Disseminating the F-Words for Child Development to Parents of Children With Developmental Disabilities in Iran: A Qualitative Pilot Feasibility Study.

BACKGROUND: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability. METHODS: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis. RESULTS: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged. CONCLUSION: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran.

Defining research priorities and needs in cancer symptoms for adults diagnosed with cancer: an Australian/New Zealand modified Delphi study.

PURPOSE: This study asked consumers (patients, carers) and healthcare professionals (HCPs) to identify the most important symptoms for adults with cancer and potential treatment interventions. METHODS: A modified Delphi study was conducted involving two rounds of electronic surveys based on prevalent cancer symptoms identified from the literature. Round 1 gathered information on participant demographics, opinions and/or experience on cancer symptom frequency and impact, and suggestions for interventions and/or service delivery models for further research to improve management of cancer symptoms. In Round 2, respondents ranked the importance of the top ten interventions identified in Round 1. In Round 3, separate expert panels of consumers and healthcare professionals (HCPs) attempted to reach consensus on the symptoms and interventions previously identified. RESULTS: Consensus was reached for six symptoms across both groups: fatigue, constipation, diarrhoea, incontinence, and difficulty with urination. Notably, fatigue was the only symptom to reach consensus across both groups in Round 1. Similarly, consensus was reached for six interventions across both groups. These were the following: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other pharmacological interventions. CONCLUSIONS: Consumers and HCPs prioritise differently; however, the symptoms and interventions that reached consensus provide a basis for future research. Fatigue should be considered a high priority given its prevalence and its influence on other symptoms. The lack of consumer consensus indicates the uniqueness of their experience and the need for a patient-centred approach. Understanding individual consumer experience is important when planning research into better symptom management.

Exploring 10 years of dissemination of the F-words for Child Development: A multifaceted case study.

BACKGROUND: There is growing interest in exploring how to move research findings into practice. Since 2014, a team of families and researchers has been working to promote and study the dissemination of the "F-words for Child Development" (Function, Family, Fitness, Fun, Friends, and Future). This case study describes our dissemination strategies and uses the Diffusion of Innovation theory to understand the factors contributing to the uptake of the F-words-a function-promoting, strengths-based, and family-centred innovation in child health and development. METHODS: Between November 2011 and November 2021, we collected data from multiple sources: our dissemination strategies, including affiliated documents/artefacts (e.g., videos and presentations) and evaluation data (e.g., surveys and Google/video analytics). We used a two-step analysis: (1) a chronological time series to describe the processes involved along with indicators of dissemination over time (e.g., increase knowledge and awareness); and (2) Diffusion of Innovation theory to explore the factors that contributed to the uptake of the F-words. RESULTS: Multifaceted dissemination strategies were essential to raise awareness and increase families' and service providers' knowledge of the F-words. These included three primary strategies: (i) development and distribution of educational materials; (ii) presentations at educational meetings; and (iii) educational outreach visits. Additional strategies, such as the use of mass media, collaboration with early adopters/champions, and the involvement of family members further supported dissemination efforts. Diffusion of Innovation factors (innovation characteristics, time, social systems, and communication channels) all contributed to the uptake of this innovation. CONCLUSIONS: Purposeful planned dissemination practice, to increase knowledge and awareness of an innovation, is an important step in the knowledge translation process. Over a period of 10 years, through the use of multiple dissemination strategies conducted in partnership with families and service providers, the F-words have spread globally. Diffusion of Innovation theory has served to help understand how and why the F-words are being shared and adopted around the world.

Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership.

INTRODUCTION: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. METHODS: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. FINDINGS: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. CONCLUSION: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

Surgical outcomes following colorectal cancer resections in patients aged 80 years and over: results from the Australia and New Zealand Binational Colorectal Cancer Audit.

