RESUMO
BACKGROUND: Shared decision-making is one promising solution to addressing barriers in use of disease-modifying therapies for adolescents and young adults (AYAs) with sickle cell disease (SCD). A thorough understanding of decisional needs can guide the development of decisional supports and promote shared decision-making. PROCEDURE: Informed by the Ottawa Decision Support Framework (ODSF), we conducted a qualitative analysis to assess decisional needs and supports reported by AYAs with SCD, their caregivers, and healthcare providers. Semi-structured qualitative interviews were conducted with AYAs and their caregivers, and online crowdsourcing was used with SCD providers. Thematic and descriptive content analyses were used to summarize perspectives on decisional needs and supports regarding disease-modifying therapies. RESULTS: Fourteen AYAs (Mage = 21 years, 57% male, 93% non-Hispanic Black, 79% HbSS), 11 caregivers (80% female, 100% non-Hispanic Black), and 40 healthcare providers (65% female, 65% non-Hispanic White, Myears in practice = 14.8 years, 75% physicians) participated. Thematic analysis revealed needs related to: decisional conflict, inadequate knowledge, unclear expectations, and inadequate supports and resources. Six forms of support emerged as important for decision-making: establishing an open and trusting patient/family-provider relationship, providing information, accepting ambivalence and unreadiness, supporting implementation of a decision, addressing inadequate health and social services, and promoting adequate social, emotional, and instrumental help. CONCLUSIONS: This is the first study to assess decisional needs and supports for AYAs with SCD considering disease-modifying therapies. Additional research is needed to examine which decision supports are the most impactful to promote effective shared decision-making in this population.
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Anemia Falciforme , Humanos , Anemia Falciforme/terapia , Anemia Falciforme/psicologia , Feminino , Masculino , Adolescente , Adulto Jovem , Adulto , Tomada de Decisões , Cuidadores/psicologia , Tomada de Decisão Compartilhada , Pesquisa Qualitativa , Pessoal de Saúde/psicologia , Técnicas de Apoio para a DecisãoRESUMO
OBJECTIVE: Identify and describe trajectories of cancer-related posttraumatic stress symptoms (PTSS) among siblings of children with cancer within two years of diagnosis. METHOD: Siblings (aged 8-18; M = 11.2 years) across the United States, and for each, one caregiver, were recruited for a cohort sequential longitudinal study with three data collection points six months apart beginning at 6- or 12-months after cancer diagnosis. Siblings (N = 229; 42% of eligible/approached; 53% identifying as female; 68% identifying as non-Hispanic White) completed the Child Posttraumatic Stress Disorder Symptom Scale. Caregivers completed the Strengths and Difficulties Questionnaire (SDQ). Latent class growth analysis (LCGA) and growth mixture modeling (GMM) identified PTSS patterns across time. RESULTS: Fit statistics supported models with three to five PTSS trajectories. The three-class LCGA model included a large mild PTSS group (61%), a moderate PTSS group (35%), and a small (4%) stable severe PTSS group. The four-class LCGA and three- and four-class GMM included groups improving from moderate to mild PTSS (7-21%) and worsening to moderate PTSS across time (12-17%). Across models, siblings with mild PTSS had fewer caregiver-reported emotional and behavioral difficulties on the SDQ. CONCLUSIONS: A large group of siblings of children with cancer demonstrate resiliency, however, substantial subsets experience patterns of PTSS that include levels in the moderate-to-severe range during the first two years post-diagnosis. Future research should examine these patterns in more diverse/representative samples and identify factors associated with increasing and sustained severe PTSS to inform intervention targets and reduce cancer-related burden on families.
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Neoplasias , Transtornos de Estresse Pós-Traumáticos , Humanos , Criança , Feminino , Irmãos , Estudos Longitudinais , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/psicologia , Neoplasias/diagnóstico , Neoplasias/psicologia , EmoçõesRESUMO
OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty. METHODS: A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly. RESULTS: The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality. CONCLUSIONS: Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families.
