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

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

Support for my video is support for me: A YouTube scoping review of videos including adolescents with chronic pain

Adolescents with chronic pain report feelings of social isolation, of being different, and lack of understanding from peers. These challenges suggest that these adolescents may not obtain the social support they require. Thus, they may have to find other venues through which to find social support. Adolescents are heavy users of social media as a venue to share experience and obtain information and adolescents with chronic pain may be no different. A scoping review of YouTube was conducted by searching videos using the terms 'youth with chronic pain' and 'teens with chronic pain'. Videos in English, targeting at and including an adolescent with chronic pain were included. All identified videos were screened for eligibility until 20 consecutive videos were excluded. For each included video the first 5 related videos suggested by YouTube were screened for eligibility. This selection process resulted in 18 included videos, with a total of 936 comments. Recurring themes in the videos' comments were identified using qualitative content analysis. Videos content mainly covered multidisciplinary treatment options, alternative treatments and impact of pain on daily life. While a variety of treatment options were discussed, details of treatment content were lacking. Comments reflected the overarching message "you are not alone!" and mainly focused on providing and receiving support, sharing suffering, and revealing the impact of pain on relationships and daily life. Despite potential challenges associated with social media, YouTube may be a promising platform for provision of social support for adolescents with chronic pain

Delivering transformative action in paediatric pain: a <i>Lancet Child &amp; Adolescent Health</i> Commission

Every infant, child, and adolescent will experience pain at times throughout their life. Childhood pain ranges from acute to chronic, and includes procedural, disease-related, breakthrough, and other types of pain. Despite its ubiquity, pain is a major challenge for individuals, families, health-care professionals, and societies. As a private mental experience, pain is often hidden and can go undiscussed or ignored. Undertreated, unrecognised, or poorly managed pain in childhood leads to important and long-lasting negative consequences that continue into adulthood, including continued chronic pain, disability, and distress. This undertreatment of pain should not continue, as there are available tools, expertise, and evidence to provide better treatment for childhood pain

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

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

My Friends Don't Really Understand Me: Examining Close Friendships of Adolescents with Chronic Pain

Chronic pain negatively affects all dimensions of an adolescent’s life. Little is known about the social impact of chronic pain for adolescents, especially on close friendships. More is known about peer acceptance and number of friends than the characteristics and qualities of close friendships. This series of studies used mixed methods to generate knowledge regarding the impact chronic pain has on close friendships. Adolescents with and without chronic pain participated. The findings shed light on the challenges chronic pain presents in close friendships. Adolescents with chronic pain developed new friendship needs but non-pain peers may be uncertain of their knowledge and skill in how best to support a close friend with chronic pain. This gap between friendship needs and expectations versus lack of knowledge and skill may result in friendship tensions and disengagement. Findings highlight areas for interventions to maintain and improve close friendships of adolescents with chronic pain