Resources for Patients and Families

The following practices were described by patients and caregiver.

Self-advocacy: 

Speak up and share your perspectives at appointments.

“I don't know if that's gonna work in my case because X&Y, you know... She was not used to doing exercise at all. It wasn't really part of her practice to do physio or just exercise in general for your mental well-being... But it was also about her explaining. Look, I've never done it and I have no interest in doing it.” 

Seek information: 

Be involved in managing your care. Learn more about your condition and treatment options. 

“I have a very long, complicated chart. And so a lot of times I have to stand up for myself. I have to correct doctors. ... I've kind of had to become a doctor and a pharmacist for myself to make sure that, you know, everything's, you know, a OK.”

Collaborative goal setting: 

Share what matters to you, like your home life, culture, or personal goals. This helps your care team understand you and work with you to make the best plan together.

"They, you know, they really sat down with me like, “OK. What are your goals here? Like what do you want? What are your biggest roadblocks?... really worked with me on what I wanted to get better.”

“Compassion radar”: 

Notice if your provider is really listening and connected with you. If it doesn’t feel right, you can ask to see someone else.

“Empathy to me, that is come many ways. Some by words, you just look at, I need to be look at, each other and like the voice and the tone. That's one way of empathy that I am expected... I would feel that really have the professional that's looking after you, really have it in him or in her so that that's the empathy I mean”. 

Tracking your progress: 

Use personalized tools, like journals, drawings, and step tracking, to monitor your recovery over time. These tools can help you recognize progress independently.

“Yeah, it was just really nice to see that I had made progress... it was encouraging, and it was especially helpful... It was especially helpful because I really wasn't feeling very encouraged at that time. So when I had my appointment with my occupational therapist and I noticed that it was like a boost to my confidence and kind of like motivation to continue going forward.”

Mutual Empathy: 

Recognize that both patients and health care providers face challenges, including system and time constraints. 

"I don't blame the medical professionals that don't have time. They see hundreds of patients and they don't have time to listen to you [not] that they don't want to.”