Perceptions of Adolescents With Chronic Pain About Peer Support: Reflexive Thematic Analysis.

OBJECTIVE: Social challenges are a common experience for adolescents with chronic pain. Group peer support for these adolescents could be a promising intervention; however, no studies have focused exclusively on the peer support needs of this population. The present study addressed this gap in the literature. METHODS: Adolescents with chronic pain between 12 and 17 years of age completed a virtual interview and demographics questionnaire. Interviews were analyzed using inductive reflexive thematic analysis. RESULTS: Fourteen adolescents (Mage: 15.21 years; 9 females; 3 males, 1 nonbinary, 1 gender questioning) with chronic pain participated. Three themes were generated: "Being Misunderstood," "They Would Understand Me," and "Moving Forward Together in Our Pain Journeys." Adolescents with chronic pain feel misunderstood and under supported by their peers without pain leading to feeling "othered" by having to explain their pain, yet not feeling free to talk about their pain with friends. Adolescents with chronic pain expressed that peer support would provide the forms of social support they are missing amongst their friends without pain as well as companionship and a sense of belonging due to shared knowledge and experiences. CONCLUSIONS: Adolescents with chronic pain desire peer support from others like themselves, highlighting the challenges in their everyday friendships as the impetus for this support, as well as their anticipated short- and long-term benefits, including learning from their peers and developing new friendships. Findings indicate that adolescents with chronic pain may benefit from group peer support. Findings will inform the development of a peer support intervention for this population.

Friend or Foe? A Thematic Analysis of Adult Friendships and Chronic Pain Adjustment.

BACKGROUND: Chronic pain is a worldwide public health challenge. Despite chronic pain having biopsychosocial dimensions, its social contexts are less investigated. Although current evidence shows that chronic pain shapes and is shaped by interactions with romantic partners, research about friendships and chronic pain is scarce, and mostly focused on adolescents. AIM: Drawing upon theories on friendship and social support, this study aimed to investigate the role of adult friendships on chronic pain adjustment and, the effect of chronic pain on adult friendships. METHODS: This study drew upon a qualitative descriptive methodology. Sixteen adults with primary or secondary (non-cancer) chronic pain participated in individual semi-structured interviews, conducted using voice over internet protocol applications. Data analysis was guided by Clarke and Brown's guidelines for thematic analysis. RESULTS: The analysis of participants' (87.5% women; Mage = 43 years) stories revealed two themes. The first captured how friends promote/hinder adjustment to chronic pain by being: (1) (un)available and providing (un)needed support; and (2) (not)accepting and (not)accommodating to support life engagement. The second captured the negative effect of chronic pain on both parties' attitudes and behaviors towards the relationship, leading to smaller and more homogeneous friendship networks. CONCLUSIONS: This study stresses the relevance of including adult friends in interventions to reduce the negative effect of chronic pain on friendships, harnessing their power to promote chronic pain adjustment. The findings bring new insights on a topic that has rarely been investigated in the pain field, hence pointing out innovative directions for future research and practice.

Partnering with Youth and Parents for the Greatest Impact of Top Patient-Oriented Priorities in Pediatric Chronic Pain Research, Care and Policy.

Our original patient-oriented research project identified the top 10 priorities for pediatric chronic pain research and care in Canada from the perspective of people with lived experience (patients), their family members and healthcare professionals through a modified James Lind Alliance Priority Setting Partnership. We undertook subsequent knowledge translation activities with youth, families, healthcare professionals, decision makers and researchers to (1) generate awareness and interest in the top 10 priorities and our partnership process, (2) facilitate collaborative dialogue and open innovation and (3) integrate and adopt the top 10 priorities into stakeholder activities. This paper describes our knowledge translation activities, outcomes and impact.

Romantic Relationships in Young People with Long-Term Health Conditions: A Scoping Review.

