RESUMO
OBJECTIVE: Parents of children who died of a medical condition experience a range of psychosocial outcomes. The current scoping review aims to summarize the outcomes assessed, methodology, and sample characteristics of recent psychosocial research conducted with this population. METHODS: Included studies were limited to peer-reviewed, psychosocial outcomes research published between August 2011 and August 2022, written in English, and including caregiver study participants of children who died of a medical condition. Data sources were scholarly journal articles from 9 electronic databases, including Scopus, Web of Science, Academic Search Primer, ProQuest Research Library, PubMed, Embase, PsycINFO, Psychology & Behavioral Sciences Collection, and Health Source: Nursing/Academic Edition. The Mixed Methods Appraisal Tool-2018 evaluated methodological quality. RESULTS: The study sample included 106 studies, most of which were either qualitative (60%) or quantitative (29%). Mixed-methods studies (8%) and randomized clinical trials (2%) were also identified. Study quality was variable, but most studies met all quality criteria (73%). Studies primarily represented cancer populations (58%), White participants (71%), and mothers (66%). Risk-based psychosocial outcomes (e.g., grief) were more commonly assessed than resilience-based outcomes. CONCLUSIONS: The current scoping review revealed that recent research assessing the psychosocial outcomes of bereaved parents is limited in the representation of diverse populations, primarily qualitative, of broadly strong methodological quality, and oriented to psychosocial risk. To enhance the state of the science and inform evidence-based psychosocial services, future research should consider varied methodologies to comprehensively assess processes of risk and resilience with demographically and medically diverse populations.
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Neoplasias , Resiliência Psicológica , Feminino , Humanos , Criança , Pais/psicologia , Neoplasias/psicologia , Cuidadores/psicologia , MãesRESUMO
OBJECTIVE: Illness intrusiveness refers to the subjective cognitive appraisal of a chronic health condition interfering in daily, valued activities and may be highly relevant for parents of children with atypical genital appearance due to differences of sex development (DSD). However, a measure of illness intrusiveness has not been validated for this population. The current study aimed to evaluate the factor structure of the Illness Intrusiveness Scale for Parents (IIS-P) and examine convergent validity. METHODS: Participants included 102 parents (Mage = 33.39 years, SD = 6.48; 58% mothers) of 65 children (<2 years old) diagnosed with DSD participating in a larger, longitudinal study. Parents completed the IIS-P as well as self-report measures of stigma, and anxious and depressive symptoms. An exploratory factor analysis (EFA) was conducted. RESULTS: EFA results supported a 1-factor intrusiveness solution (α = .93), as well as a 2-factor solution measuring intrusiveness on daily living (α = .92) and community connectedness (α = .85). The 1-factor solution and both factors of the 2-factor solution demonstrated significant convergent validity with stigma as well as anxious and depressive symptoms. CONCLUSIONS: Support emerged for both 1- and 2-factor solutions of the IIS-P in parents of children with DSD. The decision to evaluate illness intrusiveness as a total score or to examine the subscales of daily living and community connectedness should be tailored to the unique aims of researchers and clinicians. Future research should conduct a confirmatory factor analysis with both 1- and 2-factor models with larger, more diverse samples of caregivers.
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Transtornos do Desenvolvimento Sexual , Pais , Humanos , Masculino , Feminino , Pais/psicologia , Adulto , Análise Fatorial , Transtornos do Desenvolvimento Sexual/psicologia , Estudos Longitudinais , Estigma Social , Depressão/psicologia , Psicometria , Ansiedade/psicologia , Pré-Escolar , Lactente , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: The present study aimed to identify distinct trajectories of parental illness uncertainty among parents of children born with atypical genital appearance due to a difference of sex development over the first year following diagnosis. It was hypothesized that four trajectory classes would emerge, including "low stable," "high stable," "decreasing," and "increasing" classes, and that select demographic, familial, and medical factors would predict these classes. METHODS: Participants included 56 mothers and 43 fathers of 57 children born with moderate to severe genital atypia. Participants were recruited from eleven specialty clinics across the U.S. Growth mixture modeling (GMM) approaches, controlling for parent dyad clustering, were conducted to examine classes of parental illness uncertainty ratings over time. RESULTS: A three-class GMM was identified as the best-fitting model. The three classes were interpreted as "moderate stable" (56.8%), "low stable" (33.0%), and "declining" (10.3%). Findings suggest possible diagnostic differences across trajectories. CONCLUSIONS: Findings highlight the nature of parents' perceptions of ambiguity and uncertainty about their child's diagnosis and treatment the year following their child's birth/diagnosis. Future research is needed to better understand how these trajectories might shift over the course of the child's development. Results support the development of tailored, evidence-based interventions to address coping with uncertainty among families raising a child with chronic health needs.
