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BACKGROUND: Lack of diversity in participants throughout the research process limits the generalizability of findings and may contribute to health disparities. There are unique challenges to recruitment of families to pediatric cancer research studies, especially for those from disadvantaged backgrounds. Thus, there is a need to evaluate the most effective recruitment and retention strategies to optimize equitable recruitment of diverse participants. METHODS: The present study adapted and implemented methods outlined previously in the literature. These previous efforts were developed to address barriers to pediatric research, behavioral health intervention research and research with Black adolescents. Recruitment and retention strategies are described across four different time points: pre-approach, initial connection, building connection and follow-up. Eligible families of children with a pediatric cancer diagnosis were approached during a routine oncology visit. Once consented, enrollment and retention rates over three timepoints of data collection were recorded and evaluated. RESULTS: Results indicated high rates of enrollment (86%) and retention (95%) for eligible participants. There were no trends in heightened attrition for any specific subgroup. CONCLUSIONS: The findings of this study are promising and suggest these recruitment and retention strategies may be useful in recruiting individuals from disadvantaged backgrounds.
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Equidad en Salud , Neoplasias , Selección de Paciente , Humanos , Niño , Adolescente , Femenino , Masculino , Negro o Afroamericano/estadística & datos numéricos , Investigación Biomédica/estadística & datos numéricos , Investigación Biomédica/métodos , Pediatría/métodos , Pediatría/estadística & datos numéricosRESUMEN
BACKGROUND: Engaging in physical activity (PA) throughout cancer treatment offers many benefits, but may be challenging due to cancer-related pain. Pain research in pediatric cancer has primarily focused on procedural pain, with fewer studies exploring how pain affects PA. The current study qualitatively investigated the impact of pain on PA in youth with acute lymphoblastic leukemia (ALL) using a biopsychosocial framework. PROCEDURE: As part of a larger study, caregivers (N = 17) of a child diagnosed with ALL and on treatment for less than 1 year completed a semi-structured interview about perceptions of their child's health behaviors during ALL treatment. This secondary analysis focused specifically on discussions about pain and its impact on PA. We followed Braun and Clarke's (2006) six-step thematic analysis framework to identify themes of pain-related barriers to PA. RESULTS: Key pain-related barriers endorsed by caregivers included: interactions among pain and treatment effects, caregiver distress around seeing their child in pain, and fear of interfering with medical equipment. Despite these barriers, caregivers found creative solutions to adapt activities for their child. Caregivers were reassured by PA advice from their medical team; however, advice varied between teams. CONCLUSION: The relationship between pain and PA during ALL treatment is influenced by an intricate system of biological (e.g., treatment effects), psychological (e.g., parental distress), and social (e.g., communication among families and medical teams) factors. Future directions include identifying evidence-based PA recommendations and exploring family-team communication dynamics. This study also highlights a need to prioritize ALL pain management and involve caregivers in behavioral treatment protocols to improve PA.
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BACKGROUND: Changes in health behaviors and weight are common during the early phases of pediatric acute lymphoblastic leukemia treatment, and may negatively impact treatment tolerability. Given that ALL is most prevalent in children, caregivers play an essential role in shaping health behaviors during treatment. This study presents a qualitative analysis of semi-structured interviews with caregivers of youth in the early phases of ALL treatment. PROCEDURE: Caregivers (N = 17, 95% female) of a child (M age = 6.76 years) diagnosed with ALL and on treatment for less than 1 year (M = 8.7 months since diagnosis) completed a semi-structured interview about perceptions of their child's nutrition, physical activity, sedentary time, and weight during ALL treatment. Thematic analysis followed Braun and Clark's six-step framework (2006). Two coders established reliability (alpha = .88) and used a multi-pass coding system to extract themes. RESULTS: Caregivers' concerns around their child's weight during ALL treatment primarily centered around avoiding malnutrition. Weight gain during treatment was less of a concern and often viewed as protective. Caregivers reported encouraging their child to eat palatable, calorie-dense foods to mitigate risk for weight loss. Caregivers also expressed concern that children were less active and more sedentary due to treatment-related pain. Caregivers discussed health behaviors during treatment as being child-directed, rather than parent- or provider-directed. CONCLUSION: Future interventions may consider strategies to engage in joint parent-child decisions and caregiver education around risks of excessive weight gain during treatment. Interventions should include anticipatory guidance and aim to support parents in developing skills to support their child's health behaviors during treatment.
