Family-centred care interventions for children with chronic conditions: A scoping review.

INTRODUCTION: Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family-centred care need information about the characteristics of existing interventions, their development and the domains of family-centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family-centred interventions designed to improve experiences with care for children with chronic conditions. METHODS: We searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7-20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family-centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full-text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family-centred care. RESULTS: Our search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed-methods studies (n = 9 each). The most frequently addressed domains of family-centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30). CONCLUSION: This review, which identified 61 unique interventions aimed at improving family-centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high-needs population. PATIENT OR PUBLIC CONTRIBUTION: This study was co-developed with three patient partner co-investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co-investigators contributed to this study at all stages, from conceptualization to dissemination.

Experiences of medical traumatic stress in parents of children with medical complexity.

BACKGROUND AND OBJECTIVES: Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS describes parents' reactions to their child's illness and medical treatment and can lead to post-traumatic stress symptoms. This is the first study to describe the experiences and impact of PMTS among parents of CMC. METHODS: We conducted semi-structured interviews with 22 parents of CMC. Reflexive thematic analysis was used to generate themes that described the experiences of PMTS and potential contributing factors in the healthcare setting. Themes were validated by study participants. RESULTS: Parents experienced a spectrum of events and circumstances that impacted PMTS. These corresponded to three major themes: (a) the distinctive context of being the parent of a CMC, (b) interactions with healthcare providers that can hurt or heal and (c) system factors that set the stage for trauma. The consequences of repeated PMTS were a common point of emphasis among all the themes. Parents identified numerous changes that could mitigate PMTS such as acknowledgement of trauma and provision of proactive mental health support. CONCLUSIONS: Our study highlights the issue of PMTS among parents of CMC and presents opportunities to mitigate their traumatic experiences. Supporting the integration of trauma-informed care practices, increasing awareness of PMTS and advocating for parental mental health services could better support parents and families.

Pain management communication between parents and nurses after pediatric outpatient surgery.

PURPOSE: The purpose of this study was to explore parent-nurse pain management communication during a child's discharge process following pediatric outpatient surgery. DESIGN AND METHODS: Thirty-two clinical encounters at discharge between parents (N = 40) and nurses (N = 25) at BC Children's Hospital were audio recorded and transcribed verbatim. Content analysis was applied on the audio recordings and corresponding transcripts using MAXQDA qualitative research software and Microsoft Excel. RESULTS: Overall, nurses delivered pain management instructions at an average sixth grade readability level and frequently used communication elements of reassurance, optimism, and question-asking. Less consistent communication elements included open-ended questions, interruptions, and promotion of parental decision-making. Parents most frequently asked one to five questions, with pain medication being the most inquired topic. CONCLUSIONS: Several strengths of the nurse communication approach were identified, and parent questions highlighted a need for greater understanding around pain medication. PRACTICE IMPLICATIONS: These findings will help guide effective pain management communication and care for young patients and their families.

Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain.

Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.

Is sharing really caring? Viewpoints on shared decision-making in paediatrics.

Shared decision-making (SDM), the cornerstone of family-centred care and the gold standard in health decision-making, occurs when the patient, family members and the health-care team members partner to make health decisions about the child. This partnership involves an exchange of medical information and information about patient/family preferences and values. Together, the health-care team, parent and patient deliberate to determine the best course of action for the child. Despite high-quality evidence supporting its positive impact on outcomes, SDM has not been widely adopted in paediatric clinical practice. Greater understanding of the impact of SDM on all members of the decision triad (parent, patient and health-care provider) may increase the likelihood of SDM adoption. Therefore, we present the viewpoints of a paediatric patient, parent and paediatrician about the use of SDM. A youth living with a rare chronic disease discusses the impacts of being involved and excluded from health decisions. A mother of a son living with a rare nephrotic condition discusses working with a health-care team who are committed and skilled in SDM and the positive impacts SDM has had for her son's care. A general paediatrician with research expertise in SDM discusses the individual and system level challenges and rewards of using SDM in her clinical practice. Based on the viewpoints presented, we offer pragmatic recommendations for using SDM in paediatric clinical practice.

Black and Latiné parents' perspectives on supporting their children's emotional and physical health.