OBJECTIVE: Forming and maintaining romantic relationships is an important developmental task in adolescence and young adulthood. This scoping review seeks to explore how young people with long-term physical health conditions understand and experience romantic relationships. METHODS: Using Arksey and O'Malley's scoping review framework, a systematic search of five databases was conducted (PsychINFO, Cinahl, MEDLINE, Embase, and Web of Science). Studies were eligible for inclusion in the review if they were published in peer-reviewed journals, used primary data collection methods, and adopted quantitative, qualitative, or mixed-methods approaches to study romantic relationships in 11-25 year olds with long-term physical health conditions. Using a data extraction form, data pertaining to demographic characteristics of young people with long-term physical health conditions and relationship engagement were extracted from eligible papers. RESULTS: Searches returned 4645 papers after duplicate removal, with a two-stage screening process resulting in 111 full-text papers being reviewed. Thirty-three eligible papers were included across a range of long-term physical health conditions. Findings identified that living with a long-term physical health condition impacted young people's perceptions and experiences of romantic relationships across the relationship lifespan, from envisaging future relationships, to forming relationships, and sustaining relationships. Issues around body confidence and self-esteem were identified as challenging in terms of perceptions and experiences of romantic relationships. CONCLUSIONS: Findings demonstrate that young people wish to engage with romantic relationships, yet many report particular challenges associated with forming and sustaining relationships due to the constraints of their condition and treatment. Future research should consider nonheterosexual relationships.

Adolescent Patients' Management of Postoperative Pain after Discharge: A Qualitative Study.

BACKGROUND: Adolescents are typically admitted for a short period of time after inpatient surgery, leaving much of their recovery to occur at home. Pain, and thus pain management, is a major component of recovery at home. Research among pediatric outpatient surgical patients has found that pain experienced in the community setting after discharge is often severe and is related to knowledge deficits resulting in inadequate pain management. However, there is little research on community pain management after inpatient surgery. AIM: This study aimed to explore the pain experiences of seven adolescents who underwent inpatient surgery. DESIGN: This study used Interpretative Phenomenological Analysis as a methodology. SETTING: This study took place at a pediatric tertiary care hospital in Canada. PARTICIPANTS: 7 adolescents participated, all of whom underwent inpatient surgery with admission between 2-14 days in length. METHODS: Semi-structured interviews were conducted 2 to 6 weeks post-discharge. RESULTS: Three themes were identified that described their experiences, including managing severe pain at home with minimal preparation, changes in the parent-child relationship, and difficulties returning to school and regular activities. CONCLUSIONS: Involving adolescents directly in discharge education, particularly with the use of novel interventions and coaching, may improve outcomes. KEY PRACTICE POINTS: Adolescent patients experience significant pain after discharge from hospital after inpatient surgical procedures. Adolescents are in need of adolescent-specific pain management education to increase skill and knowledge and address pain management-related misconceptions. Greater emphasis on involving adolescents in their own pain care and novel intervention could prove useful in improving outcomes.

Pain Management Practice and Guidelines in Jordanian Pediatric Intensive Care Units.

Limited knowledge exists of current pain management practices and supporting guidelines in Jordanian pediatric intensive care units. To determine the current pain management practices and the availability and content of practice guidelines in Jordanian pediatric intensive care units, we conducted a cross-sectional and multisite survey of four pediatric intensive care units in Jordan. A questionnaire was developed and orally administered over the phone or in person to head nurses or their nominees to capture pain management practices and the existence and content of guidelines. All units had written pain management guidelines that included pain assessment, documentation, and management. All four units used one or more pain assessment tools. In three units, pain management was considered multidisciplinary and routinely discussed on unit rounds. In two units, continuous infusion of intravenous opioids was used as well as sedatives and neuromuscular blockers for most ventilated patients. In the two other units, continuous intravenous infusion of opioids was not used and only sedatives were administered for patients on mechanical ventilation. In two units, there were no specific guidelines on the use of nonopioid analgesics, patient-controlled anesthesia, or the management of postoperative pain. No unit used an opioid or sedative withdrawal assessment tool or had pain management guidelines on the use of topical anesthetic agents or sucrose. Pain management practices and guidelines varied across the four units, suggesting that there is an opportunity for improvement in pain management in pediatric intensive care units in Jordan.

The Influence of Context on Utilizing Research Evidence for Pain Management in Jordanian Pediatric Intensive Care Units (PICU).

