A developmental framework for understanding the influence of sex and gender on health: Pediatric pain as an exemplar.

Sex differences are a robust finding in many areas of adult health, including cardiovascular disease, psychiatric disorders, and chronic pain. However, many sex differences are not consistently observed until after the onset of puberty. This has led to the hypothesis that hormones are primary contributors to sex differences in health outcomes, largely ignoring the relative contributions of early developmental influences, emerging psychosocial factors, gender, and the interaction between these variables. In this paper, we argue that a comprehensive understanding of sex and gender contributions to health outcomes should start as early as conception and take an iterative biopsychosocial-developmental perspective that considers intersecting social positions. We present a conceptual framework, informed by a review of the literature in basic, clinical, and social science that captures how critical developmental stages for both sex and gender can affect children's health and longer-term outcomes. The literature on pediatric chronic pain is used as a worked example of how the framework can be applied to understanding different chronic conditions.

A systematic review of self and observer assessment of pain and related functioning in youth with brain-based developmental disabilities.

ABSTRACT: Pain experiences of youth with brain-based developmental disabilities are often overlooked and/or misinterpreted, increasing the risk for poor or inadequate pain assessment and management. Ample measures exist to assess acute and chronic pain, yet their utility and frequency of use in youth with brain-based developmental disabilities is unclear and available measures do not have strong measurement properties for this diverse group. This systematic review identified the scope of self-reported and observer-reported pain assessment in studies of youth (aged 3-24 years) with brain-based developmental disabilities (phase 1) and summarized other measures of pain-related functioning for acute and chronic pain (ie, physical, emotional, social, sleep, and quality of life, within the subset of quantitative studies focused primarily on pain, phase 2). A comprehensive search for English-language studies was conducted in August 2022 in Web of Science, CINAHL, MEDLINE, Cochrane CENTRAL, EMBASE, and APA PsychINFO (PROSPERO registration: CRD42021237444). A total of 17,029 unique records were screened. Of the 707 articles included in phase 1, most assessed chronic pain (n = 314; 62.0%) and primarily used observer-report (n = 155; 31%) over self-report (n = 67; 13%). Of the 137 articles included in phase 2, other outcomes assessed alongside pain intensity included motor ability (16.8%), adaptive functioning (11%), quality of life (8%), pain interference (6.6%), mental health (5.8%), and communication ability (2.9%). Cerebral palsy was the most common population in both phase 1 (n = 343; 48.5%) and phase 2 (n = 83; 59.7%). This review provides a foundational understanding of pain assessment in brain-based developmental disabilities and highlights continued inequities in holistic pain assessment for this population.

Challenges with embedding an integrated sex and gender perspective into pain research: Recommendations and opportunities.

The focus of this article, within this BBI horizons special issue, is on sex, gender, and pain. We summarise what is currently known about sex- and gender-related variations in pain, exploring intersectional biological and psychosocial mechanisms, and highlight gaps in knowledge and understanding. Five key challenges with the exploration of sex and gender in pain research are presented, relating to: conceptual imprecision, research bias, limitations with binary descriptions, integrating sex and gender, and timely adoption/implementation of good research practice. Guidance on how to overcome such challenges is provided. Despite clear evidence for sex and gender differences in pain, there are conceptual and methodological barriers to overcome. Innovation in methods and approach can help develop more effective and tailored treatment approaches for men, women, boys, girls, and gender-diverse people.

Topical Review: Acute and Chronic Pain Experiences in Transgender and Gender-Diverse Youth.

OBJECTIVE: To provide an overview of the existing literature on gender diversity in pediatric acute and chronic pain, propose an ecological systems model of understanding pain in transgender and gender-diverse (TGD) youth, and identify a direction for future work that will address the key knowledge gaps identified. METHODS: Relevant literature on pain and gender diversity was reviewed, drawing from adult literature where there was insufficient evidence in pediatric populations. Existing relevant models for understanding minority stress, gender and pain, and pain experiences within marginalized groups were considered with the reviewed literature to develop a pain model in TGD youth. RESULTS: While there is an abundance of literature pointing to increased risk for pain experiences amongst TGD youth, there is comparably little empirical evidence of the rates of pain amongst TGD youth, prevalence of TGD identities in pain care settings, effective pain treatments for TGD youth and unique considerations for their care, and the role intersectional factors in understanding TGD youth identities and pain. CONCLUSION: Pediatric psychologists are well-positioned to advance the research on acute and chronic pain in TGD youth, make evidence-based adaptations to clinical care for TGD youth with pain, including pain related to gender affirmation, and support colleagues within the medical system to provide more inclusive care.