Informed by integrative models of cultural resilience, the purpose of this study was to (a) explore how parents are promoting their children's emotional and physical health, with a focus on race and ethnic-racial socialization strategies, and (b) identify the barriers and challenges parents are experiencing in supporting their children's health. Ethnically racially matched qualitative interviews were conducted with 33 parents (82% women, 64% Black, 36% Latiné). Results of thematic analysis revealed three overarching themes: (a) Strategies for Promoting Children's Physical and Emotional Health, (b) Challenges Promoting Children's Physical and Emotional Health, and (c) Impact of Racism on Parenting and Children's Health. Most parents believed that racism had an impact on their parenting decisions and their children's health; however, there were some differences in ethnic-racial socialization practices between Black and Latiné parents. Findings have implications for culturally relevant parenting approaches to support children's emotional and physical health.

Trust of inpatient physicians among parents of children with medical complexity: a qualitative study.

Background: Trust is a foundation of the therapeutic relationship and is associated with important patient outcomes. Building trust between parents of children with medical complexity (CMC) and physicians during inpatient care is complicated by lack of relational continuity, cumulative (sometimes negative) parent experiences and the need to adjust roles and expectations to accommodate parental expertise. This study's objective was to describe how parents of CMC conceptualize trust with physicians within the pediatric inpatient setting and to provide recommendations for building trust in these relationships. Methods: Interviews with 16 parents of CMC were completed and analyzed using interpretive description methodology. Results: The research team identified one overarching meta theme regarding factors that influence trust development: situational awareness is needed to inform personalized care of children and families. There were also six major themes: (1) ensuring that the focus is on the child and family, (2) respecting both parent and physician expertise, (3) collaborating effectively, (4) maintaining a flow of communication, (5) acknowledging the impact of personal attributes, and (6) recognizing issues related to the healthcare system. Discussion: Many elements that facilitated trust development were also components of patient- and family-centered care. Parents in this study approached trust with inpatient physicians as something that needs to be earned and reciprocated. To gain the trust of parents of CMC, inpatient physicians should personalize medical care to address the needs of each child and should explore the perceptions, expertise, and previous experiences of their parents.

Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations.

ABSTRACT: In the traditional clinical research model, patients are typically involved only as participants. However, there has been a shift in recent years highlighting the value and contributions that patients bring as members of the research team, across the clinical research lifecycle. It is becoming increasingly evident that to develop research that is both meaningful to people who have the targeted condition and is feasible, there are important benefits of involving patients in the planning, conduct, and dissemination of research from its earliest stages. In fact, research funders and regulatory agencies are now explicitly encouraging, and sometimes requiring, that patients are engaged as partners in research. Although this approach has become commonplace in some fields of clinical research, it remains the exception in clinical pain research. As such, the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials convened a meeting with patient partners and international representatives from academia, patient advocacy groups, government regulatory agencies, research funding organizations, academic journals, and the biopharmaceutical industry to develop consensus recommendations for advancing patient engagement in all stages of clinical pain research in an effective and purposeful manner. This article summarizes the results of this meeting and offers considerations for meaningful and authentic engagement of patient partners in clinical pain research, including recommendations for representation, timing, continuous engagement, measurement, reporting, and research dissemination.

"We survived the pandemic together": The impact of the COVID-19 pandemic on Canadian families living with chronic pain.

Introduction: Pediatric chronic pain is a significant problem in Canada, affecting one in five youth. This study describes the impact of the pandemic on the experiences of Canadian families living with chronic pain through interviews with youth living with chronic pain, parents, and siblings. Methods: Employing a qualitative descriptive design, in-depth semistructured interviews were completed with Canadian youth living with pain, as well as parents and siblings. Participants were not required to be related. Interviews were analyzed using a reflexive thematic analysis approach. Results: Forty-four interviews were completed with 14 parents, 19 youth with chronic pain, and 11 siblings from across the country. Three key themes were developed: (1) absorbing and shifting: the toll of the pandemic on the family system (e.g., loss of coping mechanisms, shifting roles to respond to the pandemic), (2) social ambiguity and abandonment (e.g., social sacrifice and abandonment by the health care system), and (3) building community resilience: familial adaptation to the pandemic (e.g., family cohesion, confidence, and self-management). Discussion/Conclusions: Youth, parents, and siblings reported that the pandemic impacted coping strategies across the family system. These results outline the challenges youth experienced managing their pain and overall health throughout the pandemic and the resilience built within families during this time. Going forward, it would be relevant to examine how racialized and structurally marginalized youth with chronic pain and their families experienced the pandemic. Future research should examine how unexpected benefits of the pandemic (e.g., increased confidence and self-management) may be sustained into the future.