PURPOSE: The purpose of this study was to gain a beginning understanding of the contextual factors that influence the use of research for pain management in Jordanian Pediatric Intensive Care Units (PICUs). DESIGN AND METHODS: A paper or online questionnaire was used to collect data on instrumental research use (IRU) and conceptual research use (CRU) and ten contextual variables from 73 registered nurses working in four Jordanian PICUs. The Pearson product-moment correlation coefficient was used to test the relationship between continuous (demographic and contextual) factors and IRU and CRU. One way ANOVA and independent t-test were used to examine the differences between sociodemographic variables and IRU and CRU. Generalized Estimating Equations (GEE) was used to determine the demographic and contextual factors that influenced research use. We modeled the significant variables identified by bivariate correlation, t-test, and ANOVA at (p≤0.10). RESULTS: Nine of the contextual factors significantly and positively correlated with the IRU for pain assessment, eight with the IRU for pain treatment, and six with the CRU for pain management (including assessment and treatment). Hospital type (public) predicted the IRU for pain assessment. Social capital, structural, and electronic resources predicted the IRU for pain treatment. Social capital predicted the CRU for pain management. CONCLUSION: Context influences Jordanian PICU nurses' use of research for pain management. PRACTICE IMPLICATIONS: Concentrating on modifiable contextual factors may positively influence Jordanian PICU nurses' use of research for pain management. This influence may extend to reduce children's pain in Jordanian PICUs.

Exploration of nurses' pediatric pain management experiences in rural hospitals: A qualitative descriptive study.

BACKGROUND: Hospitalized children continue to experience inadequate pain management. Children in the rural hospital setting may be at risk due to unique challenges experienced by Registered Nurses (RNs) in this context. OBJECTIVES: To understand the experience of pain care from RNs who work in rural hospitals with inpatient pediatric patients. DESIGN: Qualitative description that used semi-structured interviews to explore RNs' inpatient pediatric pain care experiences. PARTICIPANTS: RNs who: 1) worked directly with pediatric in-patients; 2) spoke English; 3) and who worked in rural Northern Ontario. Hospital sites were selected based on population density, from one province in Canada. To reduce heterogeneity, only sites with dedicated pediatric beds were eligible (n = 9). METHODS: This qualitative descriptive study used semi-structured interviews over Skype and telephone. Data were analyzed using inductive content analysis. RESULTS: Ten participants were recruited from seven sites. Five main categories were identified, with one category that influenced all other categories. Rural RNs needed to practice as generalists as they care for many types of patients. Resource challenges included a lack of specialist expertise and educational opportunities. Pediatric pain was not perceived as a priority within their organizations. Most participants perceived there were no explicit standards for pain care. Moving forward the adoption of built in assessments in electronic documentation was suggested as a solution to standard pain care. CONCLUSIONS: Opportunity exists to improve pediatric pain management, however, without a systematic approach that considers the rural context, pain care for children will continue to be based on individual's beliefs and knowledge.

Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic Illness.

Objective: To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. Methods: A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program for adolescents with chronic illness. Interviews and focus group data were transcribed and analyzed using inductive content analysis. Results: Ten peer mentors (20.00 ± 1.49 years old, range 17-22 years; diagnosed with chronic pain [n = 4] or juvenile idiopathic arthritis [n = 6]) who mentored four mentees (±2.55 mentees, range = 1-10 mentees) participated. Four main categories were identified: social connection, personal growth, mentor role in mentee growth, and logistics of mentorship. Conclusions: Acting as a peer mentor online is a feasible and rewarding experience that supports the mentor's own illness self-management, social connection, and personal growth.

Departure from Pediatric Care: Transitioning of Adolescents with Chronic Pain to Adult Care.

Little is known about specific factors related to chronic pain that need to be considered to support successful transition from pediatric to adult health care settings. This is troubling because 1 in 5 adolescents may experience chronic pain and many will continue to live with pain into adulthood. This paper reviews what is known about successful transition processes for adolescents with various chronic conditions and the unique factors associated with chronic pain and includes a call for further research on transition. Transitioning from the pediatric to the adult health care setting is challenging for adolescents with chronic conditions and their families. Loss to follow-up and negative health outcomes are linked to poor transition processes. Despite studies examining factors associated with successful transition, not all of the findings are transferable to adolescents with chronic pain. We need to support adolescents, young adults, and their parents as they prepare for transition, engage pediatric and adult care providers in care, advocate for system change, and systematically examine the processes that support the successful health care transition of adolescents and young people with chronic pain.

