Kids with Arthritis

Trying to find out what is wrong with your child, and then discovering that it is arthritis can be a shock, a relief, and often comes ‘like a bolt out of the blue’. Many parents found life very uncertain; not knowing what is wrong with your child is very worrying and emotionally draining. In our research, parents felt positive about having a label at last and were relieved that the right treatment could begin.

Some parents comments were:
"the illness had a name and therefore for some reason it made it easier to cope"
"once the diagnosis was made and treatment started, she began to feel much better and happier"

Parents and professionals agree that early diagnosis is best for the child, for their treatment and for the family. In the Britton study with forty six families, about 10% of children were diagnosed within one month of the parents taking the child for medical attention, but many parents reported it took months to secure appropriate healthcare.

Parents are hugely thankful to get to a clinic where they find people who understand their child’s illness, where correct treatment begins and where there are other families like them. Within any large group of parents there will be a variety of responses to the diagnosis. Some people will have been trying to convince themselves nothing was wrong, while others will have struggled to get professionals to take their concerns seriously. Most parents are eager to co-operate and are positive about working with this team.

Arthritis in children is very difficult to diagnose

Arthritis in children is usually very difficult to diagnose. It is considered a rare condition, and includes different disease subgroups. Community doctors will perhaps only come across a few children with this condition in the whole of their career. The symptoms are wide-ranging, fluctuating and seem serious but vague. Doctors sometimes confirm the diagnosis by discounting everything else.

For a high proportion of families, this can mean that before arthritis was confirmed there have been delays, extra tests, and suggestions made about other possible causes of the illness. You may have already seen different healthcare professionals and attended other clinics before reaching the children’s rheumatology clinic.

In the Britton study, 41% of families reported that it took between six months and three years to get a diagnosis. A mother summed up her feelings about this:
"not knowing what an illness is makes coping twice as hard"

Parents’ feelings about delays

Parents described the period leading up to a diagnosis, and getting the right treatment as the most worrying, lonely and desperate months. The emotional impact upon them from this time can last for years, even decades. These parents may become more upset if they believe their child suffered longer because of the delays. When interviewed years later, parents recall details and memories with considerable feeling. They may tell you their story many times, and each time relive the emotions of that time.

Other consequences of delays

When families' initial contact with professionals becomes troubled, research shows that these families find it more difficult to trust professionals later. In the Britton study, 71% of families said events that happened around this time impacted on how they coped later on. Some of their comments were:

"being told your child has a virus and being told your child has arthritis is a big difference"
"early diagnosis would have reduced immobility, joint stiffness and muscle wastage. An early course of physiotherapy may have prevented such hard physiotherapy now"

Parents said they found it more difficult to trust service providers if their initial experiences were negative. For example one mother said :

CHOICES and other organisations like Arthritis Care, together with leading professionals are dedicated to trying to bring support, information and effective care to the family as soon as possible. The situation is improving and children are getting diagnosed and treated sooner. However, this early period is the most worrying and distressing for most parents.

Summary of key points

Parents clearly experienced emotional turmoil whilst searching or waiting for the right diagnosis. Support from family and friends was important but parents wanted professionals to verbally acknowledge that the process was distressing.
Professionals wanted families to understand that it was a difficult process to make a firm diagnosis and that they needed time for extra tests.
Sometimes misunderstandings arose at this time, and both parents and professionals needed to check that they have been understood. Communicate calmly, honestly, clearly and write down what was said.

Children get arthritis too!

It is a big shock that your child has a serious illness. It is more of a shock that your child has arthritis, a disease which you thought only old people get. The general public are mostly unaware that children can develop arthritis, and many families said that when they tell other people why their child is ill, people are very surprised and even ask if you are sure that she has arthritis!

Greater public awareness that arthritis can strike at any age would perhaps encourage people to be more accepting about arthritis in children, but informing the general population is a very slow process. The feelings of family members about arthritis is discussed later (chapters 9-12).

Your part in parent/professional partnership

When a child has arthritis parents and the child will have contact with a great many different professionals over a long time. In this decade, automatic faith in doctors is less common than it used to be, and professionals and parents need to work to create an honest, good working relationship. The next section is about practical tips from other parents about how to work with professionals.