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OBJECTIVE: Consistent family rules and routines promote positive adaptation to stress and may be protective to child emotional and behavioral functioning. Few studies have quantified family engagement in these behaviors during pediatric cancer treatment or examined associations with child emotional and behavioral health. METHODS: In this cross-sectional observational study, 86 primary caregivers of youth ages 2-14 years (M = 7.9) with an initial diagnosis of cancer within 16 weeks reported on their frequency of engagement in family rules and routines (e.g., sleep, schoolwork, and meal routines) before their child's cancer diagnosis and their current frequency of engagement in the same routines. Caregivers also reported demographics, psychosocial distress, and child emotional and behavioral health outcomes. Analyses examined demographic and psychosocial factors associated with engagement in rules and routines during cancer treatment, and associations with child emotional and behavioral health. RESULTS: Families reported a lower frequency of engagement in rules and routines during cancer treatment, compared to before treatment (mean difference 0.8 SDs [95% confidence interval 0.7-1.1 SDs]). Caregiver factors associated with lower engagement in rules and routines during treatment included being married, having lower educational attainment, and higher levels of psychosocial distress. Families who engaged in higher levels of rules and routines during treatment reported fewer child externalizing and behavioral challenges. There was limited evidence of association between family rules and routines and child internalizing outcomes. CONCLUSIONS: Results found that engaging in family rules and routines during cancer treatment was associated with fewer child behavioral challenges during treatment. Future directions include longitudinal examinations of family rules, routines, and child emotional/behavioral outcomes to examine directional impact over time.
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Trastornos de la Conducta Infantil , Neoplasias , Adolescente , Niño , Humanos , Estudios Transversales , Emociones , Neoplasias/terapia , Trastornos de la Conducta Infantil/psicologíaRESUMEN
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.
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Distinciones y Premios , Investigación Biomédica , Estados Unidos , Niño , Humanos , Femenino , Psicología Infantil , Investigadores , National Institutes of Health (U.S.) , MentoresRESUMEN
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.
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Neoplasias Encefálicas , Emociones , Femenino , Humanos , Niño , Sobrevivientes/psicología , Madres/psicología , Habilidades Sociales , Neoplasias Encefálicas/terapia , Neoplasias Encefálicas/psicologíaRESUMEN
OBJECTIVE: Pediatric nurses work closely with families of children with new cancer diagnoses and can provide essential supports to promote coping and adjustment. This cross-sectional qualitative study aimed to gather caregiver perspectives on barriers and facilitators to adaptive family functioning during the early phases of cancer treatment, with a focus on family rules and routines. METHODS: Caregivers (N = 44) of a child diagnosed with cancer and receiving active treatment completed a semi-structured interview about their engagement in family rules and routines. Time since diagnosis was abstracted from the medical record. A multi-pass inductive coding strategy was utilized to extract themes identifying caregiver-reported facilitators and barriers to maintaining consistent family rules and routines during the first year of pediatric treatment. RESULTS: Caregivers identified three primary contexts that presented barriers and facilitators to engagement in family rules and routines: the hospital setting (n = 40), the family system (n = 36), and the broader social and community setting (n = 26). Caregivers reported barriers primarily related to the demands of their child's treatment, additional caregiving needs, and needing to prioritize basic daily tasks (e.g., food, rest, household needs). Caregivers reported that different networks of support across contexts facilitated family rules and routines by expanding caregiver capacity in distinctive ways. CONCLUSIONS: Findings provided insight into the importance of having multiple networks of support to extend caregiving capacity in the context of cancer treatment demands. PRACTICE IMPLICATIONS: Providing nurses with training to facilitate problem-solving skills in the context of competing demands may provide a new avenue of clinical intervention at the bedside.
