Parent Advisors Research Articles

Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

BackgroundParents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood. MethodsThis prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (NSR) sites in partnership with the NSR Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used. ResultsA total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (n = 142), 12 months (n = 169), 18 months (n = 208), and 24 months (n = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow. ConclusionsParents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers’ psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.

Advancing Parent and Newborn Health Outcomes Through Community-Based Collaboration: A Somerville-Tufts University Partnership

This manuscript is based on Project INSPIRE: Improving New Somerville Parent & Infant Resiliency & Engagement, a healthcare and early childcare sector collaboration between: 1) the Center for Black Maternal Health and Reproductive Justice (CBMHRJ) at Tufts University School of Medicine in Boston, Massachusetts; 2) MARCH: Maternal Advocacy and Research for Community Health at Tufts University in Medford, Massachusetts; and 3) SomerBaby, an early childhood home-visiting and parental support program through Somerville Public Schools in Somerville, Massachusetts. To address Somerville immigrant parental health gaps in the literature, we convened a Parent Advisory Board (PAB), co-created a novel health needs assessment survey in English, Spanish, and Portuguese, and distributed this survey both through home visits by SomerBaby interpreters as well as online for all Somerville parents of children three years old or younger. In this manuscript, we focus on topics related to the overall methodology of this project, including study conceptualization, lessons learned in community-engaged parental health research, and recommendations for academic-community research partnerships in pursuit of Black and Brown maternal health equity.

Parents' Perspectives on Early Relational Health: A Qualitative Study.

The American Academy of Pediatrics endorses a paradigm shift toward promoting early relational health (ERH) in pediatrics. Pediatric clinicians have a unique opportunity to promote ERH, yet little work has sought parents' perspectives on how clinicians can do so effectively. We sought to understand diverse parents' perspectives on ERH and the role of pediatric clinicians in supporting it. We conducted virtual focus groups using a guide prepared with input from community partners and parent advisors. We purposively sampled a diverse group of parents of children aged ≤7 years. Focus groups were recorded and transcribed verbatim. We analyzed data as it was collected and identified themes using an inductive and iterative process. Thirty-seven parents participated in 8 focus groups (median parent age: 36.0 years; 43.2% Asian, 18.9% Black/African-American; 32.4% Hispanic/Latino; 78.4% mothers). We identified 3 organizing themes: (1) Time, attention, and open communication with children lay a foundation for ERH; (2) Pediatric clinicians have an opportunity to promote ERH, but disconnected parent-clinician relationships are a major barrier; and (3) Enhanced communication and careful attention to child development and family well-being represent key opportunities to strengthen parent-clinician relationships. Parents identified time, attention, and open communication as essential to ERH. Although participants expressed openness to clinicians addressing ERH, such work is contingent on strong parent-clinician relationships. Policymakers and clinicians seeking to address ERH in pediatric settings must also be prepared to address potential barriers through strategies like providing adequate time to facilitate relationship-building and careful attention to address this critical topic.

'It's quite a balancing act': A qualitative study of parents'experiences and information needs related to the COVID-19 pandemic.

