Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 180
Filter
1.
Adv Neonatal Care ; 24(3): 243-252, 2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38729653

ABSTRACT

BACKGROUND: Rising admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) have increased the number of non-English-speaking individuals who may wish to participate in research studies. However, a lack of appropriately translated research study materials may limit the opportunity for these families to be involved in research that could impact the care that infants and families receive in the NICU. PURPOSE: The primary purpose was to pilot test study materials that were transcreated from English to Spanish with the assistance of a bilingual community advisory board with Spanish-speaking parents of NICU infants. METHODS: A total of 19 Spanish-speaking parents (15 mothers and 4 fathers) who were representative of the population of interest completed paper-and-pencil surveys, along with a cognitive interview. Preliminary data related to decision-making and goals of care, infant symptoms, and their experiences in the NICU were also collected. RESULTS: The internal reliability of the transcreated study instruments ranged from good to excellent (α= 0.82-0.99). Participants reported that study materials were not offensive and did not make them feel uncomfortable; however, they found some words/phrases to be confusing. Parents had the opportunity to provide suggested wording changes. IMPLICATIONS FOR PRACTICE AND RESEARCH: Language barriers and a lack of cultural responsiveness can affect the care that infants and their families receive. More accurate and culturally appropriate transcreation of study materials can remove barriers to research participation and facilitate better communication with non-English-speaking families, which may lead to the development of better-informed evidence-based interventions and clinical practices in the NICU.


Subject(s)
Hispanic or Latino , Intensive Care Units, Neonatal , Parents , Humans , Pilot Projects , Infant, Newborn , Female , Parents/psychology , Male , Hispanic or Latino/psychology , Adult , Surveys and Questionnaires , Reproducibility of Results , Communication Barriers , Language , Translating
2.
Pediatr Blood Cancer ; 71(7): e31001, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38644596

ABSTRACT

BACKGROUND: While most research has largely focused on medical risks associated with reduced health-related quality of life (HRQOL) in survivors, sociodemographic and family factors may also play a role. Thus, we longitudinally examined sociodemographic factors and family factors associated with survivor HRQOL, including adolescent's cancer-specific stress, mother's general stress, and mother-adolescent communication. METHODS: Mothers (N = 80) and survivors (ages 10-23, N = 50) were assessed 5 years following initial diagnosis. Mothers completed measures regarding sociodemographic background adolescent's cancer-specific stress, mother's general stress, mother-adolescent communication, and adolescent HRQOL. Survivors also reported on their own HRQOL. Two hierarchical multiple regressions examined predictors of (a) mother's report of adolescent HRQOL, and (b) survivor's self-report of HRQOL. RESULTS: The final model predicting mother-reported adolescent HRQOL was significant, F(5,74) = 21.18, p < .001, and explained 59% of the variance in HRQoL. Significant predictors included adolescent stress (ß = -.37, p < .001), mothers' stress (ß = -.42, p < .001), and communication (ß = .19, p = .03). The final model predicting survivor-reported HRQOL was also significant, F(5,44) = 5.16, p < .01 and explained 24% of the variance in HRQOL. Significant predictors included adolescent stress (ß = -.37, p = .01) and communication (ß = -.31, p = .04). Sociodemographic factors were not a significant predictor of HRQOL in any model. CONCLUSION: Family stress and communication offer potential points of intervention to improve HRQOL of pediatric cancer survivors from mother and survivor perspectives. While additional research is needed, healthcare professionals should encourage stress management and strong mother-child communication to enhance survivors' long-term HRQOL. Such interventions may be complimentary to efforts targeting the known sociodemographic factors that often affect health.


Subject(s)
Cancer Survivors , Communication , Neoplasms , Quality of Life , Stress, Psychological , Humans , Adolescent , Female , Cancer Survivors/psychology , Male , Child , Neoplasms/psychology , Stress, Psychological/psychology , Young Adult , Adult , Mothers/psychology , Sociodemographic Factors , Mother-Child Relations/psychology , Follow-Up Studies , Longitudinal Studies
3.
J Fam Psychol ; 38(4): 523-535, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38512214

