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1.
Curr Oncol ; 31(5): 2582-2588, 2024 05 02.
Article in English | MEDLINE | ID: mdl-38785474

ABSTRACT

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.


Subject(s)
Neoplasms , Patient Advocacy , Humans , Canada , Neoplasms/therapy , Adolescent , Young Adult , Adult , Peer Group
2.
Curr Oncol ; 31(5): 2874-2880, 2024 05 17.
Article in English | MEDLINE | ID: mdl-38785500

ABSTRACT

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.


Subject(s)
Neoplasms , Humans , Adolescent , Canada , Young Adult , Adult , Research , Female , Biomedical Research , Health Priorities , Male
3.
J Pain ; : 104554, 2024 May 06.
Article in English | MEDLINE | ID: mdl-38719156

ABSTRACT

Pain in adolescence can lead to the development of serious mental health issues, including suicidality. This risk may be strengthened among youth exposed to more adverse childhood experiences (ACEs; abuse, neglect, household challenges). This longitudinal study examined the role of ACEs in the relationship between pain and later suicidality onset and severity among a cohort of adolescents at risk for developing mental health problems. Participants were 139 healthy youth (Mage = 13.74 years, standard deviation = 1.56, 64% female) between the ages of 11 to 17 years, recruited based on parental history of depression or anxiety. Youth completed validated measures of internalizing symptoms, ACEs, and pain characteristics at baseline and follow-up diagnostic interviews 9 and/or 18 months later to assess for onset and severity of suicidality. After controlling for demographics, baseline internalizing symptoms, and ACEs, worse pain interference and increased ACEs at baseline predicted increased suicidality severity at follow-up. Moderation analyses revealed that there was a significant interaction between ACEs and pain interference and pain intensity. Increased pain interference (b = 7.65, P < .0001) or intensity (b = 6.96, P = .0003) was only associated with increased suicidality severity at follow-up in youth with high levels of ACEs. This study demonstrates that ACEs strengthen the relationship between pain and later suicidality severity among youth at risk of developing mental health problems. Findings underscore the critical need to adopt a trauma-informed lens to pediatric pain prevention and treatment (eg, screening for ACEs) and for the pain to be on the child's mental health agenda. PERSPECTIVE: This article provides evidence that, while pain is a risk factor for future increased suicidality severity, it is a particularly strong risk factor in youth who experienced increased childhood adversity. These results may help identify youth at greatest risk for suicidality.

4.
Pain ; 2024 May 15.
Article in English | MEDLINE | ID: mdl-38743558

ABSTRACT

ABSTRACT: Chronic pain, defined as persistent or recurring pain or pain lasting longer than 3 months, is a common childhood problem. The objective of this study was to conduct an updated systematic review and meta-analysis on the prevalence of chronic pain (ie, overall, headache, abdominal pain, back pain, musculoskeletal pain, multisite/general pain, and other) in children and adolescents. EMBASE, PubMed, CINAHL, and PsycINFO were searched for publications between January 1, 2009, and June 30, 2023. Studies reporting population-based estimates of chronic nondisease related pain prevalence in children or adolescents (age ≤ 19 years) were included. Two independent reviewers screened articles based on a priori protocol. One hundred nineteen studies with a total of 1,043,878 children (52.0% female, mean age 13.4 years [SD 2.4]) were included. Seventy different countries were represented, with the highest number of data points of prevalence estimates coming from Finland and Germany (n = 19 each, 4.3%). The overall prevalence of chronic pain in children and adolescents was 20.8%, with the highest prevalence for headache and musculoskeletal pain (25.7%). Overall, and for all types of pain except for back pain and musculoskeletal pain, there were significant differences in the prevalence between boys and girls, with girls having a higher prevalence of pain. There was high heterogeneity (I 2 99.9%). Overall risk of bias was low to moderate. In summary, approximately 1 in 5 children and adolescents experience chronic pain and prevalence varies by pain type; for most types, there is higher pain prevalence among girls than among boys. Findings echo and expand upon the systematic review conducted in 2011.

5.
Pain Rep ; 9(3): e1151, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38586595

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.

