talk about his social experiences. He told me he was sad and that boys at school didn’t like to play with him because he was disabled. The nurse commented that “patients’need medical care, but sometimes they also really need a person to talk to.”
Psychosocial issues can be easily forgotten when dealing with urgent medical issues. Obviously, no one is proposing that a doctor have a “deep and meaningful” in the resus bay, but a biopsychosocial model of health contends that disease outcomes are attributable to not only the biological process of disease, but also to the psychological and social circumstances of the presenting individual.
It is an unfortunate fact that many children with disabilities experience social exclusion and bullying at school. Of Australian school aged children with a disability, 37% reported difficulties fitting in socially. This isolation has a domino effect leading to poorer mental health outcomes including an increased incidence of anxiety and depression. These psychosocial issues also extend to primary carers who contend with the physical, emotional, financial and time costs of caring for a child with a disability. A good social history can help to identify struggling kids and parents and may prompt us to get our brilliant allied health colleagues involved. Increased social services can help ease the burden and provide children and parents with resources on how to cope.
I find it most appropriate to end this article with words from Ella*, a mother of a 23-year-old man with autism. Ella’s sentiments nicely summarise the various points discussed above and provide a good direction for doctors treating children with disabilities in an acute care setting:
“We all in some way fear that hospitals and medical procedures will lead to pain – this fear is even more pronounced in individuals whose understanding is limited. Patience and tolerance is a must. Please explain directly to the person with a disability using any method that they understand. Provide positive reinforcement and distraction. Do things slowly. Prevent pain. Work with the parents to have them on your side. If you get a person with a disability scared- the battle is much bigger.”
*Names have been changed to protect the privacy of the kind people that shared their stories
Australian Institute of Health and Welfare, 2004. Children with disabilities in Australia, Canberra: AIHW.
Australian Bureau of Statistics, 2012. Australian social trends- Children with a disability, Commonwealth of Australia
Oberlander, T. & Craig, K., 2003. Pain and children with developmental disabilities. In: N. Schechter, C. Berde & M. Yaster, eds. Pain in infants, children and adolescents, second edition. Philidelphia: Lippincott williams and wilkins, pp. 599-619.
Mckay, M. & Clarke, S., 2012. Pain assesment tools for the child with severe learning disability. Nursing children and young people, 24(2), pp. 14-19.
McGrath, P. et al., 1998. Behaviours caregivers use to determine pain in non-verbal, cognitively impaired individuals. Developmental Medicine and Child Neurology, 40(5), pp. 340-343.
Malviya, S. et al., 2006. The revised FLACC observational pain tool: improved reliability and validity for pain assessment in children with cognitive impairment. Pediatric Anesthesia, 16(3), pp. 258-265.
Hunt, A. et al., 2004. Clinical validation of paediatric pain profile. Developmental Medicine and Child Neurology, 46(1), pp. 9-18.
United Nations, 1989. Convention on the Rights of the Child.
United Nations, 2006. Convention on the Rights of Persons with Disabilities
Sharkey, S. et al., 2014. Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study. Health expectations, Volume 19, pp. 738-750.
Lindsay, S. & McPherson, A., 2012. Experiences of social exclusion and bullying at school among children and youth with cerebral palsy. Disability and Rehabilitation, 34(2), pp. 101-109.