Search

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 p p = 0.006, respectively) or inattention (p p = 0.028, respectively) compared to parents. Dyads who reported financial or housing instability or identified as living with a disability more frequently reported worsened mental health. Children (96, 57.1%), youth (113, 62.5%), and their parents (253, 62.5%; 239, 62.6%, respectively) most frequently accessed the internet for mental health information. This cross-national survey contextualizes pandemic-related changes to self-reported mental health symptoms of children, youth, and families.

Theoretical models suggest that anxiety, pain intensity, and pain catastrophizing are implicated in a cycle that leads to heightened fear of cancer recurrence (FCR). However, these relationships have not been empirically examined. The objective of this study was to examine the relationships between anxiety symptoms, pain intensity, pain catastrophizing, and FCR in childhood cancer survivors and their parents and to examine whether pain catastrophizing predicts increased FCR beyond anxiety symptoms and pain intensity.The participants were 54 survivors of various childhood cancers (Mage=13.1 y, range=8.4 to 17.9 y, 50% female) and their parents (94% mothers). Children reported on their pain intensity in the past 7 days. Children and parents separately completed measures of anxiety symptoms, pain catastrophizing, and FCR.Higher anxiety symptoms were associated with increased pain intensity, pain catastrophizing, and FCR in childhood cancer survivors. Higher anxiety symptoms and pain catastrophizing, but not child pain intensity, were associated with FCR in parents. Hierarchical linear regression models revealed that pain catastrophizing explained unique variance in both parent (ΔR2=0.11, P0.01) and child (ΔR2=0.07, P0.05) FCR over and above the effects of their own anxiety symptoms and child pain.The results of this study provides novel data on the association between pain and FCR and suggests that a catastrophic style of thinking about pain is more closely related to heightened FCR than one's anxiety symptoms or the sensory pain experience in both childhood cancer survivors and their parents. Pain catastrophizing may be a novel intervention target for survivors and parents struggling with fears of recurrence.

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.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.A cross-sectional web-based survey (English and French) was administered to trainees at any level conducting pain research at any Canadian academic institution.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.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.

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.

Context Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received. Objectives The objective of this study was to explore the concerns of parents who have a child in home-based PPC. Methods Semistructured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, Mage = 10.5 years, SD = 3.95, range = 4–18 years) had a range of diagnoses. Data were analyzed using inductive content analysis. Results Parents' concerns clustered into four main themes: 1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; 2) uncertainty regarding their child's diagnosis, prognosis, and treatments; 3) their child's death (e.g., the process of dying and when it will occur); and 4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible. Conclusion Parents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC and point to critical areas for intervention for seriously ill children and the broader family.

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature.

Aims Fear of cancer recurrence (FCR) is among the most prevalent and distressing concerns reported by cancer survivors. While younger age is the most consistent predictor of elevated FCR, research to date has focused almost exclusively on adult cancer survivors. This is despite the fact that children with cancer are more likely to survive compared to adults, and will become regular, lifelong users of the medical system to mitigate the effects of toxic treatment. The early experience of cancer yields unique challenges and circumstances that may impact children's capacity for and experience of FCR across the developmental trajectory. The aim of this paper is to present a developmental perspective of FCR from infancy to young adulthood. Methods Drawing on the developmental science literature and recent theoretical advancements in FCR, we outline cognitive and social factors that may influence children's capacity for and experience of FCR across the developmental trajectory. Results First, distinct developmental groups that fall under the classification of "childhood cancer survivor," and that all require attention, are summarized. Using the structure of these groupings, we centrally provide a developmental perspective of FCR that offers a useful starting point for research in pediatric populations. Key research gaps, including the need for validated assessment tools to measure FCR in child and adolescent survivors, are highlighted. Conclusions Consideration of the unique context of childhood is needed to guide the identification of childhood cancer survivors at risk for FCR as well as the development of effective FCR interventions for this population.

The current International Association for the Study of Pain (IASP) definition of pain as "An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage" was recommended by the Subcommittee on Taxonomy and adopted by the IASP Council in 1979. This definition has become accepted widely by health care professionals and researchers in the pain field and adopted by several professional, governmental, and nongovernmental organizations, including the World Health Organization. In recent years, some in the field have reasoned that advances in our understanding of pain warrant a reevaluation of the definition and have proposed modifications. Therefore, in 2018, the IASP formed a 14-member, multinational Presidential Task Force comprising individuals with broad expertise in clinical and basic science related to pain, to evaluate the current definition and accompanying note and recommend whether they should be retained or changed. This review provides a synopsis of the critical concepts, the analysis of comments from the IASP membership and public, and the committee's final recommendations for revisions to the definition and notes, which were discussed over a 2-year period. The task force ultimately recommended that the definition of pain be revised to "An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage," and that the accompanying notes be updated to a bulleted list that included the etymology. The revised definition and notes were unanimously accepted by the IASP Council early this year.