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Pais , Humanos , Masculino , Incerteza , Feminino , Pais/psicologia , Adulto , Pré-Escolar , Criança , Lactente , Transtornos do Desenvolvimento Sexual/psicologiaRESUMO
OBJECTIVE: Individuals with asthma experience increased depressive symptoms, which is associated with deleterious health outcomes. No studies have examined depressive symptom trajectories among individuals with asthma despite increased risk. This study expanded prior literature by identifying the following: (1) depressive symptoms trajectories for individuals with and without asthma and (2) predictors of baseline levels and changes in symptoms across time for individuals with asthma. METHODS: Adolescents with (N = 965) and without (N = 7,392) asthma self-reported on depressive symptoms (CESD-9) across development. Covariates included: demographics and persistence of asthma. Latent growth curve modeling (LGCM) was used to identify depressive symptom trajectories and their predictors. RESULTS: A multigroup LCGM identified no significant differences between depressive symptom trajectories of individuals with and without asthma. Depressive symptoms followed a quadratic shape across time for individuals with asthma (Mintercept = 5.73, p < .00; Mlinear = -0.38,p < .001; Mquad = 0.03, p < .001), with a linear deceleration in depressive symptoms during adolescence and an acceleration of symptoms into adulthood. Next predictors of depressive trajectories among individuals with asthma were examined. Female sex (B = 0.58, p < .001), lower parent education (B = -0.57, p < .001), older age (B = 0.19, p < .001), and identifying as Black (B = 0.31, p = .04) were associated with greater baseline depressive symptoms. Older individuals exhibited faster linear symptom decelerations (B = -0.56, p < .001) and faster symptom accelerations (B = 0.73, p < .001). American Indian (AIAN) individuals exhibited faster linear symptom decelerations (B = -1.98, p = .005) and faster quadratic accelerations (B = 3.33, p = .007). DISCUSSION: Our results suggest that the depressive symptom trajectories of individuals with asthma are curvilinear and similar to individuals without asthma. When examining predictors of depressive symptom trajectories for those with asthma, socioeconomic disadvantage and racial marginalization were associated with greater baseline depressive symptoms. Although AIAN youth demonstrated more favorable trajectories in adolescence, they also exhibited worse trajectories across young adulthood and adulthood. Findings suggest the need to better understand the impact of multilevel risk and protective factors on depressive symptoms trajectories for individuals with asthma, especially marginalized populations.
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Depressão , Grupos Raciais , Humanos , Adolescente , Feminino , Adulto Jovem , Adulto , Depressão/epidemiologia , Depressão/diagnóstico , Estudos Longitudinais , AutorrelatoRESUMO
OBJECTIVE: Illness uncertainty is a salient experience for caregivers of children with disorders/differences of sex development (DSD) presenting with ambiguous genitalia; however, no validated measure of illness uncertainty exists for this unique population. Thus, the current study aimed to preliminarily identify the factor structure of the Parental Perception of Uncertainty Scale (PPUS) in caregivers of children with DSD presenting with ambiguous genitalia and examine the convergent validity of the PPUS. METHODS: Participants included 115 caregivers (Mage = 32.12 years, SD = 6.54; 57% mothers) of children (<2-year-olds) diagnosed with DSD participating in a larger, longitudinal study. Caregivers completed the PPUS as well as self-report measures of anxious, depressive, and posttraumatic stress symptoms. An exploratory factor analysis was conducted. RESULTS: Exploratory factor analysis results indicated that a 23-item 1-factor solution was the most parsimonious and theoretically sound factor structure (α = 0.92). Convergent validity analyses demonstrated further support for the use of the 23-item 1-factor solution over the original PPUS factor structure. CONCLUSION: These results demonstrate the preliminary clinical and research utility of the PPUS with caregivers of children with DSD presenting with ambiguous genitalia. The PPUS may benefit from further refinement through qualitative research and item adaptation to capture uncertainties unique to DSD presenting with ambiguous genitalia. In addition, future research should replicate the proposed factor structure using confirmatory factor analysis with a separate, larger sample of caregivers of children with DSD to confirm the factor structure.
