Investigating the health status of primary school children in Tonga: Lessons learnt and reflections on field work in the Pacific Islands.

Globally, the child health focus has been on reducing under-5-year mortality, with large populations in low-resource regions prioritised. Children in older age groups, particularly in less populated regions such as the Pacific, have received limited attention. Child health research in the Pacific region has been lacking, and research approaches for the region have historically been from Western biomedical paradigms. We completed the study of primary school children's health over a period of 5 years. Firstly, we conducted a literature review, then we completed an audit of hospital admissions of primary school children, then we completed a two-round Delphi process and finally, we piloted the survey in three primary schools. Our results found there were high levels of oral health problems, ear health, obesity and exposure to violence and poverty impacting on the quality of health of primary school-age children. Identifying these indicators was made possible by the partnerships and trust established by the study team and provides specific and measurable targets for future work to improve the quality of child health outcomes. This paper describes key field work lessons learnt for research in the Pacific region. It must: (i) be on the platform of relationship, cultural safety and local ownership; (ii) include consideration of holistic Pacific paradigms of health; (iii) be adaptive to the context and environment; and (iv) be committed to long-term partnership and work.

Understanding barriers for research involvement among paediatric trainees: a mixed methods study.

BACKGROUND: Child Health research is reported to be at worryingly low level by the Royal College of Paediatrics and Child Health. Recent survey showed that 54.5% of paediatric consultants in the United Kingdom do not do any research at all. We conducted a mixed methods study to understand barriers and facilitators for research involvement among paediatric trainees who are going to fill these consultant posts in the future. METHODS: A questionnaire based on a validated index for research and development was completed by 136 paediatric trainees within a region in the North of England (Yorkshire and Humber). Twelve semi-structured interviews were conducted with stratified purposive sampling. Descriptive statistics and Chi-Square test for independence were used for quantitative analysis. Thematic content analysis was done for interviews based on analysis method framework. RESULTS: 136 out of 396 trainees responded to the survey. There was a significant relationship between confidence in using research in practice and ability to understand research terminology. This was not related to research experience or training. Males were significantly more likely to have presented a research paper, know how research influences practice and have more confidence in using research in practice than females. There was no significant relationship between gender and research training or highest qualification. Time constraints and lack of academic culture were the most frequently mentioned barriers in the survey. Over-arching themes identified from the interviews were related to lack of academic culture, opportunities provided in current training scheme and constraints related to time availability along with workforce management. CONCLUSION: Paediatric research requires a supportive academic culture with more flexibility in training scheme and immediate attention to a pressing staffing crisis.

Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health.

BACKGROUND: Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course. MAIN TEXT: From its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential. CONCLUSIONS: To meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018-2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research.

In the last two decades there has been a clear commitment in Canada (and the world) to include patients and their families in health research­a process called patient-oriented research or as we refer to it­family engagement in research. In 2011, the Canadian Institutes of Health Research introduced the Strategy for Patient-Oriented Research to make this happen. To support POR in neurodevelopmental disability and child health, CanChild Centre for Childhood Disability Research teamed up with Kids Brain Health Network and McMaster Continuing Education. Together, a team of family caregivers and researchers co-created the Family Engagement in Research (FER) Course, a 10-week online course.The purpose of the FER Course is for researchers and family partners to learn about family engagement principles and how to use them in research. The course covers core areas in family engagement including how to find each other, how families and researchers can work together, and ways to overcome common challenges in research partnerships. The course uses online group sessions, discussion boards, and various resources such as research papers and videos. Through a group project, family partners and researchers collaborate to create a resource on family engagement. Completing the FER Course researchers and family members earn a McMaster University micro-credential and become part of a growing global community of FER Course graduates.Over six years (2018­2023), the FER Course has trained more than 430 researchers and family partners from 20 countries. The course has strengthened capacity in family engagement and is building a worldwide community of researchers, trainees, self-advocates, and family partners who are dedicated to improving neurodevelopmental disability and child health research through meaningful engagement.

Reporting standards for child health research were few and poorly implemented.