Introduction: La douleur chronique pédiatrique est un problème important au Canada, qui touche un jeune sur cinq. Cette étude décrit les répercussions de la pandémie sur les expériences des familles canadiennes vivant avec la douleur chronique par des entrevues avec des jeunes vivant avec une douleur chronique, des parents et des frères et sœurs.Méthodes: À l'aide d'un devis descriptif qualitatif, des entretiens semi-structurés approfondis ont été réalisés auprès de jeunes Canadiens vivant avec la douleur, leurs parents, et leurs frères et sœurs. Il n'était pas nécessaire que les participants aient un lien familial. Les entretiens ont été analysés à l'aide d'une approche d'analyse thématique réflexive.Résultats: Quarante-quatre entretiens ont été réalisés auprès de 14 parents, 19 jeunes souffrant de douleur chronique et 11 frères et sœurs de tout le pays. Trois thèmes clés ont été abordés : (1) l'absorption et le changement : le coût de la pandémie pour le système familial (p. ex., perte de mécanismes d'adaptation, changement de rôles pour réagir à la pandémie), (2) l'ambiguïté sociale et l'abandon (p. ex., le sacrifice social et l'abandon par le système de soins de santé), et (3) le renforcement de la résilience communautaire : adaptation familiale à la pandémie (p. ex., cohésion familiale, confiance et auto-prise en charge).Discussion/Conclusions: Les jeunes, les parents et les frères et sœurs ont signalé que la pandémie avait eu des répercussions sur les stratégies d'adaptation dans l'ensemble du système familial. Ces résultats décrivent les défis rencontrés par les jeunes pour prendre en charge leur douleur et leur santé globale tout au long de la pandémie, ainsi que la résilience démontrée par les familles pendant cette période. À l'avenir, il serait pertinent d'examiner comment les personnes racialisées et les jeunes structurellement marginalisés souffrant de douleur chronique et leurs familles ont vécu la pandémie.Les recherches futures devraient examiner comment les avantages inattendus de la pandémie (par exemple, une confiance accrue et l'auto-prise en charge) peuvent être maintenus à l'avenir.

Pain, mental health and healthcare utilization: Impact of the COVID-19 pandemic on youth with chronic pain, parents and siblings.

BACKGROUND: Paediatric chronic pain was a public health emergency before the novel coronavirus (COVID-19) pandemic, and this problem is predicted to escalate. Pain tends to occur intergenerationally in families, and youth with chronic pain and their parents have high rates of mental health issues, which can further exacerbate pain. Siblings of youth with chronic pain have been largely overlooked in research, as well as the impact of the pandemic on posttraumatic stress disorder (PTSD) symptoms and healthcare utilization. METHODS: This cross-sectional study examined pain, mental health and healthcare utilization in three groups: youth with chronic pain (n = 357), parents of youth with chronic pain (n = 233) and siblings of youth with chronic pain (n = 156) during the COVID-19 pandemic in Canada. RESULTS: More so than with pain symptoms, the results revealed high levels of mental health symptoms (i.e. anxiety, depressive, and PTSD), particularly in individuals more personally impacted by the pandemic. The largest effect was seen on PTSD symptoms for all groups. For parents with chronic pain, greater personal COVID-19 impact was related to worse pain interference. Reported rates of healthcare utilization were strikingly high, with youth with chronic pain, parents (reporting on behalf of their children with chronic pain), and siblings of youth with chronic pain reporting that most consultations were due to pain. CONCLUSIONS: Longitudinal research assessing these outcomes across continued waves of the pandemic is needed to ensure timely, tailored and equitable access to pain and mental health assessment and treatment. SIGNIFICANCE: This study examined pain, mental health, substance use and healthcare utilization in youth with chronic pain, siblings and parents during the COVID-19 pandemic. Greater personal impact of the pandemic was not largely associated with poorer pain outcomes; however, it was associated with mental health, with the largest effect on PTSD symptoms. The high rates and significant association of COVID-19 impact with PTSD symptoms underscore the importance of including PTSD assessment as part of routine screening practices in pain clinics.