To Befriend or Not: Naturally Developing Friendships Amongst a Clinical Group of Adolescents with Chronic Pain.

Adolescents with chronic pain frequently perceive a lack of support from friends. Support from a peer with a shared experience has been found to provide emotional, informational, and appraisal support. We sought to quantify the frequency with which adolescents with chronic pain want to befriend other adolescents with chronic pain, and to describe the features of these friendships. Adolescents with chronic pain who had attended a 10-week structured self-management program from 3 sites were invited to complete an online survey. Forty teens participated, 95% (n = 38) were girls; 32% (n = 13) befriended another; 52% (n = 21) were interested in befriending another but did not; 15% (n = 6) were not interested in befriending anyone. Over half (62%) of the friendships lasted at least 1 year (n = 8), but only 2 intermingled these with their regular friendships. Pain was discussed frequently during interactions. The most common reasons for not forming friendships were no time to exchange contact information during group and not having things in common. Reasons for not being interested in forming a friendship also included not having anything in common apart from pain. The majority of participants were interested in befriending another. Emotional support, by feeling understood and discussing pain without fear that the other is disinterested, was the main peer support provided. Without common interests, this form of friendship may not last and is at risk for being overly solicitous by focusing on pain. It remains unclear whether the benefits of peer support translate into improved function.

Roadmap to the 'Chronic Pain GPS for Adolescents' Intervention: Content and Design Considerations for a Group Peer Support Intervention.

OBJECTIVES: A biopsychosocial approach to understanding and treating pain is crucial; however, there are limited socially targeted interventions for adolescents with chronic pain (ACP). Peer support interventions implemented with other populations are associated with positive outcomes. ACPs perceive peer support to have high potential value. This study explored the preferences of ACP regarding the content and design of a group peer support intervention. METHODS: Fourteen ACP (M age : 15.21 y; 9 females; 3 males, 1 nonbinary, and 1 gender questioning) completed a virtual interview and survey. Interviews were analyzed using inductive qualitative content analysis, and surveys were analyzed using descriptive statistics. RESULTS: Adolescents described how they want to both talk and do activities together within a fun and casual environment with a facilitator present-ideally, someone with lived experience of chronic pain. Preferences were for a medium-sized group intervention that was in-person, at a consistent time on a weekday after school, and semi-structured. Barriers to attending and engaging in the potential group peer intervention were also discussed. DISCUSSION: ACPs desire a facilitated socially focused intervention that provides them with the opportunity to spend time with other ACPs. A group peer support environment where ACPs can provide and receive peer support through sharing their experiences with others who understand them as well as engage in activities was described. The findings from this study provide insights for the development of a group peer support intervention.

A shared love: reciprocity and hopefulness in romantic relationships of young adults with chronic pain.

Introduction: Chronic pain (≥3 months) creates pain-related challenges that may negatively affect how young adults perceive themselves, and, indeed, they often report feeling different compared to peers and prospective romantic partners. Most studies of romantic relationships in young adults living with a long-term condition (including pain), do not consider the perspective of their partner. We present the findings of a qualitative, exploratory interview study (Phase 2 of a mixed methods study). This qualitative phase aimed to explore how young adults with chronic pain and their partners navigate romantic relationships. We focused on how young adults perceive and experience their romantic relationships and the impact, challenges, and benefits associated with living with chronic pain. Methods: This study used remote (videoconferencing) photo-elicitation interviews with a convenience sample of young adults with chronic pain (aged 18-25 years, UK and Canada) and their partners. Recruitment occurred via social media, pain-related websites and organizations, and professional networks. Five young adults with chronic pain from the UK and Canada formed the e-Advisory Group and provided detailed advice throughout the study. Data analysis used the principles of inductive reflexive thematic analysis to explore the dimensions and meaning of romantic relationships from the views of young adults with chronic pain and their romantic partners. Findings: Sixteen young adults participated (seven couples plus two young adults with pain who were interviewed without their partner). The young adults with chronic pain were ages 18-24 years (mean 21.88 years, SD 2.23). Four major interpretive themes were generated: Kindred spirits-we just sort of work; Loving in everyday acts-it's not above and beyond, it's concerned supportiveness; It's OK to be vulnerable with each other-we can talk it through; and You can't see over the horizon-hopes and fears for the future. Discussion: Hopefulness and reciprocity were key to the stories shared by the young adults in the current study. Despite the challenges and limitations imposed by chronic pain, their relationships were characterized by partnership and reciprocity, and they were able to be vulnerable with each other and offer each other support.

