Improvements in Psychosocial Outcomes Following a Summer Camp for Youth with Bleeding Disorders and Their Siblings.

PURPOSE: Complications from bleeding episodes from hemophilia can interfere with children's lives and lead to negative psychosocial outcomes. The purpose of this study is to evaluate whether attitude toward illness, hope, perception of illness benefit and/or burden, and/or illness knowledge change for youth with bleeding disorders and their siblings following a five-day education and activity focused summer camp. We hypothesized that youth with bleeding disorders' attitude toward illness, hope, perception of illness benefit, and illness knowledge would improve after camp attendance, and perception of illness burden would decease after camp attendance. We hypothesized that siblings' hope and illness knowledge would improve after camp attendance. DESIGN AND METHODS: A total of 98 youth (M = 10.9, SD = 3.33, 61.2% male) who attended a bleeding disorder summer camp participated in this study. Fifty percent of participants were diagnosed with either Hemophilia A, Hemophilia B (5%), Von Willebrand Disease (VWD) (28.3%), or platelet deficiency (1.7%), with 38 campers consisting of healthy siblings. The camp hosted "Learning about Hemophilia" breakout sessions for campers. Participants completed self-report questionnaires on the first day and last day of camp. RESULTS: Of participants with bleeding disorders, illness knowledge, perception of illness benefit, and attitude toward their illness significantly improved from pre-camp to post-camp. Hope did not significantly improve among youth with bleeding disorders. Healthy siblings' total hope significantly improved while illness knowledge remained constant. CONCLUSIONS: Summer camps are a promising intervention to improve psychosocial outcomes in youth with hemophilia and WVD. CONCLUSIONS: Summer camps are a promising intervention to improve psychosocial outcomes in youth with hemophilia and WVD.

The relationship of self-compassion and hope with quality of life for individuals with bleeding disorders.

INTRODUCTION: Minimal research has been conducted examining the relationship of positive psychology variables with quality of life (QOL) for individuals with bleeding disorders. While many individuals manage their bleeding disorders well, some are at higher risk of developing psychosocial complications due to the daily stressors of managing illness-related symptoms. AIM: The purpose of this study is to better understand the relationships between two positive psychology variables, self-compassion and hope and QOL (overall, psychosocial and physical) among individuals diagnosed with bleeding disorders. METHODS: Participants completed a survey identifying demographic information as well as rating scales of self-compassion, hope and quality of life. We conducted Pearson correlational and standard multiple regression analyses to explore the bivariate and linear relationships between the aforementioned variables in a sample of 86 patients with bleeding disorders between the ages of 15 and 65. RESULTS: Self-compassion and hope were significantly related to QOL. Together, self-compassion and hope were predictive of overall QOL, psychosocial QOL and physical QOL. However, hope was the only individual predictor of all three QOL dimensions. CONCLUSION: Due to the significant relationships found between self-compassion, hope and QOL in this sample, it may be beneficial to incorporate positive psychology factors into the treatment of those diagnosed with bleeding disorders, especially those at higher risk for decreased QOL.

Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress.

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.

Improvements in Hope and Beliefs about Illness Following a Summer Camp for Youth with Chronic Illnesses.

This study evaluated changes in hope, attitude toward illness, and perceptions of illness benefit and burden following participation in a summer camp designed for youth with a variety of chronic illnesses. Participants were 62 youth campers (Age M = 13.45 years, SD = 2.41) with a variety of chronic illnesses. For youth who began camp low in hope about future goal attainment, participation in optional camp activities negatively predicted post-camp hope about future goal attainment. This relation was nonsignificant for campers who began camp high in hope. We found no significant changes in attitude toward illness or perceptions of illness benefit or burden. This study provides an important contribution to burgeoning research on summer camps designed for children with varying chronic illnesses. Findings were inconsistent with previous studies on chronic illness summer camp outcomes. Further work is needed to identify camp components that are related to desirable psychosocial outcomes for youth with chronic illnesses.

Preliminary exploration of secondhand smoke exposure in youth with Sickle Cell Disease: biochemical verification, pulmonary functioning, and health care utilization.

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.

Post traumatic stress symptoms in parents of children with cancer: A mediation model.

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.

Parent illness appraisals, parent adjustment, and parent-reported child quality of life in pediatric cancer.

Psychosocial distress is a salient construct experienced by families of children with newly diagnosed cancer, but little is known about parental appraisal of the child's illness and the subsequent impact this may have on child and parent functioning. The goal of the present study was to examine the interrelationships among multiple parent illness appraisals, parent adjustment outcomes, and parent-reported child quality of life in parents of children diagnosed with cancer. Parents completed measures of illness appraisal (illness uncertainty and attitude toward illness), parent adjustment (general distress, posttraumatic stress, parenting stress), and child quality of life (general and cancer-related). Path analysis revealed direct effects for parent illness uncertainty and illness attitudes on all 3 measures of parent adjustment. Illness uncertainty, but not illness attitudes, demonstrated a direct effect on parent-reported child general quality of life; parenting stress had direct effects on general and cancer-related quality of life. Exploratory analyses indicated that parent illness uncertainty and illness attitudes conferred indirect effects on parent-reported general and cancer-related quality of life through parenting stress. Negative parent illness appraisals appear to have adverse impacts on parents' psychosocial functioning and have implications for the well-being of their child with cancer.