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Transtornos do Desenvolvimento Sexual , Feminino , Humanos , Criança , Pré-Escolar , Incerteza , Estudos Longitudinais , Transtornos do Desenvolvimento Sexual/diagnóstico , Ansiedade/diagnóstico , PaisRESUMO
OBJECTIVE: Differences/disorders of sex development (DSDs) are rare, congenital conditions involving discordance between chromosomes, gonads, and phenotypic sex and are often diagnosed in infancy. A key subset of parents of children newly diagnosed with a DSD experience clinically elevated distress. The present study examines the relationship between perinatal factors (i.e., gestational age, delivery method) and trajectories of parental adjustment. METHODS: Parent participants (mothers = 37; fathers = 27) completed measures at baseline, 6- and 12-month follow-up. Multilevel linear regression controlled for clustering of the data at three levels (i.e., time point, parent, and family) and examined the relationship between perinatal factors and trajectories of depressive and anxious symptoms. Two-way interactions between perinatal factors and parent type were evaluated. RESULTS: Overall depressive and anxious symptoms decreased over time. There were significant interactions between gestational age and parent type for depressive and anxious symptoms, with younger gestational age having a stronger negative effect on mothers vs. fathers. There was a significant interaction between time and gestational age for depressive symptoms, with 36 weeks' gestational age demonstrating a higher overall trajectory of depressive symptoms across time compared to 38 and 40 weeks. Findings for the delivery method were not significant. CONCLUSIONS: Findings uniquely demonstrated younger gestational age was associated with increased depressive symptoms, particularly for mothers compared to fathers. Thus, a more premature birth may predispose parents of infants with DSD to distress. Psychosocial providers should contextualize early diagnosis-related discussions within stressful birth experiences when providing support.
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Mães , Pais , Feminino , Lactente , Criança , Gravidez , Humanos , Masculino , Pais/psicologia , Mães/psicologia , Idade Gestacional , Desenvolvimento Sexual , Genitália , Pai/psicologia , Depressão/psicologiaRESUMO
Background: College students experience increased responsibility for healthcare transition. They are at increased risk for depressive symptoms and cannabis use (CU), potentially modifiable predictors of successful healthcare transition. This study investigated how depressive symptoms and CU related to transition readiness, and if CU moderated the association between depressive symptoms and transition readiness for college students. Methods: College students (N = 1,826, Mage=19.31, SD = 1.22) completed online measures of depressive symptoms, healthcare transition readiness, and past-year CU. Regression identified 1) the main effects of depressive symptoms and CU on transition readiness and 2) examined if CU moderated the relationship between depressive symptoms and transition readiness with chronic medical conditions (CMC) status as a covariate. Results: Higher depressive symptoms were correlated with past-year CU (r=.17, p<.001) and lower transition readiness (r=-0.16, p<.001). In the regression model, higher depressive symptoms were related to lower transition readiness (ß=-0.02, p<.001); CU was not related to transition readiness (ß=-0.10, p=.12). CU moderated the relationship between depressive symptoms and transition readiness (B=.01, p=.001). The negative relationship between depressive symptoms and transition readiness was stronger for those with no past-year CU (B=-0.02, p<.001) relative to those with a past-year CU (ß=-0.01, p<.001). Finally, having a CMC was related to CU and higher depressive symptoms and transition readiness. Conclusions: Findings highlighted that depressive symptoms may hinder transition readiness, supporting the need for screening and interventions among college students. The finding that the negative association between depressive symptoms and transition readiness was more pronounced among those with past-year CU was counterintuitive. Hypotheses and future directions are provided.
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Cannabis , Transição para Assistência do Adulto , Humanos , Depressão/diagnóstico , EstudantesRESUMO
Emerging adults with a chronic medical condition (CMC) are at increased risk for developing health anxiety (HA). Adverse childhood experiences (ACEs) have been linked to developing HA. CMCs and ACEs frequently co-occur among emerging adults. However, no known research has examined ACEs and HA within this critical developmental period. Further, increased negative illness appraisals (e.g., uncertainty, intrusivness) may partially explain the relation between ACEs and HA. The present study examined the following mediation model: ACEs â illness appraisals â HA. Emerging adults (N = 121) with a CMC completed self-report measures of demographics, ACEs, illness appraisals, and HA. Regression analyses were conducted to test each illness appraisal as a mediator between ACEs and HA. Results demonstrated significant indirect effects for both illness appraisals. Findings demonstrate greater ACEs may increase negative illness appraisals which heightens overall HA. Thus, these associations support trauma-informed care approaches to support emerging adults.