ABSTRACT

COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.), greater resilience has been linked to lower COVID-19 impact on child QoL. Thus, understanding individual and dyadic factors contributing to resilience and QoL during COVID-19 within the United States may provide important insight for points of intervention. This study aimed to characterize the interdependent effects of child and caregiver COVID-19 impact on child and caregiver resilience, as well as on child-reported and caregiver proxy-reported child QoL. U.S. caregivers (n = 231; 95.7% female) and their 8-17-year-old children (n = 231; 54.5% male; Mage = 11.87; SDage = 2.66) reported their COVID-19 impact between May and July 2020 (T1). Follow-up self-reports on resilience and child QoL occurred between November 2020 and January 2021 (T2). Two actor-partner interdependence models (APIM) and one actor-partner interdependence mediation model (APIMeM) assessed associations among caregiver and child COVID-19 impact, resilience, and QoL. An APIM revealed significant negative actor and partner effects of COVID-19 impact on child self-reported and caregiver proxy-reported child QoL. Another APIM revealed an actor effect from COVID-19 impact to one's own resilience. The APIMeM revealed two indirect effects revealing that when children or caregivers reported greater levels of T1 COVID-19 impact, it was associated with lower levels of T2 child-reported resilience, which was subsequently associated with lower T2 child-reported QoL. Findings suggested that both child and caregiver perceptions of the pandemic were important for their own and the others' resilience, as well as child QoL. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Subject(s)
COVID-19 , Caregivers , Quality of Life , Resilience, Psychological , Humans , COVID-19/psychology , Quality of Life/psychology , Male , Female , Child , Adolescent , Caregivers/psychology , Adult , United States
4.
J Pediatr Psychol ; 49(3): 207-223, 2024 Mar 20.
Article in English | MEDLINE | ID: mdl-38423530

ABSTRACT

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.


Subject(s)
Neoplasms , Resilience, Psychological , Female , Humans , Child , Parents/psychology , Neoplasms/psychology , Caregivers/psychology , Mothers
5.
Palliat Support Care ; : 1-8, 2024 Feb 14.
Article in English | MEDLINE | ID: mdl-38353006

ABSTRACT

OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents' involvement in care and their desired change in involvement. METHODS: Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10-23 (n = 41; Mage = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents' frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis. RESULTS: The model examining frequency of involvement in care was significant, F(5,34) = 3.12, p = .02, R2= .31. Older age was the only significant predictor (ß = .13, p= .003). The model examining desired involvement was non-significant, F(5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings. SIGNIFICANCE OF RESULTS: Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.

6.
Palliat Support Care ; 22(2): 281-288, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37559193

ABSTRACT

OBJECTIVES: The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps. METHODS: Participants (N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology®, a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic's impact on the family. RESULTS: Analysis revealed 6 themes, with positive and negative sentiments: family changes (n = 169; 61% negative), social isolation (n = 154; 100% negative), emotional impact (n = 143; 89% negative), school changes (n = 126; 80% negative), health-care changes (n = 111; 96% negative), and physical health (n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses. SIGNIFICANCE OF RESULTS: Many common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.


Subject(s)
COVID-19 , Neoplasms , Child , Humans , Pandemics , Stress, Psychological/psychology , Social Support , Parents/psychology , Neoplasms/complications
7.
J Pediatr Hematol Oncol Nurs ; 41(2): 85-95, 2024.
Article in English | MEDLINE | ID: mdl-38008953

ABSTRACT

Background/objectives: Little is known about the COVID-19 pandemic and its impact on the quality of life (QoL) of children with cancer who may be more vulnerable to the pandemic's effects. We examined associations between COVID-19 exposure and impact on parent-proxy reported QoL in children with cancer, and potential moderation based on the child's cancer status (i.e., time since diagnosis, on/off treatment). Design/method: Parents of children with cancer were recruited February-April 2021 via Facebook and Momcology. Parents completed the COVID-19 Exposure and Family Impact Scale and a child QoL measure. Controlling for parent age, income, child age, and child sex, we examined the indirect effect of COVID-19 impact on the association between COVID-19 exposure and parent-proxy reported child QoL, as well as the moderating role of cancer status. Results: Parents (N = 401) reported lower child QoL scores (M = 59.74) than prepandemic reports of children with cancer, t(735) = -6.98, p < .001. Mediation analyses revealed a significant indirect effect, 95% CI [-0.47, -0.13]: Higher COVID-19 exposure was associated with higher COVID-19 impact (a = 0.47, p < .001), which was related to lower QoL (b = -0.56, p < .001). The association between impact and QoL was stronger as time since diagnosis increased (95%CI [-0.08, -0.001]), yet treatment status did not moderate this path. Conclusions: Parents who report greater COVID-19 impact may also report lower QoL in their children with cancer, especially further from diagnosis. Nurses and clinicians should be aware of the pandemic's negative impact and screen for COVID-19 related distress. Additionally, results highlight the importance of long-term, family-centered care, regardless of whether children receive treatment or survivorship care.


