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Abstract Background Our previous work synthesized published studies on well-being interventions during COVID-19. As we move into a post-COVID-19 pandemic period there is a need to comprehensively review published strategies, approaches, and interventions to improve child and youth well-being beyond deleterious impacts experienced during COVID-19. Methods Seven databases were searched from inception to January 2023. Studies were included if they: (1) presented original data on an approach (i.e., approach applied) or (2) provided recommendations to inform development of a future approach (i.e., approach suggested), (3) targeted to mitigate negative impacts of COVID-19 on child and youth (≤18 year) well-being, and (4) published on or after December 2019. Results 39 studies (n = 4/39, 10.3% randomized controlled trials) from 2021 to 2023 were included. Twenty-two studies applied an approach (n = 22/39, 56.4%) whereas seventeen studies (n = 17/39, 43.6%) suggested an approach; youth aged 13–18 year (n = 27/39, 69.2%) were most frequently studied. Approach applied records most frequently adopted an experimental design (n = 11/22, 50.0%), whereas approach suggested records most frequently adopted a cross-sectional design (n = 13/22, 59.1%). The most frequently reported outcomes related to good health and optimum nutrition (n = 28/39, 71.8%), followed by connectedness (n = 22/39, 56.4%), learning, competence, education, skills, and employability (n = 18/39, 46.1%), and agency and resilience (n = 16/39, 41.0%). Conclusions The rapid onset and unpredictability of COVID-19 precluded meaningful engagement of children and youth in strategy development despite widespread recognition that early engagement can enhance usefulness and acceptability of interventions. Published or recommended strategies were most frequently targeted to improve connectedness, belonging, and socialization among children and youth.

Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to “AYA Can—Canadian Cancer Advocacy”), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a “patient ambassador program,” and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada.

Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

Abstract. Quantitative sensory testing (QST) refers to a group of noninvasive psychophysical tests that examine responses to a range of calibrated mechanical and thermal stimuli. Quantitative sensory testing has been used extensively in adult pain research and has more recently been applied to pediatric pain research. The aims of this scoping review were to map the current state of the field, to identify gaps in the literature, and to inform directions for future research. Comprehensive searches were run in 5 databases. Titles, abstracts, and full texts were screened by 2 reviewers. Data related to the study aims were extracted and analyzed descriptively. A total of 16,894 unique studies were identified, of which 505 were screened for eligibility. After a full-text review, 301 studies were retained for analysis. Date of publication ranged from 1966 to 2023. However, the majority of studies (61%) were published within the last decade. Studies included participants across the developmental trajectory (ie, early childhood to adolescence) and most often included a combination of school-age children and adolescents (49%). Approximately 23% of studies were conducted in healthy samples. Most studies (71%) used only one QST modality. Only 14% of studies reported using a standardized QST protocol. Quantitative sensory testing in pediatric populations is an emerging and rapidly growing area of pain research. Future work is needed using comprehensive, standardized QST protocols to harness the full potential that this procedure can offer to our understanding of pediatric pain.

Abstract. Introduction:. Everyday pains are experienced frequently by young children. Parent responses shape how young children learn about and experience pain. However, research on everyday pains in toddlers and preschoolers is scarce, and no self-report measures of parent responses to their child's pain exist for this age group. Objectives:. The objective of this study was to develop a preliminary self-report measure of parent behavioral responses to everyday pains in the toddler and preschool years (the PREP) and examine its relationship with child age, sex, and parent and child distress. Methods:. Items for the PREP were based on a behavioural checklist used in a past observational study of caregiver responses to toddler's everyday pains. Parents (N = 290; 93% mothers) of healthy children (47.9% boys) between 18 and 60 months (Mage = 34.98 months, SD = 11.88 months) completed an online survey of 46 initial PREP items, demographic characteristics, and their child's typical distress following everyday pains. An exploratory factor analysis was performed on the PREP items that describe observable actions parents may take in response to their young child's everyday pains. Results:. The final solution included 10 items across 3 factors: Distract, Physical Soothe, and Extra Attention and explained 60% of the model variance. All PREP subscales were related to child distress; only Physical Soothe and Extra Attention were related to parent distress. Conclusion:. This study was a preliminary step in the development and testing of a new self-report measure of parental responses to everyday pains during early childhood.