My child you must have patience and Kreng Jai: Thai parents and child pain.

PURPOSE: To elicit the experiences of parents in providing care for their hospitalized child's acute pain needs. DESIGN: Phenomenology, using in-depth interviews with 45 parents whose children were being cared for in five hospitals in Northeastern (Isan) Thailand. FINDINGS: The findings address Thai cultural beliefs regarding the experience of pain and the role societal expectations have on parental behavior in trying to meet their child's acute pain needs. Two themes emerged-"Understanding my child's pain: it's karma" and "Maintaining Kreng Jai"-which identify parent beliefs toward pain and pain treatment, as well as perceived barriers in securing pain management for their children. Together these two themes describe the essence of this study as parents experienced an "inner struggle in providing pain care." Pain was perceived as an inescapable part of life, and participants identified a preference for traditional remedies. Parents experienced a tension as they wanted to provide and secure pain care for their child but at the same time were reticent to approach staff with concerns about their child's care. CONCLUSIONS: Thai parents viewed pain as a normal consequence of life, and one had to use traditional remedies in addition to medicine to successfully treat pain. Societal behavioral expectations required children to have patience. Nevertheless, parents wanted professionals to show more empathy and provide more effective pain care. CLINICAL RELEVANCE: Improvements in pediatric pain care must formally include parents. Culturally sensitive approaches that do not stereotype parents and children are needed to ensure that evidence-informed pain care is available for all children.

Social integration of adolescents with chronic pain: a social network analysis.

ABSTRACT: Adolescents with chronic pain (ACP) often experience impairments in their social functioning. Little is known about the consequences of these impairments on peer relationships of ACP. This study applied social network analysis to examine whether adolescents with more pain problems are less popular (RQ1), adolescents with similar pain problems name each other more often as being part of the same peer group (RQ2), dyads with an adolescent experiencing more pain problems report less positive (eg, support) and more negative (eg, conflict) friendship qualities (RQ3), and positive and negative friendship qualities moderate the relationship between pain and emotional distress (RQ4). This study used data from the first wave of a longitudinal study (N = 2767) which followed up Swedish adolescents from 19 public schools. For RQ1-3, Multiple Regression Quadratic Assignment Procedure was applied. For RQ4, standard multilevel models with observations of adolescents nested within schools were estimated. Results showed that ACP were not less popular than adolescents without chronic pain. Second, ACP nominated each other more often as being part of the same peer group. Third, results regarding friendship quality showed that adolescents with more pain problems perceived the relationship with their friends as less positive (eg, support) and more negative (eg, conflict) than adolescents with less pain problems. Finally, positive and negative friendship qualities moderated the relationship between pain and emotional distress. This study contributes to the literature on the importance of peer relationships of ACP. Clinical implications and directions for future research are discussed.

Dyadic analysis of adolescent friendships behaviours during pain: Comparison of those with chronic pain versus those without chronic pain.

BACKGROUND: Social context has been found to influence pain intensity and tolerance. The aims of this study were to determine the impact of one type of social context on the painful experiences of adolescents with and without chronic pain by examining interactions within and across friendship dyads during experimental pain. METHODS: Each adolescent in 61 same-sex friendship dyads (30 dyads with a chronic pain member) across three sites participated in the cold pressor task and acted as the observer during their friend's participation. They also completed a battery of measures to capture friendship features and pain outcomes. Pain intensity was measured using an 11-point numeric scale. Pain tolerance was measured by the length of time in the cold pressor device. Videotapes of their interactions were coded for verbal and non-verbal behaviours. A series of Actor Partner Independence Modelling, Hierarchical Multiple Regression and Multivariate Analysis of Covariance was used to analyse the data. RESULTS: Friendship features were not associated with pain intensity or tolerance. Both members of dyads with a chronic pain member used fewer non-attending behaviours when they were observing their friend resulting in participants in those dyads having lower pain tolerance. Moreover, within dyads, one's friend's behaviours when experiencing pain influenced pain tolerance but only for those dyads with a chronic pain member. CONCLUSIONS: Strategies aimed at improving social interactions for adolescents with chronic pain while they are experiencing pain are discussed. Research is needed to understand how different peer relationships influence pain tolerance in adolescents with chronic pain. SIGNIFICANCE OF THE RESEARCH: During pain, patterns of interactions differ within and between adolescent friendship dyads when one has chronic pain (CP) versus controls. Dyads with a CP member use fewer non-attending behaviours despite non-attending behaviours rated as more helpful. Pain intensity was solely related to the participant's behaviour. Amongst dyads with a CP member, pain tolerance was also influenced by their friend's behaviours. Friends of adolescents with pain engage in more unhelpful behaviours perhaps decreasing the ability of CP adolescents to engage in social activities.

