Stressors and Silver Linings during COVID-19: Implications for Supporting Families with Young Children in a Post-Pandemic World.

OBJECTIVES: To better understand impacts of the COVID-19 pandemic and resulting economic and social disruptions on families, we analyzed qualitative data capturing perspectives from parents of young children. METHODS: This study analyzes interviews of parents of children aged 1-3.5 years at enrollment, recruited from four primary care systems serving mainly lower-income Hispanic families in Los Angeles, California. Interviews were conducted over 15 months beginning September 2020. Analyses focused on the open-ended question: Please describe in your own words how the COVID-19 pandemic has affected you and your family. We used iterative, multi-step processes to identify emergent qualitative themes. RESULTS: A total of 460 parent responses were collected and coded. Key themes and subthemes were tested for interrater reliability, with Kappa ranging from 0.74 to 0.91. Thematic analysis revealed two groups of responses, one emphasizing stress and one emphasizing "silver linings." Parents cited a range of stressors, from fear of COVID-19 to social isolation. Those emphasizing "silver linings" also referenced formal or informal supports - especially government/community assistance programs and childcare access - that enabled stronger family ties and positive lifestyle modifications. CONCLUSIONS FOR PRACTICE: Experiences of families with young children during COVID-19 were not uniform. Economic stability and reliable childcare may be critical mediators of family stress. Results affirm that the pandemic's impacts were distributed through channels largely built on, and possibly exacerbating, existing disparities. For lower-income families with young children, funding for public and private programs that target economic stability and childcare assistance may merit prioritization in future socio-economic disruptions.

Community Health Workers in Early Childhood Well-Child Care for Medicaid-Insured Children: A Randomized Clinical Trial.

Importance: An intervention model (the Parent-focused Redesign for Encounters, Newborns to Toddlers; the PARENT intervention) for well-child care that integrates a community health worker into preventive care services may enhance early childhood well-child care. Objective: To examine the effectiveness of the PARENT intervention vs usual care for parents with children younger than 2 years of age. Design, Setting, and Participants: A cluster randomized clinical trial was conducted between March 2019 and July 2022. Of the 1283 parents with a child younger than 2 years of age presenting for a well-child visit at 1 of the 10 clinic sites (2 federally qualified health centers in California and Washington) approached for trial participation, 937 were enrolled. Intervention: Five clinics implemented the PARENT intervention, which is a team-based approach to care that uses a community health worker in the role of a coach (ie, health educator) as part of the well-child care team to provide comprehensive preventive services, and 5 clinics provided usual care. Main Outcomes and Measures: There were 2 primary outcomes: score for parent-reported receipt of recommended anticipatory guidance during well-child visits (score range, 0-100) and emergency department (ED) use (proportion with ≥2 ED visits). The secondary outcomes included psychosocial screening, developmental screening, health care use, and parent-reported experiences of care. Results: Of the 937 parents who were enrolled, 914 remained eligible to participate (n = 438 in the intervention group and n = 476 in the usual care group; 95% were mothers, 73% reported Latino ethnicity, and 63% reported an annual income <$30 000). The majority (855/914; 94%) of the children (mean age, 4.4 months at parental enrollment) were insured by Medicaid. Of the 914 parents who remained eligible and enrolled, 785 (86%) completed the 12-month follow-up interview. Parents of children treated at the intervention clinics (n = 375) reported receiving more anticipatory guidance than the parents of children treated at the usual care clinics (n = 407) (mean score, 73.9 [SD, 23.4] vs 63.3 [SD, 27.8], respectively; adjusted absolute difference, 11.01 [95% CI, 6.44 to 15.59]). There was no difference in ED use (proportion with ≥2 ED visits) between the intervention group (n = 376) and the usual care group (n = 407) (37.2% vs 36.1%, respectively; adjusted absolute difference, 1.2% [95% CI, -5.5% to 8.0%]). The effects of the intervention on the secondary outcomes included a higher amount of psychosocial assessments performed, a greater number of parents who had developmental or behavioral concerns elicited and addressed, increased attendance at well-child visits, and greater parental experiences with the care received (helpfulness of care). Conclusions and Relevance: The intervention resulted in improvements in the receipt of preventive care services vs usual care for children insured by Medicaid by incorporating community health workers in a team-based approach to early childhood well-child care. Trial Registration: ClinicalTrials.gov Identifier: NCT03797898.