OBJECTIVES: This study aims to identify existing reporting standards for child health research, assess the robustness of the standards development process, and evaluate the dissemination of these standards. STUDY DESIGN AND SETTING: We searched MEDLINE, the EQUATOR Network Library, and Google to identify reporting standards for child health research studies. We assessed the adherence of the Guidance for Developers of Health Research Reporting Guidelines (GDHRG) by the identified reporting standards. We also assessed the use of the identified reporting standards by primary research studies, and the endorsement of the included reporting standards by journals. RESULTS: We identified six reporting standards for child health research, including two under development. Among the four available standards their median adherence to the 18 main steps of the GDHRG was 58.35% (range: 27.8%-83.3%). None of these four reporting standards had been endorsed by pediatric journals indexed by the Science Citation Index. Only 26 primary research studies declared that they followed one of the reporting standards. CONCLUSION: There is a quantitative and qualitative paucity of well-developed reporting standards for child health research. The available standards are also poorly implemented. This situation demands an urgent need to develop robust standards and ensure their implementation.

Co-development and Usability Testing of Research 101: A Patient-Oriented Research Curriculum in Child Health (PORCCH) E-Learning Module for Patients and Families.

Background: Engaging patients and families as research partners increases the relevance, quality, and impact of child health research. However, those interested in research engagement may feel underequipped to meaningfully partner. We sought to co-develop an online learning (e-learning) module, "Research 101," to support capacity-development in patient-oriented child health research amongst patients and families. Methods: Module co-development was co-led by a parent and researcher, with guidance from a diverse, multi-stakeholder steering committee. A mixed-methods usability testing approach, with three iterative cycles of semi-structured interviews, observations, and questionnaires, was used to refine and evaluate the e-learning module. Module feedback was collected during testing and a post-module interview, and with the validated System Usability Scale (SUS), and satisfaction, knowledge, and self-efficacy questionnaires. Transcripts and field notes were analyzed through team discussion and thematic coding to inform module revisions. Results: Thirty participants fully tested Research 101, and another 15 completed confirmatory usability testing (32 caregivers, 6 patients, and 7 clinician-researchers). Module modifications pertaining to learner-centered design, content, aesthetic design, and learner experience were made in each cycle. SUS scores indicated the overall usability of the final version was "excellent." Participants' knowledge of patient-oriented research and self-efficacy to engage in research improved significantly after completing Research 101 (p < 0.01). Conclusions: Co-development and usability testing facilitated the creation of an engaging and effective resource to support the scaling up of patient-oriented child health research capacity. The methods and findings of this study may help guide the integration of co-development and usability testing in creating similar resources.

Development of the patient-oriented research curriculum in child health (PORCCH).

BACKGROUND: The Canadian Institutes for Health Research launched a national 'Strategy for Patient-Oriented Research' (SPOR) in 2011. Patient-oriented research is defined as a continuum of research that engages patients as partners, focuses on patient-identified priorities, and improves patient outcomes. Capacity development is a core element of SPOR. Barriers to patient-oriented research include unfamiliarity with the research process for patients and families and unfamiliarity with the methods of patient and family engagement for researchers. METHODS: The aim of the Patient-Oriented Research Curriculum in Child Health (PORCCH) is to build capacity in patient-oriented research in child health among patients and families, researchers, healthcare professionals, decision-makers, and trainees through a curriculum delivered via a series of interactive online modules (e-learning). A multi-disciplinary, multi-stakeholder steering committee, which included patients and families, guided the development of the curriculum and provided feedback on individual modules. The content, design, and development of each module were co-led by a parent and researcher in an equal partnership. RESULTS: PORCCH consists of a series of five modules. All modules are interactive and include video vignettes and knowledge comprehension questions. Access to the modules is free and each module takes approximately 30 min to complete. The five modules are: Research 101 (an Introduction to Patient-Oriented Research, parts 1 and 2), Patient Engagement 101 (an Introduction to Patient Engagement in Child Health Research, parts 1 and 2), and Research Ethics 101. CONCLUSIONS: PORCCH was developed specifically to overcome recognized barriers to the engagement of patients and families in child health research. The aim of the curriculum is to build capacity in patient-oriented research in child health. The goal is for PORCCH to be a useful resource for all stakeholders involved in patient-oriented research: patients and families, researchers, healthcare professionals, decision-makers, and trainees.