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Adaptación Psicológica , Neoplasias , Niño , Humanos , Estudios Transversales , Cuidadores , Hospitales , Investigación Cualitativa , Neoplasias/terapiaRESUMEN
BACKGROUND: Assessment of caregiver needs is a recommended standard of care in pediatric oncology. Caregivers of pediatric brain tumor survivors (PBTS) are a subgroup that may be at highest psychosocial risk. This study examined psychosocial functioning of caregivers of PBTS in comparison to caregivers of youth without cancer history. We hypothesized that caregivers of PBTS would exhibit more psychological symptoms, higher caregiver burden, and lower perceptions of social support than caregivers of comparison youth. PROCEDURE: As part of a five-site study, we utilized a matched sample design to evaluate psychosocial functioning of 301 caregivers of 189 PBTS (ages 8-15) who were 1-5 years post treatment, and 286 caregivers of 187 comparison youth matched for sex, race, and age. Caregivers completed measures of psychological symptoms, caregiver burden, and perceptions of social support. Repeated measures mixed models compared outcomes between groups and examined differences based on caregiver sex. Socioeconomic status (SES) was examined as a moderator of significant main effects. RESULTS: Caregivers of PBTS reported similar levels of psychological symptoms to caregivers of comparison youth. Mothers of PBTS mothers reported higher caregiver burden and lower perceptions of social support than mothers of comparison youth. Low SES exacerbated group differences in caregiver burden. CONCLUSIONS: Mothers of PBTS may have more caregiving responsibilities and perceive less social support, but reported similar levels of psychological symptoms to comparison mothers; fathers of PBTS were similar to comparison fathers. The mechanisms involved in this complex psychosocial dynamic require further investigation.
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Neoplasias Encefálicas , Cuidadores , Adolescente , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , Cuidadores/psicología , Niño , Humanos , Funcionamiento Psicosocial , Calidad de Vida/psicología , Apoyo Social , Sobrevivientes/psicologíaRESUMEN
Green schoolyards may buffer against the effects of urbanization through increasing access to nature and its benefits. The present study was a community-academic partnership that examined the effects of green schoolyard renovations on utilization, physical activity (PA), and social interactions as well as perceptions of safety, neighborhood climate, and social cohesion among those living in low-income, urban neighborhoods. Utilizing behavioral mapping techniques and multi-informant surveys (i.e., caregivers, teachers, and community members), changes from pre- to postrenovation were assessed at two low-income, urban schools. Behavioral mapping results demonstrated increases in utilization and prosocial interactions among youth from pre- to postrenovation. Levels of moderate-to-vigorous PA also increased from pre- to postrenovation at one school. Survey data from community stakeholders revealed improvements in the perception of schoolyard safety and school-community relationships as well as reductions in bullying postrenovation. Green schoolyards may offer a safe space for children and adults to engage in social, outdoor activities, particularly in low-income, urban neighborhoods.
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Características de la Residencia , Instituciones Académicas , Adolescente , Adulto , Niño , Ejercicio Físico , Humanos , Pobreza , EstudiantesRESUMEN
OBJECTIVE: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. METHODS: This exploratory mixed-methods, cross-sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID-19 pandemic. Caregivers completed validated questionnaires assessing demographic and child illness characteristics, psychosocial distress, and cancer-related stressors, and participated in a semi-structured interview about family rules and routines. RESULTS: Caregivers reported changes in bedtime, mealtime, and school routines, relaxed behavioral expectations and rules around screen time, and new rules and routines around treatment, medications, and infection control. Caregivers with elevated levels of psychosocial distress reported more changed routines than caregivers with low levels of psychosocial distress. Caregivers who endorsed more cancer-related stressors reported more new rules and routines than those who reported fewer cancer-related stressors. Demographic and illness factors were not significantly associated with the number of changed, new, or stable family rules and routines. CONCLUSIONS: Families may relax rules and routines during the first several months of diagnosis, and this may be related to side effects of treatment and limited caregiver capacity. The long-term impact of changes in family rules and routines during cancer treatment warrants further study given that accommodating parenting strategies have been associated with adverse short- and long-term child health and behavior outcomes.
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COVID-19 , Neoplasias , Adolescente , Cuidadores , Niño , Estudios Transversales , Familia , Humanos , Neoplasias/terapia , Pandemias , Responsabilidad Parental , SARS-CoV-2RESUMEN
OBJECTIVE: Urban minority girls are at risk for summertime weight gain, and may also experience insufficient summertime sleep. Few studies have objectively measured sleep in this population or examined correlates, including physical activity (PA). This study is the first to objectively describe summertime sleep among urban minority girls. METHODS: Data were collected at a community-based summer program that promoted PA (n = 60 girls, ages 10-14 years), at two time points: before beginning programming (T1; unstructured context) and during the final week of programming (T2; structured context). RESULTS: At both time points, participants experienced shorter nighttime sleep than the recommended amount for girls their age. African American girls recorded significantly less sleep than Latina girls in the unstructured context. Findings also suggest that sleep schedules have an influential role in youths' abilities to obtain adequate sleep. CONCLUSION: Overall, summertime sleep is an understudied health behavior that may be important to consider among minority youth.