Development of a Telehealth-Coordinated Intervention to Improve Access to Community-Based Mental Health.

Objective: To develop an intervention to improve the mental health referral and care process for children referred by primary care providers (PCPs) to community mental health clinics (MHCs) using a community partnered approach. Design: A Project Working Group (PWG) with representatives from each partner organization met monthly for 6 months. Setting: Multi-site federally qualified health center (FQHC) and two community MHCs in Los Angeles county. Participants: 26 stakeholders (14 FQHC clinic providers/staff, 8 MHC providers/staff, 4 parents) comprised the PWG. Data Sources: Qualitative interviews, PWG meeting notes, intervention processes and workflow reports. Intervention: The PWG reviewed qualitative data from stakeholders (interviews of 7 parents and 13 providers/staff). The PWG met monthly to identify key transition points where access to and coordination of care were likely compromised and to develop solutions. Results: Three critical transition points and system solutions were identified: 1) Parents refuse initial referral to the MHC due to stigma regarding mental health services. Solution: During initial referral, parents watch a video introducing them to the MHC. 2) Parents don't complete the MHC's screening after referral. Solution: A live videoconference session connecting parents at the FQHC with MHC staff ensures completion of the screening and eligibility process. 3) PCPs reject transfer of patients back to primary care for ongoing psychotropic medication management. Solution: Regularly scheduled live videoconferences connect PCPs and MHC providers. Conclusions: A community partnered approach to care design utilizing telehealth for care coordination between clinics can potentially be used to address key challenges in MHC access for children.

Adaptive Intervention to Prevent Respiratory Illness in Cerebral Palsy: Protocol for a Feasibility Pilot Randomized Controlled Trial.

BACKGROUND: This study will pilot-test an innovative just-in-time adaptive intervention to reduce severe respiratory illness among children with severe cerebral palsy (CP). Our intervention program, Respiratory Exacerbation-Plans for Action and Care Transitions (RE-PACT), delivers timely customized action planning and rapid clinical response when hospitalization risk is elevated. OBJECTIVE: This study aims to establish RE-PACT's feasibility, acceptability, and fidelity in up to 90 children with severe CP. An additional aim is to preliminarily estimate RE-PACT's effect size. METHODS: The study will recruit up to 90 caregivers of children with severe CP aged 0 to 17 years who are cared for by a respiratory specialist or are receiving daily respiratory treatments. Participants will be recruited from pediatric complex care programs at the University of Wisconsin-Madison (UW) and the University of California, Los Angeles (UCLA). Study participants will be randomly assigned to receive usual care through the complex care clinical program at UW or UCLA or the study intervention, RE-PACT. The intervention involves action planning, rapid clinical response to prevent and manage respiratory illness, and weekly SMS text messaging surveillance of caregiver confidence for their child to avoid hospitalization. RE-PACT will be run through 3 successively larger 6-month trial waves, allowing ongoing protocol refinement according to prespecified definitions of success for measures of feasibility, acceptability, and fidelity. The feasibility measures include recruitment and intervention time. The acceptability measures include recruitment and completion rates as well as intervention satisfaction. The fidelity measures include observed versus expected rates of intervention and data collection activities. The primary clinical outcome is a severe respiratory illness, defined as a respiratory diagnosis requiring hospitalization. The secondary clinical outcomes include hospital days and emergency department visits, systemic steroid courses, systemic antibiotic courses, and death from severe respiratory illness. RESULTS: The recruitment of the first wave began on April 27, 2022. To date, we have enrolled 30 (33%) out of 90 participants, as projected. The final wave of recruitment will end by October 31, 2023, and the final participant will complete the study by April 30, 2024. We will start analyzing the complete responses by April 30, 2024, and the publication of results is expected at the end of 2024. CONCLUSIONS: This pilot intervention, using adaptive just-in-time strategies, represents a novel approach to reducing the incidence of significant respiratory illness for children with severe CP. This protocol may be helpful to other researchers and health care providers caring for patients at high risk for acute severe illness exacerbations. TRIAL REGISTRATION: ClinicalTrials.gov NCT05292365; https://clinicaltrials.gov/study/NCT05292365. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49705.

Time Spent at Well-Child Care Visits for English- and Spanish-Speaking Parents.