6.
Pain Rep ; 9(3): e1154, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38586593

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.

7.
Psychooncology ; 33(3): e6335, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38526517

ABSTRACT

BACKGROUND: Adolescents and young adults (AYAs; ages 15-29 years) diagnosed with cancer are increasingly recognized as an oncology population with distinct psychosocial needs. However, few specialized psychosocial interventions for AYAs currently exist. This study reports on the development of a novel group-based psychotherapy intervention to address the psychosocial needs of AYAs. The objective was to evaluate the acceptability, feasibility, and preliminary effects of the intervention. METHODS: The manualized group psychotherapy program is delivered virtually over an 8-week period by registered psychologists. Four groups (n = 5-11 AYAs per group) with a total of N = 33 participants (Mage = 20.97 years, SD = 3.68, range = 15-29 years, 76% women) were conducted. Recruitment and retention data assessed intervention feasibility. Patient-reported psychosocial outcomes were measured at baseline and immediately following the intervention to assess preliminary effects. Acceptability was assessed following the intervention using a self-report measure of participant satisfaction. RESULTS: Overall, the completion rate of the intervention was 85% (n = 28). All participants "strongly agreed" (88%) or "agreed" (13%) that they were satisfied with the group. Meeting, sharing experiences, and expressing feelings with other AYAs were identified as the most helpful aspects. Participants reported significant improvements in emotional (p < 0.05) and functional (p < 0.01) quality of life from baseline to immediately post-intervention with medium effect sizes (d = 0.58-0.70). CONCLUSIONS: Findings suggest that the intervention is feasible, acceptable, and shows promise for improving psychosocial outcomes for AYAs. Further research will refine the intervention and establish efficacy in a randomized trial.


Subject(s)
Neoplasms , Psychotherapy, Group , Humans , Adolescent , Female , Young Adult , Adult , Male , Feasibility Studies , Quality of Life , Neoplasms/therapy , Medical Oncology
8.
BMC Public Health ; 24(1): 631, 2024 Feb 28.
Article in English | MEDLINE | ID: mdl-38413913

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.


Subject(s)
COVID-19 , Mental Health , Child , Female , Infant, Newborn , Adolescent , Humans , Male , Cross-Sectional Studies , Self Report , Pandemics , Social Factors , COVID-19/epidemiology , Canada/epidemiology
9.
Eur Rev Med Pharmacol Sci ; 28(1): 392-401, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38235891

ABSTRACT

OBJECTIVE: The purpose of this study is to validate the 13-item version of the Work-Related Stress Questionnaire (WRSQ) on a representative sample of Italian public health residents. MATERIALS AND METHODS: The WRSQ was administered as part of the Public Health Residents' Anonymous Survey in Italy (PHRASI) from 14 June to 26 July 2022. Collinearity between each questionnaire item was assessed with Kendall's τ statistic. The latent factors identified associating similar items based on the authors' observations were workplace, job demand, support and unpleasant workplace. Goodness-of-fit was assessed with confirmatory factor analysis calculating: Comparative Fit Index (CFI), Tucker-Lewis Index (TLI), Root Mean Square Error of Approximation (RMSEA), Standardized Root-Mean-Residual (SRMR). Cronbach's alpha (α) and Omega McDonald (ω) were calculated to evaluate the reliability of the questionnaire. R 4.2.2 was used to perform the analyses. RESULTS: 379 Public Health residents (58% women) responded to the questionnaire. No significant collinearity was found between the items (τ range -0.31 to 0.49). Confirmatory Factor Analysis showed CFI = 0.975, TLI = 0.967, RMSEA = 0.041 and SRMR = 0.051. Internal consistency of the WRSQ Total Score was α = 0.80 and ω = 0.85. CONCLUSIONS: Although validated in a sectorial subpopulation of healthcare workers, the WRSQ proved to be an excellent tool for assessing work-related stress. Unpleasant workplace latent factors showed lower factor loading and internal consistency than others. This could be due to the fact that topics investigated with unpleasant workplace items (e.g., abuse and discrimination) are experienced on a less regular basis than the ones assessed through the other items.