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Negro o Afroamericano/psicología , Ejercicio Físico/psicología , Conductas Relacionadas con la Salud/etnología , Hispánicos o Latinos/psicología , Grupos Minoritarios/psicología , Estaciones del Año , Sueño , Adolescente , Chicago , Niño , Femenino , Estudios de Seguimiento , Humanos , Salud Urbana/etnologíaRESUMEN
Objective: Understand the perspectives of children who survived acute lymphoblastic leukemia (ALL) and their parents to adapt a guideline-based, family-based, intensive health behavior and lifestyle intervention treatment for this population. Methods: Nine children 8-17 years of age [median = 12 years (IQR 10-16), median years off treatment = 5 (2-7)] who survived ALL and eleven parents participated in focus groups to assess perceptions of weight, weight-related behaviors, and perceived barriers to FBT. Responses were analyzed thematically, and resultant adaptations were guided by the Framework for Reporting Adaptations and Modifications-Enhanced (FRAME). Results: Topics and themes identified included mental and physical health concerns (e.g., treatment-related medical complications, body esteem), a perception of excess weight as protective, the continuing influence of eating habits established during cancer treatment (e.g., instrumental feeding practices, snacking), and potential barriers to activity (i.e., physical limitations, lack of sport experience). Resultant adaptations to FBT were contextual (e.g., virtual delivery) and related to the content, including an emphasis on weight management in the context of survivorship; education about late effects, overweight and obesity; increased emphasis on structured eating patterns and instrumental eating; provider recommended physical activity; and tailored emotion-focused and body esteem content. Conclusions: Focus groups for children who survived pediatric ALL provided insights that aided the adaptation of FBT for this population. A pilot trial of FBT for children who survived ALL and their parents is underway to evaluate acceptability, feasibility, and preliminary efficacy. Trial registration: ClinicalTrials.gov identifier: NCT05410574.
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Previous literature highlights the impact of COVID-19 on family functioning. Less is known about the impact of the pandemic on families of pediatric cancer patients. In order to determine universal and unique risk and resilience factors of these families during the pandemic, a qualitative analysis was conducted on families currently receiving cancer treatment at a Midwestern hospital. Results of the data analysis depict ways in which these families have been impacted by and have adapted to COVID-19. These findings suggest that families of pediatric cancer patients have unique experiences in the context of COVID-19, in addition to universal experiences outlined in previous literature.
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COVID-19 , Neoplasias , Humanos , Niño , COVID-19/epidemiología , Pandemias , Neoplasias/epidemiologíaRESUMEN
Adoption of certain behavioral and social routines that organize and structure the home environment may help families navigate the challenges presented by the COVID-19 pandemic. The current cross-sectional study aimed to assess family routines prior to and during the COVID-19 pandemic and examine associations with individual and family well-being. Using a national sample, 300 caregivers of children ages 6-18 were surveyed using Amazon Mechanical Turk platform during the first three months of COVID-19 pandemic in the United States. Caregivers reported on family demographics, COVID-19-related stress, engagement in family routines (prior to and during the COVID-19 pandemic), stress mindset, self-efficacy, and family resiliency. Overall, families reported engaging in fewer routines during the COVID-19 pandemic compared to prior to the pandemic. COVID-19-related stress was highest in low-income families, families of healthcare workers, and among caregivers who had experienced the COVID-19 virus. Moreover, COVID-19-related stress was negatively related to self-efficacy, positively related to an enhancing stress mindset, and negatively related to family resilience. Engagement in family routines buffered relations between COVID-19-related stress and family resilience, such that COVID-19-related stress was not associated with lower family resilience among families that engaged in high levels of family routines. Results suggest that family routines were challenging to maintain in the context of the COVID-19 pandemic, but were associated with better individual and family well-being during this period of acute health, economic, and social stress.