The Role of Parenting Stress as a Mediator in the Relationship Between Postpartum Depressive Symptoms and Early Childhood Internalizing Behaviour.

Parenting stress occurs when demands of the parenting role are perceived as overwhelming and has been proposed as a mechanism through which postpartum mood disturbances may impact child psychopathology. In a prospective longitudinal birth cohort of 111 birthing parent-child dyads, this study examined whether the relationship between birthing parents' mood symptoms in infancy (3 months postpartum) and their child's internalizing behaviour in early childhood (3 and 6 years old) is mediated by parenting stress at 6 months postpartum. The relationship between higher postpartum mood symptoms at 3 months and increased internalizing behaviour at 3 years of age was mediated by increased reports of parenting stress at 6 months (b = .12, 95% CI = .02, .25). This association was not evident at 6 years. Parenting stress in early infancy may provide a treatment target to reduce the impact of perinatal depression on early child behavior.

"Making Data the Drug": A Pragmatic Pilot Feasibility Randomized Crossover Trial of Data Visualization as an Intervention for Pediatric Chronic Pain.

Data tracking is a common feature of pain e-health applications, however, viewing visualizations of this data has not been investigated for its potential as an intervention itself. We conducted a pilot feasibility parallel randomized cross-over trial, 1:1 allocation ratio. Participants were youth age 12-18 years recruited from a tertiary-level pediatric chronic pain clinic in Western Canada. Participants completed two weeks of Ecological Momentary Assessment (EMA) data collection, one of which also included access to a data visualization platform to view their results. Order of weeks was randomized, participants were not masked to group assignment. Objectives were to establish feasibility related to recruitment, retention, and participant experience. Of 146 youth approached, 48 were eligible and consented to participation, two actively withdrew prior to the EMA. Most participants reported satisfaction with the process and provided feedback on additional variables of interest. Technical issues with the data collection platform impacted participant experience and data analysis, and only 48% viewed the visualizations. Four youth reported adverse events not related to visualizations. Data visualization offers a promising clinical tool, and patient experience feedback is critical to modifying the platform and addressing technical issues to prepare for deployment in a larger trial.

A genderful research world: rapid review, design, and pilot study of an interactive platform for curated sex and gender health research resources.

BACKGROUND: Integration of sex and gender into health research is best practice for designing and conducting equitable, rigorous scientific research. Many evidence-based resources exist to support researchers in this endeavour, but such resources often remain underutilized as they are difficult to find, are not publicly accessible, or are specific to a particular research phase, context, or population. The development and evaluation of a repository of resources was deemed important to create an accessible platform for promoting sex- and gender-integration in health research. METHODS: A rapid review was conducted of critical resources for conducting sex and gender health research. These were integrated into a prototype website design (the Genderful Research World; GRW) that provided an interactive digital landscape for researchers to access these resources. A pilot study evaluated the GRW website for applicability, desirability, and usability with an international sample of 31 health researchers from various disciplines and career stages. Quantitative data from the pilot study was summarized with descriptive statistics. Qualitative data was summarized narratively and used to identify concrete elements for improvement in a second design iteration. RESULTS: Results of the pilot study revealed that the GRW was considered user friendly and desirable by health researchers and helped them access relevant information. Feedback suggested that providing these resources in a playful way may enhance the experience of the user, particularly given the high 'desirability' scores and that users emphasized the interactive layout as being key to their intention to integrate it into their teaching endeavors. Key feedback from the pilot study (e.g., addition of resources specific to research with transgender populations, revision of website layout) was integrated into the current version of the website: www.genderfulresearchworld.com . CONCLUSIONS: The present research suggests a utility for a repository of resources for integrating sex and gender considerations into research, and that providing a logical, intuitive means of cataloguing and navigating such resources is critical for usability. The results of this study may inform the development of other novel researcher-directed resource curation efforts to address health equity issues and encourage and support health researchers to integrate a sex and gender perspective in their work.

Family Perspectives on In-Home Multimodal Longitudinal Data Collection for Children Who Function Across the Developmental Spectrum.

