Parent Feedback Research Articles

Delivery room cuddles for extremely preterm babies and parents: concept, practice, safety, parental feedback.

AimFollowing extreme preterm birth, there has traditionally been felt an imperative to rush baby to the neonatal unit for ongoing intensive care. Immediate needs of parents to bond with their babies through direct early physical contact have often been overlooked; many weeks can pass before parents get to hold their babies for the first time. Recognition of the importance of early contact is growing. We aimed to review the safety and value of routinely practising delivery room cuddles for extremely preterm babies.MethodsWe reviewed delivery room cuddles in babies born <27 weeks’ gestation in our centre between 2006 and 2017 via case‐control. We also conducted a questionnaire survey of mothers who experienced a delivery room cuddle to gain their feedback and perspectives.ResultsWe found no difference in age or temperatures on neonatal unit admission. There was no case of inadvertent extubation associated with cuddles. Parental feedback was very positive.ConclusionWith appropriate safeguards, delivery room cuddles are feasible and achievable for extremely preterm babies irrespective of birth gestation. Facilitation of the cuddle is an early and very important family‐centred care practice which seems much appreciated by parents and which may improve bonding, lactation, and maternal mental health.

Play-based interventions to support social and communication development in autistic children aged 2–8 years: A scoping review

Play is used by practitioners from across disciplinary backgrounds as a natural and enjoyable context for providing intervention and support in early childhood. In the case of autism interventions, many therapies are based on the association between social play and the development of social skills, language development, and communication skills, as these are often particular areas of challenge for autistic children. However, play is a wide-ranging concept and the extant literature on play-based interventions is large and heterogeneous. This means it is challenging for practitioners and families to navigate the evidence base and make choices about differing intervention strategies. This review aims to provide a comprehensive map of the research on this topic and to develop a conceptual framework to inform clinical decision-making. An initial stakeholder consultation confirmed the relevance of the topic to practitioners and autistic people. A scoping review methodology (preregistered) was used to identify relevant literature. We systematically searched seven databases to find peer-reviewed primary intervention studies of play-based approaches targeting language, social and communication outcomes for autistic children aged 2-8 years. We then summarised the literature using narrative synthesis and Evidence Gap Maps (EGMs). The literature was summarised according to a range of characteristics, including study design, population characteristics, agent of intervention and outcomes measured, among others. These summaries were then used to develop a framework for some key considerations for practitioners appraising play-based approaches. 388 studies met inclusion criteria. Approximately 21% of studies were RCTs, and over 50% had ≤10 participants. Over 45% of studies reported multiple relevant outcomes, with social play skills being the most common single intervention target. Girls and minority background groups are under-represented. A range of intervention types were identified, and some high-level categorisations are proposed.Main contribution: On the basis of the evidence synthesis we suggest important dimensions for appraisal of play-based interventions, including the role of play within an intervention (as a context, a key developmental mechanism, or a component of a larger approach), the underpinning philosophy (e.g. behaviourist or developmental), and the role of the practitioner (providing parent feedback, 1:1 intervention, group facilitation). The wide range of approaches uncovered by this review is a testament to the wonderful diversity inherent to both play and autism. However, research could usefully focus on consolidating the evidence base for existing approaches, rather than aiming for further diversification. Implications: The conceptual framework proposed in this review can help practitioners appraise the literature and aid their advice to families when making shared intervention decisions.

Autism Spectrum Disorder Parent Report for Outcome Monitoring: A Preliminary Report of Development and Clinical Utility.

