ABSTRACT
OBJECTIVE: End of pediatric cancer treatment requires family adjustment. Caregivers who struggle to incorporate the child's condition into family life have poorer family outcomes. To better understand factors that contribute to successful transition off active childhood cancer treatment, we sought to examine caregiver perceived management ability of the youth's condition and family functioning as predictors of caregiver distress, evaluate family functioning as a mediator between perceived ability and distress, and explore race and ethnicity as a moderator between perceived ability and family functioning. METHODS: Caregivers (N = 141) completed measures assessing family management (condition management ability; CMA), family functioning, and distress as part of a clinical education and screening program within 1 year of the end of treatment. Bias-corrected bootstrap regression analyses examined mediation and moderated mediation models with patient race and ethnicity as the moderator. RESULTS: The overall mediation model was statistically significant for CMAâfamily functioningâdistress. Race and ethnicity moderated the relationship between CMA and family functioning, but the full model was not significant. CMA was related to family functioning for caregivers of non-Hispanic white youth, but not caregivers of Hispanic youth. Family functioning was related to distress for all caregivers. CONCLUSIONS: Family functioning serves as an initial intervention target to reduce caregiver distress. Caregiver perceived management ability of their child's condition is a meaningful predictor of family functioning and distress for caregivers of non-Hispanic white youth, yet CMA may be limited as a screener of family management patterns for diverse populations, and other family management dimension may be more applicable.
Subject(s)
Caregivers , Neoplasms , Adolescent , Humans , Child , Ethnicity , Neoplasms/therapy , Family Relations , Regression AnalysisABSTRACT
OBJECTIVE: Emerging research suggests that completion of pediatric cancer treatment can be challenging for caregivers given shifting roles and responsibilities. Lower caregiver quality of life (QOL) has been associated with cancer-related variables, higher cancer caregiving strain, and more household material hardship during pediatric cancer treatment. Caregiver QOL at the end of treatment has not been fully investigated but has implications for child and family well-being. Using a psycho-oncology framework, this study aimed to understand the cumulative burden of household material hardship and cancer-related factors on caregiver QOL at the end of treatment. METHODS: Caregivers (N = 143) of children (Mage=10.51 years) within 1 year of ending active cancer treatment completed self-report questionnaires assessing their QOL, cancer-specific worry, and material hardship (e.g., housing, insurance). Total months of active cancer treatment were extracted from the medical record. Hierarchical linear regression was used to test the relative effects of length of treatment, material hardship, and cancer-specific worry on caregiver QOL. RESULTS: Cancer-specific worry was significantly associated with and accounted for significant variance in caregiver QOL, above and beyond the length of treatment and material hardship. Caregivers who endorsed more cancer-specific worry had poorer QOL. Material hardship was also significantly associated with caregivers' QOL, but length of treatment was not. CONCLUSIONS: Caregivers with sufficient resources and less worry about cancer have higher QOL. Findings highlight the importance of end-of-treatment screening of caregivers' subjective cancer-specific worry in addition to material hardship, irrespective of their cancer-related stressors, for ongoing psychosocial support.
Subject(s)
Anxiety , Caregivers , Neoplasms , Quality of Life , Humans , Quality of Life/psychology , Caregivers/psychology , Neoplasms/psychology , Neoplasms/therapy , Female , Male , Child , Adult , Anxiety/psychology , Adolescent , Middle Aged , Surveys and Questionnaires , Cost of IllnessABSTRACT
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.
Subject(s)
Parents , Humans , Male , Uncertainty , Female , Parents/psychology , Adult , Child, Preschool , Child , Infant , Disorders of Sex Development/psychologyABSTRACT
OBJECTIVE: The pediatric cancer Psychosocial Standards of Care calls for psychosocial screening across the cancer trajectory. The current study aims to describe pediatric cancer family needs at the end of treatment (EOT) and summarize feedback on a clinical EOT screening and education program. METHODS: During a clinic visit, families attended an education session regarding general EOT considerations and caregivers and youth aged 11+ years completed questionnaires. Scores were coded for clinical significance based on cutoff scores per questionnaire, and clinical significance frequencies were calculated. Caregivers provided qualitative feedback on the EOT program via an open-ended prompt. RESULTS: Screening was completed by 151 families. Ninety-four patients (67.1%) endorsed risk by self- or proxy-report in at least one domain. Across all patient age groups, a symptom of neurocognitive functioning was the most frequently endorsed risk, including executive functioning, sustained focused, and thinking slower than others. For caregivers, 106 (74.1%) endorsed risk in at least one domain, with concerns for ability to manage their child's medical condition as the most frequent endorsement. Families were agreeable to an EOT program with many caregivers advocating for receiving this program earlier. CONCLUSIONS: Both patients and caregivers experienced clinically significant needs that require intervention at EOT. While patients are experiencing neurocognitive effects and distress, their caregivers are balancing management of their own distress with management of their child's needs during a transition to decreased support from the medical team. The findings affirm the need for systematic screening at EOT and anticipatory guidance for off treatment expectations.
