Assessment of complementary health approaches use in pediatric oncology: Modification and preliminary validation of the "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires.

OBJECTIVE: Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized questionnaire could facilitate such clinical discussions. We aimed to adapt and determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) child and parent-report questionnaires in pediatric oncology. METHODS: An electronic Delphi survey that included children with cancer (8-18 years), parents, and HCPs and CHA researchers was conducted to reach consensus on the content of the WHAT questionnaires in pediatric oncology. Children and parents from the Hospital for Sick Children (SickKids), and HCPs and researchers from the International Society of Pediatric Oncology and Pediatric Complementary and Alternative Medicine Research and Education Network completed the survey. To determine the face and content validity of the questionnaires, two iterative cycles of individual interviews were conducted with purposive samples of children (8-18 years), parents, and HCPs from SickKids. RESULTS: Consensus was reached on all domains and items of the original WHAT questionnaires after one Delphi cycle (n = 61). For face and content validity testing, the first cycle of interviews (n = 19) revealed that the questionnaires were mostly comprehensive and relevant. However, the paper-based format of the original WHAT was not user-friendly, and generic items were vague and not aimed at facilitating clinical dialogues about CHA use. The WHAT questionnaires were then modified into electronic cancer-specific self- and proxy-report questionnaires including 13 and 15 items, respectively. The second cycle (n = 21) showed no need for further changes. CONCLUSIONS: The modified electronic cancer-specific WHAT questionnaires showed adequate face and content validity. The next step is to determine inter-rater reliability, construct validity, and feasibility of administration of the modified WHAT questionnaires in pediatric oncology.

Inter-Rater Reliability, Construct Validity, and Feasibility of the Modified "Which Health Approaches and Treatments Are You Using?" (WHAT) Questionnaires for Assessing the Use of Complementary Health Approaches in Pediatric Oncology.

BACKGROUND: This study aimed to test the inter-rater reliability, construct validity, and feasibility of the modified "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires in pediatric oncology; Methods: Parent-child dyads were invited to complete self- and proxy-report-modified WHAT, Pediatric Quality of Life Inventory, demographics, a diary of the child's recent use of CHA, and a questionnaire assessing the aspects of feasibility. Parents were asked to complete a satisfaction of their children's use of the CHA survey; Results: Twenty-four dyads completed the study. The mean weighted kappa showed strong inter-rater reliability (k = 0.77, SE = 0.056), and strong agreements between the modified WHAT and the diary (self-report [k = 0.806, SE = 0.046] and proxy-report [k = 0.894, SE = 0.057]). Significant relationships were found only between recent and non-recent CHA users in relation to the easy access to CHA (self-report [p = 0.02], proxy-report [p < 0.001]). The mean scores of the feasibility scale (out of 7.0) for the self- and proxy-report were 5.64 (SD = 0.23) and 5.81 (SD = 0.22), respectively, indicating the feasibility of the modified WHAT; Conclusions: The findings provide initial evidence of the reliability and validity of the modified WHAT and their feasibility. Further research is needed to test the theoretical relationships and further explore the validity and reliability of the modified WHAT.

Geopolitical Considerations for Working with Medically Complex Patients: A Case Illustration.

OBJECTIVE: Becoming culturally competent healthcare providers depends on the ability of practitioners to acquire knowledge, awareness, and skills related to other cultures. In building these areas of competence, it is essential to consider geopolitical factors that may influence health and health-seeking behaviors, particularly when working with immigrant populations. When care is sought, they are likely to experience significant barriers to effective care, including lack of providers who speak their language and failure of practitioners to integrate cultural beliefs into treatment plans. This is further complicated by the presence of geopolitical issues, including immigration status, war/conflict in the patient's country of origin, and/or human rights violations. METHOD: The current study uses a sample case of a Burmese-speaking, Myanmar national to illustrate a culturally informed approach to the assessment of neurobehavioral changes within complex geopolitical circumstances. The sample represents an amalgam of several patients, designed to represent common presentations, sociodemographic situations, and concerns that arise during the neuropsychological assessment process. RESULTS: Description of relevant case information including background, clinical observations, and performance on testing is provided. DISCUSSION: Awareness of the impact of these life experiences not only has the potential to deepen our understanding of our patients but also results in a more holistic, accurate, and culturally competent conceptualization of their physical and mental health needs.

