A pre-visit video/question prompt list intervention to increase youth question-asking about attention deficit hyperactivity disorder during pediatric visits.

OBJECTIVE: To conduct a pragmatic randomized controlled trial to test the effectiveness of an ADHD question prompt list with video intervention to increase youth question-asking and provider education about ADHD during visits. METHODS: English-speaking youth ages 11-17 with ADHD and their caregivers were enrolled from two pediatric clinics. Youth were randomized to intervention or usual care groups. Intervention group adolescents watched the video and then completed an ADHD question prompt list before their visits. Multivariable regression was used to analyze the data. RESULTS: Twenty-one providers and 102 of their patients participated. Intervention group youth were significantly more likely to ask one or more questions about ADHD and its treatment than usual care youth (odds ratio=5.4, 95 % Confidence Interval (CI)= 1.8, 15.9). Providers were significantly more likely to educate youth who asked one or more questions during visits about more ADHD medication areas (unstandardized beta=0.98, 95 % CI=0.31 to 1.64) and more non-medication strategies for ADHD (unstandardized beta=0.50, 95 % CI=0.13 to 0.88). CONCLUSION: The intervention increased youth question-asking about ADHD and its treatment. Providers provided more education to youth who asked one or more questions about ADHD and its treatment. PRACTICE IMPLICATIONS: Providers and practices should consider having youth complete ADHD question prompt lists and watch the video before visits to increase youth question-asking during visits.

Disseminating a health information website to teens using a three-pronged approach with social media outreach.

Objective: To disseminate iuveo.org, a new health information website, primarily to teens in the United States using a three-pronged approach of social media, in-person, and emails. Methods: Dissemination methods included a combination of in-person, email, and social media campaigns starting in August 2022 to reach teens and stakeholders focused on teen health. Following the Social Marketing Theory framework, a social media campaign was implemented utilizing Instagram and X (formerly Twitter). Website analytics, including monthly usage of iuveo, was measured utilizing Google Analytics. The intrinsic analytics from X and Instagram were also tracked. Results: From August 2022-July 2023, iuveo attracted 1338 unique users to the website. In the same time frame, 1085 accounts were reached on Instagram, and 14,367 impressions were received on X. Most website users (84.8%) were classified as 'direct' acquisition, meaning that they directly typed in the URL or clicked on a link, and 7.3% of users visited iuveo from a social media platform. Conclusion: A three-pronged dissemination strategy is beneficial when disseminating a new health information website. Innovation: Utilizing a three-pronged approach with a social media campaign based on Social Marketing Theory, a health information website was disseminated to youth in the United States.

The long-term impact of COVID-19 on nursing: An e-panel discussion from the International Network for Child and Family Centred Care.

AIM: To explore the International Network for Child and Family Centred Care (INCFCC) members' experiences and views on the long-term impact of COVID-19 on the nursing workforce. BACKGROUND: On the 11 March 2020, the World Health Organization declared COVID-19 a global pandemic. While some countries adopted a herd immunity approach, others imposed stricter measures to reduce the transmission of the virus. Hospitals in some countries faced an avalanche of extremely sick admissions, whereas others experienced an early surge in cases or were able to control the spread. DESIGN: Discursive paper. METHODS: A web-based survey was e-mailed to 63 INCFCC members from 28 March to 30 April 2022, as an invitation to share their experience concerning the long-term impact of COVID-19 on their role as a nurse educator, clinician or researcher. RESULTS: Sixteen members responded, and the responses were grouped under the themes stress and anxiety, safe staffing and pay, doing things differently, impact on research, impact on teaching and learning, impact on clinical practice, nursing made visible and lessons for the future. CONCLUSION: The INCFCC members provided their views and highlighted the impact on their role in nursing education, administration, research and/or practice. This discussion of international perspectives on the similarities and differences imposed by COVID-19 found that the impact was wide-ranging and prolonged. The overarching theme revealed the resilience of the participating members in the face of COVID-19. RELEVANCE TO CLINICAL PRACTICE: This study highlights the importance of all areas of nursing, be it in academia or in clinical practice, to work together to learn from the present and to plan for the future. Future work should focus on supporting organizational and personal resiliency and effective interventions to support the nursing workforce both during a disaster and in the recovery phase. Nursing workforce resilience in the face of COVID-19.