Children with autism spectrum disorder (ASD) face challenges across many functional domains. A tool that gathers relevant clinical information before visits, emphasizing symptoms that are likely to change over development and inform clinical interventions, could improve health care quality, allowing for more patient-centered and efficient care. This study evaluated the clinical utility and preliminary psychometrics of the ASD Parent Report for Outcome Monitoring (ASD-PROM), a web-based measure assessing competence in core features of ASD, along with the breadth of concerns and comorbidities that frequently co-occur with ASD. An interdisciplinary team drafted the ASD-PROM and made iterative revisions based on parent feedback. Parents of 62 children completed the ASD-PROM before their autism-specialty clinical visit, 53 completed the ASD-PROM twice, and 48 completed the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) concurrently. Parents (n = 25) and clinicians (n = 13) completed postvisit surveys to assess utility (phase 1). The ASD-PROM was then released for general clinical use (phase 2). On a Likert scale (1 = very poorly, 10 = very well), parents found that ASD-PROM items described their child's abilities well (median = 8.0; interquartile range [IQR]: 7.0-9.5) and had a positive effect on care (median = 8.0; IQR: 7.0-10.0). Clinicians found the ASD-PROM effective in assessing parent-reported patient abilities (median = 9.0, IQR: 7.0-9.0) and felt the ASD-PROM helped make their care more patient-centered and efficient (both median = 8.0, IQR: 6.0-9.0). Two-week test-retest reliability was acceptable (0.95). ASD-PROM scores correlated positively with scores from similar domains on the Vineland-II (Pearson r 0.30-0.50, medium to large effects). The ASD-PROM is a freely available tool to gather information on developmental and behavioral functioning in children with ASD before autism-specialty clinical visits. Clinical utility and preliminary psychometrics are promising, although limitations (including a low response rate during clinical use and a need for additional in-depth assessments and potential resulting modifications to the tool) remain to be addressed. Ultimately, the ASD-PROM may help promote patient-centered and efficient care for children across a wide range of ages and developmental levels.

The Impact of an Adapted Climbing Program on Children with Attention-Deficit/Hyperactivity Disorder

Attention-Deficit/Hyperactivity Disorder impacts children’s participation in activities that require attention to instruction, sustained mental effort, and executive functioning. Physical activity has been correlated to improvement in attention in children with ADHD. Rock climbing challenges muscular endurance, attention, and route planning. Five participants, aged 8-13, participated in the climbing program. Attention was measured pre and post climbing intervention with Trail Making Test B (TMT-B) for time to complete. Exercise intensity was measured by heart rate. Parent feedback on behavior was collected with the Conner’s Parent Rating Scale (CPRS). The social validity of the intervention was measured by the IRP-15 measures. Statistically, significant intrasession attention improvements were noted in all 5 climbers (p=.43). Two climbers were consistently working at a moderate intensity (40-60% HRmax) while 3 climbers maintained a light level of intensity (20-40% HRmax). No statistically significant improvements were found on the CPRS, although improvements are noted with qualitative reports from parents. The IRP-15 showed 100% of parents believed rock climbing was an effective intervention for their children with ADHD. Rock climbing at a light to moderate intensity is associated with improvements in attention and behavior in children with ADHD.

A Clinical Trial Based on Reward Contingency to Improve Prone Tolerance and Motor Development is Feasible in 3- to 6-Month-Old Infants

Aims: The American Academy of Pediatrics recommends “parents to incorporate supervised, awake ‘prone play’ in their infant’s routine to support motor development and minimize the risk of plagiocephaly”. The purpose of this feasibility study was to compare usual care to a reward contingency–based intervention, developed to increase prone tolerance and improve motor skills. Methods: Ten full-term infants, 3–6- months old, with poor prone tolerance were randomized to either the Education group or Reward contingency group. Each group participated in three parent education sessions and 15 intervention sessions, over the period of three weeks. Infants in the Reward contingency group used the Prone Play Activity Center, a technology developed to reinforce motor behavior of infants in prone position. Intervention frequency and parent feedback data determined the feasibility of the interventions. Results: Infants in the Reward contingency group practiced a median of 12 of the 15 anticipated intervention sessions in the Prone Play Activity Center. These infants used the device for a mean of 18 minutes per day. Parents of infants in the Education group practiced a median of 10 sessions of the 15 anticipated intervention sessions. Conclusion: The reward contingency–based intervention is feasible for use in a future clinical trial with some modifications.

Parent and Professional Perceptions and Feedback on the Content of an eHealth Hearing Aid Learning Series for Parents of Children Who Are Deaf or Hard-of-Hearing

Purpose To qualitatively explore parent and professional perspectives regarding the content of select Hear to Learn tutorials to identify usefulness and meaningfulness of the tutorials, and to inform regarding key components to enhance usefulness of eHealth platforms. Method This study used a qualitative design with two stakeholder focus groups. Stakeholder groups included four parents of children who are deaf or hard-of-hearing, and six professionals serving children who are deaf or hard-of-hearing. Results Findings indicate that both stakeholders valued the tutorials generally as helpful; however, areas for improvement were suggested. Conclusion Use of visuals, step-by-step instructions, and depth of content were identified as key elements that may be considered to optimize benefits of eHealth material for parents.

