Table 2.

Description of process map “clouds”—Uncertainties, gaps, and bottlenecks.

Cloud number	Treatment phase	Description	Examples	Illustrative quotes
1	Seeking a therapist	Easier to find referrals if family member works in a medical or mental health field	Parent is a therapist and had coworkers who specialized in anxiety who could provide referral suggestions	“I got really lucky just that–since I am in the field, I knew the treatment I thought would be good for [anxiety] and I happened to know a couple providers who did that treatment, and one was willing to take [my son] on” (8608)
			Parent is a psychiatrist and was able to get expedited treatment for their child with another psychiatrist
			Parent is a therapist and used connections to get in contact with other providers, but still had difficulty finding a provider with availability	“It was a very tough time for everybody in the household, it was tough trying to navigate the whole mental health system and knowing where to go. There wasn’t much out there” (4006)
2	Seeking a therapist	Reliance on word-of-mouth referrals	Parent had a close friend who works with children and adults with anxiety and OCD and recommended another provider	“We started asking friends for recommendations and actually when we did that, we realized that anxiety and other issues with kids were way more common than we thought. All my friends had recommendations for therapists and counselors…” (3511)
			Parents’ own therapist made a recommendation
			Parent is a teacher and consulted coworkers (teachers, school psychologists), but ultimately found a therapist through a friend’s recommendation
3	Seeking a therapist	Questions about etiology (e.g., PANDAS)	PANDAS was the primary diagnosis and required seeing one of few specialists in the country to learn about appropriate treatment options	“The pediatrician did do a workup because we were trying to rule out PANDAS because it seemed to come on so suddenly” (1008)
			Medical providers prioritized assessment for PANDAS (or other medical etiology) as a potential diagnosis which delayed access to psychosocial treatment
			Child had repeated strep infections and tonsillectomy. There was an early discussion of PANDAS, but never any further testing. Family is still curious about PANDAS connection
4	Seeking a therapist	Parent did not know to ask for exposure	Child completed a partial program for gastrointestinal symptoms that were secondary to anxiety, but exposure was not a part of the treatment	“The social worker…just wasn’t seeming to have an impact on the anxiety. We were still having all our same problems after a few sessions. [My son] liked to go and would talk through things, but it did not really have an impact on the anxiety behavior that was disrupting our household.” (1008)
			Child received psychosocial treatment through a partial program, but it did not include exposure
			Families express confusion about terminology, including CBT
5	Seeking a therapist	Mental health concerns may not be understood by medical providers	Underlying medical conditions (e.g., history of high fevers, infections, gastrointestinal symptoms, and migraines) led medical providers to focus on treatment of medical symptoms and largely ignore psychological symptoms	“If pediatricians listened more closely to parents—you aren’t there making things up, you are looking for help, for guidance for answers…I do not feel like I was heard, it was a very long journey to get [treatment]” (5105)
				“If the pediatricians were more helpful with mental health and saw it as part of your health period… we would have gotten help a lot sooner and it would not have gotten so severe.” (1505)
6	Seeking a therapist	Medical provider may lack knowledge about anxiety symptoms and treatment	Pediatricians were frequently consulted for input on symptoms, but pediatrician was not always able to identify/diagnosis anxiety disorders or OCD	“It would have saved us 3 years of unnecessary poking and prodding if we knew it was anxiety” (1509)
			Family spent two years seeing gastroenterologist for symptoms, and the question of anxiety was never raised	“I wish the pediatricians saw our son’s anxiety as a symptom [of PANDAS] and not as the disorder as a whole, because of that disconnect, nothing was ever looked into, and we were consistently dismissed.” (1505)
7	Seeking a therapist	Limited options for medication providers	Pediatrician initially prescribed medication but was not willing to manage it on an ongoing basis because doing so was beyond their expertise	“I had a little bit of difficulty with the pediatrician prescribing… he needed something formally written from the therapist about why he needed [medication]. It was hard getting [the therapist] to get the paperwork over to the pediatrician and I had to go through this every time, because you start off with a small amount that does not have a therapeutic effect” (2708)