Adolescents, parents, and providers' experiences of triadic encounters in paediatric diabetes clinics: A qualitative study.

INTRODUCTION: Adolescents with Type 1 diabetes are a cohort whose self-management of their diabetes care often declines during adolescence which can lead to adverse health outcomes. Research indicates that providers find it challenging to engage adolescents in communication exchanges during triadic encounters in diabetes clinics. Our study aimed to explore adolescents, parents, and providers' experiences of clinic encounters. METHODS: A qualitative study was conducted with a convenience sample of 13 adolescents with Type 1 diabetes (aged 11-17), 14 parents, and seven providers. Participants were recruited from two outpatient diabetes clinics in two urban children's hospitals, Ireland. Data were obtained using a combination of interviews and focus groups. Data were analysed thematically. RESULTS: Adolescents and their parents appeared to hold both positive and negative experiences of diabetes clinic encounters. Providers reported challenges associated with engaging adolescents in communication exchanges. The structure, focus and style of clinic encounters created barriers that potentially led to suboptimal adolescent participation and impaired provider-adolescent communication during clinic visits. CONCLUSIONS: The findings provide insights into the challenges associated with adolescents' engagement in communication encounters in diabetes clinics. Healthcare providers could encourage adolescents to be more actively involved in their diabetes management, by taking an adolescent-centred approach and creating a nonjudgemental milieu. Focusing on adolescent's agenda could lead to more meaningful and relevant discussions between providers and adolescents and ensure more tailored education in the time available. Adolescence is a risky period for nonadherence and adverse health complications; therefore, it is critical that providers make every contact count in diabetes clinic encounters. PATIENT OR PUBLIC INVOLVEMENT: The study's design and delivery were guided by two advisory groups, comprising (1) five adolescents living with Type 1 diabetes (T1D) and (2) five parents of an adolescent with T1D.

Co-designing a website with and for youth, so they can better manage their health.

Objective: To co-design a website aimed to empower youth to ask questions to encourage productive, meaningful conversations with their health care providers. Methods: The research team recruited adolescent stakeholders (ages 11-17) through flyers distributed at local Young Men's Christian Association (YMCA) locations, clinics, and school nurses. Eleven adolescents who had at least one chronic medical condition were selected as members of the two youth advisory boards. Youth participated in five co-design meetings to give input on website content and refinement over a two-and-a-half-year period. The youth reviewed the website in various stages of development. Results: Youth wanted a website with simple, straightforward language that would be understood by someone between the ages of 11-17 years with a reputable URL. The website content includes ADHD, asthma, vaping/smoking, diabetes, seizures, anxiety, panic disorder, depression, addiction, stimulants, bullying, eating disorders, and sexually transmitted infections. Youth wanted general background content, helpful resources, question prompt lists, and videos encouraging youth involvement in care. Conclusions: A credible co-designed website with information on different health topics that contains question prompt lists and videos for utilization during health care visits has the potential to increase adolescent involvement in their care. Innovation: This website is an innovative intervention aimed at informing and encouraging youth to be more actively involved in their care across a range of healthcare conditions.

Participation in everyday life for young people with chronic pain in Saudi Arabia: "you feel lacking in life and you feel that time is flying by".

