Wed 19, Aug 2015

Parents of children with disabilities make up a large proportion of the 2.7 million unpaid carers across Australia.

There is plenty of research telling us what most of us already suspected; that parents of children with disabilities are much more prone to stress, anxiety, depression and relationship strain than other parents1.

We also know that the level of social and community supports these parents receive is a major determinant in how well they fare2.

The most recent Australian Bureau of Statistics (ABS) census reported that one in 11 children aged between five and 14 had some form of disability - more than half with severe or profound limitations3.  That equates to about one in 20 children.

The parents of these children make up a sizeable portion of the 2.7 million unpaid carers across Australia 4 who look after our most vulnerable citizens, including the 140,000 Australians who need help with bladder and bowel control5.

To draw attention to the plight of carers of children and adults with incontinence, the Continence Foundation of Australia turned its focus on carers this year, launching its national campaign, Tell someone who cares: phone 1800 33 00 66.

Parents are often overlooked when the term ‘carer’ is used in this context. Yet the majority (63 per cent) of children’s disorders are mental or behavioural3.  This includes conditions such as autism, ADHD, intellectual disability and delayed development– all of which can have serious implications for bladder and bowel control.

Children’s continence nurse Janine Armocida, a consultant on the National Continence Helpline, said parents were often desperate by the time they phoned the Helpline.

Some of the more challenging behaviours parents sought help for, she said, were when children held on for unreasonably long periods (avoidance), handled their faeces, soiled or wet themselves well beyond toilet training age, or were afraid to use the  toilet.

“We can help parents identify possible causes for some of these problems so we have a starting point from which to take some new approaches,” Ms Armocida said.

For example, the precursor to toilet avoidance was often found to be a painful bowel motion due to constipation, she said.  “If you suspect constipation, have your child’s bowels checked out by your doctor or continence nurse.”

Fear of the toilet may be a sensory issue for children with autism, she said. “They may not like the sound of the flushing toilet, or may feel that the toilet seat is too cold, too hot or too hard. By trying to identify the cause of their fear, parents may be able to make a few alterations to the toilet environment.”

Explaining to parents why some children might handle their faeces was a significant first step towards modifying their behaviour, she said.

“Some children handle their faeces because they can feel it coming out, or because it feels uncomfortable in their rectum. This too, can often be associated with constipation. Other children play with their faeces because they like the tactile sensation, in which case products like playdo or kids’ slime might be introduced to their play.”

Ms Armocida reassured parents that there was much that could be done to support parents trying to cope with challenging toileting behaviours.

“We can also put parents in contact with a specialist continence service in their area when they phone us at the Helpline,” she added.

“As with all children, it’s important to observe your child so you know what may be holding them back; sometimes, recording their bladder and bowel habits gives us a picture of what is happening. And remember, stay calm, be positive, reward good behaviour and ignore other behaviours.”

Tell someone who cares; phone 1800 33 00 66 project has developed a number of new resources for parents and carers including dedicated web pages and short videos on the Continence Foundation website that  outline the available support services, including the National Continence Helpline (1800 33 00 66).

Ms Armocida recommended a number of excellent resources already available for parents of children with disabilities:

  • One Step at a Time; a parent's guide to toilet skills for children with special needs available from the Victorian Continence Resource Centre (03 9816 8266),
  • Tom’s Toilet DVD available from the South Australian Government (13 23 24),
  • Toilet Training for children with special needs app from iTunes, and
  • One Step at a time Toilet Tips from Google Play

For advice about your child’s toileting behaviours or information about financial assistance for the purchase of products, phone the free National Continence Helpline on 1800 33 00 66. Helpline staff can also refer callers to their nearest continence service.

References:

  1. Reichman N.E., Corman H., Noonan K., 2008, Impact of child disability on the family, Maternal and Child Health Journal, 12(6):679-683.
  2. Isa SN et. al., The impact of children with disabilities on parent health-related quality of life and family functioning in Kelantan and its associated factors. J Dev Behav Pediatr. 2013 May;34(4):262-8.
  3.  ABS 2003 and 2009 Survey of Disability, Ageing and Carers (SDAC).
  4. Carers Australia.    
  5. Incontinence in Australia, Australian Institute of Health and Welfare, 2009       
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