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Cuidados Paliativos , Pediatria , Prática Psicológica , Criança , Humanos , Psicologia da CriançaRESUMO
BACKGROUND: Individuals with sickle cell disease (SCD) experience systemic barriers in accessing high-quality care. Research suggests that patient/family-provider relationships are an important indicator of healthcare quality and can influence disease self-management and outcomes. The Patient Centered Communication (PCC) framework holds that patient/family-centered communication (e.g., eliciting, understanding, and validating patients' perspectives within their unique psychosocial contexts) contributes to improved family-provider relationships, as well as self-efficacy for disease management, adherence, and health outcomes. While the PCC framework has been useful in guiding the evaluation of patient/family-provider communication in other pediatric populations, it has not yet been applied in the context of pediatric SCD. This study aimed to use this framework to examine patient and family perceptions of communication with pediatric SCD healthcare providers. PROCEDURE: Total 17 caregivers (82% mothers, 94% Black/African American) and eight patients (62% female, aged 13-19 years, M = 16.50) completed semi-structured interviews. The PCC framework informed the development of a preliminary codebook. Thematic content analysis summarized family perspectives regarding communication with providers. RESULTS: For youth with SCD and their caregivers, specific themes related to family-centered communication included: reducing patient/family distress, supporting disease self-management efforts, facilitating information exchange and decision-making, and fostering positive and trusting relationships with providers. CONCLUSIONS: This study helps to address gaps in the literature related to patient/family-provider communication within pediatric SCD. Results underscore the importance of patient- and family-centered communication across pediatric SCD care. These findings can inform future research and clinical care initiatives to improve patient/family-provider interactions and health outcomes for this underserved population.
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Anemia Falciforme , Comunicação , Adolescente , Humanos , Criança , Feminino , Masculino , Relações Profissional-Paciente , Anemia Falciforme/terapia , Pessoal de Saúde/psicologia , CuidadoresRESUMO
OBJECTIVE: Headaches are common among youth and are associated with significant negative outcomes. Despite advances in interdisciplinary treatments for youth with chronic pain, research suggests disparities in access to these services. METHODS: A total of 186 youth (M = 14.19 years old, 70.8% female) presenting to a neurology appointment at a children's hospital system were screened using the Pediatric Pain Screening Tool (PPST), a brief, validated measure to identify youth that may benefit from additional pain management services. RESULTS: Two-thirds of participants (n = 124, 66.7%) screened as medium or high risk on the PPST. Risk categorization did not vary by patient age or sex. A greater proportion of Hispanic/Latino patients were categorized as low-risk relative to non-Hispanic/Latino patients (55.6% vs. 30.1%), and a somewhat lower proportion of patients of color were categorized as medium-risk relative to White patients (14.0% vs. 30.5%). Three-quarters (n = 94, 75.8%) of patients who were screened as medium or high risk were not referred for any additional pain management services. Referrals did not vary by patient age or ethnicity. While not statistically significant, a lower proportion of males received referrals at both medium (8.3% vs. 17.6%) and high levels of risk (15.8% vs. 34.5%), and a greater proportion of youth of color who screened as medium risk received referrals relative to White youth categorized as medium risk (37.5% vs. 10.3%). CONCLUSION: Future research should continue to explore factors influencing decision-making regarding referral to specialized pain management services for youth with headache.
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Dor Crônica , Cefaleia , Medição da Dor , Adolescente , Criança , Dor Crônica/diagnóstico , Dor Crônica/etiologia , Feminino , Cefaleia/complicações , Cefaleia/diagnóstico , Cefaleia/terapia , Humanos , Masculino , Medição da Dor/métodos , Projetos Piloto , Encaminhamento e Consulta , Medição de RiscoRESUMO
OBJECTIVE: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed in Spring 2020 to assess effects of the COVID-19 pandemic on families and caregivers. Initial psychometric properties were promising. The current study examined the factor structure and evaluated convergent and criterion validity of the CEFIS in a new sample. METHODS: In October and November 2020, caregivers (N = 2,531) of youth (0-21 years) scheduled for an ambulatory care visit at Nemours Children's Hospital, Delaware completed the CEFIS and measures of convergent (PROMIS Global Mental Health Scale, Family Assessment Device) and criterion validity (PTSD Checklist-Civilian). Confirmatory factor analysis was used to examine the factor structure of the CEFIS. Bivariate correlations and logistic regression were used to examine convergent and criterion validity. RESULTS: Factor analysis supported the original six- and three-factor structures for the Exposure and Impact scales, respectively. Second-order factor analyses supported the use of Exposure, Impact, and Distress total scores. Higher scores on the CEFIS Exposure, Impact, and Distress scales were associated with increased mental health concerns and poorer family functioning. Higher scores on all CEFIS scales were also associated with greater odds of having clinically significant posttraumatic stress symptoms. CONCLUSIONS: The CEFIS is a psychometrically sound measure of the impact of the COVID-19 pandemic on family and caregiver functioning and may also be useful in identifying families who would benefit from psychological supports.