Subject(s)
Occupational Stress , Public Health , Humans , Female , Male , Reproducibility of Results , Surveys and Questionnaires , Factor Analysis, Statistical , Italy , Psychometrics
10.
Psychooncology ; 32(12): 1885-1894, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37916988

ABSTRACT

OBJECTIVE: Bodily threat monitoring is a core clinical feature of Fear of cancer recurrence (FCR) and is targeted in psycho-oncology treatments, yet no comprehensive self-report measure exists. The aim of this study was the theory-informed development and initial validation of the Bodily Threat Monitoring Scale (BTMS). METHODS: Adult survivors of breast and gynaecological cancers (Study 1: N = 306, age = 37-81 years) and childhood cancer survivors (Study 2: N = 126, age = 10-25 years) completed the BTMS, designed to assess how individuals monitor for and interpret uncertain symptoms as indicating that something is wrong with their body. Participants completed measures to assess construct and criterion validity of the BTMS, and childhood cancer survivors (Study 2) completed the BTMS again 2 weeks later to assess test-retest reliability. RESULTS: The 19-item BTMS demonstrated excellent internal consistency across adult and childhood cancer samples (α = 0.90-0.96). Factor analyses indicated two subscales capturing 1. Monitoring of bodily sensations and 2. Threatening interpretations of bodily sensations. Two-week stability estimates were acceptable. For construct validity, the BTMS correlated with body vigilance and anxiety sensitivity. The BTMS also demonstrated criterion validity, yielding significant associations with FCR, intolerance of uncertainty, help-seeking behaviours, and quality of life. The BTMS was associated with FCR while controlling for body vigilance and anxiety sensitivity, indicating a unique contribution of this theory-informed measure. CONCLUSIONS: The BTMS shows evidence of sound psychometric properties and could be used to elucidate the role of bodily threat monitoring in the maintenance and management of FCR.


Subject(s)
Cancer Survivors , Child , Adult , Female , Humans , Middle Aged , Aged , Aged, 80 and over , Adolescent , Young Adult , Reproducibility of Results , Quality of Life , Neoplasm Recurrence, Local , Surveys and Questionnaires
11.
BMJ Open ; 13(6): e072533, 2023 06 26.
Article in English | MEDLINE | ID: mdl-37369410

ABSTRACT

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.


Subject(s)
COVID-19 , Mental Disorders , Humans , Adolescent , Mental Health , COVID-19/epidemiology , COVID-19/psychology , Mental Disorders/epidemiology , Canada , Psychological Well-Being
12.
Sci Rep ; 13(1): 7972, 2023 05 17.
Article in English | MEDLINE | ID: mdl-37198202

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 < 10 years. Anxiety and irritability were reported most frequently among child (44, 9.1%; 37, 7.7%) and parent (82, 17.0%; 67, 13.9%) dyads, as well as among youth (44, 9.8%; 35, 7.8%) and parent (68, 15.1%; 49, 10.9%) dyads; children and youth were significantly less likely to report worsened anxiety (p < 0.001, p = 0.006, respectively) or inattention (p < 0.001, 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.


Subject(s)
COVID-19 , Mental Health , Infant, Newborn , Adolescent , Humans , Female , Male , COVID-19/epidemiology , Cross-Sectional Studies , Pandemics , Canada/epidemiology , Parent-Child Relations
13.
Eur Rev Med Pharmacol Sci ; 27(4): 1467-1473, 2023 02.
Article in English | MEDLINE | ID: mdl-36876686