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Experiências Adversas da Infância , Adulto , Humanos , Ansiedade/epidemiologia , Transtornos de Ansiedade , Doença Crônica , AutorrelatoRESUMO
Inflammatory bowel disease (IBD) presents physical and emotional challenges for families and imposes significant lifestyle intrusions on both youth and parents. The present study examined the effects of IBD disease activity and youth illness intrusiveness on depressive symptoms in adolescents, and the moderating influence of parent illness intrusiveness on these associations. Adolescents and parents completed measures of illness intrusiveness; youth completed a measure of depressive symptoms. Physicians provided estimates of IBD disease activity. Mediation analysis revealed an IBD disease activity â youth intrusiveness â youth depressive symptoms indirect effect. Moderated mediation analyses revealed this indirect effect to be greater among youth whose parents endorsed more IBD-related intrusions. Youth encountering greater activity disruptions related to IBD are vulnerable to depressive symptoms. When parents also experience IBD-induced intrusions, youth are at even greater risk for depressive symptoms. Clinical implications are discussed within the context of youths' and parents' experiences of IBD.
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Depressão , Doenças Inflamatórias Intestinais , Humanos , Adolescente , Depressão/complicações , Depressão/psicologia , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/psicologia , Emoções , Pais/psicologia , Índice de Gravidade de DoençaRESUMO
OBJECTIVE: Adolescents and young adults in the college setting often report poor sleep hygiene and quality. These sleep difficulties may be related to emotion dysregulation, which is highly relevant to broader adjustment. The current study aimed to empirically identify latent groups of healthy college students with distinct subjective sleep patterns and examine differences in emotion dysregulation between subgroups. METHODS: College students (N = 476; Mage=19.38) completed the Adolescent Sleep-Wake Scale-Revised, Adolescent Sleep Hygiene Scale-Revised, and Difficulties in Emotion Dysregulation Scale. Most participants were White (78%), non-Hispanic/Latinx (85%), and female (77%). Latent profile analysis identified patterns of sleep with maximum likelihood estimation. Bolck-Croon-Hagenaars procedure evaluated differences in emotion dysregulation by class. RESULTS: A three-class model had optimal fit, Bayesian information criterion = 11,577.001, Bootstrapped Parametric Likelihood Ratio Test = -5,763.042, p < .001, entropy = .815. The three profiles identified were good sleep (overall high sleep quality and hygiene; n = 219), moderate sleep (low sleep quality with mix of low and high sleep hygiene; n = 221), and poor sleep (very low sleep quality and hygiene; n = 36). Those in the good sleep group (M = 68.06, SE = 1.5) reported significantly less emotion dysregulation than the moderate sleep group (M = 92.12, SE = 1.67; X2(2) = 98.34, p = .001) and the poor sleep group (M = 99.51, SE = 4.10; p < .001). The moderate and poor sleep groups did not significantly differ, X2(2) = 2.60, p = .11. CONCLUSIONS: Emotion dysregulation differed across three sleep profiles, with participants classified in the good sleep group reporting, on average, the lowest emotion dysregulation, compared to the moderate and poor sleep groups. These findings highlight contextual factors of sleep that may be clinically targeted to promote emotion regulation.