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COVID-19 , Adolescente , Criança , Análise Fatorial , Humanos , Pandemias , Psicometria , Reprodutibilidade dos Testes , SARS-CoV-2RESUMO
OBJECTIVE: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA. METHODS: The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age. RESULTS: Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified. DISCUSSION: Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.
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COVID-19 , Neoplasias , Adolescente , COVID-19/epidemiologia , Humanos , Neoplasias/psicologia , Pandemias , Psicometria , Reprodutibilidade dos Testes , Adulto JovemRESUMO
OBJECTIVE: To examine relationships amongst parental post-traumatic stress symptoms, parental post-traumatic growth, overprotective parenting, and child emotional/behavioural problems in families of children with critical CHD. METHOD: Sixty parents (15 fathers) of children aged 1-6 completed online questionnaires assessing parental post-traumatic stress symptoms and post-traumatic growth, overprotective parenting, and child emotional/behavioural problems. Bivariate correlations and mediational analyses were conducted to evaluate overprotective parenting as a mediator of the association between parental post-traumatic stress symptoms and child emotional/behavioural problems. RESULTS: Parents reported significant post-traumatic stress symptoms, with over 18% meeting criteria for post-traumatic stress disorder and 70% meeting criteria in one or more clusters. Parental post-traumatic growth was positively correlated with intrusion (r = .32, p = .01) but it was not associated with other post-traumatic stress symptom clusters. Parental post-traumatic stress symptoms were positively associated with overprotective parenting (r = .37, p = .008) and total child emotional/behavioural problems (r = .29, p = .037). Overprotective parenting was positively associated with total child emotional/behavioural problems (r = .45, p = .001) and fully mediated the relationship between parental post-traumatic stress symptoms and child emotional/behavioural problems. CONCLUSION: Overprotective parenting mediates the relationship between parental post-traumatic stress symptoms and child emotional and behavioural problems in families of children with CHD. Both parental post-traumatic stress symptoms and overprotective parenting may be modifiable risk factors for poor child outcomes. This study highlights the need for interventions to prevent or reduce parental post-traumatic stress symptoms and to promote effective parenting following a diagnosis of CHD.
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Cardiopatias Congênitas , Comportamento Problema , Transtornos de Estresse Pós-Traumáticos , Criança , Humanos , Poder Familiar/psicologia , Pais/psicologia , Comportamento Problema/psicologia , Transtornos de Estresse Pós-Traumáticos/etiologiaRESUMO
OBJECTIVE: In response to the rapidly unfolding coronavirus disease 2019 (COVID-19) pandemic in spring 2020, we developed a caregiver-report measure to understand the extent to which children and families were exposed to events related to COVID-19 and their perceptions of its impact. This article reports on the factor structure and psychometric properties of this measure. METHODS: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 1805 caregivers recruited from 28 programs at 15 institutions across the United States were collected from May-September 2020. We examined the underlying structure of the CEFIS using exploratory factor analyses and its internal consistency (Cronbach's alpha). RESULTS: Participants reported a range of COVID-19-related events (M = 8.71 events of 25). On the bidirectional 4-point impact scale, mean scores were mostly above the midpoint, indicating a slightly negative impact. Cronbach's alpha was excellent for Exposure (α = .80) and Impact (α = .92). Factor analysis identified six factors for Exposure (COVID-19 experiences, Access to essentials, Disruptions to living conditions, Loss of income, Family caregiving and activities, and Designation as an essential worker). There were three factors for Impact (Personal well-being, Family interactions, and Distress). DISCUSSION: The CEFIS has strong factors assessing Exposure to events related to COVID-19, and the Impact of these events on families of children in pediatric healthcare. These initial validation data support use of the CEFIS for measuring the effect of the pandemic.
