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.

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.

"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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

COVID-19 Pandemic Impact and Response in Canadian Pediatric Chronic Pain Care: A National Survey of Medical Directors and Pain Professionals.

: The COVID-19 pandemic presents one of the greatest threats to pediatric pain care seen in generations. Due to public health restrictions, many pediatric pain clinics halted in-person appointments, delaying and disrupting access to care. There is no existing research on the impacts of COVID-19 on pediatric chronic pain care in Canada or the challenges experienced by health care professionals and pain clinics.

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.

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.

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.

Barriers and Facilitators to Effective Pain Management by Parents After Pediatric Outpatient Surgery.

Introduction: The purpose of this study was to describe the experience of postoperative pain management from the perspectives of parents and identify areas for improvement.

Method: Forty parents or legal guardians of children aged 5-18 years who underwent outpatient surgery at BC Children's Hospital were recruited. Qualitative semistructured interviews were conducted to explore participants' experiences with the discharge instructions and at-home pain management.

Patients as Partners in Research: How to Talk About Compensation With Patient Partners.

This editorial builds on the previous editorials in the patient partnership series, and aims to share practical advice related to compensation for patient research partners. In the authors' first publication on patient partner compensation in research and health care, they presented the "why" and "how." Here, they build on the "how" to help alleviate the awkwardness of that conversation.

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.