Building I-INTERACT-North: Participatory Action Research Design of an Online Transdiagnostic Parent-Child Interaction Therapy Program to Optimize Congenital and Neurodevelopmental Risk.

To adapt an existing virtual family-based mental health intervention learning platform (I-InTERACT-North), using participatory action research design, to meet the needs of parents and children with congenital, neonatal, and neurodevelopmental conditions that impact development. A purposive sample of parent knowledge users recruited from a large pediatric hospital (n = 21) and clinician stakeholders (n = 16) participated in one interview. An iterative process was adopted to implement feedback in the adaption of the learning platform. Qualitative thematic analysis was used to examine themes across participant feedback. Initial satisfaction with the adapted website was high. Qualitative results revealed four themes: acceptability, usability, recommendations, and dissatisfaction. Addressed with iterations, technical difficulties, wanting more information on content, resources, and intended audience were areas of dissatisfaction. This study reflects the importance of participatory action research methods in informing virtual mental health interventions. Future directions to improve the learning platform are discussed.

Multimodal intervention to improve the transition of patients with inflammatory bowel disease from pediatric to adult care: protocol for a randomized controlled trial.

BACKGROUND: Transition in care is defined as the "purposeful and planned movement of adolescents and young adults with a chronic medical condition from pediatric to adult-oriented healthcare systems/care providers." Currently, there are no Level 1 evidence-based interventions to improve the care of transitioning adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). The development of a transition program using a biopsychosocial approach will improve the standards for healthcare delivery to transitioning IBD patients. This is a protocol for a structured randomized controlled trial (RCT) to assess the clinical and implementation effectiveness of a multimodal intervention focused on improving patient function, transition readiness and outcomes among AYA patients with IBD being cared for at pediatric centers in Canada. METHODS: This multi-center RCT is a type 1 hybrid effectiveness-implementation trial to evaluate effectiveness of the intervention and how it can be implemented more widely after the trial. We will include patients aged 16.0-17.5 years. The intervention program consists of 4 core components: (1) individualized assessment, (2) transition navigator, (3) virtual patient skills-building with a focus on building resilience, self-management and self-efficacy, and (4) a virtual structured education program. The control group will undergo standard-of-care defined by each participating center. The primary outcome will be the IBD Disability Index, a validated measure to assess patient functioning. Secondary outcomes include transition readiness and success, anxiety and depression scales, and health service utilization rates. Additionally, we will measure implementation outcomes and related barriers and facilitators for the intervention program. DISCUSSION: The type 1 hybrid effectiveness-implementation design will allow for the development of a feasible, sustainable, and acceptable final intervention model. The intervention will consist of modules that can be accessed in an online, virtual platform. The implementation will allow centralization of interventions and funding in order to minimize the impact on local clinical practice or hospital resources. The authors anticipate that the main study limitation will relate to study subjects not completely adhering to every component of the intervention, which will be evaluated and addressed using the implementation science approach. TRIAL REGISTRATION: NCT05221281. Registry: ClinicalTrials.gov. Date of registration: February 2, 2022. https://clinicaltrials.gov/ct2/show/NCT05221281 .

A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness.

BACKGROUND: The transition from pediatric to adult health care can be challenging for adolescents with chronic illnesses. As a result, many adolescents are unable to transfer to adult health care successfully. Adequate measurement of transition readiness and transfer satisfaction with disease management is necessary in order to determine areas to target for intervention towards improving transfer outcomes. OBJECTIVES: This study aims to systematically review and critically appraise research on transition readiness and transfer satisfaction measures for adolescents with chronic illnesses as well as to assess the psychometric quality of these measures. METHODS: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL, PsychINFO, ERIC, and ISI Web of Knowledge for transition readiness and transfer satisfaction measures for adolescents with chronic health conditions. Two reviewers independently selected articles for review and assessed methodological quality. RESULTS: In all, eight readiness and six satisfaction measures met the inclusion criteria, for a total of 14 studies, which were included in the final analysis. None of these measures have well-established evidence of reliability and validity. Most of the measures were developed ad hoc by the study investigators, with minimal to no evidence of reliability and/or validity using the Cohen criteria and COSMIN checklist. CONCLUSION: This research indicates a major gap in our knowledge of transitional care in this population, because there is currently no well-validated questionnaire that measures readiness for transfer to adult health care. Future research must focus on the development of well-validated transition readiness questionnaires, the validation of existing measures, and reaching consensus on outcomes of successful transfer.

