ABSTRACT
Chronic pain and posttraumatic stress disorder symptoms (PTSS) co-occur at high rates in youth and are linked to worse pain outcomes and quality of life. While peer victimization has been posited as a mechanism underlying the PTSS-pain relationship in youth, empirical evidence suggests that it may exacerbate both PTSS and pain. The present study aimed to longitudinally examine PTSS as a mediator in the relationship between peer victimization at baseline and pain-related outcomes at 3 months in youth with chronic pain. Participants included 182 youth aged 10 to 18 years recruited from a tertiary-level children's hospital in Western Canada. At baseline, participants completed measures to assess pain (intensity and interference), peer victimization (relational and overt), and PTSS. The pain was reassessed at a 3-month follow-up. Primary hypotheses were tested utilizing a series of mediation analyses with PTSS as a proposed mediator in the associations between peer victimization and pain outcomes. Youth PTSS mediated the relationship between higher baseline relational victimization and higher 3-month pain interference while controlling for baseline pain interference. Three-month pain intensity was not correlated with peer victimization; thus, pain intensity was not included in the analyses. These findings reveal that PTSS may be an underlying factor in the co-occurrence of peer victimization and chronic pain in youth. Further research is needed to better understand the role of peer victimization in the maintenance of chronic pain to ensure appropriate, effective, and timely interventions that address the social and mental health issues impacting the lives of these youth as well as their pain. PERSPECTIVE: PTSS may be an underlying factor in the co-occurrence between peer victimization and chronic pain in youth, highlighting the need to assess for both peer relationship problems and PTSS in youth with chronic pain.
ABSTRACT
Chronic pain and mental health issues occur at higher rates in Veterans than the general population. One widely recognized mental health issue faced by Veterans is post-traumatic stress disorder (PTSD). Trauma symptoms and pain frequently co-occur and are mutually maintained due to shared mechanisms. Many Veterans are also parents. Parental physical and mental health issues significantly predict children's chronic pain and related functioning, which can continue into adulthood. Only 1 U.S.-based study has examined pain in the offspring of Veterans, suggesting a heightened risk for pain. Research to date has not examined the associations between trauma and pain and the dyadic influences of these symptoms, among Veterans, and their children. The current study aimed to describe pain characteristics in Canadian Armed Forces Members/Veterans with chronic pain and their offspring (youth and adult children aged 9-38). Cross-lagged panel models were conducted to examine dyadic relationships between pain interference and trauma symptoms of Canadian Armed Forces Members/Veterans and their offspring. Over half of adult offspring and over one-quarter of youth offspring reported chronic pain. Results revealed effects between one's own symptoms of PTSD and pain interference. No significant effects of parents on offspring or offspring on parents were found. The findings highlight the interconnection between pain and PTSD consistent with mutual maintenance models and a lack of significant interpersonal findings suggestive of resiliency in this unique population. PERSPECTIVE: We characterized chronic pain in the offspring of Canadian Armed Forces Members/Veterans with chronic pain and examined dyadic relationships between PTSD symptoms and chronic pain interference. Findings revealed that PTSD symptoms and pain interference were related within Veterans and offspring, but no dyadic relationships were found, which could reflect resiliency.