AIM: The primary aim was to compare the 30-day morbidity and mortality in patients aged ≥80 years undergoing surgery for colorectal cancer with those aged <80 years. The secondary aim was to identify independent outcome predictors. METHOD: This was a retrospective study of patients undergoing surgery for colorectal cancer between January 2007 and February 2018. Patients were divided into those <80 years and those ≥80 years at the time of surgery. Data had been collected prospectively by the Australasian Binational Colorectal Cancer Audit and included patient demographics, site and stage of tumour, comorbidity, operative details, American Society of Anesthesiologists score (ASA), pathological staging, 30-day mortality and morbidity (medical and surgical). Univariate and multivariate analyses were used to identify predictors of 30-day morbidity and mortality. RESULTS: During the study period, 4600 out of 20 463 (22.5%) patients were ≥80 years. They had a greater 30-day mortality after both colonic (97/2975 [3.3%] vs. 66/7010 [0.9%], P < 0.001) and rectal resections (50/1625 [3.1%] vs. 36/9006 [0.4%], P < 0.001) compared with younger patients. They also had an increased length of stay (colon cancer, 9 vs. 7 days; rectal cancer, 10 vs. 8 days; P < 0.001) and medical complications (colon cancer, 23.5% vs. 12.7%; rectal cancer, 25.2% vs. 11.2%; P < 0.001). Surgical complications were equivalent. Age ≥80 years was not an independent predictor of 30-day morbidity or mortality. Patients ≥80 years who were ASA 2/3 and had rectal cancer seemed to fare worse in terms of 30-day mortality (ASA 2, 22%, 95% CI 9%-36%, P < 0.001; ASA 3, 11%, 95% CI 4%-19%, P< 0.001). CONCLUSIONS: Postoperative morbidity and mortality are significantly greater in patients ≥80 years undergoing colorectal cancer surgery. Any recommendation for surgery in this age group should take into account patient comorbidity and not be based on age alone.

Service Providers' Perspectives on Using the 'F-Words in Childhood Disability': An International Survey.

AIMS: The 'F-words in Childhood Disability' - operationalizing the International Classification of Functioning, Disability and Health Framework - have attracted great interest around the world. However, we have yet to learn how service providers (SPs) are using them. The aim of this study was to explore international SPs' attitudes toward and use of the 'F-words'. METHODS: A survey was administered, guided by the Theory of Planned Behavior, including Likert-scaled statements and an open-ended question. Ninety-one SPs working with children with impairments from 27 countries completed the survey. RESULTS: While 82 agreed the 'F-words' are good practice, only 60 are using the 'F-words'. Similarly, 52 SPs agreed that their colleagues approved of their use and 54 felt they were easy for families to use and understand. Respondents reported three main uses: (i) support of preexisting clinical approaches, (ii) direct integration into practice, and (iii) being taught in higher education. They also identified barriers to implementation (e.g., alternative clinical approaches and limited resources). CONCLUSIONS: Findings provide insights in how the 'F-words' are being used and the limitations thereof, which can inform future directions to support international implementation. With international SPs, we need to develop adapted dissemination tools to support uptake by individuals worldwide.

Exploring the international uptake of the "F-words in childhood disability": A citation analysis.

BACKGROUND: The "F-words in childhood disability" (function, family, fitness, fun, friends, and future) were introduced in a concept paper in 2012 entitled, "The F-words in childhood disability: I swear this is how we should think!". The "F-words" are grounded in, and aim to operationalize, the World Health Organization's (World Health Organization, 2001) International Classification of Functioning, Disability and Health (ICF) framework. A citation analysis was conducted to explore the extent of research uptake of the "F-words" concepts. METHODS: Three databases-Google Scholar, Wiley Online, and Web of Science-were searched from July 2012 to December 2018 for sources that cited the original F-words paper. Dates of publication and countries of first authors were extracted from all cited articles, and a taxonomy was developed to categorize the type of usage. RESULTS: The search yielded 157 sources from 26 countries, and the number of citations has continued to increase since the paper's publication. Sources were placed into three categories: cited/referenced (n = 109; i.e., the paper was simply cited), integrated/informed (n = 36; i.e., the F-words were stated within the text), and non-English (n = 12). Of the 36 integrated/informed sources, 34 (94.4%) applied the F-words to the ICF framework and five themes emerged with respect to the use of the F-words: (a) support of a holistic approach to childhood disability, (b) association of the F-words to physical activity and rehabilitation, (c) application and measurement of quality of life, (d) F-words research team-related papers, and (e) "other" category. CONCLUSION: This citation analysis shows that the F-words are mainly being used to operationalize the ICF, support a holistic approach to childhood disability, and inform physical activity and rehabilitation-based interventions. These perspectives will play an important role in informing the next steps with respect to moving the F-words into research and practice.

Hemostasis and thrombosis in major liver resection.

