Browsing by Subject "Parents"
Now showing 1 - 15 of 15
- Results Per Page
- Sort Options
Item Congruence of Parent-Report, Self-Report, and Performance-Based Neuropsychological Functioning in Pediatric Acute Lymphoblastic Leukemia Survivors(2017-07-28) Clem, Matthew Alan; Holland, Alice A.; Stavinoha, Peter L.; Cullum, C. Munro; Holm, Suzanne; Lampson, ErinAcute Lymphoblastic Leukemia (ALL) is thought to have long-term cognitive effects, and clinicians often rely on parent report to screen for cognitive impairment during survivorship, despite limited congruence with neuropsychological performance and susceptibility to parental factors such as stress. This study was the first to investigate the moderating effect of parental stress on the congruence between reported child functioning and neuropsychological performance in pediatric ALL. Based on prior literature, performance-based, parent-report, and self-report measures were expected to show significantly worse child functioning compared to norms, with parents expected to report elevated stress compared to norms. Parental stress was expected to moderate the congruence between parent report and neuropsychological performance or self-report, with more stressed parents overestimating child impairment. A relatively large (N=107) sample of pediatric ALL survivors treated on chemotherapy-only protocols completed neuropsychological screening and standardized questionnaires on cognitive, behavioral, and emotional functioning at an annual follow-up visit (minimum six months post-treatment completion). Parents completed standardized questionnaires on child cognitive, behavioral, and emotional functioning; and parental stress and mood. Independent t-tests showed average overall cognitive functioning compared with normative data, but higher-than-expected frequencies of impairment (≤ 2nd percentile) in attention and executive functioning. ANOVA/ANCOVA analyses showed greater methotrexate exposure and younger age of diagnosis are associated with worse attention and processing speed performances. Parental stress and depression were lower than expected, likely indicating good parental adjustment. Correlation analyses revealed low to moderate (r = .21 - .41) congruence between parent report and neuropsychological performance; parent- and self-reported behavioral/emotional functioning were weakly associated. Moderation analyses indicated ratings of parents reporting mild stress were more congruent with neuropsychological performance than ratings of parents reporting no stress (ΔR2 = .05, p < .05), suggesting parents reporting at least some stress are more attuned to subtle aspects of child functioning. Contemporary treatment protocols show generally intact child cognitive functioning, though some are vulnerable to late effects. Parental psychological factors may steer clinicians toward performance-based methods of child assessment. Longitudinal studies with healthy and matched controls are necessary to fully understand the variable course and expression of late cognitive effects in pediatric leukemia survivors.Item Effects of Surgical Intervention on Parent Reported Quality of Life in Children and Adolescents with Craniofacial Conditions(2014-12-22) Perrin, Lauren Kacey; Heppner, Celia; Wetherington, Crista E.; Kane, AlexBACKGROUND: This study compared parent-reported quality of life pre- and post-surgery in children with craniofacial conditions. Many psychosocial difficulties associated with craniofacial conditions have been identified in the literature; however, research has not yet looked specifically at parent reports of patients’ quality of life and psychosocial functioning before and after surgery. OBJECTIVE: The aim of this study was to examine changes in parent-reported quality of life over time in relation to surgical intervention in children and adolescents with craniofacial conditions. DESIGN: A retrospective chart review was conducted of patients seen in a multidisciplinary craniofacial team clinic. Data were examined for two time points: initial visit and follow-up visit to team clinic. Participants included in the chart review were patients seen twice by psychology in team clinic between March 2011 and August 2014, with PedsQL™ ratings from parents at both time points. Patients ages 0 to 23 years were eligible for inclusion in the sample. Data collected from patient charts included demographic information, medical and surgical history, and scores from the PedsQL™ TM 4.0 Generic Core Scales. RESULTS: Parenting stress reported at follow-up had a significant relationship with parent reported quality of life reported at follow-up for this sample; however, surgery was not a significant predictor of outcome quality of life. DISCUSSION: Current parenting stress and initial reports of quality of life may be important variables for clinicians to consider when working with the craniofacial population. Surgery should be investigated further in terms of its impact on quality of life in relation to other psychosocial variables.Item Exploratory Study of Manualized Parent Training with Parental Support for Children with Autism Spectrum Disorder(2018-07-02) Cartwright, Julia Elizabeth; Bellone, Katherine; White, Stormi P.; Travis, Rebekah; Jarrett, Robin B.; Elliott, StephenParents of children with Autism Spectrum Disorder (ASD) present for therapeutic services with two essential needs: training on behavioral strategies specific to children with ASD and support for parental stress. Training parents as agents of behavior change increases intervention exposure