Subject(s)
Adult Children , Chronic Pain , Military Personnel , Stress Disorders, Post-Traumatic , Veterans , Humans , Stress Disorders, Post-Traumatic/epidemiology , Chronic Pain/epidemiology , Canada/epidemiology , Veterans/statistics & numerical data , Female , Male , Adult , Child , Military Personnel/statistics & numerical data , Military Personnel/psychology , Adolescent , Young Adult , Middle AgedABSTRACT
Spinal fusion surgery is one of the most common major surgical procedures in youth. Adolescent idiopathic scoliosis (AIS) is the most frequent reason for corrective spinal fusion. AIS (â¼25%-47% of cases) and spinal fusion surgeries are associated with pain, including the development of new onset chronic pain for up to 15% of youth. This research used photovoice approaches to explore the journeys of youth from before, during, and after spinal fusion surgery, to demonstrate their experiences both of and beyond pain. Twenty participants were recruited from a previous study conducted by the senior author's lab. Participants captured photos/videos in their daily life (Phase 1); collected previously taken photos/videos from before/during/after their surgery (Phase 2); and participated in individual interviews to reflexively discuss the meaning behind photos/videos (Phase 3). Before interviews, a questionnaire was administered to assess pain characteristics. Nineteen girls/women with scoliosis and one boy/man with kyphosis (12-19 years old, Mage = 16 years) participated; they identified as white (80%), other (15%), and Southeast Asian (5%). The researchers used a reflexive thematic analysis approach, which generated five themes: (1) body aesthetic versus machine; (2) expectations and anticipation of surgery/outcomes; (3) desire of normalcy and freedom; (4) navigating a hoped-for positive surgery experience; and (5) the journey sculpts identity formation and sense of self. Findings support youth advocacy, underscoring the need to validate youth concerns and inform healthcare professionals of the importance of individualized care. Youth perspectives highlighted opportunities for optimizing surgery/healthcare experiences and the psychosocial impacts of scoliosis on body image and appearance.
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ABSTRACT: Pain experiences of youth with brain-based developmental disabilities are often overlooked and/or misinterpreted, increasing the risk for poor or inadequate pain assessment and management. Ample measures exist to assess acute and chronic pain, yet their utility and frequency of use in youth with brain-based developmental disabilities is unclear and available measures do not have strong measurement properties for this diverse group. This systematic review identified the scope of self-reported and observer-reported pain assessment in studies of youth (aged 3-24 years) with brain-based developmental disabilities (phase 1) and summarized other measures of pain-related functioning for acute and chronic pain (ie, physical, emotional, social, sleep, and quality of life, within the subset of quantitative studies focused primarily on pain, phase 2). A comprehensive search for English-language studies was conducted in August 2022 in Web of Science, CINAHL, MEDLINE, Cochrane CENTRAL, EMBASE, and APA PsychINFO (PROSPERO registration: CRD42021237444). A total of 17,029 unique records were screened. Of the 707 articles included in phase 1, most assessed chronic pain (n = 314; 62.0%) and primarily used observer-report (n = 155; 31%) over self-report (n = 67; 13%). Of the 137 articles included in phase 2, other outcomes assessed alongside pain intensity included motor ability (16.8%), adaptive functioning (11%), quality of life (8%), pain interference (6.6%), mental health (5.8%), and communication ability (2.9%). Cerebral palsy was the most common population in both phase 1 (n = 343; 48.5%) and phase 2 (n = 83; 59.7%). This review provides a foundational understanding of pain assessment in brain-based developmental disabilities and highlights continued inequities in holistic pain assessment for this population.
Subject(s)
Chronic Pain , Child , Humans , Adolescent , Pain Measurement , Quality of Life , Developmental Disabilities , BrainABSTRACT
Chronic pain in Canadian Veterans is twice that of the general population and the prevalence of their related mental health concerns is alarmingly high. This likely puts their children at an increased risk of developing pain and mental health problems that can pervasively impact daily life and persist into adulthood. Pain care and military culture of (acute and chronic) pain have been identified as a top priority of Canadian Veterans. This study aimed to gain an in-depth understanding of the pain experiences of Canadian Armed Forces families. Thirty-five semi-structured qualitative interviews were conducted. Demographic information was collected; age, gender, and ethnicity were reported. Twelve Canadian Armed Forces members/Veterans, 17 youth, and 6 spouses were interviewed. Ninety-two percent of Veteran participants reported chronic pain. Reflexive thematic analyses generated four themes: 1) Military mindset: herd culture and solider identity, 2) The culture of pain within military families, 3) Inseparability of mental health and pain, and 4) Breaking the cycle and shifting the military mindset. Military culture and identity create a unique context within which pain expression and experience is integrally shaped within these families. This study sheds light on how pain is experienced and perceived within military families and can inform research on and efforts to foster resilience in these families. PERSPECTIVE: This is the first qualitative study to explore the lived experiences of pain in Canadian military families. Findings underscore the key role that military culture and identity plays in how pain is experienced and perceived in all family members.
