Defining Personas of People Living with Chronic Pain: An Ethnographic Research Study

Figures & data

Table 1 Guided Interview Script for Patients

Session 1			Session 2
All about you	Draw your pain world	Show us the good stuff (referencing pain diary)	Figuring out what is going on with your pain	Finding new ways to get relief	Exploring new concepts and ideas (new concept cards)
Tell us about yourself	Tell us about what you have drawn	Describe your last experience seeing a pain care provider.	When did you last research your pain?	What made you decide to look for something new?	How did you rank the concept cards?
Where do you live?	Who is involved in this system?	How does your pain care provider communicate?	Do you go back to the same resources?	What kind of information are you looking for?	What is the most valuable to you?
Tell us about your family	How did drawing this make you feel?	How do you keep track of your pain and treatments?	What is the most valuable thing you have learned?	How do you know what is trustworthy and what is not?	What is totally useless?
What do you do for a living and why?	Where do you fit into this drawing?	How did you find your current treatment team?	How often do you research your pain?	Where did you purchase your last non-prescription treatment and why?	What is missing from these concept cards?
What is your community like?	What is missing from this drawing?	How has the team changed over time?	Does anyone support you in this research? Family? Friends?	When you are looking for new treatments, what type of information if useful?	What is your top choice?
Are you involved with any religious organizations?	If you were pain free what would be different?	Do you ever combine your medications with other things?	How important is it to understand the underlying cause of your pain?	What information on new treatments makes you feel skeptical?	Is your top choice perfect?
What makes you, you?	Are there any specialists involved in your pain world?	What do you love or hate about your current treatments?	What’s the most surprising thing you have learned?	Can you know me something you recently purchased that is trustworthy?	What would you change about your top choice to make it perfect?

Table 2 Specific Questions for Patients Assigned to Each Topic Domain

Topic Domains	About Motivations, Values and Beliefs	About Pain Experiences	About Pain Experts	About Pain Treatments
Resources	Where do you draw strength from when things get tough?	Do you ever spend time researching your pain? What do you look for?	Who have you worked with to get relief from your pain?	Where do you find out about new things to try?
	What do you do when you are really feeling bad?	What is the most helpful information source on pain you have come across? Which is the least helpful?	When you think about a great doctor, what comes to mind?	What are the attributes of a pain treatment that make you feel excited? Skeptical?
	Is there anyone in your life who really “gets it”?	Are there any blogs, podcasts, or people on social media that you go to for insights and information?	How do you manage and track your visits and care regimen?	What does it mean for a treatment to work well?
	Who makes you laugh when it comes to your pain?	What inspires you as it related to chronic pain?	How did you find your care specialist?	What are the qualities of effective pain relievers?
	Who do you really admire and why?	What about chronic pain brings you down?	When was the last time you visited your pain care specialist, why did you go, what was the process like?	How long do you try a product before you decide it’s not working?
	What matters most to you? Achieving personal goals, relationships with friends and family, passion projects, am meaningful career?	What is the most important thing for you to understand about your pain?	If you could change one thing about your care provider, what would it be?	What is your current relief regimen?
	Where do you go when you need a good laugh? A good cry?	When you are feeling bad, how do you get through the day?	What is missing from your care team now?	Is there somewhere you keep track of what you have tried or are trying now?

Table 3 Sample “Draw Your Pain World” Questions

Symptoms Appearance	Seeking Help	Recovery Process	Gaining Insights	Overview of My Pain
When did your pain start?	When did you first seek help?	What are you doing today to ease your pain?	Have you been able to understand what is happening to you?	Where in your body do you feel pain now?
Where did you first feel pain?	How many doctors did you see before you got a diagnosis?	What treatments have you tried in the past?	Did you find patterns or triggers that make your pain better?	On a scale from 0–10 how severe is your pain?
Did anything trigger the pain?	How long did it take to get a diagnosis?	What has worked?	Did you find patterns or triggers that make your pain worse?	Do you feel pain all the time?
How do you remember feeling about your initial pain, emotionally?	How would you describe your relationship with your doctor?	What have you noticed about different treatment?	How is your understanding of pain now vs when you first felt it?	Does your pain radiate to another part of the body?
Was there anything you had to stop doing or start doing because of your pain?	What therapies and medications are you using for your pain?	Do you keep track of your treatments?	Have your belief shifted at all since the beginning of your journey?	What does your pain feel like? (Burning, shooting, sharp, aching etc.)
With whom did you share you experience with?	Did you ever get a diagnosis?	Have you learned anything that has help you manage your pain?	Has this experience effected your interest or pleasure in doing things?	How has the pain impacted your mental health and relationships?

Figure 1 Sample My Pain Story worksheet.

Figure 2 Sample Love/Break Up Letter.

Figure 3 Sample Draw Your Pain World exercise (a) with pain; (b) without pain.

Figure 4 Chronic pain persona’s: chronicity, motivation, support, and agency.

Table 4 Chronic Pain Persona Screening Sample

Participant Number	Age (Years)	Income	Pain Chronicity (Years)	Severity NRS (0–10)	Gender (M/F)	Location (State)
1	35	$26–49k	5–10	7–8	M	Mississippi
2	40	$50–99k	>10	4–6	M	Texas
3	59	$26–49k	1–3	4–6	F	North Carolina
4	32	$100–149k	1–3	4–6	F	New York
5	57	$50–99k	5–10	4–6	F	Florida
6	47	$26–49k	>10	4–6	M	California
7	59	<$25k	>10	4–6	M	New York
8	72	$50–99k	>10	9–10	F	California
9	59	<$25K	1–3	4–6	F	Florida
10	58	<$25k	5–10	N/A	F	Florida
11	37	$50–99k	1–3	4–6	F	California

Figure 5 Chronic pain persona screening tool.