The liver plays an important role in the balance between hemostasis and thrombosis. Hepatic resection, particularly when performed in the presence of underlying parenchymal liver disease, can cause perturbation of this balance. This review summarizes the changes that occur in normal hemostasis and thrombosis before, during, and after nontransplant hepatic resection and, wherever possible, provides strategies for the perioperative management of bleeding and thrombosis.

Perspectives in childhood-onset disabilities: integrating 21st-Century concepts to expand our horizons.

PURPOSE: A powerful aphorism states: "If I hadn't believed it, I wouldn't have seen it!" This challenging notion reminds us how strongly we are influenced by prevailing ideas, and how we interpret things according to current fashions and teachings. MATERIALS AND METHODS: In this paper we present and discuss contemporary perspectives concerning childhood-onset disability and the evolving nature of how people are thinking and acting. We illustrate these ideas by reminding readers of how we have all traditionally been trained and acculturated to think about many dimensions of neurodevelopmental disability ("What?"); reflect on the impact of these ways of thinking in terms of what we have conventionally "seen" and done ("So What?"); and contrast those traditions with contemporary concepts that we believe or know impact the field ("Now What?"). RESULTS: Many of the concepts discussed here will be familiar to readers. In taking this analytically critical perspective we aim to illustrate that by weaving these individual threads together we are able to create a coherent fabric that can serve children with childhood-onset NDD, their families, service providers, the community, and policy-makers. We do not purport to offer a comprehensive view of the whole field. CONCLUSIONS: We encourage readers to consider the integration of these new ways of thinking and acting in our still-evolving field of "childhood-onset disability".

21st-century thinking about childhood-onset neurodisability builds on WHO's ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention.

Patient, Family, Caregiver, and Community Engagement in Research: A Sensibility Evaluation of a Novel Infographic and Planning Guide.

Background: Engaging patients, families, caregivers, and the community (PFCCs) throughout the research cycle ensures that research is meaningful for the target population. Although tools have been developed to promote PFCC engagement, many are lengthy, complex, and lack recommended behaviours. This study evaluated the sensibility of an infographic and accompanying planning guide for facilitating engagement of PFCCs in research. Methods: Thirteen rehabilitation researchers reviewed the PFCC engagement tool and planning guide, participated in a semi-structured interview, and completed a 10-item sensibility questionnaire. Interviews were transcribed, imported into NVivo, and analyzed using direct content analysis. Median scores and proportions of responses for each of the 10 items in the questionnaire were calculated. Results: Median scores for all questionnaire items were ≥ 4 on a 7-point Likert Scale. Participants reported the tool was easy to navigate, contained relevant items to promote PFCC engagement, and followed a logical sequence. Suggested modifications of the tool related to formatting, design, and changing the title. Conclusions: The tool was deemed sensible for overt format, purpose and framework, face and content validity, and ease of usage and provides guidance to engage PFCCs across the research cycle. Further studies are recommended to assess the effectiveness of the tool to engage PFCCs in research.

Historique: la mobilisation des patients, des familles, des proches et de la communauté (PFPC) tout au long du cycle de la recherche permet de garantir que celle-ci soit significative pour la population ciblée. Même si des outils ont été mis au point pour promouvoir la mobilité des PFPC, bon nombre sont longs, complexes et dénués d'indications sur les comportements recommandés. La présente étude visait à évaluer la sensibilité d'une infographie et du guide de planification qui l'accompagne pour favoriser la mobilisation des PFPC en recherche. Méthodologie: au total, 13 chercheurs en réadaptation ont examiné l'outil de mobilisation des PFPC et le guide de planification, ont participé à une entrevue semi-structurée et ont rempli un questionnaire de sensibilité en dix points. Les entrevues ont été transcrites, importées dans NVivo et évaluées au moyen d'une analyse directe de contenu. Les scores médians et les proportions des réponses ont été calculés pour chacun des dix points du questionnaire. Résultats: les scores médians à tous les points du questionnaire étaient d'au moins 4 sur une échelle de Likert en sept points. Les participants ont indiqué que l'outil était facile à parcourir, contenait des points appropriés pour favoriser la mobilisation des PFPC et respectait une séquence logique. Les modifications proposées portaient sur le formatage, le graphisme et le changement de titre. Conclusions: l'outil était considéré comme sensible pour son caractère explicite, son objectif et sa structure, sa validité apparente et de contenu et sa facilité d'utilisation. De plus, il contenait des conseils pour mobiliser les PFPC tout au long du cycle de recherche. II est recommandé de réaliser d'autres études pour évaluer l'efficacité de l'outil à mobiliser les PFPC en recherche.

