Health & Wellness

Recent advancements in diagnostic tools have enabled healthcare providers to identify patients with multiple sclerosis at an earlier stage and age than before, increasing the number of new MS cases diagnosed in childhood and adolescence. Defined as MS that occurs before 16 years of age, pediatric-onset MS accounts for more than 6 percent of all MS cases, with the majority of cases (98 percent) being relapsing-remitting MS. As a chronic neurological disorder, the progression of MS may necessitate the presence of a caregiver, often a family member, to assist with day-to-day activities.

Because of the low incidence rate of pediatric MS, caregivers may initially struggle to find resources to support themselves and the child or adolescent with MS. Several studies have documented the strain that caring for a child with a chronic illness or disability can place on caregivers, negatively affecting their quality of life. Unfortunately, few studies existed that investigated the effect of caring for pediatric patients with MS.

Then, in February 2020, the European Multiple Sclerosis Platform published their systematic review of literature into the unmet needs of caregivers taking care of pediatric patients with MS, as well as the results of their survey of caregivers. Utilizing this study and other resources, this article will explore the unmet needs of caregivers, as well as the support available for both the patients and the caregivers.

Psychological Support

Caregivers experience fear or worry more than any other emotion during the care of their child or adolescent with MS. In the time leading up to a definitive diagnosis of MS, many caregivers are burdened by months of stress and anxiety because of the uncertainty surrounding the symptoms. In a study conducted in 2019, researchers found most pediatric patients initially received incorrect diagnoses. This can be frustrating to caregivers if they perceive the healthcare providers are not listening to their concerns or taking their concerns seriously. This study also found caregivers often felt overwhelmed, or even concerned they may in some way be responsible for the diagnoses.

Information and Educational Support

Between June and July of 2018, Merck KGaA, a German science and technology company, conducted a survey of MS caregivers and found that 51 percent of respondents felt “the healthcare professional did not explain the disease, its progression, and potential care needs very well.” In a 2017 study, caregivers acknowledged that their own lack of knowledge about MS exacerbated their fears of the disease and its effect on their children. Lack of MS knowledge also negatively affected the relationship between parents, attributing to lower satisfaction in couples’ relationships, as well as lower feeling of parental competence.

Practical and Social Support

Because of the evolving nature of MS, the roles and responsibilities of caregivers are constantly changing. Caregivers cited difficulties in balancing the needs of the pediatric patient with employment, family responsibilities, and social obligations. Caregivers reported feeling less satisfied in their role than noncaregiving parents and overwhelmed by appointments and information management of the disease.

Numerous appointments negatively affected the financial earnings of the caregiver, causing a need for financial support. Family dynamics and parental health-related quality of life also suffered in these families, as caregivers were often required to schedule their day’s activities around the fluctuating needs of the pediatric patient with MS. Families also report feeling isolated post-MS diagnosis, and expressed the desire to connect with other families whose children also have pediatric MS.

Resources Available for Caregivers

MS Focus offers a number of booklets that may be helpful for caregivers of pediatric MS patients, including When Your Child Has MS and Caring for the Caregiver. Practical help is also available, such as caregiver respite and other services. Request a Programs and Services brochure for full details.

The National MS Society offers resources to support caregivers and to help them navigate the disease process. For psychological support, NMSS offers a Support Group search tool as well as a Doctors and Resources tool to connect caregivers with local individuals and organizations that can provide information and emotional support.

The Doctors and Resources tool allows caregivers to select the category of support they need, the support type they are looking for, their ZIP code, and the distance they are willing to travel to meet with a provider. Those looking for emotional support may select this as their category, select caregiver and family support as their support type, then input the rest of their preferences to find a provider near them. NMSS’s Support Group search tool works similarly.

The Pediatric Multiple Sclerosis Alliance has a Facebook group with participants from all over the world sharing information, advice, and words of comfort. Though not pediatric specific, Healthline’s Living with Multiple Sclerosis Facebook page is quite similar. Through the online communication platform Discord, caregivers can join the Multiple Sclerosis Discord and chat 24/7 with volunteers or request one-on-one calls if preferred.

There is also a community Vent Chat where individuals can share what is happening in their lives. Peer hotlines, such as MSFriends: One-on-One Connections allows individuals to talk to trained volunteers living with MS. This is especially helpful to individuals and families dealing with a new MS diagnosis as it allows them to speak to someone who knows firsthand what it is like to have MS.

Navigating a MS diagnosis is challenging, especially for pediatric patients, where treatment options are slim. However, in being mindful of the obstacles that caregivers may endure and the resources available for them to assist in what may be a difficult time, caregivers can be better equipped to provide the best care possible to their pediatric patient and themselves, leading to improved quality of life and a smoother journey for all parties involved.