Assuntos
COVID-19 , Cuidadores , Criança , Humanos , Psicometria , Reprodutibilidade dos Testes , SARS-CoV-2 , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Família , Criança , Doença Crônica , Humanos , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
AbstractsBackground: Individuals who misuse opioids frequently have comorbid psychiatric issues, including post-traumatic stress disorder (PTSD) and depression. However, little is known about the mechanisms by which these disorders are associated with opioid misuse and specifically in community pharmacy settings. The current study examined whether depression mediated the relationship between PTSD and opioid misuse in patients filling opioid prescriptions. Methods: We administered a health survey in four community pharmacies among patients filling opioid medications in southwestern Pennsylvania. Univariate statistics were used to assess relationships among demographic and clinical characteristics of PTSD, depression, and opioid misuse behaviors. We then examined whether depression mediated the relationship between PTSD and opioid misuse using ordinary least squares path analysis with bootstrapping. Results: A total of 333 participants completed the health survey. Opioid misuse was reported among 15.9% of all participants, 33.3% among those with a positive PTSD screen, and 29.3% of those who screened positive for depression. Depression significantly mediated the relationship between PTSD and opioid misuse. Specifically, there was a statistically significant indirect effect (ab) of PTSD on opioid misuse through a pathway mediated by depression (ab = .06, SEab = .02, 95% CI = .02-.10). The direct effect (c') of PTSD on opioid misuse was also significant (c' = .12, SEc' = .05, P = .01, 95% CI = .03-.22), suggesting partial mediation. Conclusions: Results suggest an indirect pathway by which clinical intervention may help ameliorate outcomes in patients with PTSD. Further, there is an increased need for screening, assessment, and intervention protocols for this patient population in which community pharmacy is a novel setting to expand future efforts within the patient population.
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Transtorno Depressivo/complicações , Transtornos Relacionados ao Uso de Opioides/complicações , Transtornos de Estresse Pós-Traumáticos/complicações , Adulto , Serviços Comunitários de Farmácia , Comorbidade , Transtorno Depressivo/epidemiologia , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Inquéritos Epidemiológicos , Humanos , Análise dos Mínimos Quadrados , Masculino , Programas de Rastreamento/estatística & dados numéricos , Pessoa de Meia-Idade , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Pennsylvania , Prevalência , Transtornos de Estresse Pós-Traumáticos/epidemiologiaRESUMO
OBJECTIVES: After injury, many children experience posttraumatic stress symptoms (PTSS) that negatively impact recovery. Acute pain and PTSS share neurobiological pathways, and acute dosage of morphine has been linked to reduced PTSS in naturalistic studies. However, the complex interactions between pain, morphine and other opioid use, and PTSS have yet to be investigated in robust pediatric samples.This prospective, longitudinal study examined relationships between acute pain, opioid medications, and PTSS after pediatric injury. METHODS: Ninety-six children aged 8 to 13 years (mean = 10.60, SD = 1.71), hospitalized for unintentional injury, completed assessments at baseline (T1) and 12 weeks (T2) later. Pain ratings and opioid administration data were obtained via chart review. RESULTS: Structural equation modeling revealed that worst pain endorsed during hospitalization was positively associated with concurrent and later PTSS when controlling for evidence-based risk factors (ie, age, sex, prior trauma history, traumatic appraisals of injury event, heart rate). Neither opioid medications overall nor morphine specifically (milligram/kilogram/day) administered during hospitalization mediated the relationship between pain and T2 PTSS. CONCLUSIONS: Pain during hospitalization may increase susceptibility for persistent PTSS above and beyond the influence of other empirical risk factors. Findings suggest that pain assessment may be a useful addition to pediatric PTSS screening tools and highlight the need for additional research on pharmacological secondary prevention approaches. Given that inadequate pain control and persistent PTSS each hinder recovery and long-term functioning, better understanding of interactions between acute pain and PTSS after injury is essential for improving screening, prevention, and early intervention efforts.