Canada launched a national 'Strategy for Patient-Oriented Research' in 2011. The aim of the strategy is to improve patients' health and well being by focusing on research that is important to patients, and by involving patients and families as equal partners in research. Our group developed the Patient-Oriented Research Curriculum in Child Health (PORCCH) to help patients and families, and other individuals involved in research, learn about patient-oriented research. Patients and families will learn about the research process, who is involved, and the timelines of a research study. Researchers will learn about the methods used in patient-oriented research and some practical ways to meaningfully engage patients and families in research. The online curriculum includes five modules. The design and development of each module was co-led by a parent and researcher in an equal partnership. Access to the modules is free ( www.porcch.ca ) and each module takes approximately 30 min to complete. The five modules are: a) Research 101 part 1, What is Health Research and Who is Involved? b) Research 101 part 2, Timeline of a Research Study, c) Patient Engagement 101 part 1, Foundations of Patient Engagement, d) Patient Engagement 101 part 2, Patient Engagement in Practice, and e) Research Ethics 101. It is hoped that PORCCH will be a useful resource for patients and families and other stakeholders involved in patient-oriented research in child health.

Harnessing the power of telemedicine to accomplish international pediatric outcome research during the COVID-19 pandemic.

The COVID-19 pandemic occurred during planned neurodevelopmental follow-up of Colombian children with antenatal Zika-virus exposure. The objective of the study was to leverage the institution's telemedicine infrastructure to support international clinical child outcome research. In a prospective cohort study of child neurodevelopment (NCT04398901), we used synchronous telemedicine to remotely train a research team and perform live observational assessments of children in Sabanalarga, Colombia. An observational motor and conceptional standardized tool kit was mailed to Colombia; other materials were translated and emailed; team training was done virtually. Children were recruited by team on the ground. Synchronous activities were video-recorded directly to two laptops, each with a telehealth Zoom link to allow simultaneous evaluation of "table" and "standing" activities, and backup recordings were captured directly on the device in Colombia. The U.S. team attended live over Zoom from four states and five distinct locations, made observational notes, and provided real-time feedback. Fifty-seven, 3-4-year-old children with Zika-virus exposure and 70 non-exposed controls were studied during 10 daytrips. Direct laptop recording ensured complete record of child activities due to internet outages. Telemedicine can be used to successfully perform international neurodevelopmental outcome research in children during the COVID-19 pandemic. Telemedicine can benefit global health studies.

Using a 3 stage process to create a consumer research contact list in a paediatric health setting: the PARTICIPATE project.

The impact of child health research can be far reaching; affecting children's immediate health, their adult health, the health of future generations and the economic wellbeing of countries. Consumer and community involvement is increasingly recognised as key to successful research recruitment. Systematic approaches to research recruitment include research registries or research contact lists. OBJECTIVE: Develop a process of creating a consumer research contact list for participating in future research opportunities at a children's health service. METHODS: A healthcare improvement approach using a 3 stage framework; 1) evidence review and consultation 2) co-production of a research communications plan with stakeholders (including consumers), including a draft research information brochure 3) prototyping involved iteratively testing the brochure, surveying parents or carers who attended outpatient clinics or the hospital Emergency Department, and conducting follow up telephone calls. RESULTS: There was overall support for the creation of a research contact list, but some unknowns remain. 367 parents or carers completed the survey and 36 participated in a follow up telephone call. Over half would be willing to join a research contact list and more than 90% of the children of parents or carers surveyed were not currently participating in research. Several potential barriers identified by health service staff were dispelled. Research communications and a future contact list should be available in electronic form. CONCLUSIONS: There was strong support for creating a research contact list. The approach will inform our future directions including creation of an electronic research contact list easily accessible by consumers of the children's health service. Recruiting enough children to participate in research studies can be challenging. Establishing a registry or list of young people willing to be contacted to participate in research is one way of addressing this problem. At our children's health service, we wanted to explore the idea of developing a research contact list and we were particularly keen to involve consumers and community members in this process, which involved: 1.Reviewing other examples of research contact lists and consulting with a range of people, including consumers and community members, 2. Co-producing a research communications plan with parents, young people, health service staff and research staff, including a draft research information brochure for families, and 3. Testing the acceptability of the brochure by surveying parents or carers who attended outpatient clinics or the hospital Emergency Department, and conducting follow up telephone calls with them. 367 parents or carers completed a survey and 36 participated in a follow up telephone call. Over half were willing to join a research contact list and more than 90% of the children of parents or carers surveyed were not currently participating in research. Several potential barriers raised by consumers and health professionals in the first stage of the project were not found to be a concern for the parents or carers surveyed. Responses showed research communications and a future contact list should be available in electronic form. These findings will inform the future creation of an electronic research contact list, easily accessible by consumers of the children's health service.