Abstract Background Children and youth experienced marked impacts on day-to-day life in the COVID-19 pandemic that were associated with poorer familial and friend relationships, and greater mental health challenges. Few studies provide self-report data on mental health symptoms from children and youth themselves. We sought to examine the associations between social factors and child and youth self-reported symptoms of worsened mood, anxiety, and irritability during the COVID-19 pandemic. Methods A nationally representative cross-sectional survey was administered online to collect self-report data across 10 Canadian provinces among children (11–14 years) and youth (15–18 years), April–May 2022. Age-appropriate questions were based on The Partnership for Maternal, Newborn & Child Health and the World Health Organization of the United Nations H6 + Technical Working Group on Adolescent Health and Well-Being consensus framework and the Coronavirus Health and Impact Survey. Associations between a priori defined social factors (e.g., relationship quality) and respondent self-reported mental health were evaluated using ordinal logistic regression models adjusted for age, sex, and geographic location. Results We analyzed data from 483 (51.7%) children (11–14 years; 227, 47.0% girls) and 450 (48.3%) youth (15–18 years; 204, 45.3% girls). The parents of most children and youth had resided in Canada for over 20 years (678, 72.7%). Over one-quarter of children and youth self-identified as Black, Indigenous, or a Person of Color (134, 27.7%; 134, 29.8%, respectively). Over one-third of children and youth self-reported symptoms of worsened mood (149, 30.9%; 125, 27.8%, respectively), anxiety (181, 37.5%; 167, 37.1%, respectively), or irritability (160, 33.1%; 160, 35.6%, respectively) during, compared to pre-pandemic. In descending order of odds ratios (OR), for children and youth, worsened familial relationships (during compared to pre-pandemic) was associated with the self-reported symptoms of worsened mood (child: OR 4.22, 95%CI 2.51–6.88; youth: OR 6.65 95%CI 3.98–11.23), anxiety (child: OR 4.24, 95%CI2.69–6.75; youth: OR 5.28, 95%CI 3.17–8.86), and irritability (child: OR 2.83, 95%CI 1.76–4.56; youth: OR 6.46, 95%CI 3.88–10.90). Conclusions Self-reported data from a nationally representative sample of children and youth suggest strong associations between social factors and mental health during the COVID-19 pandemic. Interventions targeting child and youth familial relationships may positively impact child and youth mental health.

Abstract The COVID-19 pandemic negatively impacted the mental health of children, youth, and their families which must be addressed and prevented in future public health crises. Our objective was to measure how self-reported mental health symptoms of children/youth and their parents evolved during COVID-19 and to identify associated factors for children/youth and their parents including sources accessed for information on mental health. We conducted a nationally representative, multi-informant cross-sectional survey administered online to collect data from April to May 2022 across 10 Canadian provinces among dyads of children (11–14 years) or youth (15–18 years) and a parent (> 18 years). Self-report questions on mental health were based on The Partnership for Maternal, Newborn & Child Health and the World Health Organization of the United Nations H6+ Technical Working Group on Adolescent Health and Well-Being consensus framework and the Coronavirus Health and Impact Survey. McNemar’s test and the test of homogeneity of stratum effects were used to assess differences between children-parent and youth-parent dyads, and interaction by stratification factors, respectively. Among 933 dyads (N = 1866), 349 (37.4%) parents were aged 35–44 years and 485 (52.0%) parents were women; 227 (47.0%) children and 204 (45.3%) youth were girls; 174 (18.6%) dyads had resided in Canada

Background Patient engagement (PE) in research refers to partnering with people with lived experience (e.g., patients, caregivers, family) as collaborators in the research process. Although PE is increasingly being recognized as an important aspect of health research, the current state of PE among pain research trainees in Canada is unclear.Aims The aims of this study were to describe perspectives about and experiences with PE among trainees conducting pain research in Canada, to identify perceived barriers and facilitators, and to describe recommendations to improve its implementation.Methods A cross-sectional web-based survey (English and French) was administered to trainees at any level conducting pain research at any Canadian academic institution.Results A total of 128 responses were received; 115 responses were complete and included in the final analysis. The majority of respondents identified as women (90/115; 78.3%), in graduate school (83/115; 72.2%), and conducting clinical pain research (83/115; 72.2%). Most respondents (103/115; 89.6%) indicated that PE is “very” or “extremely” important. Despite this, only a minority of respondents (23/111; 20.7%) indicated that they “often” or “always” implement PE within their own research. The most common barrier identified was lack of knowledge regarding the practical implementation of PE, and understanding its positive value was the most commonly reported facilitator. Recommendations for improving the implementation of PE were diverse.Conclusions Despite viewing PE as important in research, a minority of pain research trainees regularly implement PE. Results highlight perceived barriers and facilitators to PE and provide insight to inform the development of future training and other enabling initiatives.