Toilet training children with special needs using a Potty Monkey toy device.

Toilet training children with special needs can be challenging and can result in long-term consequences if inadequately addressed. This study evaluates the use of a 'Potty Monkey' toy for toilet training children with special needs. A pilot study using a 'Potty Monkey' to model timed voiding in children with special needs. We collected parental feedback and examined the experience of families using a 'Potty Monkey' to toilet train their child. Using logistic regression we explored patient factors for association with outcomes. Of 21 children in our study, 15 were male. Age ranged 4-10 years (median 6.3 years). Days that 'Potty Monkey' was used ranged 0-156 (median 22 days). At 6 months, nine children had improved, five were unchanged and four were worse (three were unknown). We found no evidence of association between patient factors (age, gender, days using 'Potty Monkey', baseline toileting ability, Paediatric Incontinence Questionnaire score) and toileting outcome. The experience of families was ambivalent. 10 families reported 'Potty Monkey' had been helpful however many complained it interfered with family schedules. Reasons for the child not responding positively were due to sensory issues, embarrassment and being developmentally not ready. Our study demonstrated the practical challenges of conducting research among children with special needs. Although some children's toileting improved after using 'Potty Monkey', we are uncertain 'Potty Monkey' is effective for toilet training children with special needs.

Domestication Phenotype Linked to Vocal Behavior in Marmoset Monkeys

The domestication syndrome refers to a set of traits that are the by-products of artificial selection for increased tolerance toward humans [1-3]. One hypothesis is that some species, like humans and bonobos, "self-domesticated" and have been under selection for that same suite of domesticated phenotypes [4-8]. However, the evidence for this has been largely circumstantial. Here, we provide evidence that, in marmoset monkeys, the size of a domestication phenotype-a white facial fur patch-is linked to their degree of affiliative vocal responding. During development, the amount of parental vocal feedback experienced influences the rate of growth of this facial white patch, and this suggests a mechanistic link between the two phenotypes, possibly via neural crest cells. Our study provides evidence for links between vocal behavior and the development of morphological phenotypes associated with domestication in a nonhuman primate.

Earlier Intervention for Medically Fragile Pediatric Inpatient Population

Earlier Intervention for Medically Fragile Pediatric Inpatient Population

Family-centered communication: A pilot educational intervention using deliberate practice and patient feedback

ObjectiveThere are few opportunities in medical education dedicated to learning skills for effective communication in life altering patient scenarios. We therefore aimed to develop and assess a longitudinal advanced communication curriculum for pediatric residents using patient feedback and deliberate practice. MethodsPediatric residents at a large academic center were randomized into 2 groups. The intervention group received 6 educational sessions from 2019 to 2020, parent feedback of performance via the Communication Assessment Tool (CAT), and monthly communication tips. Communication skills of both groups were assessed at the end of the intervention. ResultsWe collected 937 CAT assessments on 36 first-year residents. The intervention group demonstrated statistically significant improvement in communication skills from pre to post assessment (p = 0.0063, (odds ratio (OR) 1.76, 95 % confidence interval (CI) [1.17, 2.63]) compared to the control group (p = 0.080, OR 1.41, 95 % CI [0.96, 2.05]). ConclusionsThere are patient and self-identified performance gaps in communication skills for pediatric residents, underscoring the need for formalized curricula dedicated to these skills. Practice implicationsOur study highlights the value of deliberate practice and the integration of family feedback as an educational tool in communication skills development.

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

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. 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. 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. 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.