ABSTRACT

OBJECTIVE: Noise is still today one of the main causes of occupational diseases; in fact, in Italy in the three-year period 2019-2022, hearing loss represented 15% of all occupational diseases recognized by the National Institute for Insurance against Accidents at Work. The extra-auditory effects related to noise exposure also require particular attention, because they can interfere with mental activities that require concentration, memory and ability to deal with complex problems, causing sleep and learning disorders. For this reason, acoustic comfort is considered a fundamental requirement for obtaining an optimal degree of well-being in closed environments. In schools, a high degree of noise pollution not only makes it difficult for students to listen and learn, but also affects school workers. The aim of this study was to perform a systematic review of international literature and analysis of the preventive measures of extra-auditory effects among school workers. MATERIALS AND METHODS: 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, JBI scale and AMSTAR). Only publications in English were selected. No restrictions were applied for the publication type. We excluded articles not concerned with the extra-auditory effects of noise exposure in school workers and preventive measures, findings of less academic significance, editorial articles, individual contributions, and purely descriptive studies published in scientific conferences. RESULTS: Online research indicated 4,363 references: PubMed (2,319), Scopus (1,615) and Cochrane Library (429) have been consulted; 30 studies were included in this review (5 narrative or systematic reviews and 25 original articles). Regarding the scores of narrative reviews, the INSA score showed an average and a median value of 6.5, thus indicating an intermediate/high quality of the studies. Regarding the scores of systematic reviews, the AMSTAR score showed an average of 6.7 and a median and a modal value of 6, thus indicating a high quality of the studies. The scores assigned to the original articles have an average and median value of 7 and a modal value of 6 and this demonstrates an intermediate/high quality of the studies. CONCLUSIONS: We can assume that, as it is highlighted by this study, to date these consequences are not considered at the legislative level for the protection of exposed workers. The extra-auditory effects impacting health afterward environmental noise exposure are many and widespread. Therefore, there is a need for interventions to be carried out by institutions and that the physician of the schools, during health surveillance, investigates the effects and clinical manifestations, in order to prevent disorders and deficits highlighted by our study.


Subject(s)
Deafness , Occupational Diseases , Humans , Environmental Exposure , Schools
14.
Can J Pain ; 6(1): 185-194, 2022.
Article in English | MEDLINE | ID: mdl-36278248

ABSTRACT

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.


Contexte: L'engagement des patients dans la recherche fait référence au partenariat avec des personnes ayant une expérience vécue (p. ex. des patients, des soignants ou des membres de la famille) en tant que collaborateurs dans le processus de recherche. Bien que l'engagement des patients soit de plus en plus reconnu comme un aspect important de la recherche en santé, son état actuel chez les stagiaires en recherche sur la douleur au Canada n'est pas clair.Objectif: Les objectifs de cette étude étaient de décrire les points de vue et les expériences sur l'engagement des patients chez les stagiaires menant des études sur la douleur au Canada, de recenser les obstacles et les facilitateurs perçus et de formuler des recommandations pour améliorer sa mise en œuvre.Méthodes: Une enquête transversale sur le Web (en anglais et en français) a été menée auprès des stagiaires de tout niveau menant des études sur la douleur dans n'importe quel établissement universitaire canadien.Résultats: Au total, 128 réponses ont été reçues; 115 réponses étaient complètes et ont été incluses dans l'analyse finale. La majorité des répondants ont indiqué qu'elles étaient des femmes (90/115; 78,3 %), qu'elles étaient inscrites aux cycles supérieures (83/115 ; 72,2 %) et qu'elles effectuaient des études cliniques sur la douleur (83/115 ; 72,2 %). La plupart des répondants (103/115 ; 89,6 %) ont indiqué que l'engagement était « très ¼ ou « extrêmement ¼ important. Malgré cela, seule une minorité de répondants (23/111; 20,7 %) ont indiqué qu'ils mettaient en œuvre l'engagement des patients « souvent ¼ ou « toujours ¼ dans leur propre recherche. L'obstacle le plus fréquemment énoncé était le manque de connaissances concernant la mise en œuvre pratique de l'engagement des patients, et la compréhension de sa valeur positive était le facilitateur le plus souvent signalé. Les recommandations visant à améliorer la mise en œuvre de l'engagement des patients étaient diverses.Conclusions: Bien que l'engagement des patients soit considéré comme important dans la recherche, une minorité de stagiaires en recherche sur la douleur le mettent régulièrement en œuvre. Les résultats mettent en évidence les obstacles et les facilitateurs perçus pour l'engagement des patients et fournissent un aperçu pour éclairer l'élaboration de la formation future et d'autres initiatives habilitantes.