Introduction On 11 March 2020, WHO declared the novel coronavirus (COVID-19) disease a global pandemic. Governments globally implemented physical distancing measures and closure of public institutions that resulted in varying implications to youth mental well-being (eg, social isolation, reduced extracurricular activities). These impacts may have detrimental short-term and long-term effects on youth mental well-being; care for youth with mental health disorders was already overstretched, underfunded and fragmented before the pandemic and youth are not often considered in mental health initiatives. There is a pressing need to partner with youth and families to target and improve youth mental well-being prior to the onset of a mental health disorder, as well as to conduct research on youth mental well-being needs related to pandemic recovery. Here we present a protocol for partnering with youth and families to codesign a user-centred digital tool for youth mental well-being.Methods and analysis We will conduct a national research study to develop a catalogue of recommendations specific to supporting youth mental well-being, and a digital tool to support youth mental well-being through three phases of work: (1) expert consultation on data related to supporting youth mental well-being existing within our Pandemic Preparedness Research Program; (2) codesign of an innovative digital tool for youth mental well-being; and (3) assessment of the tool’s usability and acceptability.Ethics and dissemination This study has been approved by the Dalhousie Research Ethics Board (2023-6538) and the Conjoint Health Research Ethics Board (23-0039). This study will complement ongoing foundational research in youth conducted by our team that involves partnering with youth and families to understand the unique implications of the pandemic on this population.

Introduction Children and youth are often more vulnerable than adults to emotional impacts of trauma. Wide-ranging negative effects (eg, social isolation, lack of physical activity) of the COVID-19 pandemic on children and youth are well established. This scoping review will identify, describe and categorise strategies taken to mitigate potentially deleterious impacts of the COVID-19 pandemic on children, youth and their families.Methods and analysis We will conduct a scoping review following the Arksey-O’Malley five-stage scoping review method and the Scoping Review Methods Manual by the Joanna Briggs Institute. Well-being will be operationalised according to pre-established domains (health and nutrition, connectedness, safety and support, learning and competence, and agency and resilience). Articles in all languages for this review will be identified in CINAHL, Cochrane CENTRAL Register of Controlled Trials, EMBASE, ERIC, Education Research Complete, MEDLINE and APA PsycINFO. The search strategy will be restricted to articles published on or after 1 December 2019. We will include primary empirical and non-empirical methodologies, excluding protocols, reports, opinions and editorials, to identify new data for a broad range of strategies to mitigate potentially deleterious impacts of the COVID-19 pandemic on child and youth well-being. Two reviewers will calibrate screening criteria and the data abstraction form and will independently screen records and abstract data. Data synthesis will be performed according to the convergent integrated approach described by the Joanna Briggs Institute.Ethics and dissemination Ethical approval is not applicable as this review will be conducted on published data. Findings of this study will be disseminated at national and international conferences and will inform our pan-Canadian multidisciplinary team of researchers, public, health professionals and knowledge users to codesign and pilot test a digital psychoeducational health tool—an interactive, web-based tool to help Canadian youth and their families address poor mental well-being resulting from and persisting beyond the COVID-19 pandemic.