Subject(s)
COVID-19 , Neoplasms , Child , Humans , Quality of Life , Pandemics , COVID-19/epidemiology , Parents , Neoplasms/epidemiology
8.
Psychooncology ; 33(1): e6253, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38009605

ABSTRACT

OBJECTIVE: Limited research has characterized cancer-related stress (CRS) among families of childhood cancer survivors. We examined the prevalence of CRS among survivors and caregivers, as well as its association with health risk perceptions (i.e., prognosis, risk for diminished quality of life) and views of survivor quality of life (QoL). METHODS: At five years post-diagnosis or relapse, survivors (n = 100; Mage  = 15.84 years; 89% White), mothers (n = 127), and fathers (n = 59) reported their CRS. Perceived prognosis and risk for diminished QoL were rated on a 0%-100% visual analogue scale, while the PedsQL assessed QoL. RESULTS: CRS was low (M = 1.6-1.8, scale: 1-4); mothers reported greater stress than survivors, p = 0.038, d = 0.25. There was an indirect effect of survivors' perceived prognosis on their QoL through CRS, CI = 0.04 to 0.25, R2  = 0.32. Among mothers, there was an indirect effect of perceived prognosis/risk for diminished QoL on their reports of survivor QoL through CRS, CI = 0.03 to 0.23 and -0.15 to -0.03, R2  = 0.28 and 0.32, respectively. There were no indirect effects among fathers. CONCLUSIONS: CRS may be an important, modifiable factor that could improve survivors' QoL. Research is needed to examine how CRS changes over time to assess the utility of interventions among female survivors, mothers, and those with lower prognosis estimates.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Female , Child , Adolescent , Quality of Life , Neoplasms/epidemiology , Prevalence , Survivors
9.
J Adolesc Young Adult Oncol ; 13(3): 469-480, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38100322

ABSTRACT

Purpose: Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care. Methods: Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis. Results: Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers.. Discussion: Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services.


Subject(s)
Brain Neoplasms , Cancer Survivors , Mental Health Services , Humans , Adolescent , Male , Female , Young Adult , Brain Neoplasms/psychology , Brain Neoplasms/therapy , Adult , Cancer Survivors/psychology , Caregivers/psychology , Health Services Needs and Demand , Health Services Accessibility , Child
10.
J Fam Psychol ; 37(8): 1190-1199, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37676170

ABSTRACT

A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings. Thus, we examined: (a) differences in parental depressive symptoms, parent-child communication, and sibling self-worth between bereaved and nonbereaved families and (b) indirect effects of parental depressive symptoms and communication quality on the association between bereavement and sibling self-worth. Bereaved parents and siblings were recruited 3-12 months after a child's death from cancer. Bereaved (n = 72) and nonbereaved families of classmates (n = 58) completed home-based questionnaires upon enrollment (T1), and 48 bereaved and 45 nonbereaved families completed 1-year follow-up (T2). Relative to controls at T1 and T2, bereaved mothers, but not fathers, reported more depressive symptoms. Bereaved siblings reported poorer maternal and similar paternal communication, and similar levels of self-worth compared to controls. Both cross-sectional and longitudinal serial mediation models for mothers were significant. Bereaved mothers were at greater risk for depressive symptoms, which adversely affected sibling self-worth over time through disrupted mother-child communication. The father sample was limited, but the cross-sectional model was nonsignificant. Mothers and fathers may grieve differently and may require different therapeutic approaches. Family-centered interventions should target bereaved mothers' emotional adjustment and communication to enhance sibling self-worth. Additionally, clinicians should bolster other sources of support for bereaved siblings to promote adaptive outcomes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Subject(s)
Neoplasms , Siblings , Male , Female , Humans , Siblings/psychology , Depression/etiology , Depression/psychology , Cross-Sectional Studies , Parents/psychology , Mothers , Neoplasms/psychology , Communication
11.
J Assist Reprod Genet ; 40(12): 2809-2817, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37730946