Non-pharmacological pain interventions for sickle cell crisis in pediatrics: A scoping review.

PROBLEM: Sickle cell crises (SCC) are recurrent, severe pain episodes experienced by people living with sickle cell disease (SCD). Non-pharmacological interventions have been recommended for SCC pain management however, little is known about the impact of these interventions on SCC pain. This scoping review aims to systematically identify evidence on the use and effectiveness of non-pharmacological interventions for pain management during SCC in the pediatric population. ELIGIBILITY CRITERIA: Studies were eligible if they are published in English and focusing on the use of any non-pharmacological interventions on pain during SCC in pediatric patients. Nine databases were searched including Medline, CINAHL and PsychInfo. Also, the reference lists of relevant studies were searched. SAMPLE: The database searching yielded 1517 studies. After the title and abstract screening, 1348 studies were excluded, and 169 full texts were retrieved and screened. One study was identified through handsearching. Finally, 27 articles were included in this scoping review. RESULTS: Across all studies, 27 different non-pharmacological interventions were identified. There were inconsistent results regarding the effectiveness of virtual reality, guided imagery, and cognitive-behavioral interventions in experimental studies. The most common interventions used at home were prayer, massage, and distraction. The main interventions used in hospitals were prayer and fluid intake, but this was explored by a few studies. CONCLUSION: Pediatric SCD patients use numerous non-pharmacological interventions to manage pain during SCC. However, the impact of many interventions on SCC pain has not been empirically investigated. IMPLICATIONS: Further research is necessary to establish the effectiveness of non-pharmacological interventions on SCC pain.

Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts.

OBJECTIVE: Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1. DESIGN: We conducted a series of online, audio-recorded focus groups that were then thematically analysed. SETTING: Online focus groups with adults currently residing in the USA. PARTICIPANTS: Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups). RESULTS: Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another's experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals. CONCLUSIONS: Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users' specific needs.

Randomized clinical trial of Fibromyalgia Integrative Training (FIT teens) for adolescents with juvenile fibromyalgia - Study design and protocol.

OBJECTIVE: Juvenile-onset fibromyalgia (JFM) is a chronic debilitating pain condition that negatively impacts physical, social and academic functioning. Cognitive-behavioral therapy (CBT) is beneficial in reducing functional disability among adolescents with JFM but has only a modest impact on pain reduction and does not improve physical exercise participation. This randomized controlled trial (RCT) aims to test whether a novel intervention that combines CBT with specialized neuromuscular exercise training (the Fibromyalgia Integrative Training program for Teens "FIT Teens") is superior to CBT alone or a graded aerobic exercise (GAE) program. DESIGN/METHODS: This 3-arm multi-site RCT will examine the efficacy of the FIT Teens intervention in reducing functional disability (primary outcome) and pain intensity (secondary outcome), relative to CBT or GAE. All interventions are 8-weeks (16 sessions) in duration and are delivered in small groups of 4-6 adolescents with JFM. A total of 420 participants are anticipated to be enrolled across seven sites with approximately equal allocation to each treatment arm. Functional disability and average pain intensity in the past week will be assessed at baseline, post-treatment and at 3-, 6-, 9- and 12-month follow-up. The 3-month follow-up is the primary endpoint to evaluate treatment efficacy; longitudinal assessments will determine maintenance of treatment gains. Changes in coping, fear of movement, biomechanical changes and physical fitness will also be evaluated. CONCLUSIONS: This multi-site RCT is designed to evaluate whether the combined FIT Teens intervention will have significantly greater effects on disability and pain reduction than CBT or GAE alone for youth with JFM. Clinical trials.gov registration: NCT03268421.