Patient Responses to the Term Pain Catastrophizing: Thematic Analysis of Cross-sectional International Data.

Pain catastrophizing is understood as a negative cognitive and emotional response to pain. Researchers, advocates and patients have reported stigmatizing effects of the term in clinical settings and the media. We conducted an international study to investigate patient perspectives on the term pain catastrophizing. Open-ended electronic patient and caregiver proxy surveys were promoted internationally by collaborator stakeholders and through social media. 3,521 surveys were received from 47 countries (77.3% from the U.S.). The sample was mainly female (82.1%), with a mean age of 41.62 (SD 12.03) years; 95% reported ongoing pain and pain duration > 10 years (68.4%). Forty-five percent (n = 1,295) had heard of the term pain catastrophizing; 12% (n = 349) reported being described as a 'pain catastrophizer' by a clinician with associated high levels of feeling blamed, judged, and dismissed. We present qualitative thematic data analytics for responses to open-ended questions, with 32% of responses highlighting the problematic nature of the term. We present the patients' perspective on the term pain catastrophizing, its material effect on clinical experiences, and associations with negative gender stereotypes. Use of patient-centered terminology may be important for favorably shaping the social context of patients' experience of pain and pain care. PERSPECTIVE: Our international patient survey found that 45% had heard of the term pain catastrophizing, about one-third spontaneously rated the term as problematic, and 12% reported the term was applied to them with most stating this was a negative experience. Clinician education on patient-centered terminology may improve care and reduce stigma.

A personalized genomic results e-booklet, co-designed and pilot-tested by families.

Objective: To develop and evaluate a personalizable genomic results e-booklet that helps families understand their genomic testing results and navigate available resources. Methods: The need for the Genomics Results e-Booklet was identified by families, after which this tool was developed by a team of clinical researchers and three parent-advisors. We customized the genomic results e-booklet for 50 families participating in a genomic sequencing research study. We conducted an assessment using a 19-question survey and semi-structured interviews to elicit feedback and iteratively improve the tool. Results: 25 users provided feedback via questionnaires and seven respondents were interviewed. Genomic Results e-Booklet recipients responded favorably: 96% of participants stated that it helped them remember information shared during their results appointment, 80% said it had or would help them communicate their results with other healthcare providers, 68% felt that it helped to identify and guide their next steps, and 72% anticipated that the e-booklet would have future utility. Conclusion: The Genomic Results e-Booklet is a patient and family-oriented resource that complements post-test genetic counselling. Innovation: Compared to traditional laboratory reports and clinical letters, the Genomics Results e-Booklet is patient-conceived and patient-centered, and allows clinicians to efficiently personalize content and prioritize patient understanding and support.

Identification of Requirements for a Postoperative Pediatric Pain Risk Communication Tool: Focus Group Study With Clinicians and Family Members.

BACKGROUND: Pediatric surgery is associated with a risk of postoperative pain that can impact the family's quality of life. Although some risk factors for postoperative pain are known, these are often not consistently communicated to families. In addition, although tools for risk communication exist in other domains, none are tailored to pediatric surgery. OBJECTIVE: As part of a larger project to develop pain risk prediction tools, we aimed to design an easy-to-use tool to effectively communicate a child's risk of postoperative pain to both clinicians and family members. METHODS: With research ethics board approval, we conducted virtual focus groups (~1 hour each) comprising clinicians and family members (people with lived surgical experience and parents of children who had recently undergone surgery/medical procedures) at a tertiary pediatric hospital to understand and evaluate potential design approaches and strategies for effectively communicating and visualizing postoperative pain risk. Data were analyzed thematically to generate design requirements and to inform iterative prototype development. RESULTS: In total, 19 participants (clinicians: n=10, 53%; family members: n=9, 47%) attended 6 focus group sessions. Participants indicated that risk was typically communicated verbally by clinicians to patients and their families, with severity indicated using a descriptive or a numerical representation or both, which would only occasionally be contextualized. Participants indicated that risk communication tools were seldom used but that families would benefit from risk information, time to reflect on the information, and follow-up with questions. In addition, 9 key design requirements and feature considerations for effective risk communication were identified: (1) present risk information clearly and with contextualization, (2) quantify the risk and contextualize it, (3) include checklists for preoperative family preparation, (4) provide risk information digitally to facilitate recall and sharing, (5) query the family's understanding to ensure comprehension of risk, (6) present the risk score using multimodal formats, (7) use color coding that is nonthreatening and avoids limitations with color blindness, (8) present the most significant factors contributing to the risk prediction, and (9) provide risk mitigation strategies to potentially decrease the patient's level of risk. CONCLUSIONS: Key design requirements for a pediatric postoperative pain risk visualization tool were established and guided the development of an initial prototype. Implementing a risk communication tool into clinical practice has the potential to bridge existing gaps in the accessibility, utilization, and comprehension of personalized risk information between health care professionals and family members. Future iterative codesign and clinical evaluation of this risk communication tool are needed to confirm its utility in practice.

