Survey research with families in the context of pediatric chronic health conditions : key considerations and future directions

Self-report family functioning measures play a critical role in advancing our understanding of how families are impacted by, and adapt to, the demands of childhood health conditions. In this article, we present key considerations when conceptualizing, assessing, and analyzing dynamic family processes in research; discuss related implications for selecting instruments; and provide an update on the evidence base of self-report family functioning measures. Researchers need to consider theory, definitions of the family, informants, instruments, and procedural and data analytic issues when designing family research. Examples of questionnaires assessing general family functioning, dyadic relationships, and family functioning within the context of pediatric health conditions are provided. Additional evidence of validity, reliability, clinical utility, and cultural sensitivity of these measures is needed within pediatric chronic illness populations. Future research should include multiple family members and utilize varied assessment methods to obtain a comprehensive understanding of family functioning in the context of pediatric health conditions

Virtual Support for Bereaved Parents: Acceptability, Feasibility, and Preliminary Efficacy of HOPE Group

Background Bereaved parents demonstrate increased risk for long-term psychological problems and poorer overall quality of life. Bereavement support programs can promote improved coping and are positively received by parents but remain underutilized. Virtual programs may help address barriers to accessing bereavement resources, such as families’ physical distance to the hospital and trauma reactions when exposed to a setting where the child received care. The objective of this quality improvement study is to examine caregivers’ bereavement experiences and perspectives on HOPE Group, a virtual group program for bereaved caregivers administered by the palliative care team at Nemours Children\u27s Hospital, Delaware

Feasibility of Electronic Medication Monitoring Among Adolescents and Emerging Adults with Sickle Cell Disease

Purpose: To examine the feasibility of using MEMS® bottles to assess adherence among adolescents and emerging adults with sickle cell disease. Patients and Methods: Eighteen non-Hispanic Black participants with HbSS (M = 17.8 years; 61% male) were given a MEMS® bottle to store hydroxyurea (n = 14) or deferasirox (n = 4). Results: One hundred percent initiated MEMS® use and 61% sustained use through the 18-week study; at follow-up, only 11% returned their bottle on time. Barriers to MEMS® use included medication changes and transition to adult care; facilitators included tip sheets and reminders. Conclusion: While MEMS® is acceptable to this population, ensuring sustained use and timely provision of bottles will require additional supports

Exploring Referral and Service Utilization Patterns Within an Outpatient Interdisciplinary Pediatric Chronic Pain Program

PURPOSE: We examine referral sources and clinical characteristics for youth presenting to an outpatient interdisciplinary pediatric chronic pain program. PATIENTS AND METHODS: Referral data were extracted from the electronic health record. PROMIS Pediatric Anxiety and Pain Interference Scales were administered at an initial evaluation visit. RESULTS: The program received 1488 referrals between 2016 and 2019, representing 1338 patients, with increasing volume of referrals over time. Referrals were primarily from orthopedics (19.6%), physical medicine and rehabilitation (18.8%), neurology (14.4%), and rheumatology (12.6%). Patients referred were primarily female (75.4%), White (80.1%), English-speaking (98.4%) adolescents (median=15.0 years). Of those referred, 732 (54.7%) attended an interdisciplinary evaluation (ie, with ≥2 disciplines). Adolescent anxiety was within the expected range by self-report (N=327, M CONCLUSION: Results highlight the demand for outpatient interdisciplinary pediatric chronic pain treatment. Findings can inform decisions related to staffing and service design for pediatric hospitals that aim to establish or grow outpatient pediatric chronic pain programs

COVID-19 Unmasked Global Collaboration Protocol: longitudinal cohort study examining mental health of young children and caregivers during the pandemic