Carbohydrate Counting App Using Image Recognition for Youth With Type 1 Diabetes: Pilot Randomized Control Trial.

BACKGROUND: Carbohydrate counting is an important component of diabetes management, but it is challenging, often performed inaccurately, and can be a barrier to optimal diabetes management. iSpy is a novel mobile app that leverages machine learning to allow food identification through images and that was designed to assist youth with type 1 diabetes in counting carbohydrates. OBJECTIVE: Our objective was to test the app's usability and potential impact on carbohydrate counting accuracy. METHODS: Iterative usability testing (3 cycles) was conducted involving a total of 16 individuals aged 8.5-17.0 years with type 1 diabetes. Participants were provided a mobile device and asked to complete tasks using iSpy app features while thinking aloud. Errors were noted, acceptability was assessed, and refinement and retesting were performed across cycles. Subsequently, iSpy was evaluated in a pilot randomized controlled trial with 22 iSpy users and 22 usual care controls aged 10-17 years. Primary outcome was change in carbohydrate counting ability over 3 months. Secondary outcomes included levels of engagement and acceptability. Change in HbA1c level was also assessed. RESULTS: Use of iSpy was associated with improved carbohydrate counting accuracy (total grams per meal, P=.008), reduced frequency of individual counting errors greater than 10 g (P=.047), and lower HbA1c levels (P=.03). Qualitative interviews and acceptability scale scores were positive. No major technical challenges were identified. Moreover, 43% (9/21) of iSpy participants were still engaged, with usage at least once every 2 weeks, at the end of the study. CONCLUSIONS: Our results provide evidence of efficacy and high acceptability of a novel carbohydrate counting app, supporting the advancement of digital health apps for diabetes care among youth with type 1 diabetes. Further testing is needed, but iSpy may be a useful adjunct to traditional diabetes management. TRIAL REGISTRATION: ClinicalTrials.gov NCT04354142; https://clinicaltrials.gov/ct2/show/NCT04354142.

Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map.

BACKGROUND: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. OBJECTIVE: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. METHODS: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8-18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. RESULTS: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. CONCLUSION: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.

Youths with juvenile idiopathic arthritis (JIA) often feel pain and try many pain treatments such as medications and physical or psychological treatments. Choosing treatments can be hard for families, and health care providers do not always provide information on pain treatments. Our team is developing the JIA Option Map, a tool that presents information on pain treatments based on personal preferences. The tool takes patients through a five-step process where they describe their pain, express their preferences, and learn about more than 30 pain treatments. Patients can then choose treatments and make a plan to use them. This paper explains how a paper-based version of the tool was developed and whether it is suitable for youths, parents, and health care providers. The tool was developed by holding meetings with youths with JIA, health care providers, and researchers to agree on the content and format. We also interviewed youths with JIA, parents, and health care providers to test whether it was suitable. All participants felt that the tool was suitable and that it would be useful for making decisions about pain treatments. Participants liked the idea of using a web-based tool with coaching by health care providers. Work is underway to develop this improved version of the JIA Option Map.

Questionnaires assessing the use of complementary health approaches in pediatrics and their measurement properties: A systematic review.