OBJECTIVE: To measure duration of well-child care (WCC) visits at 2 federally qualified health centers (FQHCs), across 10 clinic sites, and determine if differences exist in visit duration for English- and Spanish-speaking parents. METHODS: Upon arrival to their child's 2- to 24-month well visit, a research team member followed families throughout their visit noting start and end times for a series of 5 WCC visit tasks. The average time to complete each visit task for the entire sample was then calculated. Mann-Whitney U tests were run to determine if task completion time differed significantly between English- and Spanish-speaking parents. RESULTS: The total sample included 199 parents of infants and children between 2 and 24 months old. Over one third of the sample spoke Spanish as their primary language (37%). The average visit time was 77 minutes (standard deviation [SD] = 48). Median time spent with the clinician was 14 minutes (SD = 5). Clinician visit time was significantly different U = 2608, P < .001, r = 0.38 between English- (median = 15 minutes) and Spanish (median = 11 minutes)-speaking parents. No other significant differences were identified. DISCUSSION: Our findings align with previous studies showing the average time spent with a clinician during a WCC visit was 15 minutes. Further, the average time with a clinician was less for Spanish-speaking parents. With limited visit length to address child and family concerns, re-designing the structure and duration of WCC visits is critical to best meet the needs of families living in poverty, and may ensure that Spanish-speaking parents receive appropriate guidance and support without time limitations.

Implementation of a community health worker-focused team-based model of care: What modifications do clinics make?

Background: Team-based care offers potential for integrating non-clinicians, such as community health workers (CHWs), into the primary care team to ensure that patients and families receive culturally relevant care to address their physical, social, and behavioral health and wellness needs. We describe how two federally qualified health center (FQHC) organizations adapted an evidence-based, team-based model of well-child care (WCC) designed to ensure that the parents of young children, aged 0-3, have their comprehensive preventive care needs met at WCC visits. Methods: Each FQHC formed a Project Working Group composed of clinicians, staff, and parents to determine what adaptations to make in the process of implementation of PARENT (Parent-Focused Redesign for Encounters, Newborns to Toddlers), a team-based care intervention that uses a CHW in the role of a preventive care coach. We use the Framework for Reporting Adaptations and Modifications to Evidence-based interventions (FRAME) to chronicle the various intervention modifications and the adaptation process, focusing on when and how modifications occurred, whether it was planned or unplanned, and the reasons and goals for the modification. Results: The Project Working Groups adapted several elements of the intervention in response to clinic priorities, workflow, staffing, space, and population need. Modifications were planned and proactive, and were made at the organization, clinic, and individual provider level. Modification decisions were made by the Project Working Group and operationalized by the Project Leadership Team. Examples of modifications include the following: (1) changing the parent coach educational requirement from a Master's degree to a bachelor's degree or equivalent experience to reflect the needs of the coach role; (2) the use of FQHC-specific templates for the coach's documentation of the pre-visit screening in the electronic health record; and (3) the use of electronic social needs referral tools to help the coach track and follow up on social need referrals. The modifications did not change the core elements (i.e., parent coach provision of preventive care services) or intervention goals. Conclusions: For clinics implementing team-based care interventions, the engagement of key clinical stakeholders early and often in the intervention adaptation and implementation process, and planning for intervention modifications at both at an organizational level and at a clinical level are critical for local implementation.

Barriers to and facilitators of a just-in-time adaptive intervention for respiratory illness in cerebral palsy: a qualitative study.

OBJECTIVE: To understand caregiver, healthcare professional and national expert perspectives on implementation of a just-in-time adaptive intervention, RE-PACT (Respiratory Exacerbation-Plans for Action and Care Transitions) to prevent respiratory crises in severe cerebral palsy. DESIGN: Qualitative research study. SETTING: Paediatric complex care programmes at two academic medical institutions. PARTICIPANTS: A total of n=4 focus groups were conducted with caregivers of children with severe cerebral palsy and chronic respiratory illness, n=4 with healthcare professionals, and n=1 with national experts. METHODS: Participants viewed a video summarising RE-PACT, which includes action planning, mobile health surveillance of parent confidence to avoid hospitalisation and rapid clinical response at times of low confidence. Moderated discussion elicited challenges and benefits of RE-PACT's design, and inductive thematic analysis elicited implementation barriers and facilitators. RESULTS: Of the 19 caregivers recruited, nearly half reported at least one hospitalisation for their child in the prior year. Healthcare professionals and national experts (n=26) included physicians, nurses, respiratory therapists, social workers and researchers. Four overarching themes and their barriers/facilitators emphasised the importance of design and interpersonal relationships balanced against health system infrastructure constraints. Intervention usefulness in crisis scenarios relies on designing action plans for intuitiveness and accuracy, and mobile health surveillance tools for integration into daily life. Trust, knowledge, empathy and adequate clinician capacity are essential components of clinical responder-caregiver relationships. CONCLUSIONS: RE-PACT's identified barriers are addressable. Just-in-time adaptive interventions for cerebral palsy appear well-suited to address families' need to tailor intervention content to levels of experience, preference and competing demands.