OBJECTIVE: Quality child health research requires multimodal, multi-informant, longitudinal tools for data collection to ensure a holistic description of real-world health, function, and well-being. Although advances have been made, the design of these tools has not typically included community input from families with children whose function spans the developmental spectrum. METHODS: We conducted 24 interviews to understand how children, youth, and their families think about in-home longitudinal data collection. We used examples of smartphone-based Ecological Momentary Assessment of everyday experiences, activity monitoring with an accelerometer, and salivary stress biomarker sampling to help elicit responses. The children and youth who were included had a range of conditions and experiences, including complex pain, autism spectrum disorder, cerebral palsy, and severe neurologic impairments. Data were analyzed using reflexive thematic analysis and descriptive statistics of quantifiable results. RESULTS: Families described (1) the importance of flexibility and customization within the data collection process, (2) the opportunity for a reciprocal relationship with the research team; families inform the research priorities and the development of the protocol and also benefit from data being fed back to them, and (3) the possibility that this research approach would increase equity by offering accessible participation opportunities for families who might otherwise not be represented. Most families expressed interest in participating in in-home research opportunities, would find most methods discussed acceptable, and cited 2 weeks of data collection as feasible. CONCLUSION: Families described diverse areas of complexity that necessitate thoughtful adaptations to traditional research designs. There was considerable interest from families in active engagement in this process, particularly if they could benefit from data sharing. This feedback is being incorporated into pilot demonstration projects to iteratively codesign an accessible research platform.

When feelings hurt: Learning how to talk with families about the role of emotions in physical symptoms.

Emotions are at the core of all human experiences, but talking about emotions is challenging, particularly in the context of medical encounters focused on somatic symptoms. Transparent, normalizing, and validating communication about the mind-body connection opens the door for respectful, open dialogue between the family and members of the care team, acknowledging the lived experience that is brought to the table in understanding the problem and co-creating a solution.

Alterations in pain during adolescence and puberty.

During adolescence and puberty, alterations in pain, both experimental and clinical, are observed. In addition, adolescents undergo extensive biopsychosocial changes as they transition from childhood to adulthood. However, a better understanding of how the biopsychosocial changes during adolescence impact pain is needed to improve pain management and develop targeted pain interventions for adolescents. This review synthesizes the literature on alterations in pain during adolescence in humans, describes the potential biopsychosocial factors impacting pain during adolescence, and suggests future research directions to advance the understanding of the impact of adolescent development on pain.

Data visualization as an intervention for pediatric chronic pain: a pilot feasibility study protocol for a randomized controlled crossover trial.

BACKGROUND: Chronic pain is a common and costly condition in youth, associated with negative implications that reach far beyond the pain experience itself (e.g., interference with recreational, social, and academic activities, mental health sequelae). As a self-appraised condition, pain experience is influenced by patient's biases and meaning-making in relation to their symptoms and triggers. We propose that interacting with self-reported data will impact the experience of pain by altering understanding and expectations of symptom experience and how pain interacts with other factors (e.g., sleep, emotions, social interactions). In this study, we aim to establish the feasibility and acceptability of using a data visualization platform to track and monitor symptoms and their relationship with other factors, versus simply daily reporting of symptoms using a smartphone-based Ecological Momentary Assessment (EMA). METHODS: This protocol is for a randomized, single-center, open-label crossover trial. We aim to recruit 50 typically developing youth aged 12-18 years with chronic pain to take part in two phases of data collection. The trial will utilize an A-B counterbalanced design in which participants will be randomly assigned to receive either Part A (EMA alone for 7 days) or Part B (EMA plus visualization platform for 7 days) first and then receive the opposite phase after a 7-day break (washout period). Key outcomes will be participant reports of acceptability and feasibility, EMA completion rates, barriers, and perceptions of the benefits or risks of participation. Secondary exploratory analyses will examine the relationship between EMA-reported symptoms over time and in relation to baseline measures, as well as pilot data on any improvements in symptoms related to engaging with the data visualization platform. DISCUSSION: This protocol describes the feasibility and pilot testing of a novel approach to promoting self-management and facilitating symptom appraisal using visualized data. We aim to determine whether there is a sufficient rationale, both from the perspective of feasibility and patient satisfaction/acceptability, to conduct a larger randomized controlled trial of this intervention. This intervention has the potential to support clinical care for youth with chronic pain and other conditions where self-appraisal and understanding of symptom patterns are a critical component of functional recovery. TRIAL REGISTRATION: Open Science Framework doi: https://doi.org/10.17605/OSF.IO/HQX7C . Registered on October 25, 2021, osf.io/hqx7c.