21. FAMILY CENTERED CARE: LONGITUDINAL COMMUNICATIONS TRAINING FOR RESIDENTS

Background Although a huge portion of medical care involves communication, there is little time dedicated to these skills. Additionally, family-centered communication is collaborative and interactive, and these skills are best taught through case-based approaches rather than passive lecture-type didactics. Objectives: We aimed to develop a longitudinal communication curriculum utilizing learner-identified content, delivered via interactive workshops over a 6-month period, supplemented with and guided by family feedback. Methods The curriculum was developed using Kern's scholarly approach. A needs assessment for resident communication skills was conducted with a survey and focus group. The Communication Assessment Tool (CAT) was used for parent feedback of residents’ performance early in the curriculum. Content for workshop sessions was developed from needs assessments, CAT results, and input from program leadership. The curriculum underwent expert internal and external review. Pediatric interns were randomly assigned to a control or intervention group. Six sessions were delivered over 6-months to the intervention group. CAT feedback was shared with the intervention group as part of the curriculum. Results Survey and focus groups identified themes of 1) lack of comfort with communication skills in difficult encounters, and 2) desire for more feedback and practice with these encounters. Five hundred surveys were collected on 36 interns using the CAT prior to the intervention. A 5-point likert scale was graded as 5 or non-5 scores. Residents performed most poorly in discussion of next steps (38% non 5) and in showing interest in families’ ideas of their children's health (28% non 5). Discussion There are self- and patient-identified performance gaps in many pediatric interns, underscoring the need for formalized curricula to teach skills specific to communication in pediatrics, particularly with emphasis on shared decision making and teach back methods. Narrative feedback from resident curriculum participants has demonstrated increased confidence and comfort levels with difficult communication. Future directions include assessment of the patient and family impact of this curriculum using follow-up CAT surveys.

Quality of Pediatric Healthcare Services and Associated Factors in Felege-Hiwot Comprehensive Specialized Hospital, North-West Ethiopia: Parental Perception.

BackgroundPoor quality of pediatric healthcare services at health facilities is a major contributing factor to child morbidity and mortality in low- and middle-income countries, including Ethiopia, and it brings parental dissatisfaction. Eliciting parents’ perception is an important method used to assess functionality or quality of pediatric healthcare services. Thus, the objective of this study was to assess the perceived quality of pediatric healthcare services and to identify factors for it in Felege-Hiwot Comprehensive Specialized Hospital, Northwest Ethiopia.MethodsA facility-based cross-sectional study was conducted among parents of childhood patients from September 15, 2019 to October 15, 2019; 407 participants were recruited. Stratified random sampling was used to select respondents and data were collected using face-to-face interviews. Frequencies, percentages, and means with standard deviations were used to describe profiles of respondents. Both bi-variable and multivariable logistic regressions were used to model the odds of perceived quality of pediatric healthcare services.ResultsThe proportion of perceived quality of pediatric healthcare services was 57.6% (95% CI:52.6–62.3%). College and above parental education status (AOR=5.22, 95% CI:2.39–11.38), urban residency (AOR=3.35, 95% CI:1.97–5.72), outpatient services (AOR=2.52, 95% CI:1.35–4.71), and surgical illnesses (AOR=2.18, 95% CI:1.28–3.73) were independent determinants for increased parental lower perceived level of quality. The odd of parental lower perceived level of quality was 2.42-times greater in those parents who did not prefer the hospital for revisiting (AOR=2.42, 95% CI:1.36–4.30).ConclusionPerceived quality of healthcare services in the hospital was low compared to the national plan which reflected that childhood patients did not receive optimal care. Educational status, place of residence, service delivering unit, illness type, and intention of hospital preference were independent determinants for parental perceived quality of pediatric healthcare service delivery. Continuous and periodic parental feedback should be considered in order to assess their satisfaction which in turn is an insight for quality improvement to be taken by the facility managers.

O26 Feasibility and Acceptability of BALANCE (Bringing Adolescent Learners with Autism Nutrition and Culinary Education)

Objective This study aims to test the feasibility and acceptability of BALANCE (Bringing Adolescent Learners with Autism Nutrition and Culinary Education) in adolescents with autism spectrum disorder (ASD) in a school setting. Use of Theory or Research The conceptual framework combines an approach to improve selective eating and other ASD-specific issues and social cognitive theory (SCT) constructs. Each of 8 intervention sessions has an activity linked to 1 or more SCT constructs, (eg, behavioral skills, goal-setting). Target Audience Adolescents with ASD aged 10-17 years with at least a third-grade reading level were recruited from a school for children with ASD. Twelve adolescents participated in October-December 2019. Program Description BALANCE consisted of 8 lessons: (1) Exploring taste, flavor, and texture; (2) Mealtimes and rules; (3) Food groups and nutrients; (4) Moderation; (5) New foods; (6) Cooking; (7) Fill and full; and (8) Sustaining healthy eating habits. Each lesson included interactive, group-based activities and tasting sessions, and was implemented in a 45- to 50-minute class period. Evaluation Methods Implementation and fidelity were measured using a checklist with items on adherence, quality, and exposure (dose delivered). Attendance was recorded. A focus group was conducted with students after Lesson 4, and Lessons 5-8 were revised based on their feedback. Results Lessons were administered with 100% adherence, high quality, and 100% exposure. On average, 11 students attended (ranged 10-12). Participants indicated that they liked small group activities and tasting sessions, and about half indicated that they made changes to their diet. Based on study findings, topics for Lessons 5 and 7 were modified to Beverages and Well-being, and weekly homework assignments were added. Conclusion BALANCE is feasible and acceptable in adolescents with ASD. Future research will examine parent and teacher feedback and test the efficacy of the intervention in a larger sample against a control group. Funding None.