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.

Fear of cancer recurrence (FCR) is a common and distressing psychosocial concern for adult cancer survivors. Data on this construct in child survivors is limited and there are no validated measures for this population. This study aimed to adapt the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) for survivors of childhood cancer aged 8-18 years (Fear of Cancer Recurrence Inventory-Child version [FCRI-C]) and their parents (Fear of Cancer Recurrence Inventory-Parent version [FCRI-P]) to self-report on their own FCR and to examine the initial psychometric properties.The FCRI-SF was adapted through expert panel input and cognitive interviews with child survivors18 years. The factor structure, internal consistency and construct and criterion validity of the FCRI-C and FCRI-P were examined in 124 survivors of childhood cancer (43% female; MAll FCRI-SF items were retained for the FCRI-C with simplified language. The internal consistencies of the FCRI-C (α = 0.88) and FCRI-P (α = 0.83) were good. Exploratory factor analyses yielded one-factor structures for both measures. Higher scores on the FCRI-C and FCRI-P were associated with greater intolerance of uncertainty and pain catastrophizing. Higher child FCR was also related to more hypervigilance to bodily symptoms. Parents with higher FCR reported contacting their child's doctors and nurses and scheduling medical appointments for their child more frequently. Children reported significantly lower FCR compared to parents.The FCRI-C and FCRI-P demonstrated strong reliability and preliminary validity. This study offers preliminary data to support the use of the FCRI-C and FCRI-P to measure FCR in survivors of childhood cancer aged 8-18 years and their parents.

Pediatric pain research will only benefit children if the results of this research are used in practice. Knowledge translation (KT) involves the sharing of research evidence to different knowledge users in a manner that is accessible and understandable. This chapter provides an overview of KT and its applications to pediatric pain, with a focus on the effectiveness of KT directed to individual knowledge users (e.g., patients and caregivers, and clinicians) versus organizations or systems. KT goals, strategies, and initiatives are described. The importance of evaluating KT is highlighted. Examples of effective KT strategies, activities, and initiatives directed towards individual patients and caregivers are presented. The importance of effective KT to ensure that children with pain benefit from pediatric pain research evidence is emphasized.

Objective Today, more than 80% of children diagnosed with cancer are expected to survive. Despite the high prevalence of pain associated with the diagnosis and treatment of childhood cancer, there is a limited understanding of how having cancer shapes children's experience and meaning of pain after treatment has ended. This study addresses this gap by exploring childhood cancer survivors' (CCS') experiences of pain from their perspective and the perspective of their parents. Methods Twenty semi-structured interviews were completed with CCS (50% female; mean age = 13.20 y, range = 8-17 y) and their parents (90% mothers). Data were analyzed using interpretive phenomenological analysis. Results Analyses revealed three superordinate themes present in the data: (a) pain is a changed experience after childhood cancer; (b) new or ambiguous pains may be interpreted by CCS and parents as a threat of disease recurrence, late effects, or a secondary cancer; and (c) pain interpretation occurs within the broader context of how CCS and parents appraise their cancer experience. Parents generally appraised their child's cancer and pain as more threatening and were influential in guiding their child's interpretations. Conclusions The cancer experience played an important role in shaping CCS' and their parents' experience and interpretation of pain in survivorship. This study provides novel data to inform the development and refinement of new and existing conceptual models of pain and symptom perception after cancer. The results also point to key areas for future investigation and clinical intervention to address the issue of pain in cancer survivorship.

IntroductionChildren 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 analysisWe 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 disseminationEthical 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.

