Caregivers of Youth With MS, Other Ills Invited to Survey on Mental Health

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by Teresa Carvalho |

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Access to mental health services for children with a rare disease or other medical or mental health disorder is the focus of an online survey by therapists at Children’s Friend, an affiliate of the Seven Hills Foundation.

The foundation, based in Worcester, Massachusetts, runs a variety of programs through its 14 affiliate groups to support families with “disabilities and significant life challenges.”

A research team at Children’s Friend launched the survey to identify ways of making access to mental healthcare easier for parents and their children, the Multiple Sclerosis Foundation (MS Focus) announced in a press release.

Multiple sclerosis (MS) can manifest in a range of symptoms, including depression and anxiety. An estimated 3%–5% of all  with MS experience disease onset during childhood or adolescence.

A previous study looking at these children and teenagers reported a link between the need for specialized care and the increased risk of mental health and behavioral concerns in this patient population. Its researchers emphasized the importance of multidisciplinary care in pediatric MS, and the inclusion of mental health services.

However, families can face barriers to the support offered by a mental health specialist. This survey study aims to understand the factors and obstacles that prevent families from ready access to mental health care.

“In this study, we are defining a barrier as any factor or obstacle that prevents access to mental health services that a child needs,” state the two therapists organizing the survey and the study that will come from it.

Parents or guardians with a child under age 18 with MS or other medical disorder, a rare disease, or mental health issues are invited to take part.

Available in both English and Spanish, the survey is estimated to take about 10 to 20 minutes to answer its more than 80 questions, most of which are multiple choice.

Participants remain anonymous, but “may find some of the questions sensitive,” the release states. “Participants can choose to not answer questions that make them feel uncomfortable.” Data collected will be safely stored, and remain confidential and unidentified.

At its end, participants are encouraged to add “other thoughts” they may have. According to the team, this is a particularly important feature as people’s reflections are often sources of the most valuable information to researchers.

“The responses you provide will be very useful in helping us obtain a comprehensive understanding of the experiences of and barriers to accessing mental health care for parents caring for children with a mental health condition, a medical condition, and/or rare disease, regardless of what condition your child has,” the therapists wrote.

Those interested in enrolling in the survey can do by linking to its English or Spanish language webpage. Anyone needing more information can contact either study therapist, Kim Hager (clinical social worker) or Maria Martinez Calderon (mental health counselor), by dialing 508-753-5425.

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