Throughout the coronavirus disease 2019 (COVID-19) pandemic, parents and children faced significant challenges as a result of prevention measures implemented to control the spread of the disease. Ensuring that families have access to essential health information is critical for improving health outcomes and adherence to public health recommendations. Understanding parents' experiences and information needs related to the pandemic and associated health measures (e.g., vaccination, mask wearing, social distancing, etc.)will inform the development and dissemination of resources tailored to parents' needs to support informed decision making. We conducted a qualitative descriptive study. Between September and November 2021, parents across Canada were recruited online via social media and community organisation newsletters and listservs to participate in focus groups via Zoom. Focus groups were audio-recorded and transcribed verbatim. Data were coded and analysed using thematic analysis. Participants completed a demographic questionnaire before the focus groups (via SimpleSurveys). Sixty-seven parents participated in 12 focus groups between October and November 2021. In relation to experiences, parents felt they were (1) constantly trying to balance everything, and (2) trying to do their best with the information they had at the time when making decisions. Regarding information needs, parents reflected on (1) how difficult it was navigating copious amounts of changing information and finding credible sources to rely on, (2) the need for resources that were easily accessible, credible and in plain language and (3) the need for resources that were tailored to their needs to support them and their children make informed decisions. Trying to mitigate the risk of COVID-19 infection and adhere to public health recommendations, while balancing various factors (work, online learning, and social interactions) and navigating changing information, was overwhelming for many parents. Reflecting on their needs, parents suggested tailored resources that provided concise, credible information in plain language to help them make informed decisions and navigate conflicting information. These findings reveal important knowledge gaps and highlight areas that need to be addressed to support parents during the pandemic period and beyond. Members of our established Paediatric Parent Advisory Group (P-PAG)were involved as collaborators throughout the planning (grant proposal), development and execution of the study. P-PAG members gave input on the design of the questionnaire, interview guide, recruitment strategyand interpretation of findings.

Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol.

Public contribution in research can facilitate the design and conduct of meaningful research, resulting in feasible and sustainable solutions to healthcare challenges. However, the evidence concerning the acceptability, feasibility, and impact of public contribution in research is limited. We will embed a mixed-method examination of public contribution activities into the CHANGE trial. The overall aim of the CHANGE trial is to evaluate the efficacy and cost-effectiveness of an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) plus treatment as usual (TAU) versus TAU for symptoms of depression and/or Generalized Anxiety Disorder in a superiority randomized controlled trial with an internal pilot phase. In this protocol we describe how we aim to: (1) involve parents of children treated for cancer in the managing and undertaking, analysis and interpretation, and dissemination phases of the CHANGE trial; and (2) examine the acceptability, feasibility, and perceived impact of Parent Advisory Board contribution to the trial from the perspective of board members and public contribution coordinators. We will recruit around six parents of children treated for cancer to the Parent Advisory Board. Board members will contribute throughout the trial during online workshops and steering group meetings. An impact log will be used during workshops to record activities and examine the perceived impact of activities according to board members and public contribution coordinators, including anticipated and unanticipated changes to the research process and potential benefits and harms. Activities will be reported using the Guidance for Reporting Involvement of Patients and the Public checklist. We will conduct semi-structured interviews with board members and public contribution coordinators 6months after the board is established and at the end of the trial to examine the acceptability, feasibility, and perceived impact of public contribution activities. We will also conduct interviews with board members and public contribution coordinators who withdraw participation. Findings will be reported in accordance with the Standards for Reporting Qualitative Research checklist. We hope adding public contribution to the CHANGE trial will provide guidance on how to embed public contribution in research and add to the evidence base concerning the impact of public contribution.

373 Parent Advisory Committee restructures regional events to support and connect families affected by cystic fibrosis throughout the intermountain West

373 Parent Advisory Committee restructures regional events to support and connect families affected by cystic fibrosis throughout the intermountain West

The impact of being Black while living with a chronic condition: Inpatient perspectives.

The impact of being Black while living with a chronic condition: Inpatient perspectives.

Caregiver Experiences in Pediatric Hospitalizations: Challenges and Opportunities for Improvement.

There are limited qualitative data describing general pediatric hospitalizations through the caregivers' lens, and most focus on one particular challenge or time during the hospitalization. This qualitative study aimed to address a gap in the description of the breadth and depth of personal challenges caregivers may face during the entire hospitalization, irrespective of severity of patient illness or diagnosis, and explored caregiver-suggested interventions. Caregivers of pediatric patients on the hospitalist service at a Pacific Northwest children's hospital were interviewed to explore their hospitalization experience and solicit feedback for potential interventions. Content was coded iteratively using a framework analysis until thematic saturation was met. Findings were triangulated through 2 focus groups, 1 with parent advisors and the other with hospital physicians and nurses. Among 14 caregivers (7 each of readmitted and newly admitted patients) and focus group participants, emergent domains on difficulties faced with their child's hospitalization were anchored on physiologic (sleep, personal hygiene, and food), psychosocial (feelings of isolation, mental stress), and communication challenges (information flow between families and the medical teams). Caregivers recognized that addressing physiologic and psychosocial needs better enabled them to advocate for their child and suggested interventions to ameliorate hospital challenges. Addressing physiologic and psychosocial needs may reduce barriers to caregivers optimally caring and advocating for their child. Downstream consequences of unaddressed caregiver challenges should be explored in relation to participation in hospital care and confidence in shared decision-making, both vital components for optimization of family-centered care.