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.

Effects of introducing an enhanced recovery after surgery programme for patients undergoing open hepatic resection.

OBJECTIVES: Enhanced recovery after surgery (ERAS) protocols are coming to represent the standard of care in many surgical procedures, yet data on their use following hepatic surgery are scarce. The aim of this study was to review outcomes after the introduction of an ERAS programme for patients undergoing open hepatic resection. METHODS: A retrospective review of patients undergoing open hepatic resection from March 2005 to June 2011 was carried out. The primary outcome measure was total hospital length of stay (LoS) (including readmissions). Principles associated with enhanced recovery after surgery were documented and analysed as independent predictors of hospital LoS. RESULTS: A total of 120 patients underwent 128 consecutive hepatic resections, 84 (65.6%) of which were performed in patients with underlying colorectal metastases and 64 (50.0%) of which comprised major hepatic resections. The median hospital LoS was reduced from 6 days to 3 days from the first to the fourth quartiles of the study population (P = 0.021). The proportion of patients suffering complications (26.6%) remained constant across the series. Readmissions increased from the first quartile (none of 32 patients) to the fourth quartile (seven of 32 patients) (P = 0.044). Following multivariate analysis, only the development of a complication (P < 0.001), total postoperative i.v. fluid (P = 0.003) and formation of an anastomosis (P = 0.006) were independent predictors of hospital LoS. CONCLUSIONS: An ERAS programme can be successfully applied to patients undergoing open hepatic resection with a reduction in hospital LoS, but an increase in the rate of readmissions.

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities.

BACKGROUND: Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18-25) with NDD to enhance their knowledge, confidence, and skills as research partners. Our secondary objective was to identify the benefits and challenges of engaging youth with NDD in a POR approach. METHODS: Our team of four youth and one parent with lived experience [Youth Engagement in Research (YER) partners] and six researchers engaged in POR to investigate the primary objective via two phases: (1) individual interviews with youth living with NDD and (2) a two-day virtual symposium with focus groups with youth and researchers. Collaborative qualitative content analysis was employed to synthesize the data. Our secondary objective was assessed by asking our YER partners to complete the Public and Patient Engagement Evaluation Tool (PPEET) survey and participate in reflective discussions. RESULTS: Phase 1 participants (n = 7) identified various barriers and facilitators to their engagement in research and offered suggestions to meet their needs through minimizing barriers and integrating facilitators, which would subsequently enhance their knowledge, confidence, and skills as research partners. Informed by phase 1, phase 2 participants (n = 17) prioritized the following POR training needs: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. For delivery methods, participants stated the importance of youth representation, using Universal Design for Learning, and co-learning between youth and researchers. Based on the PPEET data and subsequent discussions, YER partners agreed that they were able to express views freely, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, ensuring multiple methods for engagement, and working under short timelines. CONCLUSION: This study identified important training needs for youth with NDD and for researchers to engage in meaningful POR, which can subsequently inform the co-production of accessible training opportunities with and for youth.

Partnerships between researchers and youth, known as patient-oriented research (POR), are needed to make sure research is meaningful to youth. Our main goal was to explore the training needs of youth (ages 18-25) with neurodevelopmental disabilities (NDD) to enhance their knowledge, confidence, and skills as research partners. To find out, our team of four youth and one parent with lived experience (YER partners) and six researchers completed this project in two parts: 1) interviews with youth and 2) a two-day virtual workshop with youth and researchers. Data from the two parts were reviewed to answer our question. We learned from Part 1 that the needs of participants can be met by providing support and reducing barriers in POR. From Part 2, the top three important topics in partnerships were: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. Participants in the workshop emphasized having different youth represented, using a framework that allows learning for everyone, and co-learning between youth and researchers in the creation of learning materials. Our second goal was to understand the benefits and challenges of our partnership. To assess, YER partners completed a survey and reflected about their experiences. YER partners agreed on being able to express views, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, providing multiple ways to partner, and working under short timelines. Overall, the study described important POR needs for youth and researchers, which can inform future training opportunities.

ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers' perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability.