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Distúrbios do Início e da Manutenção do Sono , Transtornos do Sono-Vigília , Adolescente , Teorema de Bayes , Emoções , Feminino , Humanos , Sono , Transtornos do Sono-Vigília/psicologia , Universidades , Adulto JovemRESUMO
INTRODUCTION: Pediatric brain tumor survivors (PBTS) are at risk for both neurocognitive impairments and psychological difficulties, yet these two domains have historically been discretely examined, with assessment of psychosocial outcomes rarely included in studies of cognitive outcomes. Taking a person-centered approach, the current study aimed to more comprehensively evaluate PBTS late effect profiles, including both neurocognitive and psychological sequelae, and predictors of these profiles. METHOD: PBTS (N = 89) were assessed in a pediatric neuropsychological clinic between May 2009 and May 2018, diagnosed at least 1 year prior, and off-treatment for at least 3 months (Mage = 6.57 years, SD = 4.53; 46.1% female). Parent- and teacher-report of psychological symptoms, and performance-based measures of neurocognitive functioning were examined using latent profile analysis. The R3STEP procedure identified predictors of class membership. RESULTS: The optimal model identified four classes characterized by: (1) average functioning across all measures ("Average," n = 47), (2) average psychosocial functioning and impaired neurocognitive functioning ("Cognitive Deficit," n = 25), (3) elevated social problems and significant neurocognitive impairments ("Social/Cognitive Deficit," n = 9), and (4) impaired visual planning and problem-solving and elevated parent-reported psychosocial problems, but average processing speed, working memory, and teacher-reported psychosocial outcomes ("Discrepant," n = 8). Ethnicity, race, radiation treatment, and diagnoses of neurofibromatosis 1, hydrocephalus, and cerebellar mutism syndrome were significant predictors of class membership (ps < 0.05). CONCLUSION: The present study identified distinct phenotypes with unique patterns of relations among neurocognitive and psychological domains. These findings are a vital first step toward identifying those at highest risk for poor outcomes and informing interventions that effectively address interrelated treatment targets for specific groups.
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Neoplasias Encefálicas , Transtornos Cognitivos , Criança , Feminino , Humanos , Masculino , Memória de Curto Prazo , Testes Neuropsicológicos , Fenótipo , SobreviventesRESUMO
BACKGROUND: Youth who experience IBD-associated stigma may manifest increased worry about aversive symptoms that can intrude on their participation in routine activities (eg, school, social events), potentially resulting in limited opportunities for reinforcement and increased depressive symptoms. The present study examined an IBD stigmaâââIBD worryâââillness intrusivenessâââdepressive symptoms serial mediation model, in which stigma was hypothesized to confer an indirect effect on youth depressive symptoms through the serial effects of stigma on IBD worry and illness intrusiveness. METHODS: Youth with IBD (Nâ=â90) between the ages of 10 and 18 years were recruited from a pediatric gastroenterology clinic and completed measures of IBD stigma, IBD worry, illness intrusiveness, and depressive symptoms. RESULTS: In addition to several independent direct effects among the modeled variables, results revealed a significant IBD stigmaâââIBD worryâââillness intrusivenessâââdepressive symptoms serial mediation path (effect = 0.63, 95% CIâ=â0.22 to 1.20), controlling for youth sex and IBD severity. CONCLUSIONS: The experience of IBD-related stigma may prompt increased worry about IBD symptoms, independent of the influence of disease activity. Further, heightened worry appears to amplify youths' experience of IBD-imposed limitations on routine and rewarding activities, increasing their risk for experiencing depressive symptoms. Our findings highlight the importance of regular screening for depressive symptoms, as well as the identification of potential risk factors associated with emotional adjustment difficulties. Stigma-specific treatment modules could be integrated within existing cognitive-behavioral approaches for reducing worry and depressive symptoms in youth with IBD.
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Colite , Doenças Inflamatórias Intestinais , Adolescente , Ansiedade/etiologia , Criança , Depressão/etiologia , Humanos , Doenças Inflamatórias Intestinais/complicações , Estigma SocialRESUMO
OBJECTIVE: To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL). METHODS: Undergraduates (N = 359; Mage=19.51 years, SD = 1.31) with a self-reported CMC (e.g., asthma, allergies, irritable bowel syndrome) completed measures of demographics, HCU (e.g., presence of specialty or adult providers, recent medical visits), transition readiness, and mental HRQoL (MHC) and physical HRQoL (PHC). Latent class analysis identified four distinct patterns of HCU. The BCH procedure evaluated how these patterns related to transition readiness and HRQoL outcomes. RESULTS: Based on seven indicators of HCU, a four-class model was found to have optimal fit. Classes were termed High Utilization (n = 95), Adult Primary Care Physician (PCP)-Moderate Utilization (n = 107), Family PCP-Moderate Utilization (n = 81), and Low Utilization (n = 76). Age, family income, and illness controllability predicted class membership. Class membership predicted transition readiness and PHC, but not MHC. The High Utilization group reported the highest transition readiness and the lowest HRQoL, while the Low Utilization group reported the lowest transition readiness and highest HRQoL. CONCLUSIONS: The present study characterizes the varying degrees to which AYAs with CMCs utilize health care. Our findings suggest poorer PHC may result in higher HCU, and that greater skills and health care engagement may not be sufficient for optimizing HRQoL. Future research should examine the High Utilization subgroup and their risk for poorer HRQoL.