naturally. Parents of children with ASD experience high parental stress, which negatively impacts parenting and treatment engagement. The current study assessed outcomes of adding a parent-support component to RUBI Autism Network's Parent Training for Disruptive Behaviors (RUBI Manual). A single-subject alternating treatments design was implemented within a community-based sample of parent-child dyads (10 participants). Each dyad received two treatment packages in a rapid alternating fashion. PT-Alone sessions included a manualized parent-training module, while PT-Plus sessions included a manualized parent-training module and 15-minute pre-session parent-support component. Five dyads with a child (average age=32 months) with ASD and disruptive behavior participated in three baseline and 11 RUBI Manual sessions, six included the parent-support component. Hypotheses included that parental stress and child disruptive behavior would decrease with intervention, while parent positive praise would increase. While the intervention effectively reduced child disruptive behaviors and increased parent praise, the primary finding was that the addition of the parent-support component further increased parent treatment integrity and parent praise. Results support a model of change for parenting behavior. Specifically, meaningfully programming for parent support within child behavioral treatment improved parent engagement, reflected in increased parent treatment integrity, which resulted in increased parenting skills, reflected in increased parent praise. Increased parenting skills likely contributed to decreased child disruptive behavior and parental stress. Inclusion of a parent-support component is supported as an effective practice for parent training within this specialized population.Item A Family Bereavement Camp: Emerging Themes Regarding Its Impact on the Lives of Bereaved Parents and Siblings(2016-08-25) Carawan, Melissa Anne; Germann, Julie; Faith, Melissa A.; Winick, NaomiBACKGROUND: Within the grief literature, family bereavement camps have yet to be researched in a combined population of bereaved parents and siblings. Camp Sol is a weekend retreat for families who have experienced the death of a child/sibling. The goal of the current study is to establish areas reported by parents and sibling campers as being impacted by their experience at camp in hopes of identifying standardized measures that can be implemented in the future evaluation process. This will provide future researchers the ability to quantitatively evaluate the overall efficacy of a family bereavement camp among bereaved parents and siblings. SUBJECTS: Camp Sol evaluations were collected post-camp over the span of five and a half years totaling 656 evaluations. Parents comprised 50.2% of the sample, where the majority of them spoke English versus Spanish (81.4% vs. 18.5%). The children comprised 49.8% of the sample and ranged from the age of 4 to 19. METHOD: Data coding and analysis followed a mixed-methods design, specifically the convergent parallel design, which utilizes both qualitative and quantitative data. The constant Comparative Method (CCM) was used to analyze and code the qualitative portion of the evaluation to arrive at core themes. A variety of quantitative analyses (independent t-test, ANOVA, MANOVA) was used to analyze potential differences between groups according to family role, language, and age. RESULTS: The prominent themes that emerged from the qualitative data were social support, communication, continuing bonds as a coping skill, increased knowledge of the grief process, adjustment, family interaction, and camp environment. Quantitative results revealed that fathers rated the Understanding Index significantly lower than unspecified parents, and siblings ' ages 8 to 11 and 12 years and older had significantly higher mean scores on communication than siblings ' ages 2 to 7. DISCUSSION: This study is the first to research both parent and sibling benefits of a family bereavement camp, which identified the importance of non-pathological constructs (e.g. social support, communication, family relationships) while providing richness of information about how a uniquely structured camp may facilitate positive adjustment and coping for entire bereaved families. The camp structure may provide cost effective and accessible grief intervention for bereaved families (English and Spanish) in a safe and supportive environment. Future research would benefit from the use of pre- and/or post- intervention measures assessing for social functioning and mental health, as well as the implementation of a control group to allow discrimination of participants' outcomes.Item Improving Nutritional Knowledge of Caregivers in Hyderabad, India: A Pilot Study(2019-04-02) Tinger, Sophia Tibe; Patterson, Abigail M.; Reed, W. Gary; Phelps, EleanorBACKGROUND: India has the highest prevalence of underweight children under 5 in the world. While lack of access to food is one contributing factor to undernutrition, a caregiver's nutritional knowledge is a more important determinant. Caregivers can improve their nutritional knowledge through nutritional counselling, which is already one of the standard management options for treating children with mild to moderate malnutrition. Therefore, improving nutritional counselling for caregivers can be an effective way to combat undernutrition. OBJECTIVE: The aim of this study was to increase caregiver nutritional knowledge gained after receiving diet counseling at Niloufer Hospital, in Hyderabad, India, by 25% by