Mapping the current state of pediatric surgical pain care across Canada and assessing readiness for change.

Background: Preventing pediatric chronic postsurgical pain is a patient, parent/caregiver, health care professional, and policymaker priority. Poorly managed presurgical and acute postsurgical pain are established risk factors for pediatric chronic postsurgical pain. Effective perioperative pain management is essential to prevent the transition from acute to chronic pain after surgery. Aims: The aim of this study was to identify current pediatric surgical pain management practices and assess health system readiness for change at health care institutions conducting pediatric surgery in Canada. Methods: An online survey was completed by 85 multidisciplinary health care professionals (nurses, surgeons, anesthesiologists, allied health) from 20 health institutions in Canada regarding institutional pre- and postsurgical pediatric pain care, specialty pain services, and Organizational Readiness for Implementing Change (ORIC). Results: Of all specialty pain services, acute and chronic/complex pain services were most common, primarily with physician and nursing involvement. Alignment to recommended practices for pediatric pre- and postsurgical pain care varied (38.1%-79.8% reported "yes, for every child"), with tertiary/quaternary children's hospitals reporting less alignment than other institutions (community/regional or rehabilitation hospitals, community treatment centers). No significant differences were reported between health care institutions serving pediatric populations only versus those also serving adults. Health care professional experience/practice was the most reported strength in pediatric surgical pain care, with inconsistent standard of care the most common gap. Participants "somewhat agreed" that their institutions were committed and capable of change in pediatric surgical pain care. Conclusions: There is a continued need to improve pediatric pain care during the perioperative period at Canadian health care institutions to effectively prevent the development of pediatric postsurgical pain.

Contexte: La prévention de la douleur post-chirurgicale chronique pédiatrique est une priorité des patients, des parents/prestataires de soins, des professionnels de la santé et des décideurs. La douleur pré-chirurgicale et post-chirurgicale aiguë mal prises en charge constituent des facteurs de risque connus de la douleur post-chirurgicale chronique pédiatrique. La prise en charge efficace de la douleur périopératoire est essentielle pour prévenir la transition de la douleur aiguë à la douleur chronique aprés une chirurgie.Buts: Le but de cette étude était de recenser les pratiques actuelles en matiére de prise en charge de la douleur chirurgicale pédiatrique et d'évaluer l'état de préparation au changement du systéme de santé dans les établissements de soins de santé menant des chirurgies pédiatriques au Canada.Méthodes: 85 professionnels de la santé multidisciplinaires (infirmiéres, chirurgiens, anesthésistes, auxiliaires médicaux) ont répondu à un sondage en ligne de 20 établissements de santé au Canada concernant les soins pédiatriques pré et post-chirurgicaux en établissement, les services spécialisés de traitement de la douleur, les services de la douleur spécialisés et la préparation organisationnelle à la mise en œuvre du changement.Résultats: De tous les services de la douleur spécialisés, les services de la douleur aiguë et chronique/complexe étaient les plus fréquents, principalement avec la participation d'un médecin et d'une infirmiére. L'adéquation avec les pratiques recommandées pour les soins pédiatriques pré et post-chirurgicaux était variable (38,1 %-79,8 % ont déclaré « oui, pour chaque enfant ¼), alors que les hôpitaux pour enfants tertiaires/quaternaires ont déclaré moins d'adéquation que les autres institutions (hôpitaux communautaires/régionaux ou de réadaptation, centres de traitement communautaires). Aucune différence significative n'a été rapportée entre les établissements de soins de santé desservant uniquement les populations pédiatriques et ceux desservant aussi les adultes. L'expérience professionnelle/la pratique en matière de soins de santé a été la force la plus rapportée dans les soins de la douleur chirurgicale pédiatrique, tandis que les normes de soins incoh'rentes constituaient la lacune la plus courante. Les participants ont « quelque peu convenu ¼ que leurs institutions étaient engagées et capables de changer les soins chirurgicaux pédiatriques.Conclusions: ll y a un besoin continu déaméliorer les soins de la douleur pédiatrique pendant la période périopératoire dans les établissements de soins de santé canadiens afin de prévenir efficacement le développement de la douleur postopératoire.