AIMS: This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE - co-designed by parents and researchers - is an early intervention program for parents raising children with neurodisability. METHODS AND PROCEDURES: Using an integrated Knowledge Translation approach, this feasibility study explored parents' perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description. OUTCOMES AND RESULTS: Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE. CONCLUSIONS AND IMPLICATIONS: ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study.

Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation.

BACKGROUND: Connections between individuals and organizations can impact knowledge translation (KT). This finding has led to growing interest in the study of social networks as drivers of KT. Social networks are formed by the patterns of relationships or connections generated through interactions. These connections can be studied using social network analysis (SNA) methodologies. The relatively small yet diverse community in the field of child development and rehabilitation (CD&R) in Canada offers an ideal case study for applying SNA. The purposes of this work are to (1) quantify and map the structure of Canadian CD&R KT networks among four groups: families, health care providers, KT support personnel, and researchers; (2) explore participant perspectives of the network structure and of KT barriers and facilitators within it; and (3) generate recommendations to improve KT capacity within and between groups. Aligning with the principles of integrated KT, we have assembled a national team whose members contribute throughout the research and KT process, with representation from the four participant groups. METHODS: A sequential, explanatory mixed-method study, within the bounds of a national case study in the field of CD&R. Objective 1: A national SNA survey of family members with advocacy/partnership experience, health care providers, KT support personnel, and researchers, paired with an anonymous survey for family member without partnership experience, will gather data to describe the KT networks within and between groups and identify barriers and facilitators of network connections. Objective 2: Purposive sampling from Phase 1 will identify semi-structured interview participants with whom to examine conventional and network-driven KT barriers, facilitators, and mitigating strategies. Objective 3: Intervention mapping and a Delphi process will generate recommendations for network and conventional interventions to strengthen the network and facilitate KT. DISCUSSION: This study will integrate network and KT theory in mapping the structure of the CD&R KT network, enhance our understanding of conventional and network-focused KT barriers and facilitators, and provide recommendations to strengthen KT networks. Recommendations can be applied and tested within the field of CD&R to improve KT, with the aim of ensuring children achieve the best health outcomes possible through timely access to effective healthcare.

Outcomes following open radical cystectomy: an 11-year Christchurch experience.

BACKGROUND: Radical cystectomy (RC) remains the standard approach to treating muscle invasive bladder cancer. Despite improvements in surgical and anaesthetic care, morbidity and mortality remain high. In the United Kingdom, centralisation has improved outcomes following RC. However, in New Zealand no centralisation or mandatory reporting of outcomes exists. METHODS: A retrospective review of all patients who underwent RC at Christchurch Hospital, New Zealand, between January 2007 and January 2018 was undertaken. Data on demographic, opera-tive and post-operative variables were collected. Thirty- and 90-day mortality rates were assessed along with five-year survival. Multivariate logistic regression was used to assess factors associated with survival. RESULTS: During the 11-year period, 135 patients underwent RC. There were low rates of neo-adjuvant (11%) and adjuvant (5%) chemotherapy use. The median length of stay was 10 days (6-44 days) and 23 patients (17%) had a Clavien-Dindo grade 3 or above complication. Thirty- and 90-day mortality was 2.2% and 4.4% respectively. Five-year overall and disease-specific survival rates were 49.7% and 59.3% respectively. American Joint Committee on Cancer (AJCC) stage was a positive predictor of overall survival, with the risk of death increasing incrementally for each progression of stage. Age, sex and comorbidity status were not significant predictors of either overall or disease-specific survival. CONCLUSION: Our study is the first to report radical cystectomy outcomes in New Zealand. Alt-hough the perioperative outcomes were comparable to other published series, the subsequent development of metastatic disease remains a problem, with poor five-year survival rates.

Knowledge translation strategies to support service providers' implementation of the "F-words in Childhood Disability".