A multi-site pilot randomized clinical trial of the Treatment and Education Approach for Childhood-onset Lupus (TEACH) program: study design and COVID-19 adaptations.

BACKGROUND: Childhood-onset Systemic Lupus Erythematosus (cSLE) is an autoimmune disease associated with fatigue, mood symptoms, and pain. Fortunately, these symptoms are potentially modifiable with psychological intervention such as cognitive-behavioral therapy (CBT). The Treatment and Education Approach for Childhood-onset Lupus (TEACH) program is a CBT intervention developed to target these symptoms for adolescents and young adults with cSLE. This pilot randomized controlled trial (RCT) aims to determine the feasibility and effect of TEACH for youth with cSLE. Adjustments to the study protocol following the COVID-19 pandemic are also described. METHODS: This two-arm multisite RCT will explore the feasibility (primary outcome) and effect (secondary outcome) of a remotely delivered TEACH protocol. Participants will be randomized to a six-week remotely delivered TEACH program plus medical treatment as usual (TAU) or TAU alone. We will include patients ages 12-22 years presenting to rheumatology clinics from six sites. Validated measures of fatigue, depressive symptoms, and pain will be obtained at baseline and approximately eight and 20 weeks later. Protocol adjustments were also made due to the COVID-19 pandemic, in collaboration with the investigative team, which included patients and caregivers. CONCLUSIONS: Findings from this multi-site RCT aim to document the feasibility of TEACH and provide an estimate of effect of a remotely delivered TEACH protocol on fatigue, depression, and pain symptoms in youth with cSLE as compared to standard medical treatment alone. This findings may positively impact clinical care for patients with cSLE. CLINICAL TRIALS: gov registration: NCT04335643.

The Pain Coping Questionnaire short-form: preliminary reliability and validity.

INTRODUCTION: The Pain Coping Questionnaire (PCQ) has support for its validity and reliability as a tool to understand how a child copes with pain of an extended duration. However, measure length may limit feasibility in clinical settings. OBJECTIVES: The primary goal of this study was to develop a short-form (PCQ-SF) that could be used for screening how children cope with chronic or recurrent pain and examine its reliability and validity. METHODS: The PCQ-SF was developed in a stepwise manner. First, a confirmatory factor analysis was computed using an amalgamated data set from the validation studies of the PCQ (N = 1225). Next, ratings from researchers and clinicians were obtained on PCQ item content and clarity (n = 12). Finally, the resulting 16-item short-form was tested in a pediatric sample living with chronic and recurrent pain (65 parent-child dyads; n = 128). RESULTS: The PCQ-SF has acceptable preliminary reliability and validity. Both statistical and expert analyses support the collective use of the 16 items as an alternative to the full measure. CONCLUSIONS: The compact format of the PCQ-SF will allow practitioners in high-volume clinical environments to quickly determine a child's areas of strengths and weaknesses when coping with pain. Future research using larger more diverse samples to confirm clinical validity is warranted.

Mindfulness Practices for Children and Adolescents Receiving Cancer Therapies.

Background: Mindfulness is our innate capacity to pay full, conscious, and compassionate attention to something in the moment. It is also a skill that can be strengthened by mental practice. More recently, mindfulness-based interventions (MBIs) are identified within clinical practice guidelines as an intervention in the treatment of certain symptoms for children with cancer. However, there is little guidance available on the practice of using MBIs in the pediatric oncology population. The aim of this paper is to provide an overview of mindfulness, highlights symptoms where mindfulness practices may be of benefit, identifies trauma-sensitive considerations, and provides examples of MBIs that may be considered in the context of pediatric oncology. Methods: Collaboration of expert opinion, which included The Mindfulness Project Team, has enabled this collective informative paper. Results: Mindfulness has been recommended to help with the symptom of fatigue in children with cancer. Emotional symptoms such as anxiety, sadness, and anger may also benefit from the use of MBIs. Ideal MBIs for this population may include mindful movement, mindfulness of the senses, mindfulness of breath, mindfulness of emotions, and the body scan. These approaches can easily be adapted according to the age of the child. Many approaches have been administered with minimal training, with very few requiring a facilitator. However, hospitals have started to incorporate mindfulness experts within their care provision. Conclusion: Future research should continue to investigate the use of MBI programs for children with cancer.

