Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity.

OBJECTIVE: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). METHODS: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. RESULTS: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. CONCLUSION: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.

Perceived Facilitators of and Barriers to Implementation of a Decision Support Tool for Adolescent Depression and Suicidality Screening: Focus Group and Interview Study.

BACKGROUND: Screening Wizard (SW) is a technology-based decision support tool aimed at guiding primary care providers (PCPs) to respond to depression and suicidality screens in adolescents. Separate screens assess adolescents' and parents' reports on mental health symptoms, treatment preferences, and potential treatment barriers. A detailed summary is provided to PCPs, also identifying adolescent-parent discrepancies. The goal of SW is to enhance decision-making to increase the utilization of evidence-based treatments. OBJECTIVE: This qualitative study aims to describe multi-stakeholder perspectives of adolescents, parents, and providers to understand the potential barriers to the implementation of SW. METHODS: We interviewed 11 parents and 11 adolescents and conducted two focus groups with 18 health care providers (PCPs, nurses, therapists, and staff) across 2 pediatric practices. Participants described previous experiences with screening for depression and were shown a mock-up of SW and asked for feedback. Interviews and focus groups were transcribed verbatim, and codebooks were inductively developed based on content. Transcripts were double coded, and disagreements were adjudicated to full agreement. Completed coding was used to produce thematic analyses of the interviews and focus groups. RESULTS: We identified five main themes across the interviews and focus groups: parents, adolescents, and pediatric PCPs agree that depression screening should occur in pediatric primary care; there is concern that accurate self-disclosure does not always occur during depression screening; SW is viewed as a tool that could facilitate depression screening and that might encourage more honesty in screening responses; parents, adolescents, and providers do not want SW to replace mental health discussions with providers; and providers want to maintain autonomy in treatment decisions. CONCLUSIONS: We identified that providers, parents, and adolescents are all concerned with current screening practices, mainly regarding inaccurate self-disclosure. They recognized value in SW as a computerized tool that may elicit more honest responses and identify adolescent-parent discrepancies. Surprisingly, providers did not want the SW report to include treatment recommendations, and all groups did not want the SW report to replace conversations with the PCP about depression. Although SW was originally developed as a treatment decision algorithm, this qualitative study has led us to remove this component, and instead, SW focuses on aspects identified as most useful by all groups. We hope that this initial qualitative work will improve the future implementation of SW.

Bringing Parent Voices into a Pediatric Research Network Through a Virtual Parent Panel.

BACKGROUND: Additional strategies are needed for longitudinal engagement of parents as key stakeholders in practice-based research networks (PBRNs). Our objective was to create a virtual Parent Panel for our PBRN to engage parents remotely and use their input on child health research. METHODS: We used an existing online parent survey study to invite parents to participate longitudinally by completing brief, monthly online questionnaires about child health research topics. The existing survey assessed perceptions and preferences for pain management of routine child vaccinations. RESULTS: Of 412 parents who completed the existing online survey, 233 parents expressed interest in participating in our Parent Panel and 131 parents confirmed interest. Of those parents, 105 provided demographic information: most were female (96%), married (83%), white (84%), between 31 to 40 years (61%), and had a college degree (83%). Parents were motivated to participate in our Parent Panel for a variety of reasons: altruism, a unique perspective, having a voice within child health research, a personal history of working within health care/research, and previous health care experiences with their children. Parents thought their participation could help research, parents, and children. We sent monthly electronic surveys with increasing parent enrollment to up to 131 parents, with monthly response rates ranging from 35% to 80%. Multiple changes have been implemented in our PBRN based on parent feedback. CONCLUSION: We successfully created and longitudinally maintained a virtual Parent Panel by using valuable parent feedback to make changes in our PBRN. PBRNs could adapt a similar strategy to virtually engage parents as key stakeholders for improving child health research.

Adolescent and Parent Knowledge, Attitudes, and Perceptions of Harm of Household Controlled Medications.

Introduction: Adolescents learn knowledge, attitudes, and behaviors from their parents, yet little is known about how these attributes are associated with management of household controlled prescription medications. We aimed to assess adolescent and parent: 1) knowledge and attitudes regarding household controlled medications, including previous healthcare counseling; 2) perceptions of harm of medication misuse and diversion; and 3) potential associations of these attributes with household management. Methods: This was a cross-sectional study with paired data using brief, online, confidential surveys of adolescents and parents via an adolescent medicine clinic associated with a large academic center. Eligible adolescents were aged 12-18 years old with at least one controlled prescription medication in the home. Data collection and analysis occured in 2017-2018. Results: Of the 243 adolescent-parent dyads, many adolescents and parents had: low knowledge (15%; 6%), risky attitudes (31%; 32%), received healthcare counseling on safe management of controlled medications (30%; 96%), and low perceived harm of adolescent diversion (39%; 49%). Parents practicing unsafe household management were 2.4 (95% CI = 1.3, 4.3) times as likely to have risky attitudes. Adolescents with families practicing unsafe medication management were 3.7 (95% CI = 1.1, 10.4) times as likely to have low perceptions of harm from diversion. Conclusions: Many adolescents and parents have low knowledge, risky attitudes, and low perceptions of harm of adolescent diversion, some of which are associated with unsafe household medication management. Providers should aim to utilize interventions to improve these attributes for adolescents and parents to enhance safe household medication management.