Introduction: Chronic pain is a common health problem that can have a significant impact on children and young people's daily life. Although research on pediatric chronic pain has been a priority globally, little is known about young people's experience of chronic pain in Saudi Arabia. Thus, this article reports on young people's experience of chronic pain and the impact on their lives in Saudi Arabia which forms part of a larger study. Methods: Multiple case study design following Yin's (2018) approach was used. Purposeful and theoretical sampling were used to recruit young people aged 12 to 18 who had experienced chronic pain for at least three months, their parents, and their school personnel. The young people and their parents were recruited from a tertiary hospital located on the western side of Saudi Arabia while school personnel were recruited from the schools that young people attended. Data were collected through in-depth semi-structured face-to-face (n = 15) and telephone interviews (n = 25) from 40 participants (10 young people, 10 parents, and 20 school personnel). Interviews were recorded, transcribed verbatim, and translated from Arabic to English. Data were analyzed following two phases: (1) constant comparative analysis; and (2) cross-case analysis based on the work of Charmaz (2014) and Yin (2018) respectively. Findings: Young people's experiences of chronic pain were categorized into three themes: (1) experiencing chronic pain; (2) impact of pain on quality of life; and (3) everyday strategies to manage chronic pain. All young people reported that their pain was caused by a chronic condition, where the most prevalent pains were musculoskeletal/joint pain, abdominal pain, and headache/migraine. Most young people had encountered challenges with misdiagnosis or delayed diagnosis as to the cause of their chronic pain. They described how their chronic pain interfered with their physical, psychological, and social functioning. They primarily managed their pain with medications and through self-care techniques. The findings also indicated that young people's generally positive attitude to their pain reflected their beliefs in Allah's power and the belief that such suffering should be borne according to their Islamic culture. Conclusion: Chronic pain is a significant health phenomenon that tends to restrict the participation of young people in everyday life. However young people used a range of strategies to normalize the pain so that they could continue with their everyday activities like their peers.

Neoadjuvant treatment for stage III and IV cutaneous melanoma.