ABSTRACT

PURPOSE: To examine processes, barriers, and facilitators to sperm banking counseling and decision-making for adolescent males newly diagnosed with cancer from the perspective of clinicians who completed Oncofertility communication training. We also identify opportunities for improvement to inform future interventions and implementation. METHODS: A survey (N=104) and subsequent focus groups (N=15) were conducted with non-physician clinicians practicing in pediatric oncology who completed Oncofertility communication training. RESULTS: Most survey participants were confident in communicating about the impact of cancer on fertility (n=87, 83.7%) and fertility preservation options (n=80, 76.9%). Most participants reported never/rarely using a sperm banking decision tool (n=70, 67.3%), although 98.1% (n=102) said a decision tool with a family-centered approach would be beneficial. Primary themes in the subsequent focus groups included variable processes/workflows (inconsistent approaches to consult initiation; involvement of adolescents, caregivers, and various clinician types; assessment of puberty/sexual experience), structural and psychosocial barriers (cost and logistics, developmental, cultural, clinical acuity/prognosis), and facilitators (educational materials, alternative options for banking). Opportunities and strategies for improvement (including fertility preservation in existing research protocols; additional staffing/resources; oncologist education and buy-in; and development of decision tools) were informed by challenges identified in the other themes. CONCLUSION: Barriers to adolescent sperm banking remain, even among clinicians who have completed Oncofertility training. Although training is one factor necessary to facilitate banking, structural and psychosocial barriers persist. Given the complexities of offering sperm banking to pediatric populations, continued efforts are needed to mitigate structural barriers and develop strategies to facilitate decision-making before childhood cancer treatment.


Subject(s)
Fertility Preservation , Neoplasms , Child , Humans , Male , Adolescent , Semen , Spermatozoa , Neoplasms/psychology , Fertility Preservation/methods , Counseling
12.
PLoS One ; 18(8): e0289987, 2023.
Article in English | MEDLINE | ID: mdl-37590237

ABSTRACT

Medication non-adherence rates in children range between 50% and 80% in the United States. Due to multifaceted outpatient routines, children receiving hematopoietic stem cell transplant (HCT) are at especially high risk of non-adherence, which can be life-threatening. Although digital health interventions have been effective in improving non-adherence in many pediatric conditions, limited research has examined their benefits among families of children receiving HCT. To address this gap, we created the BMT4me© mobile health app, an innovative intervention serving as a "virtual assistant" to send medication-taking reminders for caregivers and to track, in real-time, the child's medication taking, barriers to missed doses, symptoms or side effects, and other notes regarding their child's treatment. In this randomized controlled trial, caregivers will be randomized to either the control (standard of care) group or the intervention (BMT4me© app) group at initial discharge post-HCT. Both groups will receive an electronic adherence monitoring device (i.e., medication event monitoring system "MEMS" cap, Medy Remote Patient Management "MedyRPM" medication adherence box) to store their child's immunosuppressant medication. Caregivers who agree to participate will be asked to complete enrollment, weekly, and monthly parent-proxy measures of their child's medication adherence until the child reaches Day 100 or complete taper from immunosuppression. Caregivers will also participate in a 15 to 30-minute exit interview at the conclusion of the study. Descriptive statistics and correlations will be used to assess phone activity and use behavior over time. Independent samples t-tests will examine the efficacy of the intervention to improve adherence monitoring and reduce readmission rates. The primary expected outcome of this study is that the BMT4me© app will improve the real-time monitoring and medication adherence in children receiving hematopoietic stem cell transplant following discharge, thus improving clinical outcomes.