ABSTRACT
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.
Subject(s)
Patient Acceptance of Health Care , Quality of Life , Adolescent , Chronic Disease , Humans , Latent Class Analysis , Surveys and Questionnaires , Young AdultABSTRACT
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.
Subject(s)
Depression , Inflammatory Bowel Diseases , Adolescent , Child , Emotions , Humans , Parents , Social StigmaABSTRACT
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.
Subject(s)
Adrenal Hyperplasia, Congenital , Parents , Child , Genitalia , HumansABSTRACT
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.
Subject(s)
Anxiety/psychology , Depression/psychology , Health Services Accessibility , Neoplasms/psychology , Neoplasms/therapy , Parents/psychology , Psychological Distress , Uncertainty , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Male , Middle AgedABSTRACT
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.
Subject(s)
Brain Neoplasms/psychology , Cancer Survivors/psychology , Emotional Adjustment/physiology , Quality of Life , Brain Neoplasms/therapy , Child , Humans , Prognosis , Survival RateABSTRACT
OBJECTIVE: A subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child's DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child's DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry. METHODS: One hundred and thirteen caregivers (Mage = 32.12; 57.5% mothers; 72.6% Caucasian) of children (N = 70; Mage = 9.81 months; 65.7% female) with DSD were recruited from 12 DSD specialty clinics in the United States. Caregivers completed psychosocial measures at baseline, 6 and 12 months following genitoplasty, or study entry if parents elected not to have surgery for their child. RESULTS: Caregiver illness uncertainty and both anxious and depressive symptoms were highest at baseline and decreased over time (ps < .05). Caregiver illness uncertainty predicted symptoms of anxious and depressive symptoms across all time points (ps < .05). CONCLUSIONS: Caregivers' perceptions of uncertainty about their child's DSD are highest soon after diagnosis, and uncertainty continues to predict both anxious and depressive symptoms across time. Thus, the initial diagnostic period is a critical time for psychological assessment and intervention, with parent illness uncertainty being an important clinical target.
Subject(s)
Caregivers , Parents , Anxiety/diagnosis , Child , Child, Preschool , Cross-Sectional Studies , Depression/diagnosis , Female , Humans , Male , UncertaintyABSTRACT
PROBLEM: Pediatric cancer places both parents and children at risk for psychosocial difficulties, including a specific risk for diminished quality of life. Previous research has identified relationships between parent and child psychosocial adjustment outcomes (e.g., depression, anxiety), yet the relationships between parent adjustment and child quality of life have yet to be comprehensively evaluated via meta-analysis. ELIGIBILITY CRITERIA: A systematic review and meta-analysis were conducted using EBSCO, with PsychINFO, MEDLINE, Academic Search Premiere, and Health Source: Nursing/Academic Edition. SAMPLE: Fourteen studies met inclusion criteria. RESULTS: Fourteen correlations from 1646 parents of children with cancer were evaluated, resulting in a medium-magnitude correlation between parent psychosocial adjustment and child quality of life (râ¯=â¯0.23, pâ¯<â¯.001). Additional analyses evaluating the relationship between parent psychosocial adjustment and child social/emotional quality of life resulted in a medium-magnitude correlation (râ¯=â¯0.24, pâ¯<â¯.001). CONCLUSIONS: A significant relationship exists between parent psychosocial adjustment and child quality of life. However, this relationship appears slightly less strong than those found in meta-analyses evaluating other child psychosocial adjustment outcomes. IMPLICATIONS: Parent distress is an important factor to evaluate in the context of pediatric cancer, as it appears to have implications for child quality of life, in addition to other child psychosocial adjustment outcomes.