What Parents Want Doctors to Know: Responses to an Open-Ended Item on an Asthma Questionnaire.

OBJECTIVE: Unstructured parental comments could solicit important information about children's asthma, yet are rarely captured in clinical asthma questionnaires. This mixed-methods study describes parents' written responses to an open-ended question in a validated asthma questionnaire. METHODS: The Pediatric Asthma Control and Communication Instrument (PACCI) asthma questionnaire was administered to parents of children with asthma symptoms presenting to 48 pediatric primary care offices (PPCP), 1 pediatric pulmonology office, and 1 emergency department (ED). Responses to the question, "Please write down any concern or anything else you would like your doctor to know about your child's asthma" were analyzed using a phenomenological approach until thematic saturation was achieved for each site. Logistic regressions tested whether sociodemographic and clinical characteristics were associated with responding to the open-ended question. RESULTS: Of 7,988 parents who completed the PACCI, 954 (12%) responded to the open-ended question-2% in PPCP, 31% in the ED, and 50% in the pulmonary setting. More severe asthma was associated with higher odds of responding (odds ratio, 2.01; 95% confidence interval, 1.42-2.84). Based on responses provided, we identified 3 communication types: 1) clarifying symptoms, 2) asking questions, and 3) communicating distress. Responses also covered 5 asthma-related themes: 1) diagnostic uncertainty, 2) understanding asthma etiology and prognosis, 3) medication management, 4) impact on child function, and 5) personal asthma characteristics. CONCLUSION: Parents of children with severe asthma provided clarifying details, asked questions, and relayed health concerns and distress. None of these topics may be easily captured by closed-ended asthma questionnaires.

A Parent Coach-Led Model of Well-Child Care for Young Children in Low-Income Communities: Protocol for a Cluster Randomized Controlled Trial.

BACKGROUND: The Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT) intervention was created as a team-based approach to well-child care (WCC) that relies on a health educator (Parent Coach) to provide the bulk of WCC services, address specific needs faced by families in low-income communities, and decrease reliance on the clinician as the primary provider of WCC services. OBJECTIVE: This study aims to evaluate the impact of PARENT using a cluster randomized controlled trial. METHODS: This study tested the effectiveness of PARENT at 10 clinical sites in 2 federally qualified health centers in Tacoma, Washington, and Los Angeles, California. We conducted a cluster randomized controlled trial that included 916 families with children aged ≤12 months at the time of the baseline survey. Parents will be followed up at 6 and 12 months after enrollment. The Parent Coach, the main element of PARENT, provides anticipatory guidance, psychosocial screening and referral, developmental and behavioral surveillance, screening, and guidance at each WCC visit. The coach is supported by parent-focused previsit screening and visit prioritization, a brief, problem-focused clinician encounter for a physical examination and any concerns that require a clinician's attention, and an automated text message parent reminder and education service for periodic, age-specific messages to reinforce key health-related information recommended by Bright Futures national guidelines. We will examine parent-reported quality of care (receipt of nationally recommended WCC services, family-centeredness of care, and parental experiences of care), and health care use (WCC, urgent care, emergency department, and hospitalizations), conduct a cost analysis, and conduct a separate time-motion study of clinician time allocation to assess efficiency. We will also collect data on exploratory measures of parent-and parenting-focused outcomes. Our primary outcomes were receipt of anticipatory guidance and emergency department use. RESULTS: Participant recruitment began in March 2019. After recruitment, 6- and 12-month follow-up surveys will be completed. As of August 30, 2021, we enrolled a total of 916 participants. CONCLUSIONS: This large pragmatic trial of PARENT in partnership with federally qualified health centers will assess its utility as an evidence-based and financially sustainable model for the delivery of preventive care services to children in low-income communities. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03797898; https://clinicaltrials.gov/ct2/show/NCT03797898. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/27054.