Subject(s)
Medication Adherence , Telemedicine , Humans , Child , Drug Monitoring , Advance Directives , Stem Cell Transplantation , Randomized Controlled Trials as Topic
13.
J Assist Reprod Genet ; 40(10): 2391-2400, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37584730

ABSTRACT

PURPOSE: Reproductive health is important, but often neglected in cancer survivorship care. This study explored contraceptive use and factors associated with fertility testing among young adult survivors of childhood cancer in Germany. METHODS: Young adult survivors of childhood cancer were identified through the German Childhood Cancer Registry and completed a mailed survey. Survivors were queried regarding contraceptive use, reproductive goals, uncertainty about fertility, and completion or interest in fertility testing. Multivariable stepwise logistic regression models were used to calculate Odds Ratios (OR) and 95% confidence intervals (CI) as a means of identifying factors associated with completion of and interest in fertility testing. RESULTS: Survivors (N = 472; 57.8% female; aged 23.3 ± 1.5 years, and 14.9 ± 5.0 years from diagnosis), reported high rates of contraceptive use, including 61.2% using a single method, 30.6% dual methods, and 8.1% no/less effective methods. Few survivors had completed fertility testing (13.0%), although 58.8% were interested. Having been diagnosed during adolescence (OR = 2.66, 95%CI: 1.39-5.09), greater uncertainty about fertility (OR = 1.16, 95%CI: 1.03-1.31), and use of dual contraceptive methods (OR = 1.94, 95%CI: 1.02-3.69) were associated with having completed fertility testing. Factors associated with interest in fertility testing included goals of wanting to have children (OR = 7.76, 95%CI: 3.01-20.04) and greater uncertainty about fertility (OR = 1.19 95%CI: 1.06-1.33). CONCLUSION: In this sample of young adults who survived childhood cancer, most reported contraceptive use. Few survivors had completed fertility testing, although more than half were interested. Interventions are needed to address potential barriers to fertility testing and help survivors manage fertility-related uncertainty.


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Humans , Child , Young Adult , Female , Male , Neoplasms/epidemiology , Neoplasms/complications , Fertility , Survivors , Contraception/methods , Contraceptive Agents
14.
J Neurotrauma ; 40(19-20): 2063-2072, 2023 10.
Article in English | MEDLINE | ID: mdl-37294204

ABSTRACT

A decline in intellectual functioning (intelligence quotient [IQ]) is often observed following more severe forms of traumatic brain injury (TBI) and is a useful index for long-term outcome. Identifying brain correlates of IQ can serve to inform developmental trajectories of behavior in this population. Using magnetic resonance imaging (MRI), we examined the relationship between intellectual abilities and patterns of cortical thickness in children with a history of TBI or with orthopedic injury (OI) in the chronic phase of injury recovery. Participants were 47 children with OI and 58 children with TBI, with TBI severity ranging from complicated-mild to severe. Ages ranged from 8 to 14 years old, with an average age of 10.47 years, and an injury-to-test range of ∼1-5 years. The groups did not differ in age or sex. The intellectual ability estimate (full-scale [FS]IQ-2) was derived from a two-form (Vocabulary and Matrix Reasoning subtests) Wechsler Abbreviated Scale of Intelligence (WASI). MRI data were processed using the FreeSurfer toolkit and harmonized across data collection sites using neuroComBat procedures, while holding demographic features (i.e., sex, socioeconomic status [SES]), TBI status, and FSIQ-2 constant. Separate general linear models per group (TBI and OI) and a single interaction model with all participants were conducted with all significant results withstanding correction for multiple comparisons via permutation testing. Intellectual ability was higher (p < 0.001) in the OI group (FSIQ-2 = 110.81) than in the TBI group (FSIQ-2 = 99.81). In children with OI, bi-hemispheric regions, including the right pre-central gyrus and precuneus and bilateral inferior temporal and left occipital areas were related to IQ, such that higher IQ was associated with thicker cortex in these regions. In contrast, only cortical thickness in the right pre-central gyrus and bilateral cuneus positively related to IQ in children with TBI. Significant interaction effects were found in the bilateral temporal, parietal, and occipital lobes and left frontal regions, indicating that the relationship between IQ and cortical thickness differed between groups in these regions. Changes in cortical associations with IQ after TBI may reflect direct injury effects and/or adaptation in cortical structure and intellectual functioning, particularly in the bilateral posterior parietal and inferior temporal regions. This suggests that the substrates of intellectual ability are particularly susceptible to acquired injury in the integrative association cortex. Longitudinal work is needed to account for normal developmental changes and to investigate how cortical thickness and intellectual functioning and their association change over time following TBI. Improved understanding of how TBI-related cortical thickness alterations relate to cognitive outcome could lead to improved predictions of outcome following brain injury.