Technology-enabled collaborative care for youth with early psychosis: Results of a feasibility study to improve physical health behaviours.

AIM: Psychotic disorders are associated with excess morbidity and premature mortality. Contributing factors include tobacco smoking, low physical activity, and poor nutrition. This study tested a Technology-Enabled Collaborative Care model to improve health behaviours among youth with early psychosis. METHODS: A feasibility study among youth (ages 16-29) with early psychosis in Ontario, Canada. Participants were randomized to either a health coach supervised by a virtual care team (high intensity, n = 29), or self-directed learning (low intensity, n = 23) for 12 weeks. The primary outcome was participant engagement, defined as self-perceived benefit of changing health behaviours. Secondary outcomes were measures of health behaviours and programme-use metrics. RESULTS: Engagement was higher for high intensity participants for physical activity (adjusted group difference in change at 24 weeks = 3.4, CI95% = 1.9-4.9, p < .001) and nutrition (adjusted difference = 2.9, CI95% = 1.2-4.6, p = .001). No change was observed in health behaviours. Sixty two percent of participants completed 6 or more of the 12 weekly remote individualized health coaching sessions. Nine (39%) low intensity and 12 (41%) high intensity participants completed the final follow-up. CONCLUSIONS: Personalized health coaching for youth with psychosis is feasible and may have sustained benefits. However, retention with this population for 12 weeks is challenging.

Mindfulness in Pediatrics: Practices to Improve Clinician and Patient Mental Health and Enhance Well-Being.

Children and adolescents with symptoms of mental health disorders often present to primary care settings. In the context of the coronavirus disease 2019 pandemic, mental health symptoms in children, adolescents, families, and health care clinicians are rising. Mindfulness is an approach to improve both mental and physical health that can be practiced freely in any circumstance. Although not a panacea, research does support the use of mindfulness-based practices not only to improve overall well-being but also to address a variety of symptoms and diagnoses in numerous populations. This review defines mindfulness, describes the current state of the literature, outlines ways to support youth and families in cultivating and applying mindfulness in their daily lives, and provides guidance for health care clinicians on how to begin a personal practice to support their own health and well-being. [Pediatr Ann. 2021;50(2):e77-e83.].

Systematic Review: Psychosocial Correlates of Pain in Pediatric Inflammatory Bowel Disease.

BACKGROUND: Pain is a common symptom in pediatric inflammatory bowel disease (IBD) and is associated with poor health outcomes, yet additional knowledge about the psychosocial correlates of pain is needed to optimize clinical care. The purpose of this study is to systematically review the psychosocial factors associated with pain and pain impact in youth diagnosed with IBD within a developmentally informed framework. METHODS: Manual and electronic searches yielded 2641 references. Two authors conducted screening (98% agreement), and data extraction was performed in duplicate. Average study quality was rated using the National Institutes of Health Quality Assessment Tool. RESULTS: Ten studies (N = 763 patients; N = 563 Crohn disease, N = 200 ulcerative/ indeterminate colitis) met the inclusion criteria. Findings showed consistent evidence that higher levels of child depression symptoms and child pain catastrophizing were associated with significantly greater pain and pain impact (magnitude of association ranged from small to large across studies). Greater pain and pain impact were also associated with higher levels of child anxiety symptoms, child pain threat, child pain worry, and parent pain catastrophizing. Within the included studies, female sex and disease severity were both significantly associated with pain and pain impact. Study quality was moderate on average. CONCLUSIONS: There is evidence that child psychosocial factors are associated with pain and pain impact in pediatric IBD; more studies are needed to examine parent- and family-level psychosocial factors. Youth with IBD should be routinely screened for pain severity, pain impact, and psychosocial risk factors such as anxiety/depression.

Transdiagnostic feasibility trial of internet-based parenting intervention to reduce child behavioural difficulties associated with congenital and neonatal neurodevelopmental risk: introducing I-InTERACT-North.