The "EA brief": A single session of parent feedback and coaching to improve emotional attachment and emotional availability (EA).

The goal of this study was to determine the extent to which a brief parenting intervention provided the context for helping families to support positive mother-child interactions as well as more optimal mother and child outcomes. Participants in this study were middle income mothers and their children were between 0-3 years of age (N=25 dyads). Participants were filmed via Skype during a 20-minute mother-child free play and completed questionnaires (Time 1) before attending the brief intervention (involving: a single session of one-on-one parent feedback and coaching, and information via group meeting, texts, and reading) followed by a repeat of the 20-minute Skype interaction and the completion of the same questionnaires (Time 2). Paired samples t-tests were performed, revealing that mothers reported improvements in their personal well-being (using the Flourishing Scale), reports about the mother-child relationship (using the Emotional Availability Self Report), and observed interactions, particularly the child's side of the relationship (using the Emotional Availability System), from pretest to posttest. Results are discussed in terms of a single session of parent feedback and coaching (in conjunction with an informational group session and texts) potentially having a role in "planting a seed" for observed and self-reported parenting enhancement and child development.

Parent-Child Communication Outcomes of a RCT Testing a Legacy Intervention for Children with Advanced Cancer (GP703)

•Explain gaps in legacy research for pediatric palliative care and oncology.•Explain key components of our legacy intervention for children with advanced cancer.•Explain methods of our study that was part of a larger RCT. Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication. Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d. Frequency distributions summarized parent feedback on the intervention. Ninety-eight parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = 0.21-0.31). Parents reported that the intervention improved parent-child communication (72%) and child expression of feelings (86%). Although quantitative results suggest small effects of legacy-making most notably on father-child communication, qualitative findings indicate more positive experiences to the intervention for both the child and parents.

Data driven decision making to characterize clinical personas of parents of children with cystic fibrosis: a mixed methods study

BackgroundBeginning at a young age, children with cystic fibrosis (CF) embark on demanding care regimens that pose challenges to parents. We examined the extent to which clinical, demographic and psychosocial features inform patterns of adherence to pulmonary therapies and how these patterns can be used to develop clinical personas, defined as aspects of adherence barriers that are presented by parents and/or perceived by clinicians, in order to enhance personalized CF care delivery.MethodsWe undertook an explanatory sequential mixed-methods study consisting of i) multivariate clustering to create clusters corresponding to parental adherence patterns (quantitative phase); ii) parental participant interviews to create clinical personas interpreted from clustering (qualitative phase). Clinical, demographic and psychosocial features were used in supervised clustering against clinical endpoints, which included adherence to airway clearance and aerosolized medications and self-efficacy score, which was used as a feature for modeling adherence. Clinical implications were developed for each persona by combing quantitative and qualitative data (integration phase).ResultsThe quantitative phase showed that the 87 parent participants were segmented into three distinct patterns of adherence based on use of aerosolized medication and practice of airway clearance. Patterns were primarily influenced by self-efficacy, distance to CF care center and child BMI percentile. The two key patterns that emerged for the self-efficacy model were most heavily influenced by distance to CF care center and child BMI percentile. Eight clinical personas were developed in the qualitative phase from parent and clinician participant feedback of latent components from these models. Findings from the integration phase include recommendations to overcome specific challenges with maintaining treatment regimens and increasing support from social networks.ConclusionsAdherence patterns from multivariate models and resulting parent personas with their corresponding clinical implications have utility as clinical decision support tools and capabilities for tailoring intervention study designs that promote adherence.

Clinical Demonstration of the Potential of Parental Feedback in Reducing Deterioration During Group Psychotherapy With Children.