BACKGROUND: Cutaneous melanoma is amongst the most aggressive of all skin cancers. Neoadjuvant treatment is a form of induction therapy, given to shrink a cancerous tumour prior to the main treatment (usually surgery). The purpose is to improve survival and surgical outcomes. This review systematically appraises the literature investigating the use of neoadjuvant treatment for stage III and IV cutaneous melanoma. OBJECTIVES: To assess the effects of neoadjuvant treatment in adults with stage III or stage IV melanoma according to the seventh edition American Joint Committee on Cancer (AJCC) staging system. SEARCH METHODS: We searched the following databases up to 10 August 2021 inclusive: Cochrane Skin Specialised Register, CENTRAL, MEDLINE, Embase, LILACS and four trials registers, together with reference checking and contact with study authors to identify additional studies. We also handsearched proceedings from specific conferences from 2016 to 2020 inclusive. SELECTION CRITERIA: Randomised controlled trials (RCTs) of people with stage III and IV melanoma, comparing neoadjuvant treatment strategies (using targeted treatments, immunotherapies, radiotherapy, topical treatments or chemotherapy) with any of these agents or current standard of care (SOC), were eligible for inclusion. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methods. Primary outcomes were overall survival (OS) and adverse effects (AEs). Secondary outcomes included time to recurrence (TTR), quality of life (QOL), and overall response rate (ORR). We used GRADE to evaluate the certainty of the evidence. MAIN RESULTS: We included eight RCTs involving 402 participants. Studies enrolled adults, mostly with stage III melanoma, investigated immunotherapies, chemotherapy, or targeted treatments, and compared these with surgical excision with or without adjuvant treatment. Duration of follow-up and therapeutic regimens varied, which, combined with heterogeneity in the population and definitions of the endpoints, precluded meta-analysis of all identified studies. We performed a meta-analysis including three studies. We are very uncertain if neoadjuvant treatment increases OS when compared to no neoadjuvant treatment (hazard ratio (HR) 0.43, 95% confidence interval (CI) 0.15 to 1.21; 2 studies, 171 participants; very low-certainty evidence). Neoadjuvant treatment may increase the rate of AEs, but the evidence is very uncertain (26% versus 16%, risk ratio (RR) 1.58, 95% CI 0.97 to 2.55; 2 studies, 162 participants; very low-certainty evidence). We are very uncertain if neoadjuvant treatment increases TTR (HR 0.51, 95% CI 0.22 to 1.17; 2 studies, 171 participants; very low-certainty evidence). Studies did not report ORR as a comparative outcome or measure QOL data. We are very uncertain whether neoadjuvant targeted treatment with dabrafenib and trametinib increases OS (HR 0.28, 95% CI 0.03 to 2.25; 1 study, 21 participants; very low-certainty evidence) or TTR (HR 0.02, 95% CI 0.00 to 0.22; 1 study, 21 participants; very low-certainty evidence) when compared to surgery. The study did not report comparative rates of AEs and overall response, and did not measure QOL. We are very uncertain if neoadjuvant immunotherapy with talimogene laherparepvec increases OS when compared to no neoadjuvant treatment (HR 0.49, 95% CI 0.15 to 1.64; 1 study, 150 participants, very low-certainty evidence). It may have a higher rate of AEs, but the evidence is very uncertain (16.5% versus 5.8%, RR 2.84, 95% CI 0.96 to 8.37; 1 study, 142 participants; very low-certainty evidence). We are very uncertain if it increases TTR (HR 0.75, 95% CI 0.31 to 1.79; 1 study, 150 participants; very low-certainty evidence). The study did not report comparative ORRs or measure QOL. OS was not reported for neoadjuvant immunotherapy (combined ipilimumab and nivolumab) when compared to the combination of ipilimumab and nivolumab as adjuvant treatment. There may be little or no difference in the rate of AEs between these treatments (9%, RR 1.0, 95% CI 0.75 to 1.34; 1 study, 20 participants; low-certainty evidence). The study did not report comparative ORRs or measure TTR and QOL. Neoadjuvant immunotherapy (combined ipilimumab and nivolumab) likely results in little to no difference in OS when compared to neoadjuvant nivolumab monotherapy (P = 0.18; 1 study, 23 participants; moderate-certainty evidence). It may increase the rate of AEs, but the certainty of this evidence is very low (72.8% versus 8.3%, RR 8.73, 95% CI 1.29 to 59; 1 study, 23 participants); this trial was halted early due to observation of disease progression preventing surgical resection in the monotherapy arm and the high rate of treatment-related AEs in the combination arm. Neoadjuvant combination treatment may lead to higher ORR, but the evidence is very uncertain (72.8% versus 25%, RR 2.91, 95% CI 1.02 to 8.27; 1 study, 23 participants; very low-certainty evidence). It likely results in little to no difference in TTR (P = 0.19; 1 study, 23 participants; low-certainty evidence). The study did not measure QOL. OS was not reported for neoadjuvant immunotherapy (combined ipilimumab and nivolumab) when compared to neoadjuvant sequential immunotherapy (ipilimumab then nivolumab). Only Grade 3 to 4 immune-related AEs were reported; fewer were reported with combination treatment, and the sequential treatment arm closed early due to a high incidence of severe AEs. The neoadjuvant combination likely results in a higher ORR compared to sequential neoadjuvant treatment (60.1% versus 42.3%, RR 1.42, 95% CI 0.87 to 2.32; 1 study, 86 participants; low-certainty evidence). The study did not measure TTR and QOL. No data were reported on OS, AEs, TTR, or QOL for the comparison of neoadjuvant interferon (HDI) plus chemotherapy versus neoadjuvant chemotherapy. Neoadjuvant HDI plus chemotherapy may have little to no effect on ORR, but the evidence is very uncertain (33% versus 22%, RR 1.75, 95% CI 0.62 to 4.95; 1 study, 36 participants; very low-certainty evidence). AUTHORS' CONCLUSIONS: We are uncertain if neoadjuvant treatment increases OS or TTR compared with no neoadjuvant treatment, and it may be associated with a slightly higher rate of AEs. There is insufficient evidence to support the use of neoadjuvant treatment in clinical practice. Priorities for research include the development of a core outcome set for neoadjuvant trials that are adequately powered, with validation of pathological and radiological responses as intermediate endpoints, to investigate the relative benefits of neoadjuvant treatment compared with adjuvant treatment with immunotherapies or targeted therapies.

Using a mixed methods grounded theory methodology to explain neonatal nurses' professional quality of life.