Pediatric Avoidant-Restrictive Food Intake Disorder and gastrointestinal-related Somatic Symptom Disorders: Overlap in clinical presentation.

Certain presentations of Avoidant/Restrictive Food Intake Disorder (ARFID) and Somatic Symptom and Related Disorders (SSRDs) have conceptual overlap, namely, distress and impairment related to a physical symptom. This study compared characteristics of pediatric patients diagnosed with ARFID to those with gastrointestinal (GI)-related SSRD. A 5-year retrospective chart review at a tertiary care pediatric hospital comparing assessment data of patients with a diagnosis of ARFID (n = 62; 69% girls, Mage = 14.08 years) or a GI-related SSRD (n = 37; 68% girls, Mage = 14.25 years). Patients diagnosed with ARFID had a significantly lower percentage of median BMI than those with GI-related SSRD. Patients diagnosed with ARFID were most often assessed in the Eating Disorders Program, whereas patients diagnosed with an SSRD were most often assessed by Consultation-Liaison Psychiatry. Groups did not differ on demographics, psychiatric diagnoses, illness duration, or pre-assessment services/medications. GI symptoms were common across groups. Patients diagnosed with an SSRD had more co-occurring medical diagnoses. A subset (16%) of patients reported symptoms consistent with both diagnoses. Overlap is observed in the clinical presentation of pediatric patients diagnosed with ARFID or GI-related SSRD. Some group differences emerged, including anthropometric measurements and co-occurring medical conditions. Findings may inform diagnostic classification and treatment approach.

Factors associated with parents' experiences using a knowledge translation tool for vaccination pain management: a qualitative study.

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

Understanding parents' use of a knowledge translation tool to manage children's vaccination pain.

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.

Making Sense of "Somatization": A Systematic Review of its Relationship to Pediatric Pain.

OBJECTIVES: Pain and other physical symptoms commonly co-occur in childhood. There is debate about the relevance of somatization in understanding pain. The present review critically appraised and synthesized the extant literature on the relationship between pediatric pain and somatization. METHODS: A systematic review (PROSPERO registration #95956) was conducted in Medline, PsycINFO, EMBASE, and CINAHL using search terms related to pain and somatization in children and adolescents. A total of 156 articles were eligible for inclusion in the review. For studies that measured somatization using a symptom questionnaire, descriptions of "somatization" were extracted. Data regarding the relationship between pain and somatization were extracted for studies measuring somatization using a diagnostic category (e.g., Somatic Symptom and Related Disorders [SSRDs]). RESULTS: While many studies using somatic symptom questionnaires described somatization as having a psychological component, this was not always captured in measurement tools. Pain was reported as a common symptom in patients with an SSRD diagnosis, though rates varied depending on the specific diagnosis and pain location. Rates of SSRD diagnoses among pain patients were less frequent than rates of pain amongst SSRD patients. CONCLUSIONS: SSRDs and pain commonly co-occur, though rates differ depending on diagnosis and pain location. Understanding the relationship between pain and somatization is complicated by the discrepancy between how somatization is defined and measured in questionnaire studies. A comprehensive and measurable definition of somatization is needed so researchers can better identify the shared and unique contributions of pain and somatization in pediatric populations.

Exploring the relationship between male norm beliefs, pain-related beliefs and behaviours: An online questionnaire study.

BACKGROUND: Gender beliefs help explain the variation found in pain among men and women. Gender norms and expectations are thought to affect how men and women report and express pain. However, less is known about how such beliefs are related to pain outside of laboratory settings. The aim of this study was therefore to consider the relationship between beliefs in male role norms, pain and pain behaviours in men and women. METHODS: An online questionnaire study was conducted. A total of 468 adults (352 women), with or without pain, completed a series of self-report measures relating to beliefs about pain and male role norms, as well as pain and general health behaviours. RESULTS: An experience of pain was associated with lower beliefs in traditional male norms. Endorsing stereotypical male norms was related to increased stigma associated with seeking professional help for pain in both men and women, but to a lesser extent associated with general health behaviours. There also seemed to be gender-based beliefs associated with the expression of pain. CONCLUSIONS: Together these findings suggest that beliefs in gender (male) norms are relevant to pain, and that there is utility in exploring the variation in pain beyond binary male-female categories.