We have designed, built, and tested novel low-power (less than 10 nW) resonant acceleration switches. The switches respond to vibration at specifically designed frequencies between 30 and 1000 Hz by resonating with sufficient displacement to close an electrical contact and consume power only while vibration is occurring. A rotational design avoids switch closings from DC acceleration, and the quality factor, adjustable between 102 and 105 by tuning the vacuum level, sets the resonant detection threshold. The design includes electrostatic combs for self-test and frequency tuning (up to several Hz), compliant contacts to reduce squegging and contact damage, and ruthenium-coated contacts for improved reliability. Fabrication is accomplished with deep reactive ion etching at up to 50:1 aspect ratios, HF vapor release, and XeF2 frequency trimming (up to 30% of the as-fabricated frequency). Testing with vibration recordings played back through a shaker table demonstrates that the switches correctly identify a target without any false alarms. [2018-0061]

Cancer and its treatment can have lasting consequences on somatosensation, including pain, which is often underrecognized and undertreated. Research characterizing the impact of cancer on pain and sensory processing in survivors of childhood cancer is scarce. This study aimed to quantify generalized differences in pain and sensory processing in survivors of childhood cancer compared with reference data using a standardized thermal and mechanical quantitative sensory testing (QST) protocol. The association between demographic, clinical (eg, leukemia vs other cancers and treatment exposures), and psychosocial (eg, anxiety and pain catastrophizing) variables and sensitivity to pain and sensory stimuli were also evaluated. Participants were 56 survivors of various types of childhood cancer (52% male, Mage = 13.5 years, SD = 3.2, range = 8-17 years). On average, children were 7 years (SD = 4.1, range = 1.2-16.5) post treatment. Almost all participants (86%) had at least 1 abnormal QST parameter compared with age- and sex-matched reference data; however, few participants self-reported the presence of sensory abnormalities. Generally, participants exhibited reduced sensitivity across the QST parameters examined (Ps < 0.05, ds = 0.40-3.45). A significant minority (45%) also exhibited pain sensitization (P

New parents experience significant disruption to their sexual relationships such as lower desire and sexual frequency relative to prepregnancy. Little is known about the sexual distress new parents feel related to these changes, how sexual distress evolves over time, or how coping with stress relates to this distress. New parent couples who engage in more adaptive, joint coping with mutual stressors-common dyadic coping (CDC)-may be better able to manage distress related to their sexuality and thus, experience less sexual distress at 3-months postpartum and experience more marked improvement over time. In 99 first-time parent couples, we examined the link between CDC measured at 3-months postpartum and trajectories of sexual distress across 3-, 6-, and 12-months postpartum. Analyses used dyadic latent growth curve modeling informed by the actor-partner interdependence model. Mothers' sexual distress at 3-months postpartum was clinically elevated and higher than their partner's. Mothers' sexual distress declined significantly over time, whereas partners' sexual distress remained low and stable. An individual's higher perceptions of CDC was significantly associated with their own (but not their partner's) lower sexual distress at 3-months postpartum. No significant associations were found between CDC and change in sexual distress over time. How new parents jointly cope with stressors early in the postpartum period may lessen the distress they have about their sexuality at a time when most couples have just resumed sexual activity. Results identify CDC as a possible novel target for interventions aimed at helping couples manage sexual distress during the transition to parenthood.Los padres recientes sufren una alteración significativa de sus relaciones sexuales, como menos deseo y frecuencia sexual, en comparación con el periodo anterior al embarazo. Se sabe muy poco acerca del distrés sexual que sienten los padres recientes en relación con estos cambios, cómo evoluciona el distrés sexual con el tiempo o cómo el afrontamiento del estrés se relaciona con este distrés. Las parejas de padres recientes que participan en un afrontamiento conjunto más adaptativo de los factores desencadenantes de estrés mutuos -afrontamiento diádico común - pueden ser más capaces de manejar el distrés relacionado con su sexualidad y, por lo tanto, sufrir menos distrés sexual tres meses después del parto, así como tener mejoras más marcadas con el tiempo. En 99 parejas de padres primerizos, analizamos la conexión entre el afrontamiento diádico común medido tres meses después del parto y las trayectorias de distrés sexual a lo largo de los 3, los 6 y los 12 meses después del parto. En los análisis se utilizó el modelo de curva de crecimiento latente diádico orientado por el modelo de interdependencia actor-pareja. El distrés sexual de las madres tres meses después del parto fue clínicamente elevado y mayor que el de sus parejas. El distrés sexual de las madres disminuyó considerablemente con el tiempo, mientras que el distrés sexual de sus parejas se mantuvo bajo y estable. Las percepciones más elevadas de una persona con respecto al afrontamiento diádico común estuvieron asociadas considerablemente con su propio distrés sexual más bajo (pero no con el de sus parejas) tres meses después del parto. No se hallaron asociaciones significativas entre el afrontamiento diádico común y el cambio en el distrés sexual con el tiempo. La manera en la que los padres recientes afrontan conjuntamente los factores desencadenantes de estrés a principios del periodo de posparto puede disminuir el distrés que tienen por su sexualidad en un momento cuando la mayoría de las parejas acaban de reanudar su actividad sexual. Los resultados reconocen el afrontamiento diádico común como posible objetivo nuevo para las intervenciones orientadas a ayudar a las parejas a manejar el distrés sexual durante la transición a la paternidad.初为父母的人会经历性关系的严重破坏,比如与怀孕前相比性欲下降和性生活频率降低。对于刚做父母的人感受到的因这些变化引起的性生活方面的不如意,这种性生活的痛苦如何随着时间的推移而演变, 或者如何应对与这种痛苦相关的压力,这些我们都知之甚少。初为父母的夫妇如果能够较好适应, 一起应对相互的压力--共同的二元应对(CDC)--可能会更好地管理与他们的性行为相关的压力, 因此, 在产后3个月经历较少的性压抑, 随着时间的推移经历得到更显著的改善。在99对首次为人父母的夫妇中, 我们研究了产后3个月对共同二元应对 (CDC) 测量后的情况, 与产后3个月、6个月和12个月的性生活不如意的发展呢迹之间的联系。分析使用了由行动者-伙伴相互依赖模型解释的二矢潜在增长曲线模型。产后3个月母亲的性生活不满度在临床表现上高于其伴侣。母亲的性压抑随着时间的推移显著下降, 而伴侣的性压抑保持在较低和稳定的水平。个人对CDC的较高认知与他们自己(而不是他们的伴侣)在产后3个月较低的性压抑显著相关。在CDC和性压抑随时间的变化之间没有发现显著的关联。初为父母的人在产后早期如何共同应对压力可能会减轻他们对性行为的痛苦, 而此阶段大多数夫妇刚刚恢复性生活。本研究结果确定了CDC作为一个可能的新的干预目标, 旨在帮助伴侣管理在过渡到为人父母的时期里的性生活方面的不如意。.