Encouraging adolescents’ participation during paediatric diabetes clinic visits: Design and development of a question prompt list intervention

AimsTo investigate adolescents’ communication with healthcare providers (HCPs) and co– design a question prompt list as one part of an intervention to increase patient participation and communication at diabetes clinic visits. MethodsUsing an adolescent-led co-design approach we conducted interviews and focus groups with adolescents, parents, and healthcare providers (HCPs) and held workshops with both a Youth Advisory Group (YAG) and a Parent Advisory Group (PAG). ResultsAdolescents and parents identified challenges categorised into four themes: negative experience communicating with HCPs, lacking patient education leading to disinterest, low self-confidence out of fear of being wrong and forgetting to ask question(s). Adolescents identified that a Question Prompt List (QPL) could help them to ask questions, be more confident and participate more. The design process was an iterative development that engaged all stakeholders. Parents and HCPs assumed adolescents had greater knowledge about diabetes than they had in reality. ConclusionsDivergence in perceptions between adults and adolescents regarding patient knowledge of diabetes care demonstrates the importance of encouraging adolescents to ask the questions that matter to them. The QPL could be a useful means of supporting adolescents to actively participate in clinic encounters with healthcare providers.

'Opportunity to bond and a sense of normality': Parent and staff views of cuddling babies undergoing therapeutic hypothermia in neonatal intensive care: 'CoolCuddle'.

BackgroundCurrently, parents whose sick babies are undergoing three days of cooling therapy for hypoxic–ischaemic encephalopathy in neonatal intensive care units (NICUs) are not permitted to cuddle their cooled babies, due to concerns of warming the baby or dislodging breathing tubes or vascular catheters. Parents want to stay and care for their cooled babies and have reported that bonding is adversely affected when they are not permitted to hold them.Design and ParticipantsQualitative interviews with 21 parents of cooled babies in NICU (11 mothers and 10 fathers) and 10 neonatal staff (4 consultants and 6 nurses) explored their views and experiences of an intervention to enable parents to cuddle their cooled babies (CoolCuddle). Thematic analysis methods were used to develop the themes and compare them between parents and staff.ResultsFive themes were produced. Three themes were comparable between parents and staff: Closeness, a sense of normality and reassurance and support. An additional parent theme reflected their mixed feelings about initial participation as they were apprehensive, but felt that it was an amazing opportunity. Parents and staff described the closeness between parents and babies as important for bonding and breastfeeding. Fathers particularly appreciated the opportunity to hold and bond with their infants. Parents valued the reassurance and support received from staff, and the cuddles helped them feel more normal and more like a family at a very stressful time. In a final staff theme, they discussed the skills, number of staff and training needed to undertake CoolCuddle in NICU.ConclusionsParents cuddling their babies during cooling therapy enhanced parent–infant bonding and family‐centred care in NICU and was positively received. Adverse perinatal mental health, impaired mother–infant bonding and their effects on the establishment of breastfeeding may be ameliorated by introducing CoolCuddle.Patient ContributionOur parent advisors contributed to the interview topic guides and endorsed the themes from the analysis.

Assets and Challenges to Recruiting and Engaging Families in a Childhood Obesity Treatment Research Trial: Insights From Academic Partners, Community Partners, and Study Participants.