OBJECTIVE: We examined feasibility and acceptability of an adapted telepsychological parent-child intervention to improve parenting skills and reduce emotional and behavioural difficulties in Canadian families of children at-risk for poor neurodevelopment given congenital or neonatal conditions. Preliminary program efficacy outcomes are also described. METHODS: Twenty-two families of children between the ages of 3-8 years with histories of neonatal stroke, hypoxic ischemic encephalopathy (HIE) and serious congenital and neonatal conditions [(congenital heart disease (CHD) or prematurity)] consented to participate in an adapted telepsychological parenting skills training program (I-InTERACT-North). The program helps parents develop positive parenting skills to improve parenting competence and child behaviour through 7 online psychoeducational modules completed independently and 7 videoconference sessions with a therapist. Videoconference sessions include live coaching to support application of skills. Feasibility (i.e., number of participants eligible, consented, refused), adherence (i.e., completion time, retention rates), acceptability (i.e., website experience questionnaire, therapist and parent semi-structured interviews), and preliminary efficacy (i.e., observational coding of parenting skill, self-reported parent competence, parent-reported child behaviour) data were collected. RESULTS: Nineteen of the 22 families (86%) enrolled completed the program in an average of 10 weeks (range: 6-17 weeks). Parents and therapists reported high overall satisfaction with the program (100%), including acceptability of both the online modules (95%) and the videoconference sessions (95%). Parenting confidence (d = 0.45), parenting skill (d = 0 .64), and child behaviour (d = 0.50) significantly improved over the course of the intervention. CONCLUSIONS: Findings provide preliminary evidence for the feasibility, acceptability, and efficacy of I-InTERACT-North for parents of children with neonatal brain injury.

Technology-enabled collaborative care for youth with early psychosis: A protocol for a feasibility study to improve physical health behaviours.

AIM: Individuals with psychotic disorders have poorer health outcomes and die earlier due to cardiovascular diseases when compared to healthy populations. Contributing factors include low levels of physical activity, poor nutrition and tobacco smoking. Currently, patients navigate a fragmented health-care system to seek physical and mental health services, often without access to evidence-based health promotion interventions, especially in non-academic settings or rural areas, increasing client barriers at the individual and provider level. To address these gaps, we wish to test the feasibility and impact of a Technology-Enabled Collaborative Care for Youth (TECC-Y) model to improve healthy behaviours among youth with early psychosis. The model addresses geographical barriers and maldistribution of physical and mental health care. METHODS: A randomized controlled trial, including youth (ages of 16-29) with early psychosis (diagnosed in the past 5 years) residing in Ontario, Canada. Our primary outcome is client engagement. Secondary outcomes include smoking status, physical health and nutrition. Participants are randomly assigned to either a health coach supervised by a virtual care team, or a self-directed learning group (e-platform with psychoeducational materials). Assessments are conducted at baseline, 6, 12 and 24 weeks. RESULTS: This paper presents the protocol of the study. Recruitment commenced in August 2018. This study was registered on 16 July 2018 on clinicaltrials.gov (Registry ID: NCT03610087). CONCLUSIONS: TECC-Y will determine if a technology-based collaborative care model engages youth with early psychosis, and whether this will be associated with changes in smoking, physical health and nutrition.

Headache Hygiene in Pediatrics: Brushing Up on the Basics.

Headache hygiene refers to self-management behaviors and practices aimed at reducing headache-related disability and improving self-efficacy. Although self-management interventions have an established place in the management of a wide range of chronic conditions, there is still not a standardized approach to this in pediatric headache. In this article, we focus on headache hygiene approaches including education, lifestyle interventions, and psychologic interventions. We also present our center's resource compilation, made available to patients by quick response code technology, as an example of a structured approach to headache hygiene. Further work should explore a standardized approach to headache hygiene and strategies to support adherence, including the use of technology as an innovative health care delivery pathway.

"I Learned to Let Go of My Pain". The Effects of Mindfulness Meditation on Adolescents with Chronic Pain: An Analysis of Participants' Treatment Experience.

Chronic pain can lead to significant negative outcomes across many areas of life. Recently, mindfulness-based interventions (MBIs) have been identified as potentially effective tools for improved pain management among adolescents living with pain. This study aimed to explore the experience of adolescents who participated in an eight-week mindfulness group adapted for adolescents with chronic pain (MBI-A), and obtain their feedback and suggestions on group structure and content. A mixed method design was used employing qualitative data from focus groups and data from a satisfaction questionnaire. Focus group data were transcribed and analyzed using inductive simple descriptive content analysis. Of the total participants (n = 21), 90% (n = 19) provided feedback by completing satisfaction questionnaires and seventeen (n = 17) of those also participated across two focus groups. Analysis of the focus group transcripts uncovered six themes: mindfulness skills, supportive environment, group exercises (likes and dislikes), empowerment, program expectations, and logistics. Participants reported positive experiences in the MBI-A program, including support received from peers and mindfulness skills, including present moment awareness, pain acceptance, and emotion regulation. Group members suggested increasing the number of sessions and being clearer at outset regarding a focus on reduction of emotional suffering rather than physical pain.