Risk management for arsenic in agricultural soil-water systems: lessons learned from case studies in Europe.

Chronic exposure to arsenic may be detrimental to health. We investigated the behaviour, remediation and risk management of arsenic in Freiberg, Germany, characterized by past mining activities, and near Verdun in France, where World War I ammunition was destroyed. The main results included: (1) pot experiments using a biologically synthesized adsorbent (sorpP) with spring barley reduced the mobility of arsenic, (2) the Omega-3 Index ecotoxicological tests verified that sorpP reduced the uptake and toxicity of arsenic in plants, (3) reverse osmosis membrane systems provided 99.5% removal efficiency of arsenic from surface water, (4) the sustainability assessment revealed that adsorption and coagulation-filtration processes were the most feasible options for the treatment of surface waters with significant arsenic concentrations, and (5) a model was developed for assessing health risk due to arsenic exposure. Risk management is the main option for extensive areas, while remediation options that directly treat the soil can only be considered in small areas subject to sensitive use. We recommend the risk management procedure developed in Germany for other parts of the world where both geogenic and anthropogenic arsenic is present in agricultural soil and water. Risk management measures have been successful both in Freiberg and in Verdun.

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study.

Chronic pain affects 1 in 5 youth, many of whom manage their pain using a biopsychosocial approach. The COVID-19 pandemic has impacted the way that healthcare is delivered. As part of a larger program of research, this study aimed to understand the impact of the pandemic on pediatric chronic pain care delivery including impact on patients' outcomes, from the perspective of pediatric healthcare providers. A qualitative descriptive study design was used and 21 healthcare providers from various professional roles, clinical settings, and geographic locations across Canada were interviewed. Using a reflexive thematic analysis approach 3 themes were developed: (1) duality of pandemic impact on youth with chronic pain (i.e., how the pandemic influenced self-management while also exacerbating existing socioeconomic inequalities); (2) changes to the healthcare system and clinical practices (i.e., triaging and access to care); (3) shift to virtual care (i.e., role of institutions and hybrid models of care). These findings outline provider perspectives on the positive and negative impacts of the pandemic on youth with chronic pain and highlight the role of socioeconomic status and access to care in relation to chronic pain management during the pandemic in a high-income country with a publicly funded healthcare system.

Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.

INTRODUCTION: Children with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interventions involving multiple components and stakeholders, customised to specific care contexts. This study aims to comprehensively understand the healthcare experiences of children with IMDs and their families across Canada. METHODS AND ANALYSIS: A two-stage explanatory sequential mixed methods design will be used. Stage 1: quantitative data on healthcare networks and encounter experiences will be collected from 100 parent/guardians through a care map, 2 baseline questionnaires and 17 weekly diaries over 5-7 months. Care networks will be analysed using social network analysis. Relationships between demographic or clinical variables and ratings of healthcare experiences across a range of family centred care dimensions will be analysed using generalised linear regression. Other quantitative data related to family experiences and healthcare experiences will be summarised descriptively. Ongoing analysis of quantitative data and purposive, maximum variation sampling will inform sample selection for stage 2: a subset of stage 1 participants will participate in one-on-one videoconference interviews to elaborate on the quantitative data regarding care networks and healthcare experiences. Interview data will be analysed thematically. Qualitative and quantitative data will be merged during analysis to arrive at an enhanced understanding of care experiences. Quantitative and qualitative data will be combined and presented narratively using a weaving approach (jointly on a theme-by-theme basis) and visually in a side-by-side joint display. ETHICS AND DISSEMINATION: The study protocol and procedures were approved by the Children's Hospital of Eastern Ontario's Research Ethics Board, the University of Ottawa Research Ethics Board and the research ethics boards of each participating study centre. Findings will be published in peer-reviewed journals and presented at scientific conferences.

Don't tell me, show me: Reactions from those with lived experience to the 2020 revised IASP definition of pain.