Subject(s)
Neoplasms/psychology , Parents/psychology , Quality of Life , Stress, Psychological/psychology , Child , Humans , Parent-Child RelationsABSTRACT
Adverse childhood experiences (ACEs) are known to contribute to long-term harmful effects on mental health in young adults. Research has demonstrated that having a chronic medical condition (CMC) can also be conceptualized as being a potentially traumatic experience, and that young adults with a CMC are also at risk for negative adjustment. Emotion dysregulation, or difficulty identifying and regulating one's emotions, is common among individuals with ACEs, and is a predictor of young adult adjustment. Given the mediational link between ACEs, emotion dysregulation, and young adult adjustment, it is likely that emotion dysregulation may demonstrate a similar linkage to adjustment in individuals with a CMC. The current study compared the effects of ACEs and having a CMC on depressive and anxious symptoms, while also examining emotion dysregulation as a possible mediator for both ACEs and CMC on adjustment outcomes, specifically depressive and anxious symptoms. College students (N = 1911) completed online questionnaires that assessed history of ACEs, emotion regulation difficulties, adjustment, and chronic illness status. Path analyses demonstrated a significant correlation between ACEs and depressive and anxious symptoms, as well as having a CMC and depressive and anxious symptoms. Furthermore, emotion dysregulation demonstrated a significant mediation between ACEs and negative adjustment, as well as between having a CMC and negative adjustment. This study highlights the importance of emotion dysregulation in understanding outcomes for individuals with a CMC and/or ACEs.
Subject(s)
Adverse Childhood Experiences/statistics & numerical data , Emotions , Adolescent , Anxiety/psychology , Child , Female , Humans , Male , Mental Health , Students/psychology , Surveys and Questionnaires , Young AdultABSTRACT
PURPOSE: We evaluated demographic, financial and support predictors of distress for parents of young children with disorders of sex development including atypical genital development, and characterized early parental experiences. This work extends our previous findings to identify those parents at risk for distress. MATERIALS AND METHODS: Participants included mothers (76) and fathers (63) of a child (78) diagnosed with disorders of sex development characterized by moderate to severe genital atypia. Parents completed a demographic questionnaire, measures of anxious and depressive symptoms, quality of life, illness uncertainty and posttraumatic stress symptoms, and rated their satisfaction with the appearance of their child's genitalia. RESULTS: Depressive and posttraumatic stress symptoms of caregivers were comparable to standardized norms while levels of anxious symptoms were below norms. A subset of parents reported clinically elevated symptoms. Overall 26% of parents reported anxious symptoms, 24% reported depressive symptoms and 17% reported posttraumatic stress symptoms. Levels of illness uncertainty were lower than those of parents of children with other chronic illnesses. Differences by parent sex emerged, with mothers reporting greater distress. Lower income, increased medical care and travel expenses, and having no other children were related to increased psychosocial distress. CONCLUSIONS: Early psychosocial screening is recommended for parents of children with disorders of sex development. Clinicians should be aware that financial burden and lack of previous parenting experience are risk factors for distress.
Subject(s)
Disorders of Sex Development/psychology , Parents/psychology , Quality of Life , Stress, Psychological/etiology , Adult , Child, Preschool , Disorders of Sex Development/complications , Female , Humans , Incidence , Infant , Male , Prognosis , Risk Factors , Stress, Psychological/epidemiology , Stress, Psychological/psychology , United States/epidemiologyABSTRACT
OBJECTIVE: Adolescents/Young Adults (AYAs) with a chronic illness display elevated risk for poor psychosocial outcomes, yet relatively little is known about factors that place these individuals at risk. Illness intrusiveness is a known predictor of negative psychosocial outcomes in AYAs. Illness-related stigma, an understudied concept in this population, may also be a key contributor to increased intrusiveness. The present study sought to determine if higher levels of illness-related stigma would be associated with higher levels of depressive and anxious symptoms in AYAs with a chronic illness, and whether this relationship would be mediated by illness intrusiveness. METHODS: College students with a chronic illness completed measures of illness-related stigma, illness intrusiveness, and both depressive and anxious symptoms. RESULTS: A path model indicated that stigma was significantly related to illness intrusiveness, and illness intrusiveness was significantly related to depressive and anxious symptoms. Both indirect paths from stigma to depressive and anxious outcomes were significant. There were also significant direct effects of stigma on depressive and anxious outcomes. An additional path model was tested to assess anxious and depressive outcomes as multidimensional factors by evaluating the individual factors of both scales as outcomes. This model revealed similar results. CONCLUSIONS: Findings support previous research indicating relationships between stigma, illness intrusiveness, and negative psychosocial outcomes, with illness intrusiveness serving as a possible mediator between illness-related stigma and depressive and anxious symptoms.