Objective Children with juvenile idiopathic arthritis (JIA) are faced with a complex medical journey requiring consistent adherence to treatments to achieve disease management. Parents are intimately involved in JIA treatments; however, little is known about their experiences in this role. This is relevant as many treatments necessitate procedural pain (e.g., self-injections) or side effects (e.g., nausea), which may impact a parents' ability to follow treatment plans. The objective of this study was to explore the lived experiences of parents who identified challenges with their child's JIA treatments. Methods Parents of children with JIA who identified challenges with their child's treatments were invited to take part in semi-structured interviews. Data were analyzed using interpretative phenomenological analysis. Results Ten mothers of children with JIA (60% female, Mage =11.83 years, range=4-16 years) participated. Four superordinate themes were present in mothers' experiences: (1) treatments altered mothers' roles within the family, increasing their caregiver burden and advocacy; (2) treatments positively and negatively impacted their relationships (e.g., increased support from others, decreased time with others); (3) treatments elicited various emotional responses (e.g., frustration, grief) which affected their well-being; and (4) treatments were at times a source of internal conflict, affecting mothers' actions and adherence. Conclusion Mothers' experiences with their child's JIA treatments affects them in various ways that can subsequently impact treatment adherence. Results highlight the value of supporting parents through these complex treatment regimens and incorporating their experiences in treatment decisions to help promote optimal outcomes for children with JIA and their families.

Objective This study aimed to examine barriers and facilitators to the dissemination of efficacious self-directed digital health tools for adults affected by cancer, and quantify funding used to develop and evaluate these digital health tools. Methods We conducted: (1) a systematic literature review to identify efficacious self-directed digital health tools for adults affected by cancer, published between 2009 and 2019 and (2) an author survey to identify barriers and facilitators to dissemination of those tools, grant funding and the user centredness of their design (UCD) process. Results Of 1314 screened articles, 29 articles describing 26 tools met the inclusion criteria. From 26 surveys sent, 12 were completed, 6 of which described disseminated tools. Whilst researchers’ motivation and infrastructure support facilitate tool dissemination, limited funds, lack of infrastructure and limited research timelines are the most common barriers. A median of AUD$250,000 was spent on tools not disseminated to end-users. Conclusion Although incorporating UCD processes in the development of digital health tools is important, it is imperative to integrate implementation processes into the planning stages of tool development to ensure dissemination. Practice Implications Researchers, academic institutions, funding agencies and government and non-government organisations all have roles to play to support long-term implementation.