OBJECTIVES: To identify questionnaires assessing the use of complementary health approaches (CHA) in pediatrics, describe their content, and appraise the methodological quality of the studies and the measurement properties of the questionnaires. METHOD: Major electronic databases were searched from 2011 to 2020. Studies which aimed to assess the use of CHA and studies which reported developing and validating CHA questionnaires in pediatrics were included. Two reviewers independently screened the studies, extracted the data, and rated the methodological quality of the studies and measurement properties of the questionnaires using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. When consensus was not reached, a third reviewer was consulted. RESULTS: Thirty-eight studies were included. From these studies, 35 CHA questionnaires with a variety of different items were identified. Only two studies aimed to evaluate the measurement properties of two questionnaires. One questionnaire, available as a self- and proxy-report, was initially validated in children with juvenile idiopathic arthritis, and the other, available as an interviewer-administered questionnaire, was validated in children with cancer. According to the COSMIN, the methodological quality of both studies was inadequate or doubtful, and both questionnaires was not thoroughly validated. CONCLUSION: This systematic review showed a lack of a thoroughly validated CHA questionnaire in pediatrics. However, two questionnaires were found to hold promise. To address this gap, one of the existing questionnaires should be adapted and further validated.

A Smartphone App (mDASHNa-CC) to Support Healthy Diet and Hypertension Control for Chinese Canadian Seniors: Protocol for Design, Usability and Feasibility Testing.

BACKGROUND: This proposed study aims to translate the Dietary Approach to Stop Hypertension with Sodium (Na) Reduction for Chinese Canadians (DASHNa-CC), a classroom-based, antihypertensive, dietary educational intervention, to an innovative smartphone app (mDASHNa-CC). This study will enable Chinese Canadian seniors to access antihypertensive dietary interventions anytime, regardless of where they are. It is hypothesized that senior Chinese Canadians will be satisfied with their experiences using the mDASHNa-CC app and that the use of this app could lead to a decrease in their blood pressure and improvement in their health-related quality of life. OBJECTIVE: The goal of this study is to design and test the usability and feasibility of a smartphone-based dietary educational app to support a healthy diet and hypertension control for Chinese Canadian seniors. METHODS: A mixed-method two-phase design will be used. The study will be conducted in a Chinese immigrant community in Toronto, Ontario, Canada. Chinese Canadian seniors, who are at least 65 years old, self-identified as Chinese, living in Canada, and with elevated blood pressure, will be recruited. In Phase I, we will design and test the usability of the app using a user-centered approach. In Phase II, we will test the feasibility of the app, including implementation (primary outcomes of accrual and attrition rates, technical issues, acceptability of the app, and adherence to the intervention) and preliminary effectiveness (secondary outcomes of systolic and diastolic blood pressure, weight, waist circumference, health-related quality of life, and health service utilization), using a pilot, two-group, randomized controlled trial with a sample size of 60 participants in a Chinese Canadian community. RESULTS: The study is supported by the Startup Research Grant from Nipissing University, Canada. The research ethics application is under review by a university research ethics review board. CONCLUSIONS: The study results will make several contributions to the existing literature, including illustrating the rigorous design and testing of smartphone app technology for hypertension self-management in the community, exploring an approach to incorporating traditional medicine into chronic illness management in minority communities and promoting equal access to current technology among minority immigrant senior groups. TRIAL REGISTRATION: Clinicaltrials.gov NCT03988894; https://clinicaltrials.gov/ct2/show/NCT03988894. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/15545.

Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study.

BACKGROUND: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care. OBJECTIVE: Conduct a MT intervention to determine intervention acceptability and initial effects on ratings of pain, worry reduction, and quality of life. DESIGN: Pre-post single group pilot study. SETTING/SUBJECTS: Eight children with cancer (age 10-17) and one of their parents were recruited from a palliative care service. PROCEDURE/MEASUREMENTS: Baseline (one week prior to intervention): demographics, MT expectations, QOL, and pain measures. Intervention (one month): MT was provided once per week, with children's pain and worry ratings occurring immediately before and after each MT session. Follow Up (4-6 weeks after baseline): QOL, pain, and MT/study acceptability questionnaires. RESULTS: Participants reported significant decreases in pain following two MT sessions, and worry following one session. No significant changes in pain symptoms and QOL were found between baseline and follow up. Participants positively endorsed the study and the MT intervention, and there were no adverse effects reported. CONCLUSIONS: MT may lead to immediate decreases in pain and worry in children with cancer who are receiving palliative care, however the effects may not be sustained long term. Difficulties regarding protocol feasibility including recruitment and study compliance remain important considerations for future work.