15.
BMJ Open ; 12(7): e062413, 2022 07 25.
Article in English | MEDLINE | ID: mdl-35879014

ABSTRACT

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.


Subject(s)
COVID-19 , Adolescent , COVID-19/epidemiology , Canada , Child , Delivery of Health Care , Humans , Pandemics/prevention & control , Research Design , Review Literature as Topic
16.
Clin J Pain ; 38(7): 484-491, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35686578

ABSTRACT

OBJECTIVES: 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. METHODS: 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. RESULTS: 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, P<0.01) and child (ΔR2=0.07, P<0.05) FCR over and above the effects of their own anxiety symptoms and child pain. DISCUSSION: 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.


Subject(s)
Cancer Survivors , Neoplasms , Child , Fear , Female , Humans , Male , Neoplasms/complications , Pain/etiology , Recurrence , Survivors
17.
Eur Rev Med Pharmacol Sci ; 26(11): 4140-4147, 2022 06.
Article in English | MEDLINE | ID: mdl-35731087

ABSTRACT

OBJECTIVE: The year 2020 was characterized by the outbreak of a new pandemic caused by a novel coronavirus named SARS-CoV-2. To face the pandemic, many countries worldwide imposed general lockdowns, closing all non-essential businesses. As primary care services, pharmacies had to remain open, thus putting pharmacy staff at significant risk of viral infection and overwork. This study aimed to assess the mental health of Italian Pharmacists, considering demographic and occupational characteristics, lifestyle, and habits, during the SARS-CoV-2 outbreak and the subsequent lockdown period (March-May 2020). MATERIALS AND METHODS: A web-based survey was created using Google® Forms to collect data from March 30, 2020, to June 1, 2020. The questionnaire consisted of three sections investigating: (1) demographic and occupational variables, (2) lifestyle and habits variables, (3) psychological distress and perceived well-being. RESULTS: A total of 401 participants completed the questionnaire. Older workers and those with more work experience reported more psychological stress. Older and female workers, who felt lonely at home and reported psychological stress, perceived poor well-being. CONCLUSIONS: Our findings demonstrate that the Sars-CoV-2 outbreak and subsequent lockdown rules affected pharmacists' mental health and that it is important to put in place preventive measures against the occurrence of mental disorders among them.


Subject(s)
COVID-19 , Pandemics , COVID-19/epidemiology , Communicable Disease Control , Female , Humans , Italy/epidemiology , Mental Health , Pandemics/prevention & control , Pharmacists , SARS-CoV-2
18.
Psychooncology ; 31(8): 1322-1330, 2022 08.
Article in English | MEDLINE | ID: mdl-35411626

ABSTRACT

OBJECTIVE: Scan-related anxiety ("scanxiety") refers to the fear, stress, and anxiety in anticipation of tests and scans in follow-up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real-world, real-time capture of scanxiety using patients' personal smartphone. METHODS: Adolescent and Young Adult survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol. RESULTS: Thirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety. CONCLUSIONS: Findings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety.


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Child , Ecological Momentary Assessment , Feasibility Studies , Humans , Neoplasms/therapy , Smartphone , Survivors , Young Adult
19.
Psychooncology ; 31(6): 911-919, 2022 06.
Article in English | MEDLINE | ID: mdl-35018689

ABSTRACT

OBJECTIVE: 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. METHODS: The FCRI-SF was adapted through expert panel input and cognitive interviews with child survivors <18 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; Mage  = 14.58 years, SD = 2.90) and 106 parents (90% mothers). RESULTS: All 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. CONCLUSIONS: 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.


Subject(s)
Cancer Survivors , Adult , Cancer Survivors/psychology , Child , Fear/psychology , Female , Humans , Male , Neoplasm Recurrence, Local/psychology , Parents , Phobic Disorders , Reproducibility of Results , Surveys and Questionnaires , Survivors
20.
J Clin Psychol Med Settings ; 29(1): 230-238, 2022 03.
Article in English | MEDLINE | ID: mdl-34173900

ABSTRACT

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.


Subject(s)
Bereavement , Neoplasms , Adolescent , Child , Death , Grief , Humans , Male , Siblings
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