A Telehealth-Enhanced Referral Process in Pediatric Primary Care: A Cluster Randomized Trial.

: media-1vid110.1542/5984243450001PEDS-VA_2018-2738Video Abstract OBJECTIVES: To improve the mental health (MH) referral process for children referred from primary care to community mental health clinics (CMHCs) by using a community-partnered approach. METHODS: Our partners were a multisite federally qualified health center and 2 CMHCs in Los Angeles County. We randomly assigned 6 federally qualified health center clinics to the intervention or as a control and implemented a newly developed telehealth-enhanced referral process (video orientation to the CMHC and a live videoconference CMHC screening visit) for all MH referrals from the intervention clinics. Our primary outcome was CMHC access defined by completion of the initial access point for referral (CMHC screening visit). We used multivariate logistic and linear regression to examine intervention impact on our primary outcome. To accommodate the cluster design, we used mixed-effect regression models. RESULTS: A total of 342 children ages 5 to 12 were enrolled; 86.5% were Latino, 61.7% were boys, and the mean age at enrollment was 8.6 years. Children using the telehealth-enabled referral process had 3 times the odds of completing the initial CMHC screening visit compared with children who were referred by using usual care procedures (80.49% vs 64.04%; adjusted odds ratio 3.02 [95% confidence interval 1.47 to 6.22]). Among children who completed the CMHC screening visit, intervention participants took 6.6 days longer to achieve it but also reported greater satisfaction with the referral system compared with controls. Once this initial access point in referral was completed, >80% of eligible intervention and control participants (174 of 213) went on to an MH visit. CONCLUSIONS: A novel telehealth-enhanced referral process developed by using a community-partnered approach improved initial access to CMHCs for children referred from primary care.

Challenges to Effective Primary Care-Specialty Communication and Coordination in the Mental Health Referral and Care Process for Publicly Insured Children.

Publicly insured children needing referral to mental health (MH) services often do not access or receive services. The objective of this study was to identify gaps in communication and coordination between primary care providers (PCPs) and MH providers during the MH referral and care process for publicly insured children. Thirteen semi-structured interviews were conducted with 10 PCPs and staff from a federally qualified health center (FQHC) and 6 MH providers and staff from two local MH clinics. Interview participants identified multiple gaps in communication throughout the care process and different phases as priorities for improvement. PCPs described primary care-MH communication challenges during early phases, while MH providers described coordination challenges in transferring patients back to primary care for ongoing mental health management. Strategies are needed to improve primary care-specialty MH communication and coordination throughout all phases of the referral and care process, particularly at initial referral and transfer back to primary care.

Feasibility and Acceptability in a Community-Partnered Implementation of CenteringParenting for Group Well-Child Care.

BACKGROUND: In a community-academic partnership, we implemented a group-based model for well-child care (WCC) (CenteringParenting) and conducted a pilot test for feasibility and acceptability among families at a federally qualified health center (FQHC). METHODS: The FQHC implemented CenteringParenting for all WCC visits in the first year of life, starting at the 2-week visit. Over a 14-month time period, parents from each new CenteringParenting group were enrolled into the study. Baseline data were collected at enrollment (infant age < 31 days) and again at a 6-month follow-up survey. Main outcomes were feasibility and acceptability of CenteringParenting; we also collected exploratory measures (parent experiences of care, utilization, self-efficacy, and social support). RESULTS: Of the 40 parent-infant dyads enrolled in the pilot, 28 CenteringParenting participants completed the 6-month follow-up assessment. The majority of infants were Latino, black, or "other" race/ethnicity; over 90% were Medicaid insured. Of the 28 CenteringParenting participants who completed the 6-month follow-up, 25 completed all visits between ages 2 weeks and 6 months in the CenteringParenting group. Of the CenteringParenting participants, 97% to 100% reported having adequate time with their provider and sufficient patient education and having their needs met at visits; most reported feeling comfortable at the group visit, and all reported wanting to continue CenteringParenting for their WCC. CenteringParenting participants' mean scores on exploratory measures demonstrated positive experiences of care, overall satisfaction of care, confidence in parenting, and parental social support. CONCLUSIONS: A community-academic partnership implemented CenteringParenting; the intervention was acceptable and feasible for a minority, low-income population. We highlight key challenges of implementation.