Stigma and Pain in Adolescents Hospitalized for Sickle Cell Vasoocclusive Pain Episodes

Martin, Sarah R.; Cohen, Lindsey L.; Mougianis, Ifigenia; Griffin, Anya; Dampier, Carlton

doi:10.1097/ajp.0000000000000553

Cited by 37 publications

(50 citation statements)

References 73 publications

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“…Further, stigma, negative provider attitudes, and perceived racial bias are associated with SCD pain, 379,380 which may compromise care, thus leading to increased suffering from pain and pain care delivery. [381][382][383][384][385] • RECOMMENDATION 3A: Develop comprehensive care delivery models for SCD pain management, including collaborative partnerships among pain medicine, SCD specialists and advocates, and multidisciplinary teams.…”

Section: Gapmentioning

confidence: 99%

Self-Administered Skills-Based Virtual Reality Intervention for Chronic Pain: Randomized Controlled Pilot Study

Darnall¹,

Krishnamurthy²,

Tsuei³

et al. 2020

JMIR Form Res

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Background Patients with chronic pain often have limited access to comprehensive care that includes behavioral pain management strategies. Virtual reality (VR) is an immersive technology and emerging digital behavioral pain therapy with analgesic efficacy for acute pain. We found no scientific literature on skills-based VR behavioral programs for chronic pain populations. Objective The primary aim of this study is to evaluate the feasibility of a self-administered VR program that included content and skills informed by evidence-based behavioral treatment for chronic pain. The secondary aim is to determine the preliminary efficacy of the VR program in terms of average pain intensity and pain-related interference with activity, stress, mood, and sleep, and its impact on pain-related cognition and self-efficacy. The tertiary aim was to conduct a randomized controlled trial (RCT) and compare the VR treatment with an audio-only treatment. This comparison isolated the immersive effects of the VR program, thereby informing potential mechanisms of effect. Methods We conducted an RCT involving a web-based convenience sample of adults (N=97) aged 18-75 years with self-reported chronic nonmalignant low back pain or fibromyalgia, with an average pain intensity >4 over the past month and chronic pain duration >6 months. Enrolled participants were randomly assigned to 1 of 2 unblinded treatments: (1) VR: a 21-day, skills-based VR program for chronic pain; and (2) audio: an audio-only version of the 21-day VR program. The analytic data set included participants who completed at least 1 of 8 surveys administered during the intervention period: VR (n=39) and audio (n=35). Results The VR and audio groups launched a total of 1067 and 1048 sessions, respectively. The majority of VR participants (n=19/25, 76%) reported no nausea or motion sickness. High satisfaction ratings were reported for VR (n=24/29, 83%) and audio (n=26/33, 72%). For VR efficacy, symptom improvement over time was found for each pain variable (all P<.001), with results strengthening after 2 weeks. Importantly, significant time×group effects were found in favor of the VR group for average pain intensity (P=.04), pain-related inference with activity (P=.005), sleep (P<.001), mood (P<.001), and stress (P=.003). For pain catastrophizing and pain self-efficacy, we found a significant declining trend for both treatment groups. Conclusions High engagement and satisfaction combined with low levels of adverse effects support the feasibility and acceptability of at-home skills-based VR for chronic pain. A significant reduction in pain outcomes over the course of the 21-day treatment both within the VR group and compared with an audio-only version suggests that VR has the potential to provide enhanced treatment and greater improvement across a range of pain outcomes. These findings provide a foundation for future research on VR behavioral interventions for chronic pain.

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Section: Gapmentioning

confidence: 99%

Self-Administered Skills-Based Virtual Reality Intervention for Chronic Pain: Randomized Controlled Pilot Study

Darnall¹,

Krishnamurthy²,

Tsuei³

et al. 2020

JMIR Form Res

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“…Similarly, in a study of 92 adolescents hospitalized for acute SCD episodes, higher SCD stigma scores predicted more pain interference, more loneliness, poorer quality of life, and less pain reduction. 36 Two studies have investigated enacted stigma among medical providers 4 and teachers 29 using vignettes to elicit perceptions of symptom disbelief in pediatric chronic pain. Stigmatizing attitudes from multiple sources may drive social isolation and suffering, and could partly account for poor health outcomes in this population, including depression, 22 anxiety, 51 poor school functioning, 32 and social impairment.…”