Background: Early empirical data shows that school-aged children, adolescents and adults are experiencing elevated levels of anxiety and depression during the COVID-19 pandemic. Currently, there is very little research on mental health outcomes for young children. Objectives: To describe the formation of a global collaboration entitled, ‘COVID-19 Unmasked’. The collaborating researchers aim to (1) describe and compare the COVID-19 related experiences within and across countries; (2) examine mental health outcomes for young children (1 to 5 years) and caregivers over a 12-month period during the COVID-19 pandemic; (3) explore the trajectories/time course of psychological outcomes of the children and parents over this period and (4) identify the risk and protective factors for different mental health trajectories. Data will be combined from all participating countries into one large open access cross-cultural dataset to facilitate further international collaborations and joint publications. Methods: COVID-19 Unmasked is an online prospective longitudinal cohort study. An international steering committee was formed with the aim of starting a global collaboration. Currently, partnerships have been formed with 9 countries (Australia, Cyprus, Greece, the Netherlands, Poland, Spain, Turkey, the UK, and the United States of America). Research partners have started to start data collection with caregivers of young children aged 1–5 years old at baseline, 3-months, 6-months, and 12-months. Caregivers are invited to complete an online survey about COVID-19 related exposure and experiences, child’s wellbeing, their own mental health, and parenting. Data analysis: Primary study outcomes will be child mental health as assessed by scales from the Patient-Reported Outcomes Measurement Information System–Early Childhood (PROMIS-EC) and caregiver mental health as assessed by the Depression Anxiety Stress Scale (DASS-21). The trajectories/time course of mental health difficulties and the impact of risk and protective factors will be analysed using hierarchical linear models, accounting for nested effects (e.g. country) and repeated measures

Childhood Trauma and Posttraumatic Stress in Pediatric Amplified Musculoskeletal Pain Syndromes

Background: Potentially traumatic events (PTEs) are unfortunately common experiences among children and adolescents. Approximately one quarter of US children are exposed to a PTE before the age of four, with rates increasing to 60% by 16 years of age (Briggs-Gowan, Ford, Fraleigh, McCarthy, & Carter, 2010; Copeland, Keeler, Angold, & Costello, 2007). Exposure to PTEs during childhood is associated with a wide range of negative emotional, behavioral, and physical health consequences over the life course (Anda et al., 2006; Felitti et al., 1998; Gilbert et al., 2009; Shonkoff et al., 2012). Emerging research suggests that childhood trauma may also increase susceptibility to the development of chronic pain in adolescence and adulthood (Boey & Goh, 2001; Davis, Luecken, & Zautra, 2005; Larsson & Sund, 2007; Liakopoulou-Kairis et al., 2002; Mulvaney, Lambert, Garber, & Walker, 2006). However, most investigations of the link between childhood trauma and chronic pain have focused on adults with history of maltreatment. As a result, the contribution of other PTEs to the development of chronic pain among children and adolescents is poorly understood. Additionally, prior research has largely emphasized the prevalence of comorbid chronic pain and posttraumatic stress disorder (PTSD) diagnoses, rather than closely examining the associations between specific posttraumatic stress symptoms (PTSS), pain severity, and functional impairment. As such, much remains unknown regarding the interplay between exposure to PTEs, PTSS, and chronic pain in youth. Aims: The current study aimed to investigate the relationships between quantity and timing of PTEs, pain severity, and pain-related functional impairment among children with amplified musculoskeletal pain syndromes (AMPS). Additionally, this investigation examined the relationships between indices of PTSD symptomatology (i.e., overall symptom severity and symptom clusters) and pain. Finally, this study explored whether potential associations between childhood trauma and pain outcomes were moderated by anxiety, depression, PTSS, and family functioning. Methods: This study employed a cross-sectional design. Participants included 76 children ages 8-17 years (M = 14.08, SD = 2.14) diagnosed with AMPS and their caregivers presenting to the CHOP Center for Amplified Musculoskeletal Pain Syndromes. Participants completed assessments of childhood trauma history, family functioning, and child anxiety, depression, and PTSS online within two weeks before or after their initial consultation appointment. Medical records were reviewed to obtain information about demographic characteristics, pain severity, and pain-related functional disability from measures administered as part of routine clinical care. Results: While total quantity of PTEs was not associated with pain, PTEs reported during the first five years of life significantly predicted pain-related disability. This relationship varied as a function of both child depression and perceptions of family functioning, such that children who endorsed higher current depression and family functioning exhibited the strongest relationship between early trauma and disability. Total PTSS severity and specific symptom clusters were not associated with pain outcomes and did not moderate the relationship between early childhood PTEs and pain-related disability. Conclusions: Early childhood may be a sensitive period for the effects of PTEs on risk for functional disability in youth with AMPS. Additional research utilizing prospective and longitudinal designs is needed to better understand the biopsychosocial mechanisms underlying the relationship between early childhood trauma and pediatric chronic pain.Ph.D., Psychology -- Drexel University, 201