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Analgésicos Opioides/uso terapêutico , Transtornos de Estresse Pós-Traumáticos/tratamento farmacológico , Ferimentos e Lesões/tratamento farmacológico , Lesões Acidentais , Dor Aguda/tratamento farmacológico , Adolescente , Criança , Criança Hospitalizada , Feminino , Humanos , Estudos Longitudinais , Masculino , Manejo da Dor , Medição da Dor , Estudos Prospectivos , Fatores de Risco , Estados UnidosRESUMO
OBJECTIVE: To examine rate of registration for randomized controlled trials (RCTs) published in the Journal of Pediatric Psychology (JPP) and Journal of Clinical Child & Adolescent Psychology (JCCAP). Secondary aims were to investigate associations between trial characteristics and registration status and compare registered and published primary outcomes. METHODS: RCTs published in JPP or JCCAP between January 1, 2007 and December 31, 2017 were included. Secondary analyses of previously published RCTs, meta-analytic, systematic, and narrative reviews, and articles reporting primary aims related to intervention acceptability, feasibility, and/or cost-effectiveness were excluded. Trial registration status, primary registered and published outcomes, dates of registration, participant enrollment and publication, sample size, and country where the trial was conducted were extracted from articles and trial registries. RESULTS: Of 61 RCTs included, 48% were registered. Among registered trials, only 14% were registered before participant enrollment began. Most were registered late (i.e., retrospectively; 86%) in ClinicalTrials.gov (90%). Registration status did not differ based on journal, study sample size, or geographic region where the study was conducted. A greater proportion of trials published in 2013-2017 were registered (61%) relative to those published in 2007-2012 (32%), p = .03. Among registered trials, 57% had discrepancies between registered and published primary outcomes. CONCLUSIONS: Findings reveal low rates of prospective registration and considerable risk for incomplete or selective outcome reporting among RCTs published in JPP and JCCAP. Coordinated efforts from all stakeholders involved in the conduct and reporting of clinical child and pediatric psychology research are needed to improve transparent reporting of clinical trials.
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Ensaios Clínicos como Assunto , Psicologia da Criança , Adolescente , Criança , Humanos , Estudos RetrospectivosRESUMO
OBJECTIVE: Using a prospective, longitudinal design, we examined the relationship between acute pain and posttraumatic stress symptoms (PTSS) in youth following injury. METHODS: Children aged 8-17 years who sustained an injury (N = 243) and their parents participated in baseline interviews to assess children's worst pain since injury. 6 months later, participants completed follow-up interviews to assess child PTSS. RESULTS: Pain as assessed by the Color Analogue Pain Scale (CAS) predicted PTSS 6 months after injury, even when controlling for demographic and empirically based risk factors. On the other hand, pain as assessed by the Faces Pain Rating Scale was not a significant independent predictor of PTSS. CONCLUSIONS: The CAS may be a useful addition to existing screening tools for PTSS among children. Additional research is warranted to understand underlying mechanisms linking acute pain and PTSS to improve assessment, prevention, and treatment approaches and promote optimal recovery after pediatric injury.
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Dor Aguda/psicologia , Transtornos de Estresse Pós-Traumáticos/etiologia , Ferimentos e Lesões/psicologia , Dor Aguda/diagnóstico , Dor Aguda/etiologia , Adolescente , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Medição da Dor , Estudos Prospectivos , Fatores de Risco , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Ferimentos e Lesões/complicaçõesRESUMO
The ways in which a family copes with the physical and psychosocial burdens of sickle cell disease (SCD) can influence the child and family functioning. However, few studies have examined SCD-related stressors beyond pain or how children and parents cope with these stressors. This study aimed to describe child coping and parent attempts to help their children cope (ie, coping assistance) with a range of SCD stressors by using a triangulated mixed methods design. We also explored convergence between findings from qualitative interviews and quantitative coping inventories. Fifteen children (aged 6 to 14 years) with SCD and their parents (N=15) completed semistructured interviews and self-report measures to assess SCD-related stressors, coping, and coping assistance strategies. Findings indicate that children experience numerous stressors related to SCD and its treatment, including, but not limited to, pain. To manage these stressors, families employ a range of approach and avoidance-oriented coping strategies. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping processes among children with SCD and their parents. Examining a broad range of stressors and integrating multiple assessment methods helps improve our understanding of coping with pediatric SCD, which may inform clinical practice and family-focused intervention development.