Objective: Somatic symptoms capture attention, demand interpretation, and promote health behaviors. Symptom appraisal is particularly impactful within uncertain health contexts such as cancer survivorship. Yet, little is known about how individuals make sense of somatic symptoms within uncertain health contexts, nor how this process guides health behaviors. Design: 25 adolescent and young adult survivors of childhood cancer completed semi-structured interviews regarding how they appraise and respond to changing somatic sensations within the uncertain context of survivorship. Main Outcome Measures: Interviews were transcribed verbatim and subjected to a hybrid deductive-inductive thematic analysis, guided by the Cancer Threat Interpretation model. Results: Theme 1 (‘symptoms as signals of bodily threat’) captured that participants commonly interpret everyday sensations as indicating cancer recurrence or new illness. Theme 2 (‘playing detective with bodily signals’) captured the cognitive and behavioral strategies that participants described using to determine whether somatic sensations indicated a health threat. These two themes are qualified by the recognition that post-cancer symptoms are wily and influenced by psychological factors such as anxiety (Theme 3: ‘living with symptom-related uncertainty’). Conclusions: These data highlight the need for novel symptom management approaches that target how somatic sensations are appraised and responded to as signals of bodily threat.

On March 12, 2020, the World Health Organization (WHO) declared the outbreak of a new Coronavirus disease (COVID-19), to be a pandemic. From the beginning, Italy (in particular the Northern regions) was the first large European country to be hit and one of the most affected countries worldwide. This had a significant impact on the workload and psychological health of health workers. The aim of this web-based cross-sectional study is to assess the consequences of the COVID-19 pandemic on Italian doctors' well-being and psychological distress, in respect of demographic and occupational characteristics, lifestyle and habits during the lockdown period.We conducted a web-based cross-sectional survey based on Google® Forms to collect data. The participation was available during the lockdown period that started in Italy on March 9, 2020 and it was voluntary and anonymous. The questionnaire explored demographic and occupational variables, lifestyle and habits during the lockdown, perceived well-being and psychological distress. Multivariate logistic regression models were fitted.Our study reported the very alarming psychological conditions of Italian doctors, especially among those who worked in the most affected regions, where a level of psychological distress of 93.8% and poor well-being of 58.9% were registered. These percentages were even higher in the case of female hospital workers with low job seniority, and those caring for COVID-19 patients.Our findings reported a significant psychosocial impact of the COVID-19 outbreak on Italian doctors, particularly among those working in the most affected regions of the country. Further studies are necessary to better understand the effects of the COVID-19 pandemic on doctors' well-being and mental health over time, in order to implement effective prevention measures.

Work-related stress (WRS) is widespread among medical doctors. WRS not only affects the physician's mental and physical well-being, but also patient care quality and the overall efficiency of the healthcare system. The aim of this study is to conduct a systematic review of the current preventive measures against mental disorders, work-related stress, and burnout among physicians.The presentation of this systematic review is in accordance with the PRISMA statement. The methodological quality of the selected studies was assessed with specific rating tools: INSA, Newcastle Ottawa Scale, JADAD scale, and AMSTAR. English publications only were selected. No restrictions applied for publication type. Reviewers excluded articles not concerning the following topics: WRS prevention, WRS risk factors and mental disorders among physicians. Reviewers also excluded findings of less academic significance, editorial articles, individual contributions, purely descriptive studies published in scientific conferences.Online search returned 4748 references on the following databases: PubMed (1638), Scopus (3108) and Cochrane Library (2). 36 studies were included in this review (thereof, 13 reviews and 23 original articles). Narrative reviews were rated on the INSA scale. The mean, median, and modal rating was 6. This indicates an intermediate-high quality of these studies. Systematic reviews were rated on the AMSTAR scale. The mean and median rating was 9, and the modal rating was 8. This indicates a high quality of these studies. The scores assigned to the original articles have a mean, median, and modal rating of 7. This also indicates an intermediate-high quality of these studies.Work-related stress and mental disorders seem to be widespread among medical practitioners. It is already a priority to adopt preventive measures against these phenomena. However, there is still no consensus on what the most effective measures are. Additional research is needed to formulate evidence-based recommendations.

Acute pain is a common childhood issue, from routine procedures (e.g., vaccinations, venipuncture) to more specialized medical procedures and treatments (e.g., lumbar punctures, surgery). This chapter provides an overview of best practices in acute pain management for pediatric psychology consultations, including evidence-based approaches to effective assessment and management. The chapter outlines developmental considerations to guide decision-making for pain assessment and management. Practical issues pediatric psychologists need to address when working with pediatric patients are discussed, including family, medical, and treatment-related factors. Key considerations for acute pain assessment and management in special populations are discussed, including children with intellectual disabilities, developmental disorders, and needle phobias. Recommendations for post-procedure pain management and support are discussed. The pediatric psychologist plays a critical role in acute pain management and should be armed with the evidence and expertise summarized in this chapter in order to ensure children with pain and their families receive the pain management they deserve.

