RESUMEN
BACKGROUND: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics. PROCEDURE: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19. RESULTS: Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time. CONCLUSIONS: COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.
Asunto(s)
COVID-19 , Supervivientes de Cáncer , Neoplasias , Masculino , Humanos , Adolescente , Femenino , Adulto Joven , Niño , Adulto , Neoplasias/psicología , Supervivientes de Cáncer/psicología , Cuidadores/psicología , Pandemias , Calidad de Vida/psicología , Sobrevivientes/psicologíaRESUMEN
OBJECTIVE: Challenges with health-related quality of life (HRQOL) are common among adolescents and young adults (AYA) with cancer. Literature on HRQOL has largely been focused on individual deficits, rather than individual strengths. The present study investigated the relations between a strengths-based concept called grit (i.e., perseverance and passion for long-term goals), self-management (i.e., health self-efficacy and adherence), and HRQOL among AYA with cancer. METHODS: Sixty-seven AYA receiving cancer treatment (Mage=17.1; 50.7% female; 25.4% Black, Hispanic, Asian, or a race other than white) and their caregivers (73.0% mothers) completed a semistructured, validated interview about adherence. AYA also completed self-report questionnaires about perceptions of their grit, health self-efficacy, and HRQOL. RESULTS: After controlling for sex, health self-efficacy (i.e., a cognitive self-management variable) mediated the relation between grit and HRQOL (95% confidence interval = .74-6.52). When testing adherence to medications, diet, or physical activity as mediators of the relation between grit and HRQOL, mediation models were non-significant. CONCLUSIONS: Among AYA with cancer, this study identified grit as an individual strength associated with more positive self-management beliefs, which in turn, related to better HRQOL. This adds to a growing body of literature supporting the need for resiliency-oriented, strengths-based approaches to AYA HRQOL research. Future directions include exploring the role of caregiver grit in relation to AYA cancer self-management, given that caregivers have demonstrated a high degree of involvement in AYA cancer care.
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Neoplasias , Calidad de Vida , Humanos , Femenino , Adolescente , Adulto Joven , Masculino , Calidad de Vida/psicología , Autoeficacia , Neoplasias/terapia , Neoplasias/psicología , Madres , Cumplimiento y Adherencia al Tratamiento , Encuestas y CuestionariosRESUMEN
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: Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer. METHODS: A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy. A cumulative sociodemographic factor variable was computed to investigate the potential additive effects of multiple sociodemographic factors associated with disparities. T-tests, Pearson correlations, and multivariate linear regressions were used. RESULTS: Cumulative sociodemographic factors were not related to transition readiness, and insurance type was the only factor associated with health competence beliefs and transition readiness, such that AYAs with public insurance reported lower healthcare satisfaction, cognitive competence, and transition goals relative to those with private insurance. There were no interaction effects; however, health competence beliefs were significantly associated with transition beliefs/expectations and goals. CONCLUSION: Public insurance is a barrier to holding positive beliefs/expectations and goals about transition, yet other sociodemographic factors associated with risks for poor transfer were not related to transition readiness. Multi-level interventions to reduce disparities and improve transition readiness should target health competence beliefs and barriers created by insurance.
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Supervivientes de Cáncer , Neoplasias , Transición a la Atención de Adultos , Adulto Joven , Adolescente , Humanos , Sobrevivientes/psicología , Neoplasias/terapia , Neoplasias/psicologíaRESUMEN
OBJECTIVE: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA. METHODS: The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age. RESULTS: Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified. DISCUSSION: Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.