Background: There is need for the childhood obesity treatment literature to identify effective recruitment and engagement strategies for rural communities that are more likely to lack supportive infrastructure for healthy lifestyles and clinical research relative to their urban counterparts. This community case study examines recruitment and engagement strategies from a comparative effectiveness research (CER) trial of two family-based childhood obesity (FBCO) treatment interventions conducted in a medically underserved, rural region. Guided by a Community Based Participatory Research (CBPR) and systems-based approach, the primary aim was to analyze interviews from academic partners, community partners, and parent study participants for recruitment and engagement assets, challenges, and lessons learned.Methods: Over the 3-year lifespan of the study, researchers conducted 288 interviews with Community Advisory Board members (n = 14), Parent Advisory Team members (n = 7), and study participants (n = 100). Using an inductive-deductive approach, interviews were broadly coded for recruitment and engagement assets, challenges, and recommendations; analyzed for descriptive sub-coding; and organized into stakeholder/organization and participant level themes. Codes were analyzed aggregately across time and examined for differences among stakeholders and parent study participants.Results: Adherence to CBPR principles and development of strong community partnerships facilitated recruitment and engagement; however, variability in recruitment and engagement success impacted partner confidence, threatened outcome validity, and required additional resources. Specifically, assets and challenges emerged around eight key needs. Three were at the stakeholder/organization level: (1) readiness of stakeholders to conduct CBPR research, (2) development of sustainable referral protocols, and (3) development of participant engagement systems. The remaining five were at the participant level: (1) comfort and trust with research, (2) awareness and understanding of the study, (3) intervention accessibility, (4) intervention acceptability, and (5) target population readiness. Future recommendations included conducting readiness assessments and awareness campaigns, piloting and evaluating recruitment and engagement strategies, identifying participant barriers to engagement and finding a priori solutions, and fostering stakeholder leadership to develop sustainable protocols.Conclusion: Collective findings from multiple perspectives demonstrate the need for multi-leveled approaches focusing on infrastructure supports and strategies to improve stakeholder and participant awareness of, and capacity for, recruiting and engaging medically underserved, rural families in a FBCO CER trial.

Developing a video intervention to improve youth question-asking and provider education during paediatric diabetes clinic encounters: The Promoting Adolescents Communication and Engagement study

BackgroundResearch on long-term health conditions indicates that adolescents are not actively involved during their medical visits. Active involvement is essential because this can help adolescents learn how to self-manage their treatment plan. ObjectiveTo co-design a video intervention to improve youth question-asking and provider education during paediatric diabetes visits. Patient involvementA participatory-led approach was used to co-design the video, through a combination of interviews/ focus groups and the establishment of a Youth Advisory Group. MethodsFirst, focus groups and one-to-one interviews were held with adolescents, parents and healthcare providers. Second, two workshops were held with the Youth Advisory Group, Parent Advisory Group and stakeholders on script design. Finally, an iterative development of the video took place between the research team, videographer, both advisory groups and the steering committee. There were three rounds of feedback before the video was finalised. ResultsAdolescents’ content preferences included: 1) message of empowerment; 2) managing your diabetes so you can get on with the fun stuff in life; 3) Promoting independence; 4) Reasons for not speaking at clinic visits and reassurance; 5) Becoming comfortable to speak and ask questions at clinic visits; 6) Practical advice on how to ask questions. Formatting preferences included that the video should be short, divided into segments, with adolescents with diabetes acting in it, and speaking directly to the camera. DiscussionIdentifying and reflecting adolescents’ needs and preferences for engagement with healthcare providers was critical in the development process. Adolescents’ participation in the co-design process was pivotal to the acceptability of the intervention for adolescents with diabetes. Practical valueThe intervention may increase adolescents’ participation in communication and interactions with healthcare providers, which may help them to be more active in the self-management of their condition.

"How to Recognize if Your Child Is Seriously Ill" During COVID-19 Lockdown: An Evaluation of Parents' Confidence and Health-Seeking Behaviors.

