Parents of Youngsters with MS Voice Needs and Frustrations in Study

A study exploring the difficulties parents experience when their child develops multiple sclerosis (MS) found that more support and education — from healthcare and school staff, as well as by parents themselves — is key to easing the burden of a child or teenager with this disease.

The study, “Parents’ Experience of Pediatric Onset Multiple Sclerosis,” performed by researchers at the University of Illinois at Urbana-Champaign and Massachusetts General Hospital, among others, is now being prepared for publication. In addition to identifying a need for information and education, the study also opened new research questions regarding children living with MS.

Researchers interviewed 21 parents of children with MS, and the National Multiple Sclerosis Society recently published some highlights from the interviews on its website. A key message to parents of newly diagnosed MS children that came in the study was that the process is worst in the early stages, a source of hope to other parents beginning the same journey.

The study shows that challenges exist during all phases of the process, starting before diagnosis and continuing once a diagnosis is set. Researchers particularly asked parents about issues experienced before receiving a diagnosis, the diagnosis itself, and about adapting to life with MS — including treatment, family life, school, living with MS over time, and advice for other parents.

Diagnostic confusion

Since the first symptoms of MS vary widely, ranging from numbness to cognitive problems, it can be difficult for parents to understand these symptoms could be a sign of MS. Most parents interviewed knew little about the disease and did not know it could affect children. Some also ascribed initial symptoms to “laziness,” and later were troubled by those thoughts.

Researchers concluded that a better awareness about MS in children among pediatricians, eye doctors, emergency room physicians, and others likely to meet children in an early or pre-MS stage could shorten the path to diagnosis, and ease the stress parents experience.

Although parents were generally happy with the helpfulness of healthcare staff during the diagnostic process, they were at times disappointed about how information was relayed or withheld. Particularly, researchers found that it was not always clear to parents what would happen after the diagnosis, and some reported spending a substantial amount of time searching for information on the internet.

To help parents through the process, researchers underscored the importance of a multidisciplinary team that includes mental health and psychology experts, and patient advocates. Resources are also available through the National MS Society, including Kids Get MS Too: A Handbook for Parents Whose Child or Teen has MS. The MS International Federation also provides Childhood MS: A Guide for Parents.

Living with an MS child

Parents reported that communication was at times a difficult issue, particularly for those with a teenager. They sometimes feared children avoided telling them about symptoms, and some parents said they became more vigilant, and at times, overbearing, because of the fear of relapses.

Others were more worried that the MS would prevent their kids from living the life other did, because they were too preoccupied with being sick. All the interviewed parents allowed their children to, at least partly, contribute to decisions about disease management.

Again, researchers pointed out that it is important to engage mental health professionals who are experienced in adolescent development, so that both parents and healthcare staff can get a better understanding of the special needs of teenagers with a chronic disease. The National MS society also offers a page with tips for parents of teenagers with MS.

Although many psychological issues surfaced, the biggest challenge reported by parents was the difficulties in giving their children injections. This hardship was, in part, caused by problems related to the process; some children were scared of needles, and injections could cause pain or flu-like symptoms. Parents were also stressed by causing their children pain or discomfort.

The authors suggested that adapting cognitive behavioral therapies for people with MS to overcome stress related to injections can be a way to overcome these issues.

School issues

Communication with school staff was a substantial and continuously ongoing task, the study reported. The difficulties related to MS are not always evident, and can lead to issues if teachers are not aware of them. Fatigue and cognitive problems may also prevent children from getting work done on time, and treatments can prevent children from attending class.

Parents also reported that they needed to make sure that accommodations, such as individual study plans, were provided once they had been granted. The National MS Society has an educational handbook for school personnel and parents, as well as resources for students themselves.

A final word of encouragement

To sum the study up, researchers asked the 21 parents what specific advice they would give other parents and kids facing an MS diagnosis.

“Like anything else, it’s what you make of it. Just one day at a time. Don’t try to overthink it; don’t try to think too far ahead. The ‘what ifs,’ they’re there, but don’t concentrate on them too much because — the ‘what ifs’ are not going to do it for you … And support is a big thing. Support’s very big,” one parent said.

Others pointed out that it is crucial to manage one’s own emotions, since children will feel better when seeing a parent’s composure in handling the situation. Parents also noted that the earliest part of the MS process, as kids learn to adapt to living with the disease, is the most difficult part.

Close communication with healthcare staff, where children are involved in the discussions, was also mentioned to be helpful, as was the participation in the pediatric MS community.

Finally, parents underscored that maintaining hope is crucial. Parents did this in various ways, ranging from faith to education, and to keeping updated with current research.

Dr. David Rintell led the study, funded by a grant from the National MS Society.