Background: Children with cancer often undergo long treatment trajectories involving repeated needle procedures that potentially cause pain and distress. As part of a comprehensive effort to develop clinical practice guidelines (CPGs) to address pain prevention and management in children with cancer, we aimed to provide recommendations on the pharmacological and psychological management of procedure-related pain and distress. Methods: Of the international inter-disciplinary CPG development panel (44 individuals), two working groups including 13 healthcare professionals focused on procedural pain and distress. Grading of Recommendations Assessment, Development and Evaluation methodology was used, including the use of systematic literature reviews to inform recommendations and the use of evidence to decision frameworks. At an in-person meeting in February 2018, the guideline panel discussed these frameworks and formulated recommendations which were then discussed with a patient-parent panel consisting of 4 survivors and 5 parents. Results: The systematic reviews led to the inclusion of 48 randomised controlled trials (total number of participants = 2271). Quality of evidence supporting the recommendations ranged from very low to moderate. Strong recommendations were made for the use of topical anesthetics in all needle procedures, for offering deep sedation (DS)/general anesthesia (GA) to all children undergoing lumbar puncture, for the use of DS/GA in major procedures in children of all ages, for the use of hypnosis in all needle procedures and for the use of active distraction in all needle procedures. Conclusion: In this CPG, an evidence-based approach to manage procedure-related pain and distress in children with cancer is presented. As children with cancer often undergo repeated needle procedures during treatment, prevention and alleviation of procedure-related pain and distress is of the utmost importance to increase quality of life in these children and their families. (C) 2020 The Authors. Published by Elsevier Ltd.

Pain is a common and distressing symptom of pediatric cancer, as reported by both children and their parents. Increasingly, children with cancer are cared for as outpatients, yet little is known about how parents manage their cancer-related pain. The aim of the current study was to examine pain prevalence and characteristics, and the pharmacological, physical, and psychological pain management strategies used by parents to manage their child's cancer pain.In total, 230 parents and caregivers (89% mothers) of children (mean age=8.93 y, SD=4.50) with cancer currently in treatment or who are survivors completed an online survey about their child's pain in the preceding month.Results indicated that children with cancer who were on active treatment and who were posttreatment experienced clinically significant levels of pain. Parents reported using more physical and psychological strategies than pharmacological strategies to manage their child's pain. The most frequently used physical/psychological strategy was distraction and acetaminophen was the most frequently administered pain medication. Parents' confidence in managing their child's pain was inversely associated with both how much pain they perceived their child had, and also whether they had given any pain medication.The results of this study suggest that despite parents' use of pain management strategies, management of cancer-related pain continues to be a problem for children during treatment and into survivorship.

Background Everyday pain experiences (minor bumps/scrapes) are common in early childhood and create frequent opportunities for socialization of pain behaviors. Nevertheless, everyday pain during the formative toddler period has been largely overlooked. Aims The aim of the current study was to describe the frequency and nature of toddlers’ everyday pain experiences, child and parent responses, and the relationship between child characteristics (age, sex, temperament) and responses. Methods Fifty-two children aged 12–32 months and their parents were observed at an indoor play facility. Using an observational checklist, trained observers recorded children’s everyday pain incidents and associated child and parent responses. Results Overall, 101 pain incidents were observed, the majority of which evoked low levels of pain and distress, which resolved after 1 min. Pain incidents occurred at a rate of 1.02 incidents/child/hour, with 81% of children experiencing at least one incident, which is higher than previous research with preschoolers and daycare staff. Common parent responses included a range of verbal (reassurance) and nonverbal (staying closer, hugging/kissing child) behaviors. Boys were more likely to not exhibit any protective behaviors. Parents were more likely to pick up older toddlers. Conclusions Future research should examine the link between self-reported and observed parent responses to child pain in everyday and clinical contexts.

Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer. Methods: Nine HCPs (four nurses and five physicians) took part in in-depth semistructured interviews. Participants were eligible if they were a nurse or physician in Atlantic Canada; cared for at least one AYA patient with terminal cancer in the past 3 years; and were able to speak and understand English. Data were analyzed using interpretive phenomenological analysis. Results: Analyses revealed four superordinate themes present in the data: (1) many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; (2) an intense emotional experience compared with caring for patients with terminal cancer of other ages; (3) personal identification with patients and their families; and (4) attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness. Conclusions: HCPs experienced unique emotional and logistical challenges when caring for AYAs with terminal cancer, which can influence the care they provide. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of health care services to this population.