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Aceitação pelo Paciente de Cuidados de Saúde , Qualidade de Vida , Adolescente , Doença Crônica , Humanos , Análise de Classes Latentes , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. METHODS: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. RESULTS: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. CONCLUSIONS: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.
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Cuidadores , Neoplasias , Criança , Depressão , Ajustamento Emocional , Humanos , Lactente , Recém-Nascido , IncertezaRESUMO
OBJECTIVE: Examine the indirect association between parents' experience of stigma (i.e., associative stigma) and youth depressive symptoms through the serial effects of associative stigma on parent and youth illness intrusiveness in pediatric inflammatory bowel disease (IBD). METHODS: During routine clinic visits, 150 youth with well-controlled IBD (ages 10-18 years) completed measures of perceived illness intrusiveness and depressive symptoms. Parents completed measures of associative stigma and illness intrusiveness. Pediatric gastroenterologists provided ratings of IBD disease severity. RESULTS: Structural equation modeling revealed significant direct associations for associative stigma â parent illness intrusiveness, parent illness intrusiveness â youth illness intrusiveness, and youth illness intrusiveness â youth depressive symptoms. Results also revealed a significant associative stigma â parent illness intrusiveness â youth illness intrusivenessâ youth depressive symptoms serial mediation path, indicating that parents' experience of associative stigma indirectly influenced youth depressive symptoms through its sequential effects on parent and youth perceived illness intrusiveness. CONCLUSIONS: Parents who face stigma related to their child's IBD (i.e., associative stigma) are more likely to experience IBD-induced lifestyle intrusions (i.e., illness intrusiveness), which in turn is associated with youths' illness intrusiveness and ultimately youth depressive symptoms. These findings provide further evidence for the important role of illness-related stigma in pediatric IBD, particularly the transactional relation between parents' associative stigma and youths' illness appraisals and emotional functioning. The clinical implications of our results for addressing adjustment difficulties in youth with IBD are also discussed.
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Depressão , Doenças Inflamatórias Intestinais , Adolescente , Criança , Emoções , Humanos , Pais , Estigma SocialRESUMO
OBJECTIVE: This study identifies trajectories of parent depressive symptoms after having a child born with genital atypia due to a disorder/difference of sex development (DSD) or congenital adrenal hyperplasia (CAH) and across the first year postgenitoplasty (for parents who opted for surgery) or postbaseline (for parents who elected against surgery for their child). Hypotheses for four trajectory classes were guided by parent distress patterns previously identified among other medical conditions. METHODS: Participants included 70 mothers and 50 fathers of 71 children diagnosed with a DSD or CAH with reported moderate to high genital atypia. Parents were recruited from 11 US DSD specialty clinics within 2 years of the child's birth and prior to genitoplasty. A growth mixture model (GMM) was conducted to identify classes of parent depressive symptoms over time. RESULTS: The best fitting model was a five-class linear GMM with freely estimated intercept variance. The classes identified were termed "Resilient," "Recovery," "Chronic," "Escalating," and "Elevated Partial Recovery." Four classes have previously been identified for other pediatric illnesses; however, a fifth class was also identified. The majority of parents were classified in the "Resilient" class (67.6%). CONCLUSIONS: This study provides new knowledge about the trajectories of depressive symptoms for parents of children with DSD. Future studies are needed to identify developmental, medical, or familial predictors of these trajectories.
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Hiperplasia Suprarrenal Congênita , Pais , Criança , Genitália , HumanosRESUMO
PURPOSE: The transition to college is associated with numerous stressors, including environmental changes, increased academic expectations, and changes in social support, all of which may be exacerbated by the added responsibility of managing a chronic medical condition. Huang (2019) proposed a model examining the relationships between coping styles, transition readiness, and health anxiety, and suggested that greater transition readiness is associated with adaptive coping strategies and less health anxiety. However, there are limited findings as to how poor transition readiness relates to health anxiety. Therefore, the current study tested a serial mediation model (i.e., poor transition readiness â avoidance coping â illness uncertainty â health anxiety). DESIGN AND METHODS: College students (N = 194) with a chronic medical condition completed self-report questionnaires. RESULTS: Results indicated several direct effects among the modeled variables and a significant poor transition readiness â avoidance coping â illness uncertainty â health anxiety serial mediation (path a1d21b2 = 0.438, 95% CI = 0.153 to 0.913). CONCLUSIONS: Worse transition readiness was associated with increased avoidance as a coping mechanism, which in turn is associated with increased illness uncertainty, and ultimately health anxiety. The current findings identified possible drivers of health anxiety in college students with a chronic medical condition. PRACTICE IMPLICATIONS: These findings highlight that good transition readiness skills may buffer against maladaptive avoidance, illness uncertainty, and health anxiety. Modules aimed at improving healthcare management, avoidance, and illness uncertainty may be beneficial additions to interventions to reduce health anxiety.
