The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence

Figures & data

Figure 1 Rating scale criteria used for evaluation of prediagnosis posts.

Figure 2 Website selections during the patient journey.

Figure 3 Analysis of reviewed posts.

Abbreviation: SJIA, systemic juvenile idiopathic arthritis.

Figure 4 Example of intuitive and emotional language of parents: quote at disease onset (early prediagnosis phase).

Note: The orange font is to highlight key words and important information from the quote.

Figure 5 Example of investigative parental language: quote from late prediagnosis phase (very symptomatic undiagnosed child).

Note: The orange font is to highlight key words and important information from the quote.

Figure 6 Example of announcement language: quote at diagnosis.

Note: The orange font is to highlight key words and important information from the quote.
Abbreviations: MMR, Measles, Mumps, and Rubella; asap, as soon as possible.

Figure 7 Example of postdiagnosis posts: investigators turn stalwart observers and provider partners.

Note: The orange font is to highlight key words and important information from the quote.

Figure 8 Example of postdiagnosis posts: reincorporating expressive language.

Note: The orange font is to highlight key words and important information from the quote.
Abbreviation: JRA, juvenile rheumatoid arthritis.

Figure 9 Diagnostic journey: parent’s frame after diagnosis is wrought with emotions and concerns for the future.

Note: The orange font is to highlight key words and important information from the quote.

Figure 10 The mixed parent–investigator frame: examples of expressive language and creation of a new normal.

Note: The orange font is to highlight key words and important information from the quote.
Abbreviations: JRA, juvenile rheumatoid arthritis; doc, doctor; info, information.

Figure 11 Cyclical roles prompted by parental psychological experience and practical stance during the phases of diagnosis.

Table 1 Five stages of a new normal

1.	Beginning: ideal for their normal happy/healthy child prior to onset of symptoms
2.	Shift to a sick and changed child: parents wish they had their old child back
3.	Diagnosis: period of grieving as parents adjusted to the fact things would never go back to the normal state
4.	Search for a working treatment: expectations of normal are lowered
5.	Medical treatment: parents shift to new normal and enter an adjustment period where they learn to regulate their child’s activities

Table 2 Language examples by parent framea

Early prediagnosis (and postdiagnosis in remission or controlled disease state)	Late prediagnosis (and postdiagnosis during an uncontrolled disease state)	Newly diagnosed (and postdiagnosed changing treatments, active disease state)
The parent frame	The investigator frame	The mixed frame
Child at disease onset; early in the diagnosis process, parents are emotionally present, child-centered, and focused on the whole child’s well-being	Highly symptomatic, undiagnosed child; parents feel dismissed, emotionally dry, and use disease and symptom-centered language and focus on getting a diagnosis	Child newly diagnosed; parents retain the markers of investigator phase with the restoration of earlier parent language and begin forming a positive relationship with the rheumatologist
Reliance on a parent’s intuition  I know he’s sick  He is not himself  I didn’t take his temperature, but I could tell he was warm	Reliance on fact  She had a fever last week, and it was 103.1°F and lasted 2 days, and I gave her 200 mg Motrin every 6 hours, but it didn’t do anything  Her fever last week lasted 3 days,  Monday–Wednesday, and it was between 101°F and 102.2°F each night for 5 hours  The rash shows up on the outside of his ankle after the fever every time	Reliance on facts and the whole child  Medicine X makes her sleepy and cranky for 2 days, but I haven’t noticed a rash since October 23  She’s doing pretty good, she loves to swim, and I think it’s helping, but I’ve noticed she sometimes favors her right knee  He had to miss a sleepover party last month because his left knee was red, warm, and swollen right here (pointing) for 2 days after he went hiking
Nonspecific language and uncertainty regarding symptoms  Often, sometimes, maybe, I guess,  I think, so, very, really, totally (versus direct statements of fact)	Specific language and certainty regarding symptoms  She has, the fever will, it is, the pain is, her rashes are	Mix of specific language and seeking HCP opinion to ground certainty  I’m just not sure that it’s working anymore, so I wanted to talk with you about whether it might be time to switch  I feel like this pain in her knees might be just a flare-up because she was at a party a couple of weeks ago, but I am concerned because it’s been 10 days now. What do you think?
Direct voice to parents’ emotions  I was so scared  I’m worried  It freaked me out	Emotions expressed as frustration   I just want this figured out  This is exhausting/concerning/confusing  Why isn’t anyone doing anything?	Emotive language begins to return after a diagnosis but slowly and cautiously  I am feeling like we are on a path to recovery  I am a bit worried that the medication might not be doing enough  I am concerned that she is still in pain
Talks about the child as a whole person  Andrea isn’t herself	Focus shifts from child to factual evidence of symptoms/disease  His knees are swollen and hurt  Her skin has rashes, and her joints hurt	Attention to the whole child returns – particularly as parents feel more reassured that they are on the right treatment path  She’s back to her old ways!  My boy is back

Note:

a Note that the examples of language that a parent uses in the physician’s office is extrapolated from how their language shifts in online discussions with other parents.

Abbreviation: HCP, healthcare provider.

Table 3 Suggested use of clinician language depending on the parent frame and stage of the SJIA journey

Early prediagnosis (and postdiagnosis in remission or controlled disease state)	Late prediagnosis (and postdiagnosis during an uncontrolled disease state)	Newly diagnosed (and postdiagnosed changing treatments, active disease state)
The parent frame	The investigator frame	The mixed frame
Child at disease onset; early in the diagnosis process, parents are emotionally present, child-centered, and focused on the whole child’s well-being	Highly symptomatic, undiagnosed child; parents feel dismissed, emotionally dry, and use disease and symptom-centered language and focus on getting a diagnosis	Child newly diagnosed; parents retain the markers of investigator phase with the restoration of earlier parent language and begin forming a positive relationship with the rheumatologist
Validate emotions Concern for your child is natural, and you are on the right track	Validate information Thank you for this information, and it will certainly help us get to the bottom of this	Validate emotions Getting a final diagnosis is relieving, but it’s also intimidating, and I know you have a lot of questions
Child-centered language I want Bobby to try to walk/rest more/eat pineapple	Medically centered language What I can see from your records is that Bobby isn’t really responding to Motrin, and his swelling is worse at night	Action-centered language This is what I’m going to do; this is what you’re going to do (discuss the plan). In the meantime, I’d like you to also go online and reach out to families that have experienced this process for support
Expressive language That’s a pretty involved rash, let’s totally cover all the bases here	Goal-centered language From here, this is the plan	Goal-centered language Our goal is to get Amanda’s […] (incorporate realistic goals and explain that the degree of remission varies even while being optimistic)
Affirm and partner This might take a while to diagnose. I want you to trust your gut because you know Bobby best, but also I want you to start a journal to track fevers and other symptoms. Remember to write your questions down for our next visit	Partner Keep documenting and email the data and any questions you have for us a week before your next visit	Invite and validate questions What questions do you have for me?
Goal-centered language My goal is to get to the bottom of this. It may take some time, but we will figure out what is going on with Bobby	Validate I know this has been difficult, and you’re doing a great job. Keep doing what you’re doing, and we’ll get this ironed out together	Reinforce partnership Keep documenting and bring your questions for me because not every child, or every case of SJIA, is the same. Make the distinction between child and the disease. We’ll work together to get the right treatment going

Abbreviation: SJIA, systemic juvenile idiopathic arthritis.