			Therapist was not willing to see child if he was not on medication
			Pediatrician would not continue to manage medication if child was not seeing a therapist consistently
			Psychiatrist was initially consulted to suggest a medication dose, but it was managed in an ongoing capacity by the pediatrician
8	Seeking a therapist	Limited coordination of care across providers resulted in parents having to retell their child’s history repeatedly in the process of looking for a therapist	Insurance did not allow psychiatry and psychology appointments to be billed in the same week	“I wish there was more connection between… a psychologist and psychiatrist, like they are working together. [It’s hard] trying to figure out what story you told who and always explaining to different people and going between the pediatrician, psychiatrist, and psychologist and they all have their own ideas, and they are all really busy.” (2708)
				“We really needed everybody [a care team]… it was on my husband and I to be the social workers and figure it out, and get him the help he needed… lots of trial and error and time lost” (1505)
9	Seeking a therapist	Assessment may provide diagnostic clarity	Completing a phone intake at a specialty anxiety clinic was the first time parents understood their child’s diagnosis and learned about exposure	“[When] calling the [hospital] main number, and trying to get into a clinical program, there was a waitlist and I was referred to a research assistant for [research study]…I did a phone intake for [research study] and learned–I wasn’t even aware that exposure therapy existed” (1008)
			Family started a program that did not end up being a good fit due to lack of proper symptom assessment beforehand
10	Seeking a therapist	Structural barriers (e.g., cost, travel time, insurance) that affect the ability to find a therapist and schedule an initial appointment	Parents endorsed many barriers, including long waitlists, calls not being returned, therapists not accepting patients, limited appointment availability, high costs, and long travel time to appointments	“The hard thing is the wait times between everything” (1509)
				“We ended up paying out of pocket because of our high deductible” (1105)
			Parents expressed frustrations surrounding wait-times between partial programs and outpatient treatment. They discussed how symptoms get worse during wait-time, leading families to re-enter partial programs	“[Parent’s therapist] gave me three names and I did some research and made some phone calls and basically begged to get in…every single one I called said they did not have openings.” (3703)
			Parents frequently mentioned the need to “beg and plead” providers to see their child for treatment	“It’s frustrating when you are…a parent and your child is displaying severe symptoms: you want help and you do not know how to help…you want someone to tell you how to make things better”(S4)
11	Seeking a therapist	Emotional strain on parents	Trying to understand diagnosis and find an appropriate provider put a strain on parents’ relationship (“unrelenting stress”)	“It’s incredibly isolating. You feel like every other kid you see is happy and well-adjusted…And of course you logically know it’s not true, but it feels that way when your kid is hurting.” (9607)
				“When [my son] was really frustrated…he would say ‘you did this to me, this is your fault, you passed these genes on to me’” (3511)
12	Seeking a therapist	Child’s symptoms worsening	Ended up being referred to partial treatment because symptoms worsened so significantly while looking for outpatient providers	“I had to do a lot of begging and pleading [to get into treatment]” (3703)
				“[My son] did really well with [the partial program]…After a year, he backslid a bit so now we are doing outpatient [treatment]” (S1)
13	Family starts treatment with a non-exposure therapist	Therapist may assign “mini exposures” or assign at-home exposures only	Saw therapist doing “mini exposures” for a year but it wasn’t enough to address symptoms	“They would ask either my husband or I to do stuff and we did not understand exposure therapy…We were not educated enough until we got to [specialty clinic] to truly understand what it meant for the whole family to be a part of it.” (1505)
			Therapist gave child and family a book on OCD but did not provide psychoeducation that child had OCD or do exposures in session
14	Family starts treatment with a non-exposure therapist	CBT therapists may not do exposure	Family found therapist through IOCDF by searching for ‘pediatric OCD help’ but therapist did not do exposure	“CBT therapists do not necessarily do exposure.” (4909)