Abstract Background Vaccination is a common painful procedure for children. Parents’ concern regarding vaccination pain is a significant driver of vaccine hesitancy. Despite the wealth of evidence-based practices available for managing vaccination pain, parents lack knowledge of, and access to, these strategies. Knowledge translation (KT) tools can communicate evidence-based information to parents, however little is known about what factors influence parents’ use of these tools. A two-page, electronic KT tool on psychological, physical, and pharmacological vaccination pain management strategies for children, was shared with parents as part of a larger mixed methods study, using explanatory sequential design, exploring factors related to uptake of this KT tool. The aim of this qualitative study was to understand what influenced parents’ perceptions of the relevance of the KT tool, as well as their decision as to whether to use the tool. Methods A qualitative descriptive design was used. A total of 20 parents of children aged 0–17 years (n = 19 mothers) reviewed the KT tool ahead of their child’s upcoming vaccination and participated in a semi-structured interview at follow-up. Interviews were recorded, transcribed verbatim, and analyzed with reflexive thematic analysis using an inductive approach. Results The analysis generated three interrelated themes which described factors related to parents’ use of the KT tool: (1) Relevance to parents’ needs and circumstances surrounding their child’s vaccination; (2) Alignment with parents’ personal values around, and experiences with, vaccination pain management (e.g., the importance of managing pain); and (3) Support from the clinical environment for implementing evidence-based strategies (e.g., physical clinical environment and quality of interactions with the health care provider). Conclusions Several factors were identified as central to parents’ use of the KT tool, including the information itself and the clinical environment. When the tool was perceived as relevant, aligned with parents’ values, and was supported by health care providers, parents were more inclined to use the KT tool to manage their children’s vaccination pain. Future research could explore other factors related to promoting engagement and uptake when creating parent-directed KT tools for a range of health-related contexts.

Much of what we know about the meaning and experience of pain has been facilitated through qualitative research. However, qualitative inquiry continues to be underrepresented in the pain literature relative to quantitative approaches. In this Commentary and Introduction to the Special Issue on Qualitative Research and Pain, we present a collection of high-quality, cutting-edge qualitative studies in pain that highlight theoretical and methodological advancements in the field. The articles included in this Special Issue feature a range of designs (e.g., grounded theory, phenomenology, qualitative description), methods of data collection (e.g., interviews, object elicitation, photovoice), and populations (e.g., immigrant women, individuals with heart disease). Throughout this Commentary we also address three common controversies regarding the quality of qualitative research and the stance we took on them for the Issue. These primarily deal with the procedure-related issues of sample size, generalizability, and saturation. We discuss how a more substantive-centered approach to evaluation—that is, an approach that considers the methodological and theoretical significance of the work—is crucial for advancing qualitative research in pain.

Introduction Chronic pain, defined as persistent or recurring pain or pain lasting longer than 3 months, is a common childhood problem and can profoundly impact children’s physical, psychological and social functioning. The last comprehensive systematic review estimating the prevalence of chronic pain in children and adolescents was published in 2011. Since then, the literature on paediatric chronic pain has grown substantially. This manuscript outlines a protocol for an updated systematic review to provide updated estimates of the prevalence of various forms of chronic pain in children and adolescence. The review will also examine the relationship between sociodemographic and psychosocial factors related to chronic pain prevalence.Methods and analysis This review will follow Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We will search EMBASE, PubMed, CINAHL and PsycINFO for observational studies published in English between 2009 and 2020 reporting population-based estimates of chronic non-disease-related pain prevalence in children or adolescents (age ≤19 years). Two independent reviewers will screen the titles and abstracts retrieved from the search based on predefined eligibility criteria. The full texts of relevant studies will then be assessed by two reviewers. Studies meeting inclusion criteria will be categorised according to the type of pain investigated: headache only, abdominal pain only, back pain only, musculoskeletal pain, combined pain, general pain and other pain. Data will be extracted using customised forms and studies will be assessed for risk of bias using a 10-item tool developed by Hoy et al (2012). A narrative synthesis will summarise the prevalence estimates of paediatric chronic pain and associated sociodemographic and psychosocial correlates. Meta-analyses and meta-regressions will be performed if the data permit.Ethics and dissemination Ethical approval is not required. Findings will be disseminated through publication in an academic journal, presentations at conferences and in various media.PROSPERO registration number CRD42020198690.

