Lending an Ear: iPeer2Peer plus Teens Taking Charge online self-management to empower adolescents with arthritis in Ireland: protocol for a pilot randomised controlled trial

Introduction Juvenile idiopathic arthritis (JIA) negatively affects adolescents’ everyday activities. To address the need for innovative, effective, convenient, low-cost psychosocial self-management programmes, we developed an Irish version of Canadian Teens Taking Charge (TTC) and integrated it with Skype-based peer support iPeer2Peer (iP2P). Objectives To explore the feasibility and preliminary outcome impact (effectiveness) of an integrated iP2P and Irish TTC, via three-arm (treatment as usual, TTC and iP2P–TTC) pilot randomised controlled trial (RCT); and determine feasibility and sample size for a full RCT. To ensure active involvement of adolescents with JIA via a Young Person Advisory Panel and examine how participants experienced the study. Finally, to see if TTC and iP2P with TTC reduce costs for families. Methods and analysis Recruitment of 60 families will be ongoing until July 2019, via healthcare professionals and support groups. Analysis will consist of single-blinded (outcome assessment), three-arm pilot RCT, using online questionnaires, with assessments at baseline (T1), after intervention (T2) and 3 months post-intervention (T3). The primary outcomes on feasibility with comparisons of TTC and iP2P–TTC on fidelity, acceptability and satisfaction, engagement and degrees of tailoring. The secondary outcomes will be self-management and self-efficacy and a range of health-related quality-of-life factors, pain indicators and costs. Participants from the intervention groups will be invited to share their perspectives on the process in semistructured interviews. Quantitative data will be analysed using SPSS V.21 and the audio-taped and transcribed qualitative data will be analysed using qualitative content analysis. Dissemination Via journal articles, conference presentations, co-delivered by key stakeholders when possible, launch of accessible, effective and sustainable Internet self-management and peer support for Irish adolescents with JIA

A longitudinal analysis of the development of infant facial expressions in responses 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 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 abate shortly after. However, infants did not display adult expressions of discrete negative emotions. Instead, infants display a variety of generalized pain and distress faces aimed at gaining caregiver aid. The development of non-verbal communication in infants, particular facial expressions, remains an important area of inquiry. Further study into accurately measuring infant negative emotions, pain, and distress is warranted

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

Can the Mindful Awareness and Resilience Skills for Adolescents (MARS-A) Program Be Provided Online? Voices from the Youth

Mindfulness-based interventions (MBIs) have been shown to improve health and well-being in adolescents with chronic illnesses. Because they are most often delivered in person in a group setting, there are several barriers that limit access to MBIs for youth with limited mobility or who cannot access in-person MBIs in their communities. The objective of this study was to determine if eHealth is a viable platform to increase accessibility to MBIs for teens with chronic illnesses. This study reports the qualitative results of a mixed method randomized trial describing the experience of the Mindful Awareness and Resilience Skills for Adolescents (MARS-A) program, an eight-week MBI, delivered either in person or via eHealth. Participants were adolescents between the ages of 13 and 18 with a chronic illness recruited at a tertiary pediatric hospital in Toronto, Canada. Individual semi-structured post-participation audio-video interviews were conducted by a research assistant. A multiple-pass inductive process was used to review interview transcripts and interpret emergent themes from the participants’ lived experiences. Fifteen participants (8 online and 7 in person) completed post-participation interviews. Four distinct themes emerged from participants in both groups: Creation of a safe space, fostering peer support and connection, integration of mindfulness skills into daily life, and improved well-being through the application of mindfulness. Direct quotations representative of those four themes are reported. Results from this study suggest that eHealth delivery of an adapted MBI for adolescents with chronic illnesses may be an acceptable and feasible mode of delivery for MBIs in this population. EHealth should be considered in future studies of MBIs for adolescents with chronic illnesses as a promising avenue to increase access to MBIs for youth who might not be able to access in-person programs.Medicine, Faculty ofOther UBCNon UBCPediatrics, Department ofReviewedFacult

Sleep problems and associated factors in children with juvenile idiopathic arthritis: a systematic review

Abstract Background Sleep problems are common among children with chronic illnesses such as Juvenile Idiopathic Arthritis (or JIA). However, little is known about the frequency and severity of sleep disturbance(s) and the factors that are associated with sleep problems in children with JIA. The mechanism(s) of the relationships characterizing the development or exacerbation of sleep problems in children with JIA are still unknown, however studies have reported an association. The purpose of this study was to synthesize existing research related to sleep problems in children with JIA. Methods The Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) statement guided the conduct and reporting of this review. An experienced librarian conducted searches in MEDLINE, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials from inception to January 2012, to identify potentially relevant citations. Two members independently selected, rated methodological quality using the QUIPS tool, and extracted data from included studies. Results Ten studies were included and findings varied across studies; studies were mostly cross-sectional, or case-controlled designs, with only one cohort study available. Four studies found that children and adolescents diagnosed with JIA had significantly more sleep disturbances when compared to healthy controls. Pain was most often associated with sleep disturbances. The heterogeneous findings highlight the complex relationships between JIA and sleep, and low methodological quality of studies in the field. Conclusions This review supports an association between poor sleep and increased symptoms related to JIA, specifically the experience of pain. However, results need to be interpreted cautiously given the inconsistent findings regarding factors associated with sleep problems in JIA, the limited evidence available, and its low quality. Furthermore it is not yet determined if the poor sleep patterns predate the symptoms reported with JIA. More research is vital to understanding the factors that predict or perpetuate poor sleep in children and adolescents diagnosed with JIA