Factors Associated with Readmission of Pediatric Patients in a Developing Nation.

OBJECTIVES: To determine the incidence of readmission in pediatric patients in a tertiary care hospital in a developing nation and to ascertain factors precipitating readmissions. METHODS: A prospective study was conducted from February 2016 through January 2017 at a tertiary care hospital. Children between 1 mo to 15 y of age were included if they were readmitted within 60 d of discharge. The risk factors for readmission were determined on the basis of medical record review and a structured questionnaire and the ascribed cause of readmission was grouped into three categories: Patient specific factors, Hospital specific factors and Unrelated/ New illness. RESULTS: The readmission rate was 3%, out of which 80.66% were found to be causally related to the index admission. Several sociodemographic characteristics i.e. lack of health information like television, lower socioeconomic status, absence of adequate breastfeeding, lower age, migrants were found to be significantly associated with readmission along with other patient specific factors like presence of cardiac disease, presence of comorbid conditions like anemia, malnutrition, and global developmental delay. The most important cause for readmission was determined as patient specific (48.66%) followed by hospital specific (38%) and unknown/unrelated factors (13.33%). CONCLUSIONS: The progression of the primary illness and social determinants of pediatric readmissions are important contributing risk factors for readmission in developing countries in pediatric patients. Multicentric studies are needed from this region of the world to include different hospital readmissions rate and to address the issue of potential preventability of pediatric readmissions.

Measuring hospital quality using pediatric readmission and revisit rates.

OBJECTIVE: To assess variation among hospitals on pediatric readmission and revisit rates and to determine the number of high- and low-performing hospitals. METHODS: In a retrospective analysis using the State Inpatient and Emergency Department Databases from the Healthcare Cost and Utilization Project with revisit linkages available, we identified pediatric (ages 1-20 years) visits with 1 of 7 common inpatient pediatric conditions (asthma, dehydration, pneumonia, appendicitis, skin infections, mood disorders, and epilepsy). For each condition, we calculated rates of all-cause readmissions and rates of revisits (readmission or presentation to the emergency department) within 30 and 60 days of discharge. We used mixed logistic models to estimate hospital-level risk-standardized 30-day revisit rates and to identify hospitals that had performance statistically different from the group mean. RESULTS: Thirty-day readmission rates were low (<10.0%) for all conditions. Thirty-day rates of revisit to the inpatient or emergency department setting ranged from 6.2% (appendicitis) to 11.0% (mood disorders). Study hospitals (n = 958) had low condition-specific visit volumes (37.0%-82.8% of hospitals had <25 visits). The only condition with >1% of hospitals labeled as different from the mean on 30-day risk-standardized revisit rates was mood disorders (4.2% of hospitals [n = 15], range of hospital performance 6.3%-15.9%). CONCLUSIONS: We found that when comparing hospitals' performances to the average, few hospitals that care for children are identified as high- or low-performers for revisits, even for common pediatric diagnoses, likely due to low hospital volumes. This limits the usefulness of condition-specific readmission or revisit measures in pediatric quality measurement.