Background: Parents' health-seeking behaviors has changed during the COVID-19 pandemic. Providing parents with guidance in decision making might improve their confidence to seek timely advice when a child becomes ill. The aim of this study was to evaluate the “How to recognize if your child is seriously ill” leaflet on parents' confidence, health-seeking behaviors, and usefulness during the COVID-19 lockdown.Method: A nine-item survey, codesigned with parent advisors, was used to measure confidence and health-seeking behavior. Social media was used for data collection in a 6-week period (April–June 2020) during COVID-19 lockdown in the United Kingdom. Categorical data were analyzed as frequencies, and inductive content analysis was performed with the qualitative data.Results: In total, 171 parents responded. Most parents (n = 160, 93.6%) found the leaflet helpful. The leaflet increased the confidence among 116 parents (67.8%) to recognize if their child is ill, and 156 (91.2%) parents had a better understanding of when and where to seek help. Thirty-three (19.2%) parents used the leaflet, while their child was unwell during COVID-19 lockdown, and in 14 (42%) cases, the leaflet resulted in changing health-seeking behavior for that episode. Twelve of these parents decided to seek medical consultation when they had not planned to before. Content analysis revealed three categories. (1) Knowledge—parents found the leaflet an objective source to validate their concerns. (2) Usability—parents reported that the leaflet was clearly designed. (3) Decision aid—parents commented that the leaflet provided clarification around recognition of serious symptoms and when and where to seek appropriate care.Conclusions: Our leaflet provided parents with guidance on decision making and risk assessment of ill children during COVID-19 lockdown. Parents found it helpful; it increased their confidence and positively changed their health-seeking behaviors. Providing parents with targeted information to recognize serious illness in children at home could potentially foster self-care and safely maintain a reduction in pediatric emergency attendances for self-limiting illnesses.

1173 Reducing Cancellation and Improving the Patient’s Experience Through Quality Improvement Process

Abstract Introduction Sleep study volume in our system has increased by 23% from 2017 to 2019 which makes unfilled sleep beds a significant concern. Cancellation rate impacts our sleep bed access. We hypothesized cancellation can be improved through quality improvement process which could ultimately lead to improve patient satisfaction. Methods A multi-disciplinary team was assembled to examine potential contributing factors. Using the Model for Improvement we developed, tested and implemented interventions using tools such as PDSA cycles, process map and a simplified FMEA (Failure Modes and Effects Analysis). A Key Driver Diagram helped guide our journey to improve the cancellation rate. We developed a Parent Advisory Group to help us with ideas to identify how we could improve the cancellation rate. Results The cancellation was 21% prior to the implementation of our interventions. To improve these measures, we have implemented several interventions. The content of our sleep study preparation handbook was improved, increased distribution of the education handbook and developed a series of sleep study videos which are available for viewing prior to the study to prepare patients and families. In addition, we standardized our process of reminder calls in the call center and sleep lab by defining roles and responsibilities. This improved our ability to answer questions and identify and mitigate barriers they may have. We implemented transportation assistance to patients who have transportation barriers and created a waitlist protocol to assist families with a preferred date. After 2 years of interventions, the cancellation rate has decreased from 21% to 14.7%. Interestingly, as we improved our cancellation rate, the overall patient satisfaction has been improved from 83% to 88%. Conclusion Using the Model for Improvement, we improved education, communication and scheduling processes, which has reduced cancellation rate and consequently improved patient satisfaction. Support

An Asthma Specialist's Consult Letter: What Do Parents Think About Receiving a Copy?

ObjectiveWritten summaries about visits with general practitioners’ have influenced increased patient knowledge, satisfaction, recollection, and compliance, and strengthened the doctor–patient relationship. All previous studies about this communication pre-dated the electronic medical record (EMR) era, and none examined views from parents of children with asthma. We explored parents’ perceptions about receiving a hard copy summary Letter immediately following the visit, with the pediatric asthma specialist about findings and the care plan for their child.MethodsA Parent Advisory Council helped inform this pilot study, an observational cross-sectional electronic survey. Each Letter included a comprehensive summary of the child’s visit with the specialist.ResultsPrevious findings from patients about the benefits of receiving this Letter were strongly supported by data from 51 participants. Interestingly, more than 54% of respondents preferred receiving a hard copy Letter over an electronic copy, and 98% wanted other clinicians to adopt this practice.ConclusionParents of children with asthma value and want timely written information of this nature from other clinicians.Practice ImplicationsThese results can influence further asthma research to promote a change in the perceptions of clinicians, parents, and patients about timely access to health information in the EMR era.