Subject(s)
Chronic Pain , Military Family , Military Personnel , Veterans , Child , Adolescent , Humans , Canada , Veterans/psychology , Qualitative ResearchABSTRACT
Wearable technology has become commonplace for the measurement of heart rate, steps taken, and monitoring exercise regimes. However, wearables can also be used to enable or enhance the lives of persons living with disabilities. This paper discusses the design of a wearable device that aims to facilitate the assessment of physiological signals using conductive Lycra fabric. The device will be applicable for daily use within diverse contexts including the evaluation of emotional experiences of children with Severe Motor and Communication Impairment and the detection of Obstructive Sleep Apnea in children with Down Syndrome. The Lycra fabric sensors are used to acquire electrocardiographic signals, galvanic skin response, and respiratory signals. Articulated design requirements include constraints related to the ability to fit children of all sizes, and meeting medical device standards and biocompatibility, and criteria related to low costs, comfortability, and maintainability. Upon prototyping and preliminary testing, this device was found to offer an affordable, comfortable, and accessible solution to the monitoring of physiological signals. Clinical Relevance- This research provides initial knowledge and momentum towards an affordable wearable device using conductive Lycra to effectively monitor and assess physiological signals in children with disabilities.
Subject(s)
Wearable Electronic Devices , Child , Electric Conductivity , Heart Rate , Humans , Monitoring, Physiologic , Polyurethanes , TextilesABSTRACT
BACKGROUND: Children and youth with severe motor and communication impairment (SMCI) have difficulty providing self-expression through typical speech, writing with a paper and pencil, or using a standard keyboard. Their emotional expressions can be missed by peers and novel caregivers. PURPOSE: To describe the indicators and components of emotional experiences for children/youth with SMCI. METHODS: Primary guardians of nine children/youth with SMCI were involved in photo/video data collection and follow-up qualitative interviews. Twenty-one familiar people (e.g., friends, family members, and/or care team) participated in semi-structured qualitative interviews. RESULTS: A conceptual understanding of emotional well-being specific to the population has been developed consisting of nine themes, encompassed by four domains i) Core Attributes, ii) Personal Experiences, iii) Surroundings, iv) Expression and Reception. CONCLUSIONS: Emotional experiences of children/youth with SMCI are diversely expressed. Primary guardian and familiar person insight can be amplified to positively impact care and participation.
Subject(s)
Communication Disorders , Emotions , Adolescent , Caregivers , Child , Communication , Family , Humans , Qualitative ResearchABSTRACT
PURPOSE: Explore methods used in peer-reviewed literature for obtaining self-expression of well-being information from children with severe motor and communication impairment (SMCI). MATERIALS AND METHODS: A comprehensive search was conducted on 22 August 2019 through academic databases: CINAHL; Embase; MEDLINE; PsycINFO; InSpec; Compendex. Search strategies were informed by keywords under the following areas: (1) population: children with SMCI, (2) assessment methods: alternative to natural speech, paper and pencil report or standardized keyboard use (e.g., eye gaze) and (3) target information: well-being (e.g., quality of life). Studies were excluded if they focused on individuals over 25-years old, exclusively autism or typically developing children. RESULTS: Non-duplicate studies of 10,986 were screened; 49 studies met inclusion criteria. Most studies used high-tech methods of self-expression in a single context (n = 17). Familiar partners play a significant role in self-expression; 18 studies required a familiar partner for children with SMCI to self-express. Thirty-five studies involved children self-expressing to solely adults, in comparison to 14 studies which involved peers. CONCLUSION: Findings highlight the advancement of high-tech communication devices restricted to application in single contexts. Familiar partner knowledge of children with SMCI has the potential to be shared with others (e.g., respite care providers), enhancing both caregiver and child well-being. Future research that would enhance the literature could explore the assessment of emotional well-being for application in various contexts using multimodal methods. Opportunities for children with SMCI to express their emotional well-being can further influence the understanding and enhancement of participation, social connections, and experiences.IMPLICATIONS FOR REHABILITATIONUse of lower tech methods of self-expression to obtain information directly from children with severe motor and communication impairment (SMCI) remain more feasible in home and school contexts.By utilizing familiar partners' experiences and knowledge of the child, respite care providers, novel support workers, and others involved in the lives of children with SMCI can become further informed.Current high-tech methods for obtaining the emotional expressions of children with SMCI may benefit from incorporating multimodal approaches including lower tech methods, to be feasibly applied in real world contexts where well-being takes place.Further research on this topic is imperative to enable children with SMCI to self-express their emotional well-being which can enhance participation, activities, social connections, and experiences.