In-Person Versus eHealth Mindfulness-Based Intervention for Adolescents With Chronic Illness: Protocol for a Randomized Controlled Trial.

BACKGROUND: Eight-week mindfulness-based interventions (MBIs) have a beneficial impact on mental health and well-being in adolescents with chronic health conditions. Usually delivered in person in a group setting, these programs are difficult to access for teens with disabilities or who do not have in-person MBIs available in their communities. OBJECTIVE: This paper outlines the rationale, development, and design of a randomized controlled trial comparing the effects of an MBI delivered in person or via eHealth in adolescents with a chronic illness. Quantitative outcomes will include mindfulness skills acquisition (primary outcome), effects of the MBI on self-reported mood, anxiety, self-esteem, illness perception, and physiological stress (via salivary cortisol), and qualitative outcomes will include individual practice, participant appreciation, and adaptation of the MBI for eHealth. METHODS: This is a randomized noninferiority mixed methods study comparing 2 MBI arms: in-person and eHealth. Participants are eligible to participate if they are aged 13 to 18 years, have a diagnosis of chronic medical condition, live close enough to the recruitment hospital to participate in the in-person arm of the study, and are currently followed by a health care provider. Each participant will receive an adapted 8-week MBI delivered either in person at a tertiary pediatric hospital or via a secure audio-visual platform allowing group interactions in real time. Groups will be facilitated by 2 experienced mindfulness providers. Quantitative and qualitative data will be collected through standardized research questionnaires administered via a secure, youth-friendly online platform and through semistructured interviews, participant log books, facilitator log books, and salivary cortisol analysis. Qualitative data will be analyzed using a grounded theory model. RESULTS: Data collection is currently underway. Data analysis, manuscript writing, and additional publications are expected to be completed in the winter and spring of 2018. CONCLUSIONS: Based on previous results from in-person trials conducted in adolescents and eHealth trials conducted in adults, we anticipate that both modes of delivery will significantly improve mindfulness skills acquisition, mood, anxiety, self-esteem, illness perception, and stress and that the magnitude of the effects will be correlated to the level of home practice. We predict that participants in both arms will show similar levels of home practice and that both modes of delivery will have high levels of feasibility and acceptability. If successful, this study could provide evidence for the use of eHealth in the delivery of 8-week MBIs in clinical adolescent populations, potentially increasing availability to MBIs for a large group of youth with mobility issues or living away from large urban centers. TRIAL REGISTRATION: ClinicalTrials.org NCT03067207; https://clinicaltrials.gov/ct2/show/NCT03067207 (archived by WebCite at http://www.webcitation.org/6v4ZK8RBH).

A longitudinal analysis of the development of infant facial expressions in response to acute pain: immediate and regulatory expressions.

Facial expressions during infancy are important to examine, as infants do not have the language skills to describe their experiences. This is particularly vital in the context of pain, where infants depend solely on their caregivers for relief. The objective of the current study was to investigate the development of negative infant facial expressions in response to immunization pain over the first year of life. Infant facial expressions were examined longitudinally using a subsample of 100 infants that were each videotaped during their 2-, 4-, 6-, and 12-month routine immunization appointments. Infant facial expressions were coded using BabyFACS (facial action coding system) for the first minute after a painful needle prick. Facial expressions were examined with a catalogue of the most commonly occurring facial expressions. Results demonstrated that clear differences were seen over ages. Infants display a variety of facial expressions with some of the components of adult pain expressions immediately after the needle and they abate shortly after. However, infants did not display adult expressions of discrete negative emotions. Instead, infants displayed a variety of generalized pain and distress faces aimed at gaining caregiver aid. The development of nonverbal communication in infants, particularly facial expressions, remains an important area of inquiry. Further study into accurately measuring infant negative emotions, pain, and distress is warranted.