The iPeer2Peer Program: a pilot randomized controlled trial in adolescents with Juvenile Idiopathic Arthritis

Abstract Background Adolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for physical, emotional, social and role challenges that negatively impact quality of life. Peer mentoring has been shown to improve positive health behaviours in adolescents with chronic disease while simultaneously providing social support. The objectives of this paper are to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer Program) for adolescents with JIA. Methods The iPeer2Peer program was examined using a waitlist pilot randomized control trial (RCT). Participants were randomly allocated to the intervention or wait-list control group via a secure, web-based randomization service. Health care providers and investigators were blinded to participant group allocation. Trained peer mentors (16–25 years; successfully managing their JIA) were matched to participants (12–18 years; diagnosed with JIA) randomized to the intervention group to provide peer support and education for effective self-management of JIA. Participant-mentor pairings connected ten times over 8 weeks using Skype video calls. Primary outcomes focused on implementation (i.e. measures of feasibility and acceptability). Secondary outcomes focused on effectiveness (i.e. measures of self-management, self-efficacy, pain, social support and quality of life). Results Thirty adolescents (mean age 14.3 ± 1.7 years, 97 % female) completed the RCT (intervention n = 16, control n = 14). Primary outcomes: One third (32 %) of adolescents approached agreed to participate, completed baseline measures and were randomized. Half of pairings completed ten calls within 8 weeks. Average call length was twice the required amount with call lengths of 44.72 ± 15.76 min. Participants reported satisfaction with the program and all reported that they would recommend it to their peers. Participants’ mean engagement level with the program was 8.53/10 (range = 7–10). Secondary outcomes: Participants who completed the iPeer2Peer Program demonstrated improvements in their perceived ability to manage JIA (p < 0.04), compared to controls. No adverse events were reported. Conclusion The iPeer2Peer Program is a promising intervention that improves acceptability of self-management and peer support treatments for adolescents with JIA. By using the Internet to connect mentors to adolescents with JIA it may also improve accessibility to these resources. Findings will be used to adapt the program and refine the methodology for a full-scale RCT. Trial registration ClinicalTrials.gov Identifier: NCT01986400 . Registered November 11, 2013

Non-pharmacological management of infant and young child procedural pain: An abridged Cochrane review

BACKGROUND: Acute pain and distress during medical procedures are commonplace for young children. OBJECTIVE: To assess the efficacy of nonpharmacological interventions for acute procedural pain in children up to three years of age. METHODS: Study inclusion criteria were: participants <3 years of age, involved in a randomized controlled or crossover trial, and use of a ‘no-treatment’ control group (51 studies; n=3396). Additional studies meeting all criteria except for study design (eg, use of active control group) were qualitatively described (n=20). RESULTS: For every intervention, data were analyzed separately according to age group (preterm-born, term-born neonate and older infant/young child) and type of pain response (pain reactivity, immediate pain-related regulation). The largest standardized mean differences (SMD) for pain reactivity were as follows: sucking-related interventions (preterm: −0.42 [95% CI −0.68 to −0.15]; neonate −1.45 [CI −2.34 to −0.57]), kangaroo care (preterm −1.12 [95% CI −2.04 to −0.21]), and swaddling/facilitated tucking (preterm −0.97 [95% CI −1.63 to −0.31]). For immediate pain-related regulation, the largest SMDs were: sucking-related interventions (preterm −0.38 [95% CI −0.59 to −0.17]; neonate −0.90 [CI −1.54 to −0.25]), kangaroo care 0.77 (95% CI −1.50 to −0.03]), swaddling/facilitated tucking (preterm −0.75 [95% CI −1.14 to −0.36]), and rocking/holding (neonate −0.75 [95% CI −1.20 to −0.30]). The presence of significant heterogeneity limited confidence in nonsignificant findings for certain other analyses. CONCLUSIONS: Although a number of nonpharmacological treatments have sufficient evidence supporting their efficacy with preterm infants and healthy neonates, no treatments had sufficient evidence to support efficacy with healthy older infants/young children

Nonpharmacological Management of Procedural Pain in Infants and Young Children: An Abridged Cochrane Review

BACKGROUND: Acute pain and distress during medical procedures are commonplace for young children