"Don't sweat it buddy, it's OK": an exploration of the needs of adolescents with disabilities when designing a mobile application for weight management and healthy lifestyles.

Purpose: Adolescents with disabilities often demonstrate higher sedentary behaviours, lower physical activity levels, poorer quality diets, and higher rates of overweight and obesity than typically developing youth. This study had two objectives: 1) To understand the needs and priorities of adolescents with disabilities, parents, and the healthcare professionals who work with them around healthy lifestyles and weight management; and 2) To explore whether and how a mobile application could address these needs.Methods: Multiple perspectives were gathered through separate qualitative focus groups with adolescents with disabilities (12-17 years), parents, and rehabilitation healthcare professionals. Data were analysed using descriptive thematic analysis.Results: Parents (n = 6) and healthcare professionals (n = 9) described the complex needs of adolescents with disabilities around weight management and healthy lifestyles, including balancing differing priorities and a lack of appropriate resources. Adolescents (n = 7) endorsed the potential for technology to enhance their health through empowerment and having a virtual support system. All stakeholder groups endorsed taking a holistic, wellness approach.Conclusions: Adolescents with disabilities have a complex lifestyle and weight management needs, but mobile applications have the potential to provide individualized support. It is critical that anyone developing mobile applications engage a range of stakeholders as co-designers.Implications for rehabilitationAdolescents with disabilities have complex support needs and priorities around weight management and healthy lifestyles.Existing resources do not take into account the wide-ranging abilities of adolescents with disabilities.Mobile applications have the potential to empower adolescents and provide tailored support around healthy lifestyles.Including user input when designing technologies is critical.

Feasibility and Acceptability of a Mindfulness-Based Group Intervention for Adolescents with Inflammatory Bowel Disease.

The aim of the study is to explore the feasibility and initial outcomes of a mindfulness-based group intervention (MBI) for adolescents with inflammatory bowel disease (IBD). A mixed-methods uncontrolled study using an adapted 8-week group MBI for adolescents with IBD was conducted at a pediatric tertiary hospital. Primary outcomes focused on feasibility. Secondary outcomes focused on preliminary efficacy via quality of life, mindfulness, and symptoms of anxiety and depression. Of a total of 44 adolescents invited to participate, 16 adolescents completed the study. Group attendance and home meditation practice was satisfactory. There were significant differences in emotional functioning relative to IBD following MBI-A participation. Qualitative analysis rendered two themes: (1) personal interpretation and application of mindfulness and (2) the benefits of IBD-specific peer support. Several key adaptations are needed to increase feasibility of group MBIs prior to randomized controlled trials. Findings can be generalized to inform group-based therapies for adolescents with IBD.

Pain and quality of life in youth with inflammatory bowel disease: the role of parent and youth perspectives on family functioning.

INTRODUCTION: Daily pain experiences are a common feature of pediatric inflammatory bowel disease (IBD), which can negatively influence their health-related quality of life (HRQOL). A holistic, family systems approach is needed to further our understanding of daily pain experiences in youth with IBD and their influence on youth's HRQOL. OBJECTIVES: The study's objectives were to (1) provide a detailed description of daily pain experiences in youth with IBD, (2) investigate the relative contribution of family functioning and pain in explaining youth's HRQOL, and (3) explore differences in parental and youth perspectives. METHODS: Sixty youth with IBD (8-17 years) and a parent completed questionnaires to assess family functioning, HRQOL, and pain experiences within the past week. A subsample of 16 youth completed an online diary (7 days) about their pain experiences. RESULTS: When including any pain experiences, higher youth-reported family satisfaction and lower pain intensity were related to better HRQOL, whereas higher parent-reported family cohesion and satisfaction indirectly related to youth HRQOL through lower pain intensity. When only accounting for abdominal pain, pain intensity related negatively with HRQOL, and only parent-reported cohesion showed an indirect relation with HRQOL through pain intensity. Diary data revealed large heterogeneity: abdominal pain, described as cramping, sharp, and/or stinging was most frequent, but other pain symptoms (eg, back pain and headache) often co-occurred. CONCLUSION: The findings provide a rich picture of the daily pain experiences of youth with IBD and underscore the importance of a family systems approach to understand how family functioning and pain symptoms influence HRQOL.