In 2020, the International Association for the Study of Pain (IASP) revised the definition of pain, providing an update to IASP's original definition in place since 1979. The origins of the field of pediatric pain, born in part in the 1980s from the advocacy of Jill Lawson, mother to Jeffrey Lawson who experienced gross inadequacies in pain care as a premature infant, emphasize the critical need to listen to and act with the voice of people living with pain and their families and caregivers. Furthermore, the field of pediatric pain emerged in the mid-1980s marking this revised definition of pain as the first opportunity within which the experience and science of pain in childhood has been considered. This invited commentary offers two lived experience reactions to the revised IASP definition of pain, from the perspective of one's own experience with pain during childhood and as parents and family members. Together, they highlight that the value of a revised definition must be judged on its ability to directly benefit children experiencing pain and their families. Their skeptical hope reflects their lived experience backed by empirical evidence demonstrating continued inequities and inadequacies in preventing and managing pediatric pain. We must mobilize together to ensure change in culture, knowledge, and behavior. With the combined efforts of researchers, healthcare professionals, and policymakers, in partnership with diverse people with lived experience, we can ensure that more effective action is taken to rapidly improve pain for children and their families.

Best practices for virtual care to support youth with chronic pain and their families: a rapid systematic review to inform health care and policy during COVID-19 and beyond.

The COVID-19 pandemic has acutely challenged health systems and catalyzed the need for widescale virtual care and digital solutions across all areas of health, including pediatric chronic pain. The objective of this rapid systematic review was to identify recommendations, guidelines, and/or best practices for using virtual care to support youth with chronic pain and their families (CRD42020184498). MEDLINE, CINAHL, Embase, APA PsychINFO, and Web of Science were searched the week of May 25, 2020, for English language peer-reviewed articles published since 2010 that (1) discussed children and adolescents aged <18 years reporting any type of chronic pain (ie, pain lasting >3 months); (2) focused on any type of virtual care (eg, telephone, telehealth, telemedicine, mHealth, eHealth, online, or digital); and (3) reported on guidelines, best practices, considerations, or recommendations for virtual care. Abstract and full text screening and data extraction were performed in duplicate. Meta-ethnography was used to synthesize concepts across articles. Of 4161 unique records screened, 16 were included addressing diverse virtual care and pediatric chronic pain conditions. Four key themes were identified: (1) opportunities to better leverage virtual care, (2) direct effective implementation of virtual care, (3) selection of virtual care platforms, and (4) gaps in need of further consideration when using virtual care to support youth with chronic pain and their families. No existing guidelines for virtual care for pediatric chronic pain were identified; however, best practices for virtual care were identified and should be used by health professionals, decision makers, and policymakers in implementing virtual care.

Rapid Evidence and Gap Map of virtual care solutions across a stepped care continuum for youth with chronic pain and their families in response to the COVID-19 pandemic.

ABSTRACT: Poor access to pediatric chronic pain care is a longstanding concern. The COVID-19 pandemic has necessitated virtual care delivery at an unprecedented pace and scale. We conducted a scoping review to create an interactive Evidence and Gap Map of virtual care solutions across a stepped care continuum (ie, from self-directed to specialist care) for youth with chronic pain and their families. Review methodology was codesigned with 8 youth with chronic pain and 7 parents/caregivers. Data sources included peer-reviewed scientific literature, gray literature (app stores and web sites), and a call for innovations. Records were independently coded and assessed for quality. Overall, 185 records were included (105 scientific records, 56 apps, 16 web sites, and 8 innovations). Most virtual care solutions were applicable across pediatric chronic pain diagnoses, with the greatest proportion at lower levels of stepped care (ie, >100 self-guided apps and web sites). Virtual delivery of psychological strategies was common. Evidence gaps were noted at higher levels of stepped care (ie, requiring more resource and health professional involvement), integration with health records, communication with health professionals, web accessibility, and content addressing social/family support, medications, school, substance use, sleep, diet, and acute pain flares or crises. Evidence and Gap Maps are a novel visual knowledge synthesis tool, which enable rapid evidence-informed decision-making by patients and families, health professionals, and policymakers. This evidence and gap map identified high-quality virtual care solutions for immediate scale and spread and areas with no evidence in need of prioritization. Virtual care should address priorities identified by youth with chronic pain and their families.