March 2017 through the use of quality improvement tools. METHODS: Checklists and flipcharts were designed using PDSA cycles and DMAIC, two frequently used quality improvement tools. These interventions were then sequentially implemented in two-week increments over a period of six weeks. Caregivers of children 5 and under were given short surveys both before and after counselling. Change in knowledge scores were calculated from the difference in the pre- and post-counselling survey scores. This was done for three different age groups over each phase of the project: Baseline Phase, Checklist Phase, and Flipchart Phase. This data was then analyzed using a one-way ANOVA, as well as a post-hoc analysis with a student-Newman-Keuls test to confirm the ANOVA. RESULTS: The aim was achieved for all age groups when comparing the change in knowledge scores from the final phase (Flipchart Phase) to the Baseline Phase. For the Under 6 Months age group, the change in knowledge scores were 5.24, 10.17, and 12.20 for the Baseline, Checklist, and Flipchart phases respectively. The percent increase from the Baseline Phase to the Flipchart phase was 132.8%. For the 6 to 35 Months group, the change in knowledge score was 9.25 in the Baseline Phase, 8.14 in the Checklist Phase, and 18.86 in the Flipchart Phase, a 103.9 percent increase from the Baseline Phase. Finally, there was a change of knowledge score of 3.57 in the Baseline Phase, 6.25 in the Checklist Phase, and 29.17 in the Flipchart Phase for the 3-5 Years age group. This age group showed a 717.1 percent increase between the Baseline Phase and the final phase of the study. There were no statistically significant findings in this pilot study. However, there was a positive trend showing the flipcharts were the most effective intervention. CONCLUSION: This pilot study demonstrated that these simple-to-create and low-cost interventions, especially the flipcharts, can improve knowledge gained through counselling in low resource settings. Future studies are needed to determine if these interventions can be improved and expanded for wider use.Item [News](1982-02-02) Willding, LizItem [News](1983-02-21) Harrell, Ann; Williams, Ann; Harris, LindaItem School Scoliosis Screenings: Family Experiences and Potential Anxiety after Orthopedic Referral(2014-07-15) Hines, Tabatha Kay; Kennard, Beth D.; Roland, Sandy; Richard, Heather; Hughes, Carroll W.; McClintock, Shawn MichaelBACKGROUND: Prevalence of adolescent idiopathic scoliosis (AIS) is approximately 2-4% (Reamy & Slakey, 2001). Implementation of mass school screening programs for early detection of AIS has been utilized to prevent curve progression (Luk et al., 2010). Use of school scoliosis screenings (SSS) remains controversial, due to a high rate of false-positive referrals and excessive costs (Fong et al., 2010). Literature frequently alludes to child/parent experiences of anxiety resultant from SSS referrals as a reason to end SSS programs. No systematic study of SSS referral processes associated with anxiety in families has been conducted. AIMS: Knowledge of the level of psychological sequelae, particularly anxiety, subsequent to these referrals will inform SSS referral process overall costs/benefits to families. Enhanced understanding of the family’s experience during the SSS referral process will allow for improvement of the SSS process from a psychological perspective. METHODS: The study consisted of two groups – a patient group of patients from TSRHC (n=27) and a control group (n=27) between ages 9 and 17. One parent per participant also participated. All participants completed the primary outcome measure (State-Trait Anxiety Inventory) at two time points – before and after initial scoliosis evaluation for the patient group, and before and after a controlled wait period for the control group. Parents also completed a questionnaire rating their experience and satisfaction with the SSS referral process. RESULTS/CONCLUSIONS: Children and parents in the patient group experienced significantly elevated levels of state-anxiety upon arrival to the hospital than those in the control group. This supports the subjective concerns of anxiety experienced in families as voiced by researchers evaluating SSS programs. All participants reported a decline in their experience of state-anxiety from the start to end of their appointment, regardless of evaluation outcome. This suggests a certain amount of anticipatory anxiety may be present when arriving to the hospital that declines with comfort with the hospital/staff members. Children and parents in the patient group not diagnosed with AIS experienced a significant decline in state-anxiety from pre to post, when controlling for trait-anxiety. Children and parents in the patient group diagnosed with AIS continued to report significantly elevated levels of anxiety. The control group also remained consistent in their reports of low anxiety from the beginning to end of appointment. Results reveal a high false-positive referral rate at 51.9% referred who were negative for an AIS diagnosis. Only 22% of those referred required treatment at this time. More than half (55.5%) indicated that they did not receive information from the school about scoliosis or the referral/evaluation process. A third (33.3%) of the families who did receive information indicated the information did not adequately address their concerns. This lack of information dissemination may largely explain the presence of anxiety in these families that decreased by the end of their TSRHC appointment with the receipt