Pediatric Health Outcome Evaluation in Low-and Middle-Income Countries: A Scoping Review of NGO Practice.

Objective. The purpose of this study was to explore the research on the delivery and evaluation of pediatric health services by non-governmental organizations in low-and middle-income countries to better understand how they contribute to positive and sustainable health outcomes. Methods. A scoping review was completed using a 2-step study selection procedure. Results. Of the 5742 studies, 17 met criteria, including quantitative and mixed method designs, representing 10 different non-governmental organizations with programs in 33 low-and middle-income countries. Health outcomes were reported 89 times across the studies. A total of 56 different outcomes were identified in total, of which 24 were positive, 27 were negative, and 5 were unchanged. Conclusions. Widespread variation between non-governmental organizations exist, however, comprehensive pediatric health outcome evaluation is growing. Further emphasis should be given to adolescent specific research and robust measurement of quality of life.

Are They Still Friends? Friendship Stability of Adolescents With Chronic Pain: 1-Year Follow-Up.

Most adolescents identify their best friend as their main source of social support. Adolescents with chronic pain (ACP) report the loss of friendships due to pain. Friendships protect against loneliness and depression, yet adolescents with pain experience increased levels of loneliness and depression compared to peers. This longitudinal study examines the friendship stability of dyads that included an adolescent with chronic pain compared to non-pain friendship dyads as well as the factors contributing to a friendship breakup. Eighty-three participants from 61 same-sex friendship dyads across 3 sites participated in a 1-year follow-up survey designed to capture friendship features, indices of social-emotional well-being, pain characteristics, and friendship stability. Chi-square, repeated measures ANOVA, and logistic regression were used to analyze the data. Dyads that included an ACP experienced higher rates of friendship breakup. The shorter length of friendship and having chronic pain predicted a friendship breakup at time 2. ACP continues to experience worse scores on indices of social-emotional well-being that are not predicted with a friendship breakup. Understanding what contributes to positive long-term friendships for those with pain may inform strategies to maintain and improve friendships for those with pain and who experience social challenges.

Social functioning and peer relationships in children and adolescents with chronic pain: A systematic review.

BACKGROUND: Peer relationships during childhood and adolescence are acknowledged to be negatively impacted by chronic pain; however, to date there has been no synthesis of this literature. OBJECTIVE: To systematically review existing literature describing the social functioning and peer relationships in children and adolescents with recurrent or continuous chronic pain. METHODS: Articles on peer relationship factors studied in samples of children and adolescents with chronic pain published in English or French were identified using EMBASE, Medline, CINAHL and PsycINFO. Two independent reviewers performed initial screenings using study titles and abstracts, and reviewed each eligible article in full. RESULTS: Of 1740 published papers yielded by the search, 42 articles met the inclusion criteria and were included in the present review. Nine studies had peer relationship investigation as the primary purpose of the study; the remaining 33 examined peer relationships as part of a broader study. A range of specific and more general measures was used to examine peer relationships. Across studies, children and adolescents with chronic pain were reported to have fewer friends, be subjected to more peer victimization, and were viewed as more isolated and less likeable than healthy peers. CONCLUSIONS: Children and adolescents with chronic pain have peer relationship deficiencies. However, the majority of studies to date measure peer relationships as part of a broader study and, thus, little attention has been paid specifically to peer relationships in this group. Additional research examining the quality of peer relationships of children and adolescents with chronic pain, as well as development of measures specifically designed to assess these relationships, is needed.