Acute Pain and Posttraumatic Stress after Pediatric Injury

Background: Unintentional injury is a leading health concern for children across the globe (Peden, 2008). In the United States alone, 20 million children suffer injuries each year (Borse et al., 2009). After an injury, many children experience persistent posttraumatic stress symptoms (PTSS) that negatively impact functioning and recovery (Balluffi et al., 2004; Daviss et al., 2000; DeVries et al., 1999; Holbrook et al., 2005; Kazak et al., 2001; Kean, Kelsay, Wamboldt, & Wamboldt, 2006; Mintzer et al., 2005; Rennick et al., 2004; Stoddard & Saxe, 2001; Winston, Kassam-Adams, Garcia-Espana, Ittenbach, & Cnaan, 2003). Although prior research on risk factors for PTSS has advanced our understanding of emotional recovery after pediatric injury, most investigations have focused on processes in the post-trauma period. Acute pain during the peri-trauma phase represents a promising avenue for identifying children who may be at risk for developing PTSS. Acute pain and PTSS share neurobiological pathways and commonly present after pediatric injury, yet their interactions are poorly understood given the paucity of research in this area (Gold, Kant, & Kim, 2008; Langeland & Olff, 2008). Investigations examining the association between pain and posttraumatic stress have largely focused on adults or small samples primarily composed of pediatric burn patients. As such, much remains unknown regarding the complex interactions between acute pain and PTSS among children who have sustained injuries. Aims: This research aims to add to our understanding of the development of PTSS and contribute to more effective screening and prevention approaches for children who have experienced medical trauma. Specifically, the current study examined the relationship between acute pain and PTSS and investigated whether pain medications conferred a protective effect against PTSS. Methods: This study utilized data collected as part of two large, prospective longitudinal studies of children following injury (Kassam-Adams et al., 2011; Kassam-Adams & Winston, 2004). In Study 1, children ages 8 – 17 years who had sustained an injury (N = 243) and their parents participated in baseline interviews to assess children’s current and worst pain since the injury. Approximately six months later, children and parents completed follow-up interviews to assess child PTSS. In Study 2, children hospitalized for unintentional injury (N = 292) and their parents completed baseline assessments of traumatic stress symptoms. Approximately six weeks and six months later, follow-up assessments were conducted to assess PTSS. Children’s pain ratings and opiate medications administered during hospitalization were obtained via chart reviews. Results: Worst pain as assessed by the Color Analogue Pain Scale predicted child PTSS six months post-injury, even when controlling for demographic and empirically-based risk factors (e.g., heart rate, prior trauma history, acute stress symptoms). In contrast, pain as assessed by the Faces Pain Rating Scale and a numeric 0-10 rating system did not emerge as significant independent predictors of persistent PTSS. Opiate medication use during hospitalization did not moderate the relationship between acute pain and PTSS six weeks or six months following pediatric injury. Conclusions: The Color Analogue Pain Scale may be a useful addition to existing screening tools for PTSS among children. Additional research is needed to examine differences between pain assessment tools as well as the impact of opiate medication use during hospitalization with regards to the development of PTSS. Further research is also warranted to better understand underlying mechanisms linking acute pain and subsequent PTSS in order to improve assessment, prevention, and treatment approaches and promote optimal recovery to pediatric injury.M.S., Psychology -- Drexel University, 201

The Role of Appraisals and Coping in Predicting Posttraumatic Stress Following Pediatric Injury

ObjectiveGiven the millions of children who experience potentially traumatic injuries each year and the need to maximize emotional and physical health outcomes following pediatric injury, the current study examined the individual and collective contributions of the malleable variables of appraisals and coping in predicting posttraumatic stress symptoms (PTSS) in children following injury.MethodThis study combined data from 3 prospective investigations of recovery from pediatric injury (N = 688) in which children ages 8-17 years were recruited shortly after an injury (within 4 weeks). At baseline (T1), children completed measures of their threat appraisals of the injury event and PTSS. Six to twelve weeks later (T2), children completed a measure of coping and PTSS. Finally, PTSS was assessed again 6 months post-injury (T3).ResultsStructural equation modeling analyses provide evidence that appraisals and coping contribute to PTSS. Furthermore, results suggest that escape coping mediates the relationship between threat appraisals and PTSS.ConclusionsEarly interventions designed to prevent or reduce PTSS after pediatric injury may be more successful if they primarily target modifying escape coping behaviors. To best inform clinical practice, future research should examine factors influencing the development of children's appraisals and coping behaviors in the context of potentially traumatic events. (PsycINFO Database Recor