BACKGROUND Health 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. OBJECTIVE This scoping review aimed to explore how social media is used by health researchers professionally, as reported in the literature. METHODS The 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. RESULTS A 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]). CONCLUSIONS Health 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.

Supplemental Digital Content is Available in the Text. The relevance of KT tools, and parents' confidence in using them, was related to uptake of vaccination pain management strategies for children., 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.

Background A strict, lifelong, gluten-free diet (GFD) remains the sole treatment for celiac disease (CD). The assessment of adherence to the GFD in pediatric studies is often based on self-report and visual analogue scales which lack proven validity. We sought to compare parental-report of GFD adherence to expert registered dietitian (RD) assessments, the best available standard. Methods Parents of children with biopsy-proven CD scored their adherence to the GFD on a five-point Likert scale similar to that used in previous pediatric CD studies. Each family was then evaluated by an RD expert in CD management who conducted a comprehensive and standardized assessment and scored the family’s adherence. The agreement between parents and the RD was assessed using paired t test and intraclass correlation coefficient (ICC) based on their scores. Results One hundred twenty-two children and their families participated in the study, with a median of 32 months on a GFD. Excellent adherence (score 5 out of 5) was attributed to 60.5% of the sample by the RD. The parents scored adherence higher than the RD by an average difference of 0.41 scale points (95% CI, 0.28–0.54; P < 0.001). The agreement between parents and the registered dietitian was poor (ICC = 0.21). Conclusion Reliance on self-report through Likert scales for GFD adherence overestimates adherence and misses opportunities for patient and family education. Approximately 40% of children with CD have ongoing gluten exposure, highlighting the need for regular assessment by an RD expert in the GFD to identify education and counselling needs for children with CD.

BACKGROUND Pain Squad is an evidence-based, freely available iOS app designed to assess pain in children with cancer. Once research-based technologies such as Pain Squad are validated, it is important to evaluate their performance in natural settings to optimize their real-world clinical use. OBJECTIVE The objective of this study was to evaluate the implementation effectiveness of Pain Squad in a natural setting. METHODS Parents of 149 children with cancer (aged 8-18 years) were contacted to invite their child to participate. Participating children downloaded Pain Squad on their own iOS devices from the Apple App Store and reported their pain using the app twice daily for 1 week. Participants then emailed their pain reports from the app to the research team and completed an online survey on their experiences. Key implementation outcomes included acceptability, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. RESULTS Of the 149 parents contacted, 16 of their children agreed to participate. More than a third (6/16, 37.5%) of participating children returned their pain reports to the research team. Adherence to the pain assessments was 62.1% (mean 8.7/14 assessments). The 6 children who returned reports rated the app as highly feasible to download and use and rated their overall experience as acceptable. They also reported that they would be willing to sustain their Pain Squad use over several weeks and that they would recommend it to other children with cancer, which suggests that it may have potential for penetration. CONCLUSIONS While Pain Squad was well received by the small number of children who completed the study, user uptake, engagement, and adherence were significant barriers to the implementation of Pain Squad in a natural setting. Implementation studies such as this highlight important challenges and opportunities for promoting the use and uptake of evidence-based technologies by the intended end-users.

Background Health 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. Objective This scoping review aimed to explore how social media is used by health researchers professionally, as reported in the literature. Methods The 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. Results A 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]). Conclusions Health 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.

147 Background: Symptom monitoring plays an important role in both the physical and psychological challenges of surviving cancer. Anecdotally, cancer survival is characterized by uncertainty, symptom-related fear, and the interpretation of normal bodily sensations as symptomatic of cancer recurrence. This fear may lead to over-vigilance of benign bodily sensations, increasing anxiety and decreasing quality of life. Yet, there are few studies investigating how cancer survivors interpret and make sense of post-cancer symptoms. These studies are needed to guide considerations for clinical practice and the development of supportive interventions. Methods: We conducted in-depth semi-structured interviews with 18 AYA cancer survivors about how they interpret, manage, and respond to physical symptoms during survivorship. Participants were 15-25 years old. The sample was diverse in terms of disease history, ethnicity (8 Hispanic), and gender (9 females, 1 nonbinary). We conducted thematic analysis using a deductive coding scheme that was developed using our Cancer Threat Interpretation (CTI) theoretical model of cognitive, affective, and behavioral processes in post-cancer symptom perception. Results: AYA cancer survivors reported experiencing anxiety in the face of common physical sensations. These sensations were often interpreted as potential signs of recurrence or as late effects of treatment. Survivors most commonly reported worries about pain and fatigue, but also other sensations such as breathlessness. We coded participant transcripts into the following themes: biased attending towards symptoms, biased interpretations of symptoms as threatening, fear and worry about symptoms, and behavioral response to symptoms. In addition, we generated a new theme that was not previously captured in the CTI model: trust in the body. Conclusions: Knowing how to appraise and respond to symptoms such as pain is a challenge for AYA cancer survivors. This rich qualitative data provides support for the CTI model and suggests future directions. The results of this study can inform how clinicians talk to their patients about symptom monitoring after treatment ends.