Patient-Centered Research Priorities: A Mixed-Methods Approach from the Colorado Children's Outcomes Network (COCONet).

Practice-based research networks (PBRNs) perform clinically relevant research designed for immediate translation to patient care. Research questions developed with patients and parents are more likely to be relevant to stakeholders. This case study developed priority areas for patient-centered outcomes research in pediatric health within the context of the Colorado Children's Outcomes Network, a statewide pediatric PBRN, and in collaboration with stakeholders. We undertook a mixed-methods, community-engaged process to understand and develop a research agenda for our pediatric PBRN. With a stakeholder-engaged research team, we conducted 52 stakeholder interviews and 1 focus group (n = 9) addressing topics including child health issues, personal health care experiences, community health, and the health care system. Transcripts were coded and analyzed by researchers and parent advisors. We conducted a Web-based survey of PBRN stakeholders (n = 75) to rate priority issues identified in qualitative findings. Finally, we facilitated a community-engaged mixed-methods interpretation and issue selection process with our Network Advisory Board to identify issues of highest importance for Colorado Children's Outcomes Network. Six topic areas of importance to pediatric health stakeholders emerged from qualitative work. Participating stakeholders used rating surveys to rank these 6 topics. Pediatric mental health coordination and communication/integration with primary care was ranked as the most important and highest research priority. The Network Advisory Board additionally identified immunization uptake and transition from pediatric to adult health care as research priority areas. This pediatric PBRN identified numerous research priorities in pediatric health and selected 3 for immediate research action. PBRNs can use community-engaged, mixed-methods research approaches to set research priorities and develop patient-centered pediatric research agendas.

Capacity Development and Evaluation of a Parent Advisory Team Engaged in Childhood Obesity Research.

Guided by community-based participatory research principles, this mixed-methods process evaluation explored the experience and capacity of a newly formed Parental Advisory Team (PAT) engaged in childhood obesity research in a medically underserved region. Following the successful completion of a 3-month evidence-based childhood obesity treatment program (iChoose), 13 parents/caregivers who completed iChoose consented to participate in the PAT. Between June 2015 and March 2016, the PAT had nine monthly meetings and completed mixed-methods capacity assessments. They engaged in activities related to understanding iChoose outcomes, defining their role and purpose as a partnership, initiating content development, and pilot testing maintenance intervention components for future iChoose efforts. Assessments included a quantitative survey administered at baseline and 9 months, and a qualitative interview completed at 9 months. Results indicated that PAT members' perceptions of the identified capacity dimensions were positive at baseline (3.8-4.3 on a 5-point scale) and remained positive at follow-up (3.9-4.4 on a 5-point scale); changes were not statistically significant. Qualitative data revealed that PAT members were satisfied with group participation and desired to enhance their role in subsequent iChoose research. Understanding and promoting parental engagement in the research process fills an important gap in childhood obesity literature.

