Hospitalization is a major event for every child and parent. For children with a severe multiple handicap (EMB) in particular. They have even more difficulty sleeping in a strange bed, in a strange environment. The CloudCuddle can be a solution in such a situation. Especially if children can get used to the mobile bed tent at home before being admitted to the hospital.
Does your child have a severe multiple handicap and will soon be hospitalized for an operation? Then as parents you can be quite apprehensive. Especially if your son or daughter sleeps at home in a bed box, gets easily over-stimulated or wanders off at night. How can you help your child through the time in hospital, so that he or she can rest and recover properly?
Chance of hospitalization is higher
Because it is not known exactly how many children and adolescents in the Netherlands have disabilities, estimates vary. The website of the Dutch Association of Pediatrics mentions 6,564 children with multiple disabilities. This number is calculated based on the demand for care in the Netherlands.
The Parent Handbook MCG states that there are approximately 2500 children in the Netherlands with a severe multiple handicap (EMB). These are children with a combination of motor and intellectual disabilities. Many of them have health problems such as chronic respiratory infections, epilepsy, constipation, swallowing disorder, cerebral visual disorder, auditory disorder, scoliosis, osteoporosis, reflux oesophagitis and dehydration. As a result, the likelihood of hospitalization is higher than for other children.
Be that as it may, a child with EMB is a vulnerable child who requires additional supervision during a hospital stay. Because of the complex care requirements of these children, they often end up in a university medical center.
No adapted bed
The TV program De Monitor discovered that hospital care for children with EMB is not yet optimally arranged everywhere. In 2018 the editors already paid attention to this. Shirin, the mother of Kian, tells in the TV program that when her son was admitted to hospital there was no adapted bed available. “I have to do all the care myself and he doesn’t even sleep safely there,” she reports. “There is [in the hospital, ed.] no proper special bed, no shower chair or shower stretcher and there are no elevators.”
Better care for children with EMB
As early as 2009, the Association for Parents of Physically Handicapped Children (VOLG) found that many children’s wards in hospitals are insufficiently geared to the specific care needs of children with EMB, according to the research report ‘The Children’s Ward becomes a Family-Centered Medical Home‘. In addition, communication between hospital staff and parents falters.
Parents appear to have problems with the fact that in the hospital little or no use is made of their specific knowledge regarding the behavior, communication and care of their child. Parents, but also hospital staff have come to the conclusion that the care for the child with EMB can be better.
Child with EMB and hospitalization
Initiatives to improve hospital care around children with EMB have also been in place for a number of years. In addition to the above-mentioned report of the Ministry of Health, Welfare and Sport, in which it makes recommendations to improve hospital care around children with EMB, the Platform VG Brabant together with parents, representatives of residential/care institutions and hospitals developed in 2017 the ‘Road Guide for Parents and Personal Support Workers‘.
Also very informative is Sarah Schramme’s thesis: ‘The guidance of a disabled child during hospitalization for surgery‘ from 2014. In it, the role of the parents is mentioned – logically – as extremely important.
Rest during hospitalization
Rest is an important part of a speedy recovery for almost every hospitalization. An appropriate bed in which your child feels safe and is not exposed to too many stimuli is an important condition for this.
Sometimes hospitals use special tent beds. Like the CloudCuddle, these create a safe environment. But the availability of these beds in hospitals can be limited, also because they are often used for people with dementia. It sometimes remains to be seen if one is available for your child at the time of need.
Bed tent as an aid
Would you like to make your child’s hospital stay easier by creating a safe space in the children’s ward in a simple and quick way? Then consider renting a CloudCuddle. Several parents of children with disabilities have indicated to us that they have benefited from using the mobile bed tent in the hospital. Read the story of a Belgian mother and of Nina. Incidentally, a CloudCuddle can also be used in combination with a hoist.
An additional advantage of renting a CloudCuddle for a hospital stay is that you can try it out at home for a while prior to the planned admission, so that your child gets used to it. Then he or she will still have a familiar and private place of their own in the hospital. The bed tent consists of only soft materials and fits around virtually any hospital bed, as shown in this photo from the Child & Youth department of the Elkerliek hospital in Helmond.