Cure JM has made emotional and mental health a priority for families and medical providers. We recommend that mental health assessment and treatment options be an integral part of comprehensive care for children, adolescents, and adults with JM. Our new Mental & Emotional Health Coordinator, Suzanne Edison, will provide you with resources and information in addition to assisting pediatric rheumatologists in discussing and developing pathways for mental health screening and further evaluation or treatment if needed.
To understand how our JM families cope with mental health, we collaborated with Andrea Knight, MD, MSCE, an expert in the autoimmune and mental health fields. We surveyed Cure JM patients and parents on the “Mental Health Needs of JM Patients and Potential Interventions,” and found that 28% of JM adolescent and young adult patients reported depression and 33% reported anxiety.
We also conducted focus groups on parent perspectives of our children’s mental health at our 2018 national family conference, the results of which were published in the Arthritis Care & Research Journal in January of 2021. The conclusion states: “JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.”1
You know that having a chronic illness presents children and adolescents with greater emotional and mental health issues. Here are some resources for having what might seem like difficult conversations about their mental/emotional health experiences and needs.
You know that having a chronic illness presents children and adolescents with greater emotional and mental health issues. You might also feel uncomfortable having a conversation about your patient’s emotional and mental state for a variety of reasons that include: discomfort or unfamiliarity with the topic; lack of time; or lack of referral resources. Here are some options for starting the conversation. Also, we’ll provide you with some help in creating pathways to assessment and treatment if needed.
Psychologists / MH Counselors
Mental health counselors and therapists know that a child affected by a chronic illness is likely to have a variety of emotional and mental health stresses too. Both the illness and the treatments can be sources of distress and can heighten feelings of loss of control, confusion, sadness and or anger. Children’s behaviors might change and all of these emotions are normal, but children and families might need extra help to navigate the changes during these difficult times.
“Initially, some of the concerns I had about having conversations with my patients about their emotional health were that I might have no way to provide support – so I didn’t want to open a can of worms if I couldn’t help. Or, I would run out of time in the visit to address other things like treatment changes, ordering studies to monitor for disease activity/damage. But, one thing I have learned in my 12 years of practice as a pediatric rheumatologist is that when I see patients in clinic, it’s important for me to ask how they are doing from an emotional standpoint – and it’s ok for me not to have an immediate solution, but just to listen. Usually the patient and family are glad I asked and it doesn’t take much time in the visit. Simply showing I care about their mental health is the first step.”