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Child obesity is a major public health issue with a high disease burden. Although numerous contributing factors have been identified, the family home environment is a central context of influence that requires deeper understanding. The level of organization in the family home environment may influence obesity and obesogenic behaviors, but the literature has suffered from the lack of a strong overarching construct and model to guide this area of research. Family entropy is a conceptual framework that fills this gap by representing the level of organization across the home environment. The current study empirically assesses family entropy using factor analysis in a longitudinal sample of 968 children measured yearly from Grades 3 to 6 as part of the NICHD Study of Early Child Care and Youth Development. Mixed modeling using MPLUS examined the influence of family entropy on child weight both directly and indirectly through weight-related health behaviors (i.e., sleep and physical activity), and considered the moderating role of socioeconomic status (SES). Results suggest that family entropy is comprised of distinct elements of household organization and disorganization, which are moderately related. Household disorganization may be particularly detrimental to child sleeping behavior both concurrently and over time in families of both high and low SES. The study concludes with recommendations for advancing understanding of the home environment by using nuanced measurement strategies, and incorporating support for household organization within child obesity prevention and intervention efforts.
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Peso Corporal/fisiología , Conducta Infantil , Composición Familiar , Conductas Relacionadas con la Salud , Obesidad Infantil/prevención & control , Obesidad Infantil/terapia , Acelerometría , Niño , Femenino , Humanos , Masculino , Relaciones Padres-Hijo , Sueño/fisiología , Medio SocialRESUMEN
Children from low-income families are increasingly growing up in urban areas with limited access to nature. In these environments, strategies that promote access to natural outdoor spaces, such as green schoolyards, may enhance positive youth development outcomes by promoting physical activity (PA) and prosocial behavior, as well as increasing perceptions of safety. The current study examines children's PA and social interactions, as well as caregiver and teacher perceptions of safety, injuries, teasing/bullying, and gang activity on three newly renovated green schoolyards in low-income urban neighborhoods. A multi-method strategy, including behavioral mapping and caregiver- and teacher-reported surveys, was utilized at three time points to examine positive youth development outcomes and maintenance of effects over time. Analyses revealed that children evidenced a range of PA on the green schoolyards and demonstrated significant decreases in sedentary activity over time. The majority of children were engaged in social interactions with peers on the green schoolyards when observed. Less than 3% of interactions were negative and follow-up analyses found significant increases in positive interactions on the green schoolyards up to 24 months post-renovation. Caregivers and teachers reported increased perceptions of safety, fewer injuries, less teasing/bullying, and less gang-related activity on the renovated green schoolyards in comparison to the pre-renovation schoolyards, and these effects were maintained up to 32 months post-renovation. Overall, the study suggests that green schoolyards may promote positive development outcomes among youth living in urban, low-income neighborhoods by providing natural and safe spaces for PA and prosocial behavior.
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Parents often underestimate their child's weight status, particularly when the child is overweight or obese. This study examined acculturation, stress, coping, and involuntary responses to stress and their relation to estimation of child's weight status among Mexican-origin immigrant families. Eighty-six families provided data on child's height and weight, caregiver's perception of their child's weight status, and caregiver's responses to acculturation, stress, and coping scales. Parents underestimated their child's weight status, particularly when the child was overweight or obese. Although acculturation and stress were not associated with accuracy, parents' responses to stress were linked to parent perceptions. Parents who reported more frequent use of involuntary engagement (e.g., rumination, physiological arousal) were more accurate. Future research, as well as healthcare providers, should consider how parents manage and respond to stress in order to fully understand the factors that explain weight perceptions among Mexican-origin immigrant parents.
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Aculturación , Adaptación Psicológica , Peso Corporal , Americanos Mexicanos/psicología , Padres/psicología , Estrés Psicológico/etnología , Índice de Masa Corporal , Niño , Emigrantes e Inmigrantes/psicología , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , PercepciónRESUMEN
Summertime has emerged as a high-risk period for weight gain among low-income minority youth who often experience a lack of resources when not attending school. Structured programming may be an effective means of reducing risk for obesity by improving obesogenic behaviors among these youth. The current multi-method study examined sedentary time, physical activity, and dietary intake among low-income urban minority girls in two contexts: an unstructured summertime setting and in the context of a structured 4-week community-based summer day camp program promoting physical activity. Data were analyzed using paired-sample t tests and repeated-measure analyses of variance with significance at the p < .05 level. Results evidenced no significant differences in total calories and fat consumed between the unstructured and structured settings. Participants exhibited significant increases in fruit consumption and physical activity and significant decreases in sedentary time of over 2 h/day and dairy consumption when engaged in structured summer programming. All improvements were independent of weight status and age, and African-American participants evidenced greater changes in physical activity during programming. The study concludes that structured, community-based summertime programming may be associated with fewer obesogenic behaviors in low-income urban youth and may be a powerful tool to address disparities in weight gain and obesity among high-risk samples.