Sample
A total of 47 personnel and eight patient representatives participated in PM discussion groups. About a third of participant engagement occurred in-person in December 2021. The remaining group discussions occurred virtually in 2022. The final Process Map is depicted in Fig. 1 and shows who is involved in the system, what type of care is provided, and how it is provided.
“Who” is in the pediatric HIV clinic
Clinic personnel were responsible for administering care for a patient census of ~ 250 youth with HIV. Providers included physicians, advanced practice providers (APPs; e.g., nurse practitioners and physician assistants), clinic nurses, support staff (e.g., medical assistants, patient care representatives), mental health practitioners (e.g., social workers, psychologist, psychiatrist, music therapist, child life specialist, educational consultant and chaplain), outreach staff, and pharmacy technicians/pharmacists. Finally, there were research assistants and ancillary personnel working in other campus locations but engaging with patients, including security guards, environmental services, transportation administration and drivers, and patient scheduling.
“What” care is provided in the pediatric HIV clinic
APPs reported being primary medical care providers for patients, with physicians conducting twice-weekly rounds and leading clinical staffing discussions in oversight of medical care provided by APPs. Clinic nurses coordinate patient medical care, take histories via health screening assessments and referrals, gather labs, administer medications, and facilitate clinic flow. Medical assistants prepare medical rooms, prepare medical rooms for patients, collect specimens, and take vitals. Patient care representatives register/check-in patients to prepare for visits. Community outreach staff meet patients upon initial diagnosis and link them to clinical care.
All patients were connected with a clinical social worker who provided case management and psychosocial support, including bi-annual psychosocial assessments (e.g., household income, violence in the home, legal proceedings, mental health and substance use history, etc.) and annual Adverse Childhood Experience (ACE) questionnaire screeners (Felitti et al., 2019). Those expressing or showing need for mental health care were referred to the psychologist, who conducted mental health assessments utilizing validated instruments to assess depression and anxiety. Other mental health screeners included a brief depression symptom screener and suicide screener (Posner et al., 2011), administered every six months by clinic nurses. No other routine trauma assessments were conducted with patients. Additionally, individuals needing psychotropic medication management were referred to the psychiatrist who is a consultant holding biweekly afternoon clinics. Research assistants reported regularly conducting validated mental health questionnaires but only for research purposes and results were not integrated into clinical care.
The psychologist was the only mental health provider practicing a trauma-specific patient treatment modality. However, social workers expressed enthusiastic support for TIC implementation and prior interest in/involvement with it. One had certification in trauma intervention and others had training in trauma-sensitive approaches.
When asked about current systems for eliciting/integrating patient and personnel feedback, a hospital-wide satisfaction survey for patients was described but personnel were unsure how the data were utilized or shared. Similarly, hospital-wide employee satisfaction surveys were conducted and shared at larger department-levels, but there were no current practices to elicit clinic personnel satisfaction. Some clinic processes had been amended in response to informal patient verbal feedback (e.g., altering patient screener length), but systematic patient feedback was not routinely gathered or integrated into clinic processes. Personnel and patient representatives suggested the need for clinic administrators to regularly solicit patient feedback (e.g., annual satisfaction surveys) and use it to guide programming. Numerous areas in which patients have authority over their own care were identified, including request for/engagement in psychosocial services, medical care engagement, administration of sexually transmitted infection swabs (e.g., self- or nurse- administered), vaccine uptake, and ART initiation. Regarding workforce development, numerous security guards and nursing administrators were trained every 1.5 years in Crisis Prevention and Intervention to assist when/if a patient becomes escalated behaviorally. When asked about culturally responsive policies and procedures, personnel reported not currently having clinic-specific policies but that the larger hospital system did have some things in place, including basic annual education about legal protections against discrimination, other bias awareness trainings, and opportunities to participate in group discussions and book clubs on cultural topics.
“How” care is provided in the pediatric HIV clinic
Patients are seen for routine care every three months to meet with medical providers, get labs drawn, and sometimes receive psychosocial support or engage in clinical research with research staff. Community outreach staff work with new patients to explore potential barriers to care by utilizing Motivational Interviewing (e.g., open-ended questions, affirming responses, and person-centered discussions) (Miller and Rollnick, 2002) to provide education/de-stigmatize HIV. This outreach occurs in medical clinics, patient homes, other public places, or local HIV service organizations.
Annual ACE questionnaires are administered within six months of patients initiating care, often during the second visit. This timeframe was set so sensitive questions would be asked after rapport had been built and psychoeducation provided on childhood adversity (i.e., to reduce unreliable results, as patients were perceived to change answers after establishing relationships). Personnel reported questionnaires were inconsistently conducted—due to limited staff resources and patient and personnel discomfort with the questionnaire items—and no identified structured protocols for how repeated screenings are conducted or systematic methods for sharing information with clinic personnel. Multiple providers, spanning different service categories, reported conducting informal risk assessments of new patients during initial engagement. These topics included verbal questions about current domestic violence risk and/or suicidal or homicidal ideation. Responses were documented in the patient’s medical record. Several personnel, spanning different positions, discussed spending lengthy session times with patients during the first and second appointments to obtain patient history as part of formal and informal psychosocial assessments. Advanced practice providers and physicians identified the need to have improved ease of access to patient responses about trauma exposures, mental health needs, and social determinants of health.
Providers reported engaging in professional development independently, without any clinic-level group trainings being offered specific to TIC and state that leaders would have to elevate this need to ensure clinic-wide training was feasible (i.e., close the clinic during training times or stagger trainings to keep it open with limited staff). Personnel from several positions expressed desire for the social workers’ roles to be expanded beyond primarily case management, into provision of more clinical/therapeutic modalities. A noted benefit to this was that this expansion would be supported as a reimbursable service, which could increase the clinic’s ability to provide greater mental health support.
Initiatives to promote professional quality of life were limited and relied on institution-wide efforts such as tangible treats from a care cart (e.g., teas, coffees, snacks, etc.). Personnel reported appreciating this service but found it alone to be insufficient, occurring infrequently, and not specific to the clinic. Staff burnout and high levels of attrition and turnover were common topics, as was the need for more self-care training and institutional- and clinic-level initiatives to prevent burnout.
The patient representative group generated three recommendations regarding how the clinic might consider integrating patient-centered care, including offering patients a menu of options for the order of services received during first visits (i.e., when blood is drawn that day), limiting the number of providers patients encounter in the first visit, and including a navigator or ambassador to remain with the patient on the first visit to escort them across campus through each appointment during the day.