"WE do it together!" An Ethnographic Study of the Alliance Between Child and Hospital Clown During Venipunctures.

PURPOSE: Hospital clowns are widely used as a means of non-pharmacological intervention in the treatment of hospitalized children. However, little research has examined the impact of clowns on common painful needle-related procedures. This study explored children's pain experience and their ability to cope during a venipuncture while interacting with a clown in the acute admission unit. DESIGN AND METHODS: An ethnographic fieldwork study was conducted. Data were collected over a 10-month period through participant observation and informal interviews, supplemented by video recordings. The participants comprised 38 acutely admitted children aged 4 to 15 years undergoing a venipuncture in the presence of a hospital clown. Analysis was structured in three stages: before venipuncture; during venipuncture; and after venipuncture. RESULTS: The development of a responsive interaction between child and clown, identified as a WE, was found to be beneficial to the child during venipuncture procedure. The WE was characterized by three themes "How do WE do this together?"; "WE are together"; and "I/WE did it!" CONCLUSIONS: The study emphasizes the importance of a WE established between child and hospital clown from the first encounter until a final evaluation. This WE was verbalized repeatedly by the clown and the child and was essential in shaping a tailored approach which met the needs of each child. This approach seemed to strengthen the child's competence in pain management and ability to cope, thus building competence for future venipunctures. PRACTICE IMPLICATIONS: Establishing a WE might advance the psychosocial care of hospitalized children undergoing acute painful procedures.

iCanCope with Sickle Cell Pain: Design of a randomized controlled trial of a smartphone and web-based pain self-management program for youth with sickle cell disease.

Many adolescents with sickle cell disease (SCD) experience recurrent and chronic pain, which has a negative impact on their health-related quality of life (HRQL). Cognitive-behavioral therapy (CBT) interventions can lead to improvement in pain and HRQL, yet due to barriers to care, most youth with SCD will not receive these interventions. To address this need for innovative programs targeting youth with SCD pain, we developed iCanCope, a tailored smartphone and web-based program that delivers a pain self-management intervention to youth with SCD. We describe the rationale, design, and implementation of a three-site parallel group randomized controlled trial with a sample of 160 adolescents with SCD and their parent caregivers. The iCanCope program includes pain self-management skills training (personalized CBT-based coping skills such as deep breathing, relaxation, and cognitive skills), goal setting, and social support. The attention control group is provided with access to a self-guided website with education about SCD. Assessments will occur at baseline (T1), immediately after completion of the intervention (12 weeks; T2) and at 6 months post-intervention (T3). Primary outcomes include coping strategies and pain intensity; secondary outcomes include physical, social, and emotional functioning, treatment satisfaction, health service use and caregiver response to youth pain behavior. Potential mediators (goal setting, self-management, and perceptions of social support) and moderators (e.g., demographic factors) will also be tested. The objective is to offer an effective, convenient, and low-cost psychosocial intervention to youth with SCD to enhance their self-management of pain.

Changes in Parent Psychological Flexibility after a One-Time Mindfulness-Based Intervention for Parents of Adolescents with Persistent Pain Conditions.