Subject(s)
Brain Injuries, Traumatic , Brain Injuries , Humans , Child , Infant , Child, Preschool , Adolescent , Brain Injuries, Traumatic/complications , Brain Injuries, Traumatic/diagnostic imaging , Brain Injuries, Traumatic/pathology , Brain/pathology , Cognition , Brain Injuries/complications , Magnetic Resonance Imaging/methods
15.
Adv Neonatal Care ; 23(3): 212-219, 2023 Jun 01.
Article in English | MEDLINE | ID: mdl-36912673

ABSTRACT

BACKGROUND: Admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) are rising, yet knowledge regarding their experiences is limited. Non-English-speaking families are often excluded from research because study measures are not available in their language. The inclusion of these families in NICU research is crucial to understand the impact of cultural and language barriers in infant and family care, and the translation of study measures into Spanish could better ensure that these families' perspectives are included. However, previous research has utilized the standard translation-backtranslation method with which problems have been noted. PURPOSE: This article describes the planning, preparation, and action phases that were completed with the use of a community advisory board (CAB) to prepare and transcreate research study materials from English to Spanish for pilot testing. METHODS: Community members of interest were invited to form the CAB, and 2 meetings were held to review study materials in the English and Spanish versions. Prior to the second meeting, a professional translation company translated study materials from English to Spanish. RESULTS: Feedback from the CAB ensured consistent content and reading levels, and culturally appropriate language usage. The CAB also provided suggestions to the research protocol and advised sensitive methods of recruitment and measure administration. IMPLICATIONS FOR PRACTICE AND RESEARCH: More accurate and culturally appropriate transcreation of study measures can reduce barriers to research participation and facilitate better communication with non-English-speaking families in health equity research to better inform evidence-based interventions and clinical practices across diverse groups.


Subject(s)
Intensive Care Units, Neonatal , Language , Infant, Newborn , Infant , Humans , Communication , Communication Barriers
16.
J Pediatr Psychol ; 48(4): 320-329, 2023 04 20.
Article in English | MEDLINE | ID: mdl-36898037

ABSTRACT

OBJECTIVE: To provide person and system-level recommendations for supporting early career women in the field of pediatric psychology in writing and submitting National Institutes of Health (NIH) Career Development Award (K award) applications. Recommendations are provided in the context of common barriers, with a focus on practical solutions. METHODS: Publicly available NIH reporter data were compiled to examine rates of funding for Society of Pediatric Psychology (SPP) members. Barriers that women face when initiating programs of research are described and applied to the field of pediatric psychology. RESULTS: Of current SPP members, 3.9% (n = 50) have ever received an NIH K award. Approximately 88.5% of SPP members identify as women, including 89.0% of SPP K award recipients. A table of person- and systems-level recommendations is provided to offer strategies for mentees, mentors/sponsors, institutions, and national organizations to address the barriers discussed. CONCLUSIONS: By addressing gender-specific barriers to submitting K award applications, we hope to increase the number of women K awardees and support the scientific advancement of pediatric psychology.


Subject(s)
Awards and Prizes , Biomedical Research , United States , Child , Humans , Female , Psychology, Child , Research Personnel , National Institutes of Health (U.S.) , Mentors
17.
J Clin Psychol Med Settings ; 30(1): 72-79, 2023 03.
Article in English | MEDLINE | ID: mdl-35486337

ABSTRACT

Post-baccalaureate programs are increasingly common and have demonstrated success in preparing students for graduate programs. Most post-baccalaureate programs have a pre-medical focus, and the few existing clinical psychology-focused programs are centered on coursework, situated within a university, costly to students, and/or geared towards career change. The post-baccalaureate program at Nationwide Children's Hospital was created in 2017 and is uniquely positioned within a pediatric academic medical center. The program provides research skill training, mentorship, professional development, and graduate school preparation to employed clinical research coordinators. An early program assessment, based on self-reports, revealed the program attracts diverse participants that are primarily interested in pediatric or child psychology and rate themselves as "somewhat confident" in their current research skills. This manuscript summarizes the three phases of development and key components of the post-baccalaureate program, which can serve as a model to other medical centers interested in developing training programs for research staff, particularly underrepresented racial and ethnic minorities, and those from disadvantaged backgrounds.