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COVID-19 , Neoplasias , Adolescente , COVID-19/epidemiología , Humanos , Neoplasias/psicología , Pandemias , Psicometría , Reproducibilidad de los Resultados , Adulto JovenRESUMEN
BACKGROUND: Despite the promise of mobile health (mHealth), engagement is often too low for durable health behavior change, and little is known regarding why certain individuals abandon mHealth tools. PURPOSE: Guided by a mHealth engagement framework, we evaluated contextual predictors of objective engagement with an app for adolescents and young adults (AYA) who survived cancer. METHODS: One hundred and ten AYA survivors (M age = 20.5, 43% female, 30% racial/ethnic minority) were randomized to receive a disease self-management app that delivered 1-2 tailored messages/day for 16 weeks, and contained a survivorship care plan (SCP). Demographic, disease, psychosocial, and setting characteristics were examined as predictors of three objective engagement outcomes: (a) % of active app days, (b) % of messages read, and (c) viewed SCP in the app versus not. A subsample (n = 10) completed qualitative interviews to further assess engagement barriers. RESULTS: Self-reported uninterrupted app access (ß = -0.56, p < .001), iPhone (vs. Android) ownership (ß = 0.30, p < .001), and receiving the intervention in the summer (ß = -0.20, p = .01) predicted more active days. Lower depressed mood (ß = -0.30, p = .047) and uninterrupted app access (ß = -0.50, p < .001) predicted more messages read. Qualitatively, technical glitches and competing priorities were described as engagement barriers, whereas certain types of messages (e.g., health goal messages) were perceived as engaging. Among participants who had uninterrupted app access (n = 76), higher baseline motivation to change, better health perceptions, using the app during the summer, and iPhone ownership predicted higher engagement. CONCLUSIONS: Findings demonstrate the importance of comprehensively assessing and planning for multi-level ecological determinants of mHealth engagement in future trials. CLINICALTRIALS.GOV IDENTIFIER: NCT03363711.
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Supervivientes de Cáncer , Aplicaciones Móviles , Neoplasias , Telemedicina , Adolescente , Adulto , Minorías Étnicas y Raciales , Etnicidad , Femenino , Humanos , Masculino , Grupos Minoritarios , Neoplasias/terapia , Adulto JovenRESUMEN
BACKGROUND: This pilot study explored the feasibility and acceptability of implementing text-based assessments of oral chemotherapy adherence in adolescents and young adults (AYA) with leukemia. METHODS: AYA prescribed maintenance 6-mercaptopurine (6MP) received daily text message surveys and utilized an electronic pill bottle for 28 days. Text surveys assessed 6MP adherence and contextual associates (eg, mood). Feasibility was defined by recruitment/retention rates, survey completion rates, cost, and technical issues. After the 28-day period, AYA completed an acceptability survey. Secondary analyses compared text survey and electronic pill bottle adherence rates, and explored the daily associations between contextual factors and 6MP nonadherence. RESULTS: Eighteen AYA enrolled (M age = 18, range 15-22) and completed study procedures (100% recruitment and retention rates). Adherence survey completion rates were high (M = 88.9%), the technology cost was $204.00, and there were few technical issues. AYA reported high satisfaction with the surveys and perceived them as a helpful medication reminder. While not significantly correlated, survey and electronic pill bottle adherence data converged on the majority of days (>90%). Exploratory analyses showed that AYA were more likely to miss a dose of 6MP on weekends (OR = 2.33, P = .048) and on days when their adherence motivation (OR = 0.28, P = .047) and negative affect (OR = 3.92, P = .02) worsened from their own typical functioning. CONCLUSIONS: For AYA with leukemia, daily text-based surveys are a feasible and acceptable method for delivering medication adherence assessments, and may operate as a short-term intervention. To develop personalized mobile health interventions, findings also highlighted the need to study time-varying predictors of 6MP nonadherence.
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Antimetabolitos Antineoplásicos/uso terapéutico , Leucemia/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Mercaptopurina/uso terapéutico , Sistemas Recordatorios/instrumentación , Envío de Mensajes de Texto , Adolescente , Femenino , Humanos , Masculino , Motivación , Proyectos Piloto , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.