BACKGROUND: Nurse researchers are constantly seeking novel methods of maintaining philosophical congruence while advancing their knowledge of the human condition using paradigmatically diverse means. AIM: To provide an overview of the research philosophies underpinning the mixed methods grounded theory (MM-GT) methodology, illustrate its optimal use and introduce a quality-appraisal tool being developed with reference to extant literature. DISCUSSION: The utility of MM-GT has been effectively demonstrated in the nursing and health literature. Yet, there are examples of how it has been under-used and sub-optimally applied. This article includes a two-phase MM-GT study protocol guided by a pragmatic research philosophy and best practice recommendations that aims to explain neonatal nurses' professional quality of life. CONCLUSION: Optimal use of MM-GT's five essential components - purposive sampling, constant comparative methods with iterative coding and analysis, theoretical saturation, memoing and theory development - combine to produce high-quality, defensible research outputs and new nursing theory. IMPLICATIONS FOR PRACTICE: Research outputs, such as publication and presentation, expounding the multifactorial influences affecting neonatal nurses' professional quality of life will not only benefit the neonatal nursing community but also contribute to the corpus of nursing and midwifery research and enhance the health, well-being and retention of nurses and midwives more broadly.

Bayesian analysis for nurse and midwifery research: statistical, practical and ethical benefits.

BACKGROUND: The statistical shortcomings of null hypothesis significance testing (NHST) are well documented, yet it continues to be the default paradigm in quantitative healthcare research. This is due partly to unfamiliarity with Bayesian statistics. AIM: To highlight some of the theoretical and practical benefits of using Bayesian analysis. DISCUSSION: A growing body of literature demonstrates that Bayesian analysis offers statistical and practical benefits that are unavailable to researchers who rely solely on NHST. Bayesian analysis uses prior information in the inference process. It tests a hypothesis and yields the probability of that hypothesis, conditional on the observed data; in contrast, NHST checks observed data - and more extreme unobserved data - against a hypothesis and yields the long-term probability of the data based on repeated hypothetical experiments. Bayesian analysis provides quantification of the evidence for the null and alternative hypothesis, whereas NHST does not provide evidence for the null hypothesis. Bayesian analysis allows for multiplicity of testing without corrections, whereas NHST multiplicity requires corrections. Finally, it allows sequential data collection with variable stopping, whereas NHST sequential designs require specialised statistical approaches. CONCLUSION: The Bayesian approach provides statistical, practical and ethical advantages over NHST. IMPLICATIONS FOR PRACTICE: The quantification of uncertainty provided by Bayesian analysis - particularly Bayesian parameter estimation - should better inform evidence-based clinical decision-making. Bayesian analysis provides researchers with the freedom to analyse data in real time with optimal stopping when the data is persuasive and continuing when data is weak, thereby ensuring better use of the researcher's time and resources.

Health Care Transition: The Struggle to Define Itself.

Health care transition is an expanding field of health care practice and research focused on facilitating adolescents and emerging adults with long-term conditions to transfer uninterruptedly from pediatric to adult health care services and to transition successfully into adulthood and beyond. There is a widespread need to develop and implement service models as approximately one million adolescents and emerging adults with long-term conditions transfer their care into the adult system and enter adulthood. The purpose of this article is to explore major issues associated with the current state of health care transition practice, research and ultimately policymaking and systems change. The prominent issues addressed in this article include the following. Defining clearly what constitutes models of health care transition practice as ambiguity exists with terminology used with concepts integral to health care transition. The indistinct meanings of health care transition terminology commonly used, such as transition, transfer, readiness, and preparation, need to be operationalized for widespread application. Furthermore, questions remain as to what goal-directed outcomes are expected within this field of practice and science.

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

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

Conducting a randomised controlled trial of a psychosocial intervention for adolescents with type 1 diabetes during COVID-19: recommendations to overcome the challenges complicated by inconsistent public health guidelines on research.

Since the beginning of the COVID-19 pandemic, there has been very little guidance in Ireland and abroad, around the conduct of research, and randomised controlled trials (RCTs) in particular. This has led to inconsistent interpretations of public health guidelines for the conduct of research in hospitals. Consequently, challenges have arisen for researchers conducting RCTs, in relation to recruitment and retention. These challenges are amplified for RCTs of psychosocial interventions, where communication and physical contact play a major role in administering the RCT. Therefore, learning from other research studies is important. This study addresses the challenges in administering an RCT of a psychosocial intervention in two paediatric outpatient diabetes clinics in Dublin Ireland, including recommendations to overcome these. Recommendations include the following: (1) recognise research as an essential service; (2) hospital management should implement guidelines to ensure a consistent approach to the conduct of research during pandemics; (3) ensure that there is a mechanism for the provision of clear and effective communication before the clinic visit with patients, to reassure them and gain their trust; and (4) trial managers should make time to check in with their team every day, as they would do if they were in the office.