of more information provided by the medical team. Results suggest that despite the experience of anxiety going into the appointment and despite the outcome of the appointment (diagnosis or not), families report overall satisfaction with SSS and appear to appreciate the value/benefit of the SSS program and the evaluation process. IMPLICATIONS: Results suggests families deem the costs of the referral process (emotional, financial, and time) as worth the benefits of the referral and evaluation process. Though researchers, legislators, and medical professionals were accurate in their perception of anxiety in families, it may not constitute a significant enough burden to consider it a reason for dismissal of SSS programs. A lack of information dissemination may largely explain the presence of anxiety in these families that decreased by the end of their TSRHC appointment with the receipt of more information provided by the medical team. This demonstrates and area of improvement for the SSS programs.Item Socioeconomic Status and Access to Resources as Predictors of Sibling Hope and Sibling Coping with Pediatric Cancer-Related Stressors(2016-08-25) Prindiville, Katherine Alexis; Faith, Melissa A.; Germann, Julie; Holland, Alice A.; Holm, SuzanneAlthough most siblings of pediatric cancer patients adjust well to cancer diagnosis and treatment course, some siblings demonstrate significant adjustment difficulties. One question is whether these siblings may also be at risk for reduced hope and poor coping, especially if family roles and routines are particularly disrupted during cancer treatment. This study will examine the degree to which sociodemographic variables (i.e., socioeconomic status and access to resources) predict pediatric cancer patients' siblings' hope and coping. Data were obtained from siblings of pediatric oncology patients and their parents at a large pediatric cancer treatment center using paper-and-pencil questionnaires, telephone/in-person structured interviews, and internet-based questionnaires. I hypothesized a direct relation between sociodemographic variables and sibling hope. I also hypothesized a direct relation between sociodemographic variables and adaptive coping and an inverse relation between sociodemographic variables and maladaptive coping. Both hypotheses were partially supported; sociodemographics as a whole did not significantly predict hope or adaptive coping, but did account for 5% and 10% of the variance, respectively. Sociodemographics did not significantly predict internalizing/externalizing coping or avoidant coping. To rule out superfluous findings, more research on the predictive value of income is needed. Future studies should also further examine other components of socioeconomic status and access to resources on sibling adjustment to pediatric cancer diagnosis and treatment. Life disruption variables significantly predicted all outcome variables, indicating that life disruption plays an important role in sibling adjustment. Providers should be aware of the impact of life disruption and find ways to care for siblings and families to ensure they experience as little disruption as possible.Item [Southwestern News](2003-03-25) Morrison, Susan; O'Brien, StephenItem [Southwestern News](1999-11-19) Stieglitz, HeatherItem [Southwestern News](2002-12-05) Bedrick, BarbaraItem Transitioning from Open Bay to Private Room: The Impact on Neonatal Parent-Staff Communication(2018-03-26) Hokanson, Jamila Cutliff; Frost, Mackenzie; Reed, W. Gary; Phelps, EleanorBACKGROUND: Effective parent-staff communication improves parents' emotional well-being, leads to better parent-infant bonding, and increases parental involvement in their child's care. Several studies address the impact of workflow and analyze the effectiveness of parent communication in a neonatal intensive care unit (NICU). However, few studies address parent-staff communication impact when moving from an open bay NICU to private rooms. OBJECTIVE: To determine the impact on neonatal parent-staff communication in moving from an open bay to a private room neonatal intensive care design. METHODS: Based on stakeholder interviews, spaghetti diagrams, and a communication process map, we developed and administered a mixed format parent and provider questionnaire to measure communication perception differences in the open bay and private room environment. RESULTS: There was no statistical difference (p-value > 0.05) between perceptions of communication in the open bay (2.33) versus the private room (2.34). However, there was a statistical difference (p-values < 0.05) between the providers' communication perception (2.16, 2.26) versus the parents' communication perception (2.88, 2.75). In addition, moving from an open bay to a private room environment widened the difference between the types of information parents desired versus what they actually received. Additional communication opportunities identified, in both the open bay and private room environment, include minimizing conflicting information, increasing parental engagement, and using diversified communication methods. CONCLUSIONS: Moving from an open bay to a private room NICU did not have a significant impact on parent-staff communication, but opportunity areas to improve parent-staff communication were identified. This data is being used to design interventions to improve parent-staff communication in our NICU.Item [UT Southwestern Medical Center News](2009-11-30) Shear, Kristen HollandItem [UT Southwestern Medical Center News](2007-11-15) Stafford, Erin Prather