Supporting Children whose Parents have Multiple Sclerosis
As if being a kid isn’t hard enough, imagine having a family member who is suffering from a debilitating disease like multiple sclerosis (MS). For many children and teenagers around the world, this is a reality they must cope with every day.
To support children who have a parent living with MS in Norway, Sanofi has partnered with the Norwegian Multiple Sclerosis Competence Center to create two online programs, SPIRIT Barn for children aged 6 to 12, and SPIRIT Ungdom for adolescents between the ages of 12 and 18.
The goal of these programs is to foster conversations within the family to help the children manage their feelings about their parents’ disease.
MS is an unpredictable, chronic disease that attacks the central nervous system and affects more than 2.3 million people around the world, and about 11,000 in Norway, which has a population of 5.3 million.
Based on the SPIRIT program, developed in 2011 for MS patients in Norway, the SPIRIT Barn and SPIRIT Ungdom programs were developed by registered MS nurse Torild Mauseth, registered MS nurse Anne Britt Skår and child psychologist Liv Solfrid Berge. While writing a master thesis on how adolescents cope with parents who have MS, Mauseth found that these children needed help handling difficult thoughts and feelings about having a sick parent.
At that time, there was no program in the Norwegian health system that answered those needs, so the three women reached out to Sanofi to find solutions.
“When a parent gets sick, it is natural that kids get sad, worried, angry or frustrated, and it is good for both parents and children that they talk about it,” Berge explained. “It can sometimes be difficult for the parent to talk about their illness because they are also scared. The main purpose of these programs is that family members learn to communicate and share their feelings.”
In these situations younger children and teenagers often struggle to balance their needs with those of their families. These programs provide advice and tools to help families discuss these unique challenges in an open and honest way.
One tool involves real stories from peers that are designed to help children and teens understand they are not alone. “You put words to the feelings that children have,” explains Skår. “We tell stories and say that it’s natural for the children to be scared and sad. This allows the kids who are listening to recognize; ‘Ok, yes, it’s the same for me’. It also enables the parents to talk about their children’s feelings.”
“Thank you for the nice program,” said one of the children that used it. “We have talked about some new things in our family, and we have learned new things. This was good for both children and adults.”
“The program has helped me to understand that not everything needs to be about putting others first, but that me and my feelings are also important,” said one of the program’s users. “It has been fun to be able to recognize myself in the stories that have been told.”
Adolescents are encouraged to share the program with someone they can trust, such as a friend, a school nurse, or relative for additional support. They can also send a text message to an MS nurse and will get an answer within a few days.
“The difficulty with a web-based program that teenagers use on their own is that you may open up feelings that are difficult to handle alone,” explains Berge. “That’s why the program includes a recommendation to contact a school nurse or a doctor if they are struggling to cope with particularly difficult feelings.”
How do the SPIRIT programs work?
Families who sign up for the program receive an email once a week with a link to the weekly session that they can access via laptop, tablet or smartphone. Each session lasts around 15-20 minutes. The kids’ program lasts for eight weeks, while the adolescents follow the program for seven weeks.
The programs, which are anonymous, do not focus so much on MS as a disease, but how the user feels and how they can live a better life with the disease. By describing symptoms of the disease—fatigue, problems walking and balance—as well as children’s common reactions to them, shows both parent and child that they are not going through this experience on their own.
The programs have a link to the Norwegian Multiple Sclerosis Competence Center where the user can find more MS disease-specific information that is adapted to the different age groups (www.msparorende.no) in Norwegian.
The initial program was launched in 2011 and similarly does not focus on the disease but on how the patient feels and how they can live a better life with MS.
The Norwegian national guidelines for MS patients highly recommend each of the SPIRIT programs. SPIRIT Barn and SPIRIT Ungdom also support a law that Norway adopted in 2010, which stipulates that all Norwegian health personnel support children and youth with parental illness.
“Working closely with Norwegian psychologists and healthcare personnel within the MS environment, we have managed to create three valuable programs,” said Lene Krogh who works on MS treatment in the Nordics & Baltics at Sanofi. “The response from the MS community has been overwhelmingly positive, and seeing them included in the National MS guidelines was a great recognition of the quality and relevance of these programs.”