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Bringing up children can be challenging. Caring for a child with long term illness or a disability brings additional challenges. This may include physical care of a child with no independent self-care skills, moving and handling a non-ambulant child, complex feeding regimes including those with tube feeding and gastrostomy, and medical procedures. There may be hospital and therapy appointments to attend. Therapists and education professionals may visit at home, with programmes to carry out on a daily basis between visits. Some disabled or sick children will need frequent attention during the night as well as during the day, and many will also have issues with poor sleep. Challenging behaviour is more common in children with learning disability, and is particularly associated with those who have a diagnosis of ADHD or autistic spectrum disorder.
The physical and emotional demands on the parents, carers and other family members can be high and it is not surprising that parents of disabled children report higher levels of stress and lower levels of well-being than parents of non-disabled children.1
Although not necessarily a direct result of the child’s disability, families with disabled children are more likely to include lone carers, and the carers are less likely to be employed or may be in low paid jobs. A recent report from the Institute of Public Policy Research2 showed that 29% of households with one or more disabled children lived in poverty compared with 21% of households with no disabled children.
While families of children with disability are more likely to be close to or on the edges of poverty, the financial costs of bringing up a disabled child are greater when compared to those incurred bringing up a non-disabled child. Dobson et al3 found greater expenditure in a number of areas. More was …
Competing interests: Dr Marder is Medical Advisor to the Down’s Syndrome Association (DSA), UK and receives funding from the association to support this role. She is also Chair of the Down’s Syndrome Medical Interest Group (DSMIG) UK, which receives core funding from the Down’s Syndrome Association.
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