Subject(s)
Adaptation, Psychological , Attitude to Health , Chronic Disease/psychology , Cost of Illness , Social Stigma , Adolescent , Adult , Anxiety/psychology , Depression/psychology , Female , Humans , Male , Severity of Illness Index , Students/psychology , Students/statistics & numerical data , Young AdultABSTRACT
OBJECTIVE: Parents and children affected by pediatric cancer are at risk for psychological distress, including depression, anxiety, and post-traumatic stress. A link is believed to exist between parent and child distress; however, no systematic analysis of this relationship has occurred. A meta-analysis was conducted to assess the relationship between parent and child distress among families affected by pediatric cancer. METHODS: A systematic review and meta-analysis was conducted using EBSCO (searching PsycINFO, MEDLINE, Academic search Premiere, and Health Source: Nursing/Academic Edition) and PubMed. The initial search yielded a total of 29,118 articles. Inclusion criteria were that studies assessed the relation between parent and child distress in the context of pediatric cancer, were written in English, and were published in peer-reviewed journals. 28 articles met inclusion criteria. RESULTS: A statistically significant association was found between overall parent and child distress (r = .32, p < .001), such that increased parent-reported distress was associated with increased distress in their children. Significant relationships were also present among each type of parental distress (i.e., depression, anxiety, post-traumatic stress, and global distress; rs = .31-.51, ps < .001) and overall child distress. Moderation analyses via meta-regression indicated that parent proxy-report of child symptoms was associated with a stronger relationship between parent and child distress than child self-report of their own distress. CONCLUSIONS: Aligned with the social-ecological framework, familial factors appear to be highly relevant in understanding distress following pediatric cancer diagnosis. Indeed, greater parent distress was associated with greater child distress.
Subject(s)
Anxiety/psychology , Neoplasms/psychology , Parent-Child Relations , Parents/psychology , Stress, Psychological/psychology , Adult , Child , Depression/psychology , Female , Humans , MaleABSTRACT
Parents of children with disorders of sex development (DSD) report significant psychological distress, including posttraumatic stress symptoms (PTSS), with mothers consistently reporting higher rates of psychological distress than fathers. However, psychological factors contributing to PTSS in both parents are not well understood. The present study sought to fill this gap in knowledge by examining PTSS and illness uncertainty, a known predictor of psychological distress, in parents of children recently diagnosed with DSD. Participants were 52 mothers (Mage = 32.55 years, SD = 5.08) and 41 fathers (Mage = 35.53 years, SD = 6.78) of 53 infants (Mage = 9.09 months, SD = 6.19) with DSD and associated atypical genital development. Participants were recruited as part of a larger, multisite study assessing parents' psychosocial response to their child's diagnosis of DSD. Parents completed measures of illness uncertainty and PTSS. Mothers reported significantly greater levels of PTSS, but not illness uncertainty, than fathers, and were more likely than fathers to report clinical levels of PTSS (21.2% compared to 7.3%). Hierarchical regression revealed that parent sex, undiagnosed or unclassified DSD status, and illness uncertainty were each associated with PTSS. The overall model accounted for 23.5% of the variance associated with PTSS. Interventions targeting illness uncertainty may be beneficial for parents of children with newly diagnosed DSD.
Subject(s)
Disorders of Sex Development/psychology , Stress Disorders, Post-Traumatic/diagnosis , Uncertainty , Adult , Female , Humans , Infant , Male , Parent-Child RelationsABSTRACT
Exposure to secondhand smoke (SHSe) can compound an already challenging set of health problems for youth with Sickle Cell Disease (SCD). Exposure to electronic cigarettes may also impact SCD symptomology and respiratory functioning. This study built on these previous findings by a) utilizing two objective measures of SHSe, salivary cotinine and exhaled carbon monoxide and b) examining the association of SHSe with emergency department utilization, physician-reported sickle cell crises, and pulmonary functioning. Caregivers (N = 31 dyads; Mage = 37.6 years; SD = 8.5 years) of youth with SCD (Mage = 9.0 years; SD = 4.5 years) completed self-report measures of tobacco/nicotine use. Youth provided a saliva sample to assess cotinine levels, and performed pulmonary function tests. Dyads provided breath samples for measurement of eCO. A chart review was conducted to obtain medical history and utilization. Majority of youth (88%) were exposed to SHS via salivary cotinine. Interestingly, no significant associations were observed between youth cotinine levels and emergency department utilization, physician-reported sickle cell crises, or pulmonary functioning. Present findings indicate a need to assess for SHSe using objective assessment measures. Future research should investigate which specific factors contribute to increase SHSe/SHVe in youth with SCD.