Subject(s)
Communication Disorders , Quality of Life , Adult , Child , Communication , Emotions , Family , HumansABSTRACT
PURPOSE: To assess child and family engagement in the selection of patient-reported outcomes for clinical studies/clinical settings and development of patient-reported outcome measures (PROMs)/patient-reported experience measures (PREMs) across the pediatric literature. METHODS: Databases were reviewed: EMBASE, MEDLINE, and PsycINFO. Articles published from December 2009 to September 2018 pertaining to the selection of outcomes or development of PROMs/PREMs for children or families were included. The International Association for Public Participation (IAP2) Spectrum of Public Participation was used to classify levels of engagement across each article; IAP2 plots engagement on a spectrum across five stages (from minimal to most engagement): Inform, Consult, Involve, Collaborate, and Empower. RESULTS: 9019 non-duplicate articles were screened; 36 articles met inclusion criteria, seven studies focused on the selection of outcomes, and 29 studies pertained to PROM/PREM development. Twenty-three articles adhered to 'Involve' level of engagement. Four articles were categorized as 'Collaborate,' seven articles were classified as 'Consult,' and three articles were categorized as 'Inform'. CONCLUSION: Children and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research.
Subject(s)
Patient Reported Outcome Measures , Quality of Life/psychology , Child , Humans , Surveys and QuestionnairesABSTRACT
Children with complex disabilities sometimes have difficulty communicating with their parents, caregivers, and teachers. For these children, eye gaze assistive technology can be used to facilitate communication. Eye gaze assistive technology outcomes for children and youth were analyzed in this systematic review. Database and hand-searches yielded 4412 unduplicated results, of which 11 articles were eligible for this review. Outcome measures, as well as environmental and personal factors, were mapped to the World Health Organization's International Classification of Functioning, Disability and Health framework. Communication outcomes were most prevalent and co-occurred with outcomes in all reported activities and participation domains. Environmental and personal factors were classified as either facilitators or as barriers in relation to device uptake and success. Although comprehensive professional and caregiver support was the primary facilitator for success, barriers could lead to rejection of the technology even when children were successful using the system.
Subject(s)
Disabled Children/rehabilitation , Fixation, Ocular , Neurological Rehabilitation/methods , Self-Help Devices , Adolescent , Child , Humans , Neurological Rehabilitation/instrumentation , Outcome Assessment, Health CareABSTRACT
INTRODUCTION: Hereditary hemorrhagic telangiectasia (HHT) can cause significant epistaxis for those that suffer from it. Traditaional surgical treatments are ablative and can cause thermal damage. Radiofrequency (RF) energy can potentially be used to ablate HHT plaques at a lower temperature. In this article we describe our use of RF energy to treat HHT. METHODS: A Coblation Evac70 wand was used with patients under general anesthetic to ablate visible lesions. The surgical technique is described in detail. RESULTS: Thirty-seven patients have been treated over a 3-year time span showing significant improvement in epistaxis severity as measured by the Epistaxis Severity Score. There were three septal perforations that developed, but these were all in patients who had undergone several prior septal cauteries. CONCLUSION: RF energy via Coblation is an effective and safe means of surgically treating HHT lesions, with good epistaxis severity improvement and minimal patient morbidity.