50. PARENT COACHES: A NOVEL APPROACH TO TRAINEE FEEDBACK

Conducting direct observation and providing immediate feedback can be a valuable method for training learners as effective participants in patient- and family centered rounds (PFCR). These are traditionally done by faculty and are time consuming to do consistently for a large number of trainees. A new innovative role found on some hospital interprofessional teams is the parent advisor. This role is filled by a parent of a child with complex medical needs who is an experienced user of the hospital system. We speculated a novel use of parent advisors to serve as coaches for trainees and developed a program to observe and provide feedback on PFCR performance. A parent coach was identified and trained by members of our study team in PFCR observation, family communication, and provision of feedback to medical learners. Structured tools used included the PEA-21 checklist (a validated tool for observing presenters on PFCR), a structured form for interviewing families of patients, and an 8 item PFCR rounds checklist. The parent coach rounded with two inpatient teams weekly and met 1-on-1 with trainees to give feedback. Trainees also completed a survey about the coaching experience which included 9 items on a 5-point Likert scale and 4 items on a 3-point Likert scale related to learner impressions on receiving feedback from the parent coach. Data analysis includes descriptive statistics of survey responses. A total of 229 presentations given by 128 unique learners were observed during 85 rounding sessions from November 2017 to December 2018. 162 in-person feedback sessions occurred. 139 surveys were completed. 88% of trainees agreed (answered agree or strongly agree) sessions were important to their clinical success and 85% agreed there were actionable steps they would take as a result of receiving feedback. 87% of trainees agreed parent coaching sessions were valuable uses of their time and 82% recommended parent coaching for other trainees. We established the feasibility of trained parent coaching program and reached 128 students and residents during this period. In addition the learners found the feedback sessions valuable for their training.

Assessment of the Effects of Pediatric Attention Deficit Hyperactivity Disorder on Family Stress and Well-Being: Development of the IMPACT 1.0 Scale.

Medications may lessen core symptoms of attention deficit hyperactivity disorder (ADHD), yet families continue to report stress and have a low quality of life. Primary care providers manage almost half of all children with ADHD but do not have a brief measure to assess ADHD impacts on family in the context of everyday family life. The IMPACT (Impact Measure of Parenting-Related ADHD Challenges and Treatment) 1.0 Scale was codeveloped with input from parent advisors and administered to 79 parents of children with ADHD. Exploratory factor analysis, correlations with validated instruments, and test-retest reliability were examined. Exploratory factor analysis resulted in 4 subscales (Misbehavior, Siblings, Time, School), which demonstrated moderate to high test-retest reliability. Scale domains were related to severity and change in ADHD symptoms. Significant correlations were found between IMPACT scores, adaptive functioning in the home, and ADHD-related quality of life. The IMPACT 1.0 Scale provides a novel, reliable, and valid method to assess family impact of ADHD.

Partnering With Parents to Create a Research Advisory Board in a Pediatric Research Network.

* Abbreviations: CHOP — : Children’s Hospital of Philadelphia PBRN — : Practice-based research network PeRC — : Pediatric Research Consortium Practice-based research networks (PBRNs) are ongoing collaborations of clinicians and researchers to conduct studies that improve clinical practice and patient health. PBRNs have long emphasized input from clinicians as a key component of practice-based research. For example, the American Academy of Pediatrics Pediatric Research in Office Settings network relies on practitioners, as opposed to investigators or administrators, to decide which studies are approved.1 In recent years, the importance of getting input from additional stakeholders, especially patients and their families, has been increasingly prioritized. Patient engagement in research may lead to increased study enrollment rates and greater relevance of study outcomes to families.2 The 2010 Patient Protection and Affordable Care Act funded the creation of the Patient-Centered Outcomes Research Institute, which promotes clinical effectiveness research with sustained engagement of patients, families, and other stakeholders throughout the research process.3 Given this focus, practice-based research studies in which researchers partner with patients and families have become more common. However, models for meaningfully and efficiently engaging parents in pediatric PBRN research decisions, regardless of funder, are needed.4 The Children’s Hospital of Philadelphia (CHOP) created the Pediatric Research Consortium (PeRC) Parent Advisory Board to gather input from families that is used to inform the implementation of practice-based studies. PeRC is a 31-practice, 2-state PBRN involving 205 physicians and 41 nurse practitioners. PeRC includes a diverse population of patients from urban, suburban, and more rural practice settings. To date, 95 research projects have been completed in conjunction with parents. In this article, we describe the partnership between PBRN leaders, researchers, and parents … Address correspondence to Alexander G. Fiks, MD, MSCE, Children’s Hospital of Philadelphia, Roberts Building, Room 10-471, 2716 South St, Philadelphia, PA 19146. E-mail: fiks{at}email.chop.edu