How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study.

BACKGROUND: Children report that they do not participate in their healthcare as much as they want, despite having the lawful right to form their own views and the right to express those views freely in all matters affecting them. Children and parents appeared to be more satisfied when healthcare professionals (HCP) use a participatory style in healthcare encounters. AIM: To explore how children, adolescents and young adults with Juvenile Idiopathic Arthritis (JIA) and parents of children with JIA view their participation and communication in healthcare encounters with healthcare professionals. METHODS: Using a qualitative study design, participatory workshops were held separately for children and young adults with JIA and parents of children with JIA. The workshop data were analysed with Graneheim and Lundman's Qualitative Content Analysis resulting in one main theme and two subthemes. RESULTS: The theme "Feeling alienated or familiar with healthcare encounters" illuminates how children felt alienated at healthcare encounters if they found the encounters emotionally distressing. Children could withhold information regarding their health and function from both HCPs and their family and friends. The subtheme "Distancing oneself from healthcare" describe why children felt reluctant to engage in the healthcare encounters and experienced difficulty expressing how they really felt. The subtheme "Being a normal event in life" describe how children felt more comfortable over time engaging with HCPs when they knew what would happen, and felt that HCPs gave them the necessary support they needed to participate. CONCLUSIONS: Children's participation in healthcare encounters varied depending if children felt alienated or familiar to the healthcare situations. Children distance themselves and are reluctant to engage in healthcare encounters if they find them emotionally distressing and feel disregarded. Over time, children can become more familiar and at ease with healthcare situations when they feel safe and experience personal and positive encounters. When the children are prepared for the encounter, provided with the space and support they want and receive tailored help they are more enabled to participate.

How are children's best interests expressed during their hospital visit?-An observational study.

AIMS AND OBJECTIVES: To describe ways in which children's best interests were observed to be expressed in paediatric settings during their hospital visit. BACKGROUND: The best interests of the child are embodied in national and international legal systems, although the definition remains problematic. The child's limited autonomy mandates duty bearers to have both a child perspective and the child's perspective when considering what the best interest of the child entails in care situations. DESIGN: A qualitative descriptive study with overt, non-participant observations fulfilling the COREQ criteria. METHODS: Thirty-two observations of interactions between children aged 2 to 17 years with both acute and chronic conditions, their parents and healthcare professionals were conducted at three paediatric hospitals in Sweden. Inductive and abductive reasoning were used in the content analysis of data, which followed the identification, coding, categorising and abstraction of observed patterns of the best interest of the child. RESULTS: Findings reveal facilitating and obstructing factors for the child's best interests to be safeguarded in healthcare situations. Children were guided in or hindered from exercising their competence. The observations showed a variation in actions taken by both parents and healthcare professionals to safeguard the best interests of the child. CONCLUSIONS: Determining the best interest of the child requires a case-by-case basis, as it is context-dependent, situational, flexible and dependent on all actors involved and actual decisions made. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals' actions can facilitate or obstruct observed expressions of the child's best interest. It is essential to enhance healthcare professionals' communication skills, knowledge awareness and continuing education about the rights of children receiving healthcare services. Reflections and discussions on how to protect the best interests of children may help healthcare professionals to uphold children's best interest in daily clinical practice.

Position Statement of the International Network for Child and Family Centered Care: Child and Family Centred Care during the COVID19 Pandemic.