Parenting a child with chronic pain can be stressful and impact parent functioning in a variety of areas. Several studies have examined mindfulness-based interventions (MBIs) for parents of children with different health and mental health conditions. However, no studies to date have examined MBIs for parents of children with pain conditions. This study aimed to: (1) determine the feasibility and acceptability of a one-time MBI workshop for parents (n = 34) of adolescents with painful conditions (chronic pain and inflammatory bowel disease) who were participating in a concurrent mindfulness group for adolescents with pain, and (2) examine changes in parent mindfulness and psychological flexibility following the intervention. A mixed-method design was used. In terms of feasibility and acceptability, high recruitment and retention rates were observed, and parents reported high satisfaction scores with the workshop. Changes pre to post intervention showed that dimensions of parent psychological flexibility, but not parent mindfulness, improved following participation in the workshop. Qualitative analyses based on parent responses on a questionnaire uncovered seven themes of parent "takeaways" following participation in the workshop: Mindfulness Skills, Not Alone, Psychological Flexibility, Parent⁻Child Interactions, Self-Efficacy, Optimism/Positivity/Hope, and Awareness of Values. Taken together, these findings suggest that a one-time MBI workshop offered to parents whose teen was participating in a concurrent mindfulness group for pain is a feasible and promising intervention for parents of children with pain conditions.

"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.

The Power of a Parent's Touch: Evaluation of Reach and Impact of a Targeted Evidence-Based YouTube Video.

Despite strong evidence that skin-to-skin contact and breast-feeding are effective pain-relieving interventions for infants undergoing painful procedures, they remain underutilized in clinical practice. Given the important contribution of parents, there is a need to find innovative ways to assist parents to become actively involved in their infant's care. We developed a YouTube video to disseminate evidence-based information on the effectiveness of skin-to-skin contact and breast-feeding for infant pain management. The 2-minute 39-second video launched on December 2, 2014, and was promoted through Web-based and in-person communication and YouTube advertisements. Data were collected using YouTube analytics and an online survey. Post-18 months from its launch, the video had a reach of 157 938 views from 154 countries, with most viewers watching an average of 73% of the video (1 minute 56 seconds). Parents (n = 32) and healthcare providers (n = 170) completed the survey. Overall, both reported that they liked the video, found it helpful, felt more confident, and were more likely to use skin-to-skin contact (16% and 12%) and breast-feeding (3% and 11%), respectively, during future painful procedures. Despite the high-viewing patterns, alternative methods should be considered to better evaluate the impact on practice change.

A Mindfulness Program Adapted for Adolescents With Chronic Pain: Feasibility, Acceptability, and Initial Outcomes.

OBJECTIVES: Pediatric chronic pain is a major health issue that can lead to significant interference in daily functioning. Mindfulness-based interventions (MBI's), which emphasize acceptance rather than control of pain, have gained increasing attention as a viable treatment option among adults with chronic pain. The effectiveness of MBIs for chronic pain in pediatric populations remains largely unknown. This prospective pre-post interventional study was conducted to examine the feasibility, acceptability, and initial effectiveness of an 8-week group MBI adapted for adolescents (MBI-A) with chronic pain. MATERIALS AND METHODS: Self-report measures assessing pain characteristics, anxiety, depression, disability, pain catastrophizing, perceived social support, mindfulness, and pain acceptance were administered at baseline, postintervention, and at a 3-month follow-up. In addition, session data were collected to assess each session's impact on patients' coping with pain and stress, body awareness, and sense of feeling less alone. RESULTS: In total, 42 consecutive patients in a tertiary care chronic pain clinic met eligibility criteria to participate in the MBI-A group. Of these, 21 participated. A treatment completion rate of 90.5% was observed. Between session mindfulness practice was reported by 77% of participants. Participants were highly satisfied with the MBI-A and all participants reported they would recommend the group to a friend. Improvements in pain acceptance were observed between baseline and the 3-month follow-up, in domains of Pain Willingness and Activity Engagement. Session data revealed improved body awareness and improved ability to cope with stress across sessions. DISCUSSION: The MBI-A is a feasible, well-received intervention for adolescents with chronic pain conditions. Findings support the need for further investigation of the efficacy of MBI-A through randomized-controlled trials.