31 July 2013

Siblings of disabled kids often neglected

Children who are raised in the shadow of a sibling with significant health problems or disabilities may experience more behavioural and emotional problems.


Children who are raised in the shadow of a sibling with significant health problems or disabilities may experience more behavioural and emotional problems, a new study suggests.

It's not that parents aren't concerned about their other children, the researchers noted. But exhaustive, time-consuming and sometimes expensive treatments and tasks associated with caring for a child with such challenges can draw attention, energy and resources away from siblings.

The study found that healthy siblings of children with a disability experienced more problems with interpersonal relationships, psychological issues, functioning at school, and getting involved with sports and hobbies than did kids without such siblings.

The problems, the researchers speculate, lie partly in the lifestyle itself.

"What goes on in these households? There is financial, psychological and emotional stress," explained study author Anthony Goudie, an assistant professor in the department of pediatrics at the University of Arkansas. "Parents have to cut back hours at work, spend time coordinating care, bring their child to hospital appointments and don't typically have the time or energy with the well sibling to bond effectively."

The other children

Because parents tend to spend so much time focused on dealing with the child with disabilities, they may overlook issues that are building up for their other children, noted Goudie, because they may pale in comparison to what the disabled child is facing.

When problems aren't identified, they're less likely to be treated. "I think counselling and intervention are more predominantly accessible in children of households where parents aren't fixated on one specific child with disability," Goudie said.

Siblings in larger families where a healthy child has another healthy brother or sister seem to fare better: "If a sibling has another sibling to interact with, they seem to adapt better," Goudie said.

That suggests that having other people in the household to talk to and play with may help siblings develop the social skills and confidence necessary to succeed outside the home – in the classroom and on the playground, he explained.

The study, published in the August issue of Pediatrics, drew on data from the Medical Expenditure Panel Survey, used by the US Agency for Healthcare Research and Quality to randomly survey households around the country. In addition to collecting general information about each family – including health conditions, access to care, income and employment – the survey included the parents' assessments of their children's level of impairment.

Parents were asked about the level of problems experienced by their children between the ages of 5 and 17 years in the 12 months before the interview. In total, there were more than 6 500 siblings identified living in homes with only typically developing children and 245 siblings who lived in homes in which at least one other child had a disability.

The researchers found that compared with siblings of typically developing children, parents said that siblings of children with a disability were less likely to have a very good or excellent mental health status; felt the sibling gets sick more easily; had interpersonal problems with their mother, siblings or adults in general; were more likely to seem unhappy, sad, nervous or afraid; and had more problems with schoolwork or in leisure or sports activities.


To counter those problems, Goudie suggested that parents look for signs of problems related to school behaviour, mood, interests, activities and relationships. "Ask yourself if the problems [the sibling is having] could be a result of the time you're having to spend with their brother or sister who has a disability, and then seek proper counselling," he said.

Parents may also need to seek respite care that would allow them regular time away for a day or longer with the sibling, find support groups and get other forms of practical help, said Goudie.

Paediatricians and other health care providers should ask parents if they've seen signs of misbehaviour in the siblings and suggest mental health screening if the responses warrant it, Goudie said. "If you can get at the mental health issues sooner, it may be a lot easier to intervene. Nip it in the bud," he advised.

One expert said the findings rang true, but noted limitations to the study. "The way the data was collected, it's like a snapshot in time, and it would be great to be able to track or show that when the parents were under more stress, there were exacerbated problems with the brothers and sisters," said Adam Carle, an assistant professor of paediatrics at the University of Cincinnati School of Medicine.

In some ways, the study may have underestimated the impact of having a disabled sibling, Carle added. Children who don't misbehave may be shouldering their troubles in ways that are less obvious to parents. "Kids who are throwing a fit in school or not listening are brought in [to get counselling], but the ones who go off to their rooms and are quiet, may not get noticed," he said.

More information

Learn more about children with disabilities from the National Dissemination Center for Children with Disabilities.


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