Stimulant Diversion Risk Among College Students Treated for ADHD: Primary Care Provider Prevention Training.

OBJECTIVE: To address increasing rates of stimulant misuse in college students, this study developed an evidence-based, brief clinical practice intervention for primary care providers (PCPs) to reduce stimulant medication diversion among young adults with attention-deficit/hyperactivity disorder (ADHD). METHODS: College students (N-114; 18-25 years; 68% attending universities; 24% attending community college) treated for ADHD with a stimulant and their PCPs across six practices participated in this initial, uncontrolled study of pre- to post-intervention change. An educational workshop providing strategies aimed at reducing stimulant diversion was developed and delivered to providers and staff across all practices (50% pediatric; 50% family medicine). Patients and providers completed baseline and post intervention surveys. RESULTS: Diversion was relatively infrequent, 16.7% at baseline and 14.9% post-intervention, respectively. Statistically significant decreases from baseline to post-intervention were found for three diversion risk factors: (1) number of times approached to divert, (2) intent to share, sell, or trade stimulants, and (3) disclosure of stimulant use. Providers and staff reported mostly high satisfaction with the training. CONCLUSIONS: This study provides initial evidence for a PCP-delivered intervention to reduce stimulant diversion. Research is needed on the efficacy of targeting college students directly, working with pharmacies and student health centers, and preventing misuse among teenagers.

Parent Perceptions of and Preferences for Participation in Child Health Research: Results from a Pediatric Practice-Based Research Network.

BACKGROUND: Recruitment efforts for child health research are often based on assumptions, therefore improving knowledge about parents' perceptions and preferences could enhance engagement. AIM/OBJECTIVE: 1) To describe parents' perceptions about and preferences for participation in child health research within a pediatric practice-based research network (PBRN), and 2) to investigate any associations with the presence of on-site PBRN research staff, office location, and child age. METHODS: We conducted a 2-phase study with a convenience sample of parents from diverse office settings. Phase 1 was a qualitative assessment using semistructured, in-person interviews. Phase 2 consisted of a quantitative self-administered survey assessing: 1) perceptions of importance, benefits/motivations, and risks/barriers of child health research, and 2) preferences for recruitment method and enrollment location. RESULTS: Parents (n = 627) uniformly perceived child health research to be important in prevention (89%), diagnosis (89%), and treatment (92%). They were motivated to participate most commonly by altruism and rarely by compensation. Parents perceived side effects (60%), discomfort (52%), and time (45%) as the main risks of participation. Most parents preferred to learn about research opportunities at their pediatric office (70%), and if interested, to enroll their child in their pediatric office (57%) or in their home (52%). Parents were significantly more altruistic and interested in participation in offices with on-site PBRN research staff and greater proximity to the University. CONCLUSIONS: Child health researchers could enhance participation by using recruitment resources and enrollment strategies that match parent preferences, including engagement by on-site PBRN staff.

Adolescent and Parent Management of Controlled Prescription Medications.

Background: Most adolescents who misuse controlled prescription medications acquire them from home settings. However, little is known regarding household management (storage, administration, and disposal) of these medications. Objective: To describe household management of controlled medications. Methods: This was a cross-sectional study with paired data using brief, online, confidential surveys of adolescents and parents via an adolescent medicine clinic associated with a large academic center. Eligible adolescents were 12-18 years with at least one controlled prescription medication in the home. Six core safe management strategies for controlled medications were identified based on current recommendations. Data were collected and analyzed in 2017. Results: Of the 243 adolescent-parent dyads, 78.2% (n = 190) dyads store medication out of sight, 68.7% (n = 167) lock up medications, 78.2% (n = 190) do not store pills besides a school nurse's office or a parent's place of work, 43.6% (n = 106) provide periodic parental monitoring, 64.6% (n = 157) frequently dispose of unused controlled medications (at least every 3-4 months), and 80.2% (n = 195) dispose of controlled medications in a prescription drug take-back program or by flushing. Families with an adolescent prescription for a controlled medication were more likely to use several core management strategies (periodic parental monitoring, frequent disposal, and appropriate disposal location). Families with a household pain reliever were 8.7 times (95% CI 3.3, 23.3) as likely to not keep spare pills in inappropriate locations. Conclusions/Importance: Most families do not practice all recommended safe management strategies for controlled medications. Healthcare professionals should promote safe management to reduce controlled prescription medication misuse.