				“[Calling a specialty clinic] was the first time I heard about exposure, [before that, I] only knew about CBT.” (1505)
				“[A barrier to treatment was] the therapist’s knowledge of OCD symptoms… I felt gypped. Dishing out $150 a week and it made me angry… [They] did CBT but only talked about it, [they] did not do anything.” (3703)
15	Family starts treatment with a non-exposure therapist	Diagnostic confusion and/or dismissal of symptoms by provider	Child’s therapist dismissed family and told them nothing more could be done for symptom improvement (even though they were not doing exposure)	“We got connected with a therapist that was local who said she specialized in pediatric OCD. We went to her for two years and she did nothing. My daughter would go and play with toys, not talk about anything, we would not do any activities, it got to the point where after two years, [the therapist] dismissed my daughter and told us that there was nothing that she could do that we were not doing already.” (S2)
			Child’s therapist told family child had GAD, but parent felt child’s symptoms did not align with GAD; they later learned child had OCD
			Child’s anxiety was triggered by anaphylactic reaction. Family and medical providers at first believed child was having additional reactions, but then found out it was anxiety after child used EpiPen and visited the emergency room on 3 separate occasions
16	Family starts treatment with a non-exposure therapist	Child is more reluctant to go to therapy after experiences with treatment not being effective	Took three tries to get child into partial program because he did not want to acknowledge his OCD	“Once [children] are older and in crisis, it is harder to get them to realize they need help” (1509)
17	Family stops search for therapist	Family discontinues search for treatment due to relatively limited impairment from symptoms or due to difficulty accessing ongoing treatment	Child’s symptoms were relatively better and waitlists were long, especially during COVID-19 pandemic	“[My son] just kinda seemed to get more in a groove again with school so we just stopped therapy and also because of limited availability there was no flexibility—it was just too challenging to have therapy” (3703)
18	Family dissatisfied with treatment	Parent-driven questions about OC-spectrum disorders (e.g., tics) and PANDAS	Parent’s googling led to questions about PANDAS due to sudden onset of symptoms	“I got a little bit sidetracked during the process with so many people mentioning it could be PANS or PANDAS and getting him tested for that, which was a whole other ball game” (2708)
			Child presented with tics first, then parent learned about connection between tics and OCD, leading to questions about OCD
			Child had tics and migraines, prompting family to seek out neurological treatment and medication which later led to therapy for OCD
			Overlap/misdiagnosis of tics versus OCD versus anxiety
19	Family dissatisfied with treatment	Parents experience challenging emotional reactions	Parents gave attention to the child in need, and then worried that it would be hard on the other children in the family	“I was never really a big fan of mental health medications, now seeing the positive effect it has had on [my son], I feel differently about it…I sit in the way, just with my own hesitance to seek treatment and ignorance of what [my son] may be going through…When you hear there is a waitlist it’s brutal, your poor kid is suffering, you need to do something and you feel helpless.” (4006)
			Parent experienced guilt, shame, worry, hopelessness, frustration	“We questioned ourselves the whole way. Why aren’t we addressing it?” (1606)
				“The other barrier might be the shame in letting others in on the fact that your kid might have a mental health issue, which is shameful of myself to even say that because of how passionate I am myself [about mental health], but I did not want anyone to know” (3703)
20	Family dissatisfied with treatment	Online resources about anxiety, OCD, and exposure therapy	Parents found websites and podcasts which helped them to understand OCD	“I just started googling moral and harm OCD thoughts…Right in front of me was Natasha Daniels’ website…I thank her for everything, because right on her website [it explains what moral OCD is]. I cannot believe his therapist missed this” (2708)
			Even when parents did search online for exposure, did not find resources that they now know to be helpful	“When I googled and looked on Psychology Today it was not very easy…Now that I am all connected and listen to podcasts [I know about treatment delivery options]…but how did that not pop up when I was googling [exposure]?” (3703)