Subject(s)
Anemia, Sickle Cell , Carbon Monoxide/metabolism , Cotinine/metabolism , Patient Acceptance of Health Care , Tobacco Smoke Pollution , Adolescent , Child , Emergency Service, Hospital , Female , Humans , Male , Respiratory Function Tests , Saliva/chemistryABSTRACT
Objective: Adolescents and young adults (AYAs) with chronic medical conditions are at increased risk for a host of negative psychosocial outcomes, including depressive and anxious symptoms. Although studies have shown that illness appraisals (e.g., illness intrusiveness [II] and illness uncertainty [IU]) demonstrate consistent associations with such outcomes, few studies have examined positive factors that may relate to better psychosocial outcomes and appraisals. The present study evaluated grit (i.e., perseverance and passion for long-term goals), a novel construct in pediatric psychology, as a positive factor that relates to reduced untoward effects of II and IU on psychosocial outcomes in AYAs with chronic medical conditions. Methods: College students with a chronic medical condition (N = 120) completed questionnaires online, including measures of grit, II, IU, depression, anxiety, and emotional well-being (EWB). Results: The overall path analysis demonstrated that increased grit is directly associated with decreased depressive and anxious symptoms and increased EWB (p < .05). Further, analyses indicated that the positive association between grit and psychosocial outcomes is partially mediated by illness appraisals (p < .05). Conclusions: This study identified grit as a positive personal asset among AYAs with chronic medical conditions. By introducing a novel construct to the AYA literature, the study expands on the integration of positive psychology and pediatric psychology and underscores the need for greater research on the role of grit in chronic medical condition populations.
Subject(s)
Anxiety/psychology , Chronic Disease/psychology , Depression/psychology , Personal Satisfaction , Quality of Life/psychology , Resilience, Psychological , Adolescent , Adult , Female , Humans , Male , Universities , Young AdultABSTRACT
OBJECTIVE: Caregivers of pediatric cancer patients are at risk for posttraumatic stress symptoms (PTSS). Previous literature has identified caregiver illness uncertainty as a predictor of PTSS, yet little is known about the mechanism by which illness uncertainty may affect PTSS. Rumination, or perseverations about the cause and consequences of an event, has been related to posttraumtic stress disorder in other populations. However, limited research of this relationship exists for pediatric cancer caregivers. Further, no studies have evaluated rumination in relation to illness uncertainty. The current study examined rumination in relation to illness uncertainty and PTSS in caregivers with children actively receiving treatment for cancer. It was hypothesized that rumination would be related to illness uncertainty and would mediate the relationship between illness uncertainty and PTSS. METHODS: Caregivers (N = 59) completed the Parent Perception of Uncertainty Scale, Ruminative Responses Scale, and the Impact of Event Scale-Revised. RESULTS: illness uncertainty was identified as a significant predictor of rumination (B = 0.148, p = .015), and rumination was a significant predictor of PTSS (B = 1.83, p < .001). Biased-corrected bootstrap regression analysis revealed that rumination mediated the relationship between illness uncertainty and PTSS (R2 = 0.53, p < .001). CONCLUSIONS: Rumination was identified as a mediator between the relationship of illness uncertainty and PTSS. These findings underscore the importance of rumination in caregivers of children with cancer, as a potential construct for identifying caregivers at risk of PTSS, and as a possible mechanism for targeted intervention.
Subject(s)
Caregivers/psychology , Neoplasms/psychology , Parents/psychology , Stress Disorders, Post-Traumatic/etiology , Adult , Child , Female , Humans , Male , Middle Aged , Neoplasms/pathology , Stress Disorders, Post-Traumatic/psychologyABSTRACT
CONTEXT: Pediatric thyroid cancer (TC) incidence rates are increasing, yet TC has one of the highest survival rates. Despite increased prevalence, little is known about youth adjustment to TC, particularly compared to other pediatric cancers. OBJECTIVE: The current study sought to describe health-related quality of life (HRQoL) in pediatric TC patients early after diagnosis compared to other pediatric cancer patients and healthy youth and examine predictors of HRQoL. METHODS: Pediatric TC patients (ages 8.5-23.4 years) and their caregivers from a pediatric thyroid center completed psychosocial questionnaires as part of a clinic-based screening program around time of surgery. TC HRQoL was compared to other pediatric cancer and healthy youth reported norms. Clinical and demographic data extracted from the medical record were examined for predictors of HRQoL. The main outcome measures included the Pediatric Quality of Life Inventory (PedsQL) and Distress Thermometer. RESULTS: Findings evidenced significantly higher HRQoL for TC patients than other pediatric cancers for all but emotional and school functioning. Compared to healthy youth, TC patients reported significantly lower functioning, except comparable social functioning. No significant differences in HRQoL were identified based on disease severity, thyroid disease history, or treatment. Patient distress was associated with HRQoL. CONCLUSION: The findings suggest general resilience in TC patients compared to youth with other cancers, yet worse HRQoL than peers. Early universal screening is warranted due to a short TC treatment regimen. If administrative barriers preclude comprehensive screening, the single-item Distress Thermometer may identify patients for further comprehensive screening.