Section: Implications Of Stigma For Pediatric Chronic Painmentioning

confidence: 99%

Conceptualizing pain-related stigma in adolescent chronic pain: a literature review and preliminary focus group findings

Wakefield

Zempsky

Puhl

et al. 2018

PR9

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Introduction:Chronic pain in adolescents is a significant medical condition, affecting the physical and psychological well-being of youth and their families. Pain-related stigma is a significant psychosocial factor in adolescents with chronic pain that has been understudied, despite its implications for negative health outcomes, poor quality of life, and increased healthcare utilization.Objectives:To examine pain-related stigma in the literature documenting pediatric and adult health-related stigma and present preliminary findings from a focus group of adolescents with chronic pain.Methods:In this narrative review, we explored pain-related stigma research and conceptualized the literature to address pain-related stigma among adolescents with chronic pain. Additionally, we conducted a focus group of four adolescent females with chronic pain and using content analyses, coded the data for preliminary themes.Results:We propose a pain-related stigma model and framework based on our review and the findings from our focus group. Findings suggest that medical providers, school personnel (ie, teachers and school nurses), peers and even family members enact pain-related stigma toward adolescents with chronic pain.Conclusions:Based on this narrative review, there is preliminary evidence of pain-related stigma among adolescents with chronic pain and future research is warranted to better understand the nature and extent of this stigma within this population.

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“…From a patient‐centered perspective, participation in a group treatment for pain management can serve as an opportunity for physical and behavioral activation to support out of bed movement and activity, which can be difficult for youth experiencing acute or chronic SCD pain. Group treatment provides built‐in opportunities for socialization with peers who also have SCD, which can reduce feelings of isolation and stigma often experienced by adolescents with SCD during hospitalizations and among individuals with chronic pain 17,18 . Granted, social engagement embedded within a group format may not be of interest to all children and adolescents.…”

Section: Discussionmentioning

confidence: 99%

The comfort ability program for adolescents with sickle cell pain: Evaluating feasibility and acceptability of an inpatient group‐based clinical implementation

Lee

Klosky

Vaz

et al. 2021

Pediatric Blood & Cancer

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Background Integration of nonpharmacological therapies, such as cognitive and behavioral pain management strategies, is recommended to support comprehensive disease and pain management among children and adolescents with sickle cell disease (SCD). The Comfort Ability Program for Sickle Cell Pain (CAP for SCP) introduces psychological and biobehavioral pain management strategies to children and adolescents with SCD. This study aimed to pilot the implementation of the CAP for SCP in a group setting to children and adolescents hospitalized for SCD pain examining feasibility, acceptability, and preliminary effectiveness on improving pain knowledge and coping efficacy. Method Adaptation of CAP for SCP into a three‐session group format was guided by four phases of the Dynamic Adaptation Process model: Exploration, Preparation, Implementation, and Sustainment. Youth with SCD (n = 57) hospitalized for pain participated in at least one session and completed self‐report of knowledge of pain management skills, pain coping efficacy, and treatment acceptance. Completion rates of sessions and qualitative feedback were gathered to evaluate feasibility and acceptability. Results Feasibility of conducting inpatient group sessions was suboptimal; however, patients and medical providers reported moderate to high levels of treatment acceptance. Patients also reported significant improvements in knowledge of pain management skills following session 1. Conclusions CAP for SCP is a patient‐centered first‐line psychoeducational intervention that can be integrated into clinical practice settings to introduce youth to cognitive and behavioral pain management strategies to support SCD pain management.

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Stigma and Pain in Adolescents Hospitalized for Sickle Cell Vasoocclusive Pain Episodes

Abstract: These preliminary findings highlight the importance of assessing and addressing SCD-related stigma and pain interference in adolescents hospitalized for SCD pain as these factors may influence treatment outcomes.

Cited by 37 publications

References 73 publications

Self-Administered Skills-Based Virtual Reality Intervention for Chronic Pain: Randomized Controlled Pilot Study

Self-Administered Skills-Based Virtual Reality Intervention for Chronic Pain: Randomized Controlled Pilot Study

Conceptualizing pain-related stigma in adolescent chronic pain: a literature review and preliminary focus group findings

The comfort ability program for adolescents with sickle cell pain: Evaluating feasibility and acceptability of an inpatient group‐based clinical implementation

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