Illness Uncertainty, Global Psychological Distress, and Posttraumatic Stress in Pediatric Cancer: A Preliminary Examination Using a Path Analysis Approach.

OBJECTIVE: To investigate the relationship of illness uncertainty (IU) to global psychological distress (GPD) and posttraumatic stress symptomatology (PTSS) using a path analysis approach. METHODS: Participants were 105 caregivers (MAge = 36.9 years, standard deviation [SD] = 8.7) of children (MAge = 8.6 years, SD = 5.0) with newly diagnosed cancer. A path analysis model examined the indirect and direct effects of each IU subscale on PTSS through GPD. RESULTS: The final model accounted for 47.30% of the variance in PTSS, and the ambiguity facet of IU had a significant indirect effect on PTSS through GPD. Lack of clarity and unpredictability were not significant predictors. CONCLUSIONS: Ambiguity experienced by parents may be salient in the development of PTSS. Future research should examine these relationships longitudinally in larger samples to better understand adjustment in parents of children with cancer.

Risk for household safety hazards: Socioeconomic and sociodemographic factors.

INTRODUCTION: Many unintentional injuries to young children occur in the home. The current study examines the relation between family socioeconomic and sociodemographic factors and risk factors for home injury. METHODS: Presence of household hazards was examined in 80 families with toddler-aged children. Parental ability to identify household hazards in pictures was also assessed. ANOVAs and Pearson product-moment correlations examined the relationship between presence of household hazards, knowledge to identify hazards, and factors of yearly family income, parental age, parental education, parental marital status, child ethnicity, and the number of children living in the home. RESULTS: A greater number of hazards were found in the homes of both the lowest and highest income families, but poorer knowledge to identify household hazards was found only among parents of the lowest income families and younger parents. Across family socioeconomic status, parent knowledge of hazards was related to observed household hazards. CONCLUSIONS: The relationship between family income and risk for injury is complex, and children of both lower and higher SES families may be at risk for injury. PRACTICAL APPLICATIONS: While historically particular focus has been placed on risk for injury among children in low income families, injury prevention efforts should target reducing presence of household hazards in both high and low SES families.

Posttraumatic growth and hope in parents of children with cancer.

UNLABELLED: Posttraumatic growth (PTG), a positive change in values and major life goals experienced as a result of the struggle with a highly challenging life circumstance, has been shown to be related to the construct of hope, the belief that goals can be met. To date, no studies have examined the relationship between PTG and hope in parents of children with cancer. Participants were parents (N = 85) of children and adolescents (ages 2-18 years, M = 7.72 years) receiving treatment for cancer. Parents completed a demographic questionnaire, the Posttraumatic Growth Inventory (PTGI), and Hope Scale (HS). Hope was found to be related to PTG in parents of children with cancer, with higher levels of hope associated with greater PTG. Exploratory analyses on the subscales of the PTGI revealed that hope was also related to higher scores on the Relating to Others, New Possibilities, Personal Strength, and Appreciation of Life subscales. Spiritual change was not related to hope in parents. CONCLUSIONS: Findings suggest that experiencing hope during the pediatric cancer experience may facilitate posttraumatic growth in parents. The construct of hope may be an important target of intervention for promoting positive adjustment in this population.

Children's risk taking behaviors: the role of child-based perceptions of vulnerability and temperament.

OBJECTIVE: To examine the relationship between perceptions of vulnerability, temperament, and children's risk taking behavior in a simulated home environment. METHODS: Children and their primary caregivers were interviewed regarding temperament and perceptions of vulnerability to injury. In addition, children's interactions with simulated hazards were observed in an environment representing a typical home. RESULTS: Children whose caregivers reported higher levels of activity were significantly more likely to report lower perceptions of vulnerability to injury and show increased risky behavior. After controlling for gender differences, children's risky behaviors were predicted from child-based perceptions of vulnerability. CONCLUSION: Perceptions of vulnerability and active temperaments represent significant risk factors for potential injuries in the home. Modifying perceptions of vulnerability as well as identifying at-risk temperaments for injuries is important to consider when developing effective interventions.

Effects of parental viewing of children's risk behavior on home safety practices.

OBJECTIVE: To examine the effects of parent viewing of their child's actual risk behavior on home safety practices. METHODS: Sixty-one 4-to 7-year-old children and their caregivers participated in a three session project. Parents were exposed to one of three videos: (a) their own child with simulated home hazards, (b) a pilot child with hazards, or (c) a control child development video. Observations of home hazards as well as parent measures of supervision and vulnerability were completed pre and post-intervention. RESULTS: Exposure to a video of a parent's own child playing with simulated hazards resulted in improved home safety practices. Exposure to a pilot child interacting with home hazards did not increase parent safety behaviors. No group differences in levels of vulnerability were found. CONCLUSIONS: Parental attitudes are an important consideration in designing successful injury interventions. Increasing parental awareness of their child's risk to injury may be a valuable tool to change safety behaviors.