In recent years, great efforts have been exerted to minimize the rates of deterioration in clinical practice, especially in child psychotherapy. The present study explored the potential effect of routine outcome monitoring (ROM) with parents as a preventive intervention to reduce deterioration in children. Twenty-five children receiving treatment for emotional problems were randomized to parent-based, ROM-assisted group psychotherapy or to treatment as usual (TAU). A mixed-methods approach was utilized, with the number of deteriorating cases compared at the group level and two case illustrations assessed at the individual level. At the group level, there were fewer cases of deterioration in child's anxiety, parental stress, and quality of parent's alliance in the ROM-assisted group, compared with TAU. Case studies illustrated how ROM can be used as a tool to communicate with parents to prevent deterioration. Routine outcome monitoring in child psychotherapy may thus benefit therapy process and outcome. Limitations and directions for future research are discussed.

Identifying Predictors of Parents’ and Children’s Participation and Barriers in Randomized Clinical Trials

Abstract Objectives Background: Randomized controlled trials are considered the ‘gold standard’ to assess the efficacy and effectiveness of health care and dietary interventions, however, challenges with recruitment and retention of participants can be detrimental to the validity and generalizability of the study. Children and adolescents play a role in the decision to participate, although parents are the primary decision-makers. Exploring children and parent's knowledge, attitudes, and perceptions towards research can help to understand factors that influence participation and retention. Objective: To identify predictors of recruitment and retention in RCTs involving both parents and children to assist in the implementation of recruitment and retention strategies. Methods A systematic review of RCTs was conducted to explore the available evidence to compose a qualitative meta-summary. Studies were identified from 3 databases and restricted only to English language publications. Data reporting participant's predictors and barriers of recruitment and retention in RCTs involving children and adolescents aged 0 to 21 were identified. Year of publication ranged from 2006 to 2019. Studies not including children and studies not involving participant feedback were excluded. Results 53 records were identified; 32 were excluded due to exclusion of child and/or parent feedback, therefore 21 studies were included. Several themes were identified between parents and children that mentioned predictors: personal health benefit, altruism, trust in the research, contact with staff, benefit for parents themselves, benefit for the community, minimal risk to the child, monetary benefits, felt as the only option, influence by family and friends, recommendation from physician, and increase in knowledge. Barriers mentioned were: felt as the “guinea pig,” burden for child, decision too stressful, fear of randomization, no direct benefit, and time and financial constraints. The most common themes identified in several of the studies were personal health benefits, the risk to the child, altruism, time constraint, and no direct benefit. Conclusions Important predictors of recruitment and retention in RCTs are children's personal health benefits and risks, altruism, time constraint, and no direct benefit. Funding Sources NIH

Implementation Effectiveness of a Parent-Directed YouTube Video ("It Doesn't Have To Hurt") on Evidence-Based Strategies to Manage Needle Pain: Descriptive Survey Study.

BackgroundDespite the availability of high-quality evidence and clinical practice guidelines for the effective management of pediatric pain, this evidence is rarely used in practice for managing children’s pain from needle procedures such as vaccinations. Parents are generally unaware of pain management strategies they can use with their children.ObjectiveThis study aimed to develop, implement, and evaluate the implementation effectiveness of a parent-directed YouTube video on evidence-based strategies to manage needle pain in children.MethodsThis was a descriptive study. Analytics were extracted from YouTube to describe video reach. A Web-based survey was used to seek parent and health care professional (HCP) feedback about the video. The 2-minute 18-second video was launched on YouTube on November 4, 2013. In the video, a 4-year-old girl tells parents what they should and should not do to help needles hurt less. The key evidence-based messages shared in the video were distraction, deep breathing, and topical anesthetic creams. A group of parents (n=163) and HCPs (n=278) completed the Web-based survey. Measures of reach included number of unique views, country where the video was viewed, sex of the viewer, and length of watch time. The Web-based survey assessed implementation outcomes of the video, such as acceptability, appropriateness, penetration, and adoption.ResultsAs of November 4, 2018 (5 years after launch), the video had 237,132 unique views from 182 countries, with most viewers watching an average of 55.1% (76/138 seconds) of the video. Overall, both parents and HCPs reported strong acceptance of the video (ie, they liked the video, found it helpful, and felt more confident) and reported significant improvements in plans to use distraction, deep breathing, and topical anesthetic creams.ConclusionsThis parent-directed YouTube video was an acceptable and appropriate way to disseminate evidence about the procedure of pain management to a large number of parents.