Table 4 Illustrative Quotes for Experiences with Mental Health Resources for Patients with Rheumatologic Disease
Mental Health Resources Used | Helpful | Not Helpful/Unsure |
|---|---|---|
Counseling | “The counselor helped me understand that what I was feeling was valid, and helped me put a name to the feelings and be able to process them.” –Patient, age 23 “The therapist helped him deal with school issues bothering him, how to handle his moods, how to optimize his time when not feeling well and helped us as a family have productive and more meaningful conversations.” –Parent for patient, age 24 “Our daughter likes having someone else to talk to other then her mom and dad. The therapist helped her cope with the injection and IV.” –Parent for patient, age 9 “Having a therapist to talk to about her pain and how it affects her has been very helpful.” –Parent for patient, age 8 | “Therapy was extremely expensive and the therapist we saw was convinced our daughter had a specific genetic mutation never addressed her anger and mood swings.” –Parent for patient, age 8 “Counseling was very infrequent due to distance to connect with a psychologist who was knowledgeable on JDM.” –Parent for patient, age 9 “Child was not very compliant; Child did not ‘buy in to’ the therapy - said what he thought the therapist wanted to hear; didn’t absorb the tools he was learning to cope with anxiety/social anxiety. Therapist meant well, but didn’t completely ‘get’ JDM.” –Parent for patient, age 16 “I don’t like talking to strangers about specific things (like counseling or therapy) so I didn’t feel like it was helpful to me specifically.” –Patient, age 21 |
Peer Support Groups | “Support group made me think about worse cases related to Lupus, but also and most importantly my symptoms were understood.” –Patient, age 19 “It is nice to hear about other people going through similar and different situations. It is very lonely sometimes when no one around you really understands what is going on...it is only made worse when you don’t understand what is going on a lot of the times.” –Patient, age 24 | “She attends youth group on a regular basis, thought I am not certain that she applies any content directly to her JIA diagnosis.” – Parent for patient, age 15 “It was called a lunch bunch group in elementary school for a group (about 5) children. I don’t believe any of the children opened up to others due to uneasiness/embarrassment. Did not last long-about 4 sessions.” –Parent for patient, age 13 |
Disease-related Camps | “Summer camp is amazing!! We talked about things that other people just don’t get.” –Patient, age 14 “Camp was amazing. Being around ‘people like me’ is one of the things she loved about it. If she needed to stop an activity and wrap her ankle no one made a big deal about it.” –Parent for patient, age 15 “Camps/conferences where families attend have been extremely helpful.” –Parent for patient, age 13 | “The camp I attended was for kids with JA and JDM, and because my disease has been so severe, I did not relate or grow close to them.” –Patient, age 18 “The camp was for people with all types of rheumatic diseases, so I was not able to get close to them.” –Patient, age 18 |
Online Resources | “I recently found a group of kids whom also have JDM and have a private page set up on Facebook. It was really nice when I found it because it showed me I wasn’t alone and other people are facing similar issues.” —Patient, age 14 “The Cure JM website and associated Juvenile Myositis Australia Inc. have been incredibly supportive and informative.” –Parent for patient, age 8 | “The online support group is nice for talking, but I don’t feel comfortable saying all that is going on.” –Patient, age 18 “In the [online] group people support each other and give advice to one another. However, I do not visit the group page that often because being reminded that I have JDM and the struggles of being sick would dampen my mood.” —Patient, age 14 |
Print Handouts/Resources | “The ‘Myositis and You’ book was incredibly helpful and still is to this day. A must have for everyone newly diagnosed.” –Parent for patient, age 8 | “Those resources, besides online, are not available in our area/smaller areas.” –Parent for patient, age 17 |