It is the position of the International Network for Child and Family Centered Care (INCFCC) that COVID19 restrictions pose tremendous challenges for the health care team in their efforts to provide child and family centered care (CFCC). COVID-19 restrictions impact on the family's right to be presernt with their ill child and to contribute to the caring process. A limited number of articles have discussed challenges about the successful delivery of CFCC during the COVID-19 pandemic. Based on current literature, the INCFCC stresses the need for continuous facilitation implementation of child and family centred care as, it is essential for children's physical and psychological wellbeing. Furthermore we believe that the families' presence and participation holds more benefits than risks to the health of children, their families, and the health care team.

A systematic review of the educational experiences and needs of children with cancer returning to school.

AIMS: To critically review and synthesize empirical studies on childhood cancer survivors' experiences and needs on returning to school after treatment. DESIGN: A mixed-method systematic review. DATA SOURCES: A search of CINAHL, PsycINFO, EMBASE, MEDLINE, ERIC and Web of Science was conducted for studies published in English, Spanish and Portuguese languages between January 2010 and May 2020. REVIEW METHODS: Twenty-one studies were eligible for inclusion (13 qualitative studies, 6 quantitative and 2 mixed-method studies). The quality of the studies was assessed using the Critical Appraisal Skills Programme and the Mixed Methods Appraisal Tool. Findings were synthesized using data-based convergent synthesis design. RESULTS: Findings were synthesized under four themes: academic continuity and school re-entry; physical and psychological well-being; school life and participation and stakeholders' responses to childhood cancer. Findings indicated that prolonged/recurring absences, physical and mental changes, personal/health factors impacted children's social participation, peer relationships and school re-integration. Factors which contributed to a more positive experience included maintaining contact with peers and teachers throughout treatment, peer relationships, understanding and support from school community. Sharing information about cancer was an ongoing challenging issue for children, that needed to be handled sensitively. CONCLUSION: It is evident that re-entry to school was very challenging for most children due to treatment side effects, prolonged absences, disrupted peer relationships, lack of preparation and lack of communication between schools, families and healthcare professionals. IMPACT: Despite the growing number of childhood cancer survivors worldwide, there is a deficit of studies about children's re-entry experiences and educational needs. This review illustrates the considerable challenges that children face on school re-entry and the critical importance of better care, support and collaboration from healthcare professionals, parents and school personnel. Nurses could help by raising awareness and leading on preparation for school re-entry.

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

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

A delicate balance between control and flexibility: Experiences of care and support among pre-teenage children with type 1 diabetes and their families.

For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre-teens (9-12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre-teens with type 1 diabetes and their families. Data were obtained from four interactive workshops with pre-teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Data analysis resulted in three themes: 1, diabetes takes up 'a lot of space', 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.

Adolescent Preferences Regarding a Web Site to Empower Adolescents to Talk With Their Healthcare Providers.

PURPOSE: Adolescents experience challenges managing their chronic conditions, partly owing to limited involvement in medical visits. Because adolescents are "digital natives," providing a specific Web site with educational resources may support better adolescent-provider communication. Our purpose was to determine adolescents' opinions about a health communication-focused Web site. METHODS: Sixty English-speaking adolescents aged 11-17 years with a chronic health condition (mean age: 13.3 years; SD 1.9) were enrolled at a pediatric clinic in rural North Carolina. RESULTS: Adolescents most commonly accessed YouTube and Google for online health information. Nearly all adolescents supported the creation of a Web site and resources on how to communicate with their healthcare provider. Adolescents most often wanted to talk to specialists about their health and to pharmacists about their medications. CONCLUSIONS: A Web site and educational resources are currently being codeveloped with adolescents. It is essential that we find ways to engage adolescents in their healthcare management.

Complementing the P-value from null-hypothesis significance testing with a Bayes factor from null-hypothesis Bayesian testing.

BACKGROUND: Classical frequentist statistics, including null-hypothesis significance testing (NHST), dominates nursing and medical research analysis. However, there is increasing recognition that null-hypothesis Bayesian testing (NHBT) merits inclusion in healthcare research analysis. AIM: To recommend that researchers complement the P-value from NHST with a Bayes factor from NHBT in their research analysis. DISCUSSION: Reporting the P-value and a Bayes factor clarifies results that may be difficult to interpret using the P-value alone. CONCLUSION: NHBT offers statistical and practical advantages that complement NHST.