Subject(s)
Schools , Students , Humans , Child , Program Evaluation , Academic Medical Centers
18.
Am J Hosp Palliat Care ; 40(1): 34-42, 2023 Jan.
Article in English | MEDLINE | ID: mdl-35535490

ABSTRACT

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.


Subject(s)
Adaptation, Psychological , Neoplasms , Child , Humans , Parents/psychology , Neoplasms/therapy , Neoplasms/psychology , Emotions , Internet
19.
J Pediatr Psychol ; 48(6): 503-511, 2023 07 05.
Article in English | MEDLINE | ID: mdl-36308772

ABSTRACT

OBJECTIVE: Research suggests families whose infants are admitted to the Neonatal Intensive Care Unit (NICU) experience elevated distress and may have pre-existing risk factors for maladjustment. This study sought to validate the newly developed Psychosocial Assessment Tool (PAT-NICU/Cardiac Intensive Care Unit [CICU]), a comprehensive screening measure for family psychosocial risk in the NICU. METHODS: The sample included 171 mothers, who completed the PAT-NICU/CICU and other related measures within 2 weeks of their infant's NICU admission at a level 4 unit within a large pediatric hospital. PAT-NICU/CICU scores were compared to a companion risk survey completed by NICU social workers. Test-retest reliability was assessed through repeated measures at 2-month follow-up. RESULTS: Analyses suggest the PAT-NICU/CICU is effective in classifying psychosocial risk. This is supported by statistically significant correlations between the PAT-NICU/CICU and validated measures, in addition to elevated scores on concurrent measures by risk classification. Internal consistency, test-retest reliability, and acceptability for the PAT-NICU/CICU were satisfactory. CONCLUSIONS: This preliminary study demonstrates the validity, reliability, and acceptability of the PAT-NICU/CICU as a psychosocial screening tool to aid identification of families who may benefit from supportive services during NICU admission. This new measure is a more comprehensive tool that assesses a wide variety of risk factors and stress responses. However, future studies of this measure are needed with more diverse samples. Prompt screening of NICU parents may facilitate earlier linkage with appropriate levels of resources or intervention. This research is crucial in improving risk assessment and psychosocial care for families in the NICU.


Subject(s)
Intensive Care Units, Neonatal , Mothers , Infant, Newborn , Infant , Child , Female , Humans , Reproducibility of Results , Parents/psychology , Risk Assessment
20.
J Pediatr Psychol ; 48(2): 166-175, 2023 02 21.
Article in English | MEDLINE | ID: mdl-36190446

ABSTRACT

OBJECTIVE: The aim of this study was to examine the emotional well-being of pediatric brain tumor survivors (PBTS) from the perspective of children's self-reports and parents' reports relative to matched comparison peers (COMP) and their parents. It was hypothesized that PBTS would self-report more depression symptoms, loneliness, and lower self-concept than COMP. We also hypothesized that mothers and fathers of PBTS would report more internalizing symptoms and lower total competence for their children. Age and sex effects were examined in exploratory analyses. METHODS: Families of 187 PBTS and 186 COMP participated across 5 sites. Eligible children in the PBTS group were 8-15 years of age and 1-5 years post-treatment for a primary intracranial tumor without progressive disease. COMP were classmates matched for sex, race, and age. RESULTS: PBTS self-reported lower scholastic, athletic, and social competence, but not more depression, loneliness, or lower global self-worth than COMP. Parents of PBTS reported more internalizing symptoms and lower total competence than parents of COMP. With few exceptions, group differences did not vary as a function of child age and sex. CONCLUSION: PBTS reported diminished self-concept in scholastic, athletic, and social domains, while their parents reported broader challenges with internalizing symptoms and total competence. Discrepancies between self-report and parent report require further study to inform targeted interventions for PBTS. Screening survivors for emotional challenges in follow-up clinic or in school setting may help with the allocation of psychosocial support and services for PBTS and their families.


Subject(s)
Brain Neoplasms , Emotions , Female , Humans , Child , Survivors/psychology , Mothers/psychology , Social Skills , Brain Neoplasms/therapy , Brain Neoplasms/psychology
SELECTION OF CITATIONS
SEARCH DETAIL
...