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Adaptação Psicológica , Anemia Falciforme/psicologia , Pais/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Tamanho da AmostraRESUMO
The purpose of this study was to describe child coping and parent coping assistance with cancer-related stressors during treatment. Fifteen children (age 6-12) with cancer and their parents (N = 17) completed semistructured interviews and self-report measures to assess coping and coping assistance. Results suggest families utilized a broad array of approach and avoidance strategies to manage cancer and its treatment. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping among children with cancer and their parents. Using a mixed methods approach to assess coping provides a richer understanding of families' experiences, which can better inform clinical practice.
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Adaptação Psicológica , Neoplasias/psicologia , Relações Pais-Filho , Estresse Psicológico/psicologia , Criança , Feminino , Humanos , Masculino , Neoplasias/terapia , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
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, MT-score=55.67) and parent proxy-report (N=354, MT-score=57.70). Pain interference was moderately elevated by self-report (N=323, MT-score=61.52) and parent proxy-report (N=356, MT-score=64.02). There were no differences between patients referred who attended versus did not attend an interdisciplinary evaluation based on age, sex, ethnicity, or language. A smaller than expected proportion of referred Black patients (44%, P=0.02) and patients referred from orthopedics (40%) or pulmonology (11%) attended an evaluation, whereas a larger than expected proportion of those referred from physical medicine and rehabilitation (78%) were evaluated (P<0.001). 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.
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OBJECTIVE: The study objective is to evaluate the feasibility and efficacy of a web-based intervention for parents (AfterTheInjury.org [ATI]) in promoting emotional recovery following pediatric injury. METHODS: 100 children with injuries requiring medical attention and their parents were randomly assigned to the intervention or usual care. Efficacy outcomes included parent knowledge and child and parent posttraumatic stress symptoms (PTSS). RESULTS: All parents in the intervention group completed the intervention (directed use of ATI) in the hospital. 56% reported using ATI online post-discharge, and 100% of these parents found it helpful. Parent knowledge increased immediately post-intervention, but there was no significant intervention impact on parent knowledge or PTSS at a 6-week follow-up. Relationships between knowledge and PTSS were identified. CONCLUSIONS: Brief web-based interventions introduced during child hospitalization are a feasible strategy to reach many parents following pediatric injury. Preventing psychological symptoms may require more than parental education alone.
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Conhecimentos, Atitudes e Prática em Saúde , Pais/educação , Psicoterapia/métodos , Transtornos de Estresse Pós-Traumáticos/prevenção & controle , Ferimentos e Lesões/psicologia , Adolescente , Adulto , Criança , Criança Hospitalizada , Estudos de Viabilidade , Feminino , Humanos , Internet/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Resultado do Tratamento , Ferimentos e Lesões/etiologia , Adulto JovemRESUMO
OBJECTIVES: Intensive interdisciplinary chronic pain treatment programs have demonstrated that pain acceptance predicts positive treatment outcomes, but limited research has focused on less-intensive programs. This study aimed to examine associations between changes in pain acceptance and pain interference among youth participating in an outpatient interdisciplinary chronic pain treatment program. DESIGN: Youth presenting to an evaluation within an interdisciplinary outpatient pediatric chronic pain program completed questionnaires at initial program evaluation (T1) and three months later (T2). MAIN OUTCOME MEASURES: Youth (N = 94, Mage = 14.59 years, 74% female) completed the Chronic Pain Acceptance Questionnaire, Adolescent Version (CPAQ-A) and PROMIS Pediatric Pain Interference scale. RESULTS: Pain acceptance increased significantly from T1 to T2 (p=.001), driven primarily by activity engagement (p=.001). Pain interference decreased from T1 to T2 (p<.001). Improvements in acceptance were strongly associated with reductions in interference (p<.001). An exploratory cross-lagged structural equation model revealed a number of direct and indirect effects between pain acceptance and pain interference at T1 and T2. CONCLUSION: Pain acceptance and interference improved after three months in an outpatient chronic pain treatment program. Improvements in acceptance were strongly related to reductions in interference. Future research should examine these relationships over longer periods, in larger samples.