Abstract. Introduction:. Although several evidence-based strategies for managing children's vaccination pain exist, many parents report being unaware of them. Knowledge translation (KT) tools present evidence-based information in plain language. Objectives:. This two-phase study assessed parents/caregivers' uptake of evidence-based pain management strategies via a KT tool and considered factors related to parents' planned, actual, and future use of these strategies. Methods:. In phase 1, parents were exposed to an online KT tool on physical, psychological, and pharmacological vaccination pain management strategies, and their impressions were assessed by questionnaires including the Information Assessment Method for Parents. In phase 2, after vaccination, parents completed a follow-up survey on their uptake and experiences using the information. Results:. A total of 312 participants reported their plans for KT tool use. Parents who found the KT tool relevant were more likely to plan to use it at their child's upcoming vaccination. A total of 128 parents (93% mothers) completed both surveys. Nearly all parents who planned to use the information did so during their child's subsequent vaccination (90%). When the KT tool was relevant to their needs, parents were more likely to use the information during their child's vaccination. Parents who felt confident using the tool were significantly more likely to report plans for future tool use. Discussion:. This study demonstrates the effectiveness of a KT tool that was relevant to parents' needs and built confidence to increase parent-reported uptake of evidence-based strategies. Proper pain management could positively impact parents' uptake of vaccinations for children.

Abstract. Introduction: Numerous eHealth tools for pain assessment and management have been developed and evaluated with promising results regarding psychometric properties, efficacy, and effectiveness. Although considerable resources are spent on developing and evaluating these tools with the aim of increasing access to care, current evidence suggests they are not made available to end users, reducing their impact and creating potential research waste. Methods: This study consisted of 2 components: (1) a systematic review of eHealth tools for pediatric pain assessment and/or management published in the past 10 years, and (2) an online survey, completed by the authors of identified tools, of tool availability, perceived barriers or facilitators to availability, grant funding used, and a validated measure of user-centeredness of the design process (UCD-11). Results: Ninety articles (0.86% of citations screened) describing 53 tools met inclusion criteria. Twenty-six survey responses were completed (49.06%), 13 of which (50.00%) described available tools. Commonly endorsed facilitators of tool availability included researchers' beliefs in tool benefits to the target population and research community; barriers included lack of infrastructure and time. The average cost of each unavailable tool was $314,425.31 USD ($3,144,253.06 USD total, n = 10). Authors of available tools were more likely to have followed user-centered design principles and reported higher total funding. Conclusion: Systemic changes to academic and funding structures could better support eHealth tool availability and may reduce potential for research waste. User-centered design and implementation science methods could improve the availability of eHealth tools and should be further explored in future studies.

BackgroundHealth researchers are increasingly using social media in a professional capacity, and the applications of social media for health researchers are vast. However, there is currently no published evidence synthesis of the ways in which health researchers use social media professionally, and uncertainty remains as to how best to harness its potential.ObjectiveThis scoping review aimed to explore how social media is used by health researchers professionally, as reported in the literature.MethodsThe scoping review methodology guided by Arksey and O'Malley and Levac et al was used. Comprehensive searches based on the concepts of health research and social media were conducted in MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC, and Web of Science databases, with no limitations applied. Articles were screened at the title and abstract level and at full text by two reviewers. One reviewer extracted data that were analyzed descriptively to map the available evidence.ResultsA total of 8359 articles were screened at the title and abstract level, of which 719 were also assessed at full text for eligibility. The 414 articles identified for inclusion were published in 278 different journals. Studies originated from 31 different countries, with the most prevalent being the United States (52.7% [218/414]). The health discipline of the first authors varied, with medicine (33.3% [138/414]) being the most common. A third of the articles covered health generally, with 61 health-specific topics. Papers used a range of social media platforms (mean 1.33 [SD 0.7]). A quarter of the articles screened reported on social media use for participant recruitment (25.1% [104/414]), followed by practical ways to use social media (15.5% [64/414]), and use of social media for content analysis research (13.3% [55/414]). Articles were categorized as celebratory (ie, opportunities for engagement, 72.2% [299/414]), contingent (ie, opportunities and possible limitations, 22.7% [94/414]) and concerned (ie, potentially harmful, 5.1% [21/414]).ConclusionsHealth researchers are increasingly publishing on their use of social media for a range of professional purposes. Although most of the sentiment around the use of social media in health research was celebratory, the uses of social media varied widely. Future research is needed to support health researchers to optimize their social media use.

Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada. [ABSTRACT FROM AUTHOR]

Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to "AYA Can—Canadian Cancer Advocacy"), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a "patient ambassador program," and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada. [ABSTRACT FROM AUTHOR]

J Neurol Neurosurg Psychiatry 2004;75:49-55 Background: Previous research on patients with left tactile extinction has shown that crossing of hands, so that each hand is on the opposite side of [...]