Different aspects of episodic long-term, short-term and implicit long-term memory were investigated in subjects who strictly fulfilled the criteria for the amnestic form of Mild Cognitive Impairment (a-MCI). Results showed normal short-term memory abilities in these subjects, while each of the episodic long-term memory indices explored showed poorer results in a-MCI subjects with respect to normal controls. Although some episodic memory functions were relatively well preserved, others appeared to have deteriorated to a level comparable to that of mild AD patients. The finding of an extensive impairment of all memory functions depending on hippocampal structures in a population with a high risk of developing dementia is strongly supportive of the hypothesis that a pure amnesic syndrome characterizes the preclinical phase of AD. Copyright © Taylor & Francis Ltd.

Objective The aim of this paper was to assess the efficacy of process-based cognitive training (pb-CT) combined with reminiscence therapy (RT) in patients with mild Alzheimer's disease (mAD) and mild cognitive impairment (MCI) and in healthy elderly (HE) subjects. Methods This multicenter, randomized, controlled trial involved 348 participants with mAD, MCI, and HE from four European countries. Participants were randomly assigned to two arms of a crossover design: those in arm A underwent 3 months of computerized pb-CT for memory and executive functions combined with RT and 3 months of rest; those in arm B underwent the reverse. The primary outcome was the effect of the training on memory and executive functions performance. The secondary outcome was the effect of the training on functional abilities in mAD assessed with the instrumental activities of daily living. Results We found a significant effect of the training for memory in all three groups on delayed recall of the Rey Auditory Verbal Learning Test and for executive functions in HE on the phonological fluency test. MCI and HE participants maintained these effects at follow-up. MCI and mAD participants also showed a significant effect of the training on the Mini-mental state examination scale. Participants with mAD showed more stable instrumental activities of daily living during the training versus the rest period. Conclusions Our results corroborate the positive effect of pb-CT and its maintenance primarily on memory in HE and MCI participants that did not seem to be potentiated by RT. Moreover, our results are very promising for the mAD participants. Copyright © 2015 John Wiley & Sons, Ltd.

The significance of paroxysmal nocturnal haemoglobinuria (PNH(pos) ) cells and leucocyte subset telomere lengths in paediatric aplastic anaemia (AA) is unknown. Among 22 children receiving immunosuppressive therapy (IST) for AA, 73% (16/22) were PNH(pos) , of whom 94% achieved at least a partial response (PR) to IST; 11/16 (69%) achieved complete response (CR). Only 2/6 (33%) PNH(neg) patients achieved PR. PNH(pos) patients were less likely to fail IST compared to PNH(neg) patients (odds ratio 0·033; 95% confidence interval 0·002-0·468; P = 0·012). Children with AA had short granulocyte (P = 7·8 × 10(-9) ), natural killer cell (P = 6·0 × 10(-4) ), naive T lymphocyte (P = 0·002) and B lymphocyte (P = 0·005) telomeres compared to age-matched normative data.

A door-to-door prevalence survey of epilepsy was conducted in 3 Sicilian municipalities, as of November 1, 1987. In phase 1, the screening by questionnaire of 24,496 eligible subjects (participation = 92%) identified 544 suspected to have epilepsy. In phase 2, neurological evaluation of the 544 subjects yielded 111 with epilepsy. Of the 111 subjects, 103 (93%) had been previously diagnosed, 68 (61%) were taking antiepileptic medication, and 81 (73%) had active epilepsy. Referring to the 81 subjects with active epilepsy, the seizure type was generalized in 60 (74%), partial in 19 (23%) and undetermined in 2 (3%). The prevalence of active epilepsy (per 1,000 population) was 3.3 overall, 3.5 for men and 3.2 for women. The age-specific patterns for active epilepsy differed by sex, with higher figures for men at younger ages (5-19 years) and older ages (50-99 years). The age-specific prevalence figures for active epilepsy were lower than those from previous Italian surveys. Copyright © 2001 S. Karger AG, Basel.