				“Now we have TikTok therapy and there is so much in the culture about all this therapy-speak, but I do not think exposure therapy is there yet.” (8606)
21	Family dissatisfied with treatment	Information about exposure received from speaking to staff at hospitals/clinics	Spoke with intake coordinator at specialty clinic and learned about exposure therapy	“Before [the psychologist] could even see us, she spent probably 2 hours on the phone with [us] explaining what was going to happen. She did not have time to see us right away, but she was the only person who called us back and was willing to spend the time with us to go through what this process [exposure] would look like.” (1606)
			Phone call with hospital staff led to recommendation for parents to contact specialty anxiety/OCD clinic
22	Family starts exposure-focused partial program	Partial program is an extra step that involves more burden and does not guarantee a referral to an outpatient therapist	Multiple parents took leaves of absence from their jobs so they could get their child to a partial program on time every day	“I took a leave of absence during the program. There was no way [to do it otherwise]. The first day I came back in tears and had to take a leave of absence, it was awful” (2708)
23	Family starts exposure-focused partial program	Partial program provides support for parents and children and reduces feelings of isolation and guilt	Parent group for families whose children were in a partial program was helpful	“He felt very comfortable with everyone, the whole team, and there were other kids that had similar issues…He felt like he was at the right place…being able to help other kids his age and talk to them. He looked forward to it, every day. It helped him a lot.” (1502)
				“A friend…connected me with a mom who had a son with OCD. Her son had been at [a partial program for OCD]. She was our lifesaver. She is one of my best friends and I have only known her a year.” (3703)
24	Family starts treatment with outpatient exposure therapist	Changes to treatment due to COVID and transition to telehealth	Waitlists were longer and only options were telehealth during COVID-19 pandemic	“[My son] was doing pretty well. When COVID hit, everything was online, and he is not much of a talker, and it takes a while to get to know him…so he has not followed up [with treatment]” (5105)
			Telehealth requires parents to have a bigger role in delivering exposures	“This year everything is telehealth [due to COVID], which has made it incredibly easy [scheduling wise], but I’m not sure how effective it is.” (S2)
				“Then COVID hit, it went to telehealth and I became her exposure therapist…because this telehealth wasn’t working… [We were] begrudgingly getting zero out of it, so I ended up taking what I learned from sitting in on these sessions and soaking everything in” (1606)
25	Family starts treatment with outpatient exposure therapist	Structural barriers (e.g., cost, travel time, insurance) to maintaining access to treatment after a provider is identified and/or treatment is initiated	Family found a therapist, but sessions were $500 an hour with no insurance option	“Depending on certain insurance [plans], they only cover certain providers within their network, sometimes that can be super limiting, especially when there is already a limited number of providers…it’s hard when you are trying to budget things, [weekly visits] add up” (S4)
			Parents had to pull children out of school early for treatment, sit in waiting room with children’s siblings, and miss work
			Multiple families cited waitlists ranging from a few weeks to 6 months long
26	Family starts treatment with outpatient exposure therapist	When treatment ends, it can be challenging to find a new provider	Can be hard to find a new therapist after being discharged from partial and if they do, it may not be a sufficient dose / frequency of treatment.	“It was frustrating, I felt alone with no help after we completed [the partial program]” (8053)
			Not guaranteed to continue to be connected to provider as symptoms wax and wane	“After [research study], that was a big surprise to me…no one could help us get in to see another therapist…You feel like you made all this progress, but now what? You see this new therapist, and you are starting from scratch” (1606)

CBT, cognitive behavioral therapy; GAD, generalized anxiety disorder; IOCDF, International OCD foundation; OCD, obsessive–compulsive disorder; OC-spectrum, obsessive–compulsive spectrum; PANS, pediatric acute-onset neuropsychiatric syndrome; and PANDAS, pediatric autoimmune neuropsychiatric disorder association with streptococcal infections.