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Adaptação Psicológica , Ansiedade , Ansiedade/prevenção & controle , Transtornos de Ansiedade , Humanos , Apoio Social , Inquéritos e Questionários , IncertezaRESUMO
PURPOSE: The stigmatizing nature of IBD symptoms may place youth at risk for being targets of peer victimization, potentially resulting in a decreased sense of social belongingness and poorer emotional adjustment. The present study tested a series of mediation and moderated mediation models examining the associations among peer victimization, thwarted social belongingness, and depressive symptoms, as well as the moderating role of IBD stigma in these associations. We hypothesized peer victimization would have an indirect effect on youth depressive symptoms through thwarted belongingness, and this effect would be amplified for youth endorsing greater IBD stigma. DESIGN AND METHODS: Seventy-five youth (10-18 yrs.) diagnosed with IBD were recruited from a pediatric gastroenterology clinic. Participants completed self-report measures of IBD stigma, peer victimization, thwarted belongingness, and depressive symptoms. RESULTS: As anticipated, mediation analyses revealed a significant peer victimization â thwarted belongingness â depressive symptoms indirect path. Moderated mediation analyses indicated that this indirect effect was moderated by IBD stigma and was significantly greater among youth reporting higher IBD stigma. CONCLUSIONS: Youth who experience higher levels of IBD-related stigma are at increased risk for depressive symptoms as a function of the socially isolating effects of peer victimization. PRACTICE IMPLICATIONS: Our findings highlight the need for routine screening and identification of the socioemotional challenges faced by youth with IBD. Clinical interventions that incorporate coping strategies aimed at minimizing youths' stigmatizing self-perceptions and improving overall social skills and social engagement may lessen the negative impact of peer victimization on youths' social and emotional adjustment.
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Bullying , Vítimas de Crime , Doenças Inflamatórias Intestinais , Adolescente , Criança , Depressão/diagnóstico , Depressão/epidemiologia , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Grupo Associado , Estigma SocialRESUMO
OBJECTIVE: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings. METHODS: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months. RESULTS: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms. CONCLUSION: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care.
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Ansiedade/psicologia , Depressão/psicologia , Acessibilidade aos Serviços de Saúde , Neoplasias/psicologia , Neoplasias/terapia , Pais/psicologia , Angústia Psicológica , Incerteza , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Pediatric brain tumor survivors (PBTS) are at significant risk for psychological adjustment difficulties, including greater depressive and anxious symptomology. Systematic reviews have identified this heightened risk among youth with medical conditions, but these reviews have not been specific to PBTS. Therefore, the current study aimed to directly examine the psychological adjustment of PBTS as compared to healthy peers. PROCEDURE: A systematic review and meta-analysis was conducted using PubMed, PsychInfo, and Academic Search Premier databases. The search yielded 2833 articles, with 22 articles meeting inclusion criteria. RESULTS: A statistically significant overall medium effect size (Hedge's g = 0.32) indicated that PBTS exhibited poorer overall psychological adjustment relative to healthy comparison groups. Studies that included younger children were associated with larger between-group differences. When evaluating specific outcomes, PBTS had relatively higher levels of depressive symptoms (Hedge's g = 0.36), anxious symptoms (Hedge's g = 0.11), and general distress (Hedge's g = 0.22), but not more externalizing problems. CONCLUSIONS: The present study confirmed that PBTS are indeed at greater risk for psychological adjustment difficulties relative to healthy comparison groups. These findings highlight the importance of psychosocial screening among this population. Given that depressive symptoms were the most elevated relative to healthy peers, investigation of such symptomatology among PBTS is particularly important.