PURPOSE: Service providers are adopting the "F-words" in practice as a strengths-based approach to childhood disability. This study aimed to gain insight into service providers' uses of the "F-words", associated barriers, and knowledge translation strategies needed to support implementation. METHODS: Service providers were invited to participate in an interview after completing an online survey on their clinical implementation of the "F-words". Content analysis provided insight into use of the "F-words" and perceived barriers; and to identify knowledge translation strategies to facilitate implementation. RESULTS: Twenty-one service providers from nine countries participated in interviews. Applications of the "F-words" included its use as a conceptual framework, directly in practice, and in teaching/training. Barriers included conflicting attitudes, insufficient funding, language, and misalignment with organizational/government priorities. To support the adoption of the "F-words", participants recommended knowledge translation strategies including local opinion leaders, linkage and exchange, educational outreach and meetings, and distribution of educational materials. CONCLUSIONS: Understanding uses, barriers to use, and knowledge translation strategies will inform future directions to move the "F-words" into practice. A critical step in bridging the research-to-practice gap and encouraging more widespread adoption requires collaboration with service providers to tailor knowledge translation strategies to fit the local context.Implications for RehabilitationService providers around the world are interested in the ICF-based "F-words" and are adopting them in clinical practice to support a holistic, strengths-based approach to childhood disability.While there is considerable uptake of the "F-words", service providers have experienced barriers including conflicting attitudes of families and colleagues, insufficient funding, lack of translations, and misalignment with organizational and government priorities.To further support implementation and overcome perceived barriers, service providers recommended using four knowledge translation strategies: (i) local opinion leaders; (ii) linkage and exchange; (iii) educational outreach/meetings; and (iv) the distribution of educational materials.Service providers and researchers must partner together to tailor knowledge translation strategies to the local context in order to address the needs and priorities of service providers' specific settings and bridge the gap between research evidence and practice.

Use of the International Classification of Functioning, Disability and Health to support goal-setting practices in pediatric rehabilitation: a rapid review of the literature.

INTRODUCTION: The International Classification of Functioning, Disability and Health (referred to as the ICF) is the World Health Organization's framework for health. It can be used to identify goals that capture all aspects of a person's life and to inform clinical goal-setting processes. This review aims to report how healthcare providers are using the ICF framework to support goal-setting practices in pediatric rehabilitation services. METHODS: A rapid review was conducted using scoping review principles in the following databases: CINAHL, Medline and PsycINFO. Key terms included: "ICF", "goal-setting" and "pediatrics". RESULTS: Sixteen studies met the inclusion criteria. Three main themes emerged about the use of the ICF in pediatric rehabilitation: 1) match the content of goals to the ICF domains; 2) implement with existing tools for goal-setting; and 3) inform the development of new tools for goal-setting. Healthcare providers often use a combination of goal-setting tools. The SMART approach is used to frame goals, while the Canadian Occupational Performance Measure and Goal Attainment Scale have been used to document and evaluate goals. CONCLUSION: The ICF framework can be used with current goal-setting practices and offers a common lens and language with which to facilitate collaborative goal-setting with families and healthcare providers.Implications for RehabilitationThe International Classification of Functioning, Disability and Health (ICF) provides a common framework and language to support collaborative goal-setting between families and healthcare providersDespite the opportunity for the ICF to be used as a framework with goal-setting approaches, to date the ICF has mainly been used to match the content of goals to ICF domains for documentation purposesThe ICF should be incorporated into the established clinical routines in order to promote its use among healthcare providersThe ICF can be used with existing goal-setting tools in clinical practice and to inform the ongoing development of new tools to support the goal-setting process in family-centred services.

Can patient symptoms reliably predict major oesophageal motility disorders assessed by conventional water perfusion manometry?

AIM: This study aimed to determine whether symptoms can reliably predict a major disorder of oesophageal motility as assessed by conventional water perfusion manometry. METHODS: Data from patients who underwent conventional water perfusion oesophageal manometry and a pre-manometry questionnaire between October 1998 and August 2018 were extracted from a database. Clinical features (dysphagia, chest pain, regurgitation, dysphagia to a bread challenge) and combinations of these clinical features were compared to manometric diagnoses. RESULTS: Data from 546 patients were analysed. Thirty-three (6%) patients had a major disorder of motility, and 513 (94%) had normal manometry or a minor disorder of motility. 'Any dysphagia' (dysphagia as a symptom or dysphagia to a bread challenge) or 'chest pain' was experienced by all patients with a major disorder of motility and 435 of 513 patients with normal manometry or a minor disorder of motility (p=0.009). Sensitivity was 100%, and specificity was 15%, in identifying patients with a major disorder of motility using symptom combinations and a bread challenge. CONCLUSION: Symptoms and provoked dysphagia to bread were able to predict patients with a major disorder of oesophageal motility with a sensitivity of 100%. However, as specificity was 15%, confirmation with manometry is indicated if possible.

Building a culture of engagement at a research centre for childhood disability.

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.