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Supervivientes de Cáncer/estadística & datos numéricos , Promoción de la Salud , Aplicaciones Móviles/estadística & datos numéricos , Neoplasias/prevención & control , Planificación de Atención al Paciente/normas , Supervivencia , Adolescente , Adulto , Niño , Estudios de Factibilidad , Femenino , Estudios de Seguimiento , Humanos , Masculino , Motivación , Pronóstico , Tasa de Supervivencia , Adulto JovenRESUMEN
OBJECTIVE: To describe innovative models of psychosocial care delivery that align with published Standards of Psychosocial Care of Children with Cancer and their Families, in efforts to bridge the divide between research and practice. METHODS: The Mattie Miracle Cancer Foundation, in partnership with the American Psychosocial Oncology Society reviewed 22 letters of intent and 13 full grants and awarded small grants to researchers with high quality projects that aimed to implement any of the published 15 Standards of Care. For three of the highest rated funded research projects, we describe the Standard implemented, the novel research design and implementation strategies, and how the research findings might inform the development, implementation, and dissemination of effective solutions for bridging Standard-to-practice gaps. RESULTS: The first study presented is an innovative eHealth intervention for parents of children with cancer designed to improve family functioning and decrease symptoms of acute distress, anxiety, and posttraumatic stress. The second study addresses the acceptability and feasibility of using daily text message assessments of oral chemotherapy adherence in adolescents and young adults with leukemia, and the third creates a blueprint for providing psychosocial services to siblings, including ways to overcome common implementation barriers. CONCLUSIONS: Several themes emerged from the studies presented, including (1) attention to barriers to previous attempts at implementation; (2) technology's role in delivering care; (3) the need for stakeholder involvement; and (4) consideration for multi-pronged solutions that address heterogeneity in care settings. Next steps for integrating the Standards of Psychosocial Care into clinical practice are discussed.
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Atención a la Salud/organización & administración , Neoplasias/psicología , Neoplasias/terapia , Pediatría/normas , Nivel de Atención/organización & administración , Estrés Psicológico/diagnóstico , Estrés Psicológico/terapia , Adolescente , Niño , Práctica Clínica Basada en la Evidencia , Femenino , Accesibilidad a los Servicios de Salud/normas , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Oncología Médica/normas , Evaluación de Necesidades , Padres , Calidad de la Atención de Salud , Estrés Psicológico/etiologíaRESUMEN
PURPOSE: Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors. METHODS: Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n = 31) or an AYA survivor handbook (n = 30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received one to two health-related text messages per day over 16 weeks. RESULTS: THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability. CONCLUSIONS: Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.
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Supervivientes de Cáncer/psicología , Promoción de la Salud/métodos , Neoplasias/rehabilitación , Envío de Mensajes de Texto/estadística & datos numéricos , Adolescente , Estudios de Factibilidad , Femenino , Humanos , Masculino , Atención Plena/métodos , Motivación , Neoplasias/psicología , Apoyo Social , Adulto JovenRESUMEN
BACKGROUND: The COVID-19 pandemic has ignited wider clinical adoption of digital health tools, including mobile health apps (mHealth apps), to address mental and behavioral health concerns at a distance. While mHealth apps offer many compelling benefits, identifying effective apps in the crowded and largely unregulated marketplace is laborious. Consumer demand and industry productivity are increasing, although research is slower, making it challenging for providers to determine the most credible and safe apps for patients in need. OBJECTIVES/METHODS: This commentary offers a practical, empirically guided framework and associated resources for selecting appropriate mHealth apps for pediatric populations during the pandemic and beyond. RESULTS: In the first stage, Narrow the target problem, end user, and contender apps. Beginning the search with continuously updated websites that contain expert app ratings can help expedite this process (e.g., Psyberguide). Second, Explore each contender app's: (a) scientific and theoretical support (e.g., are app components consistent with health behavior change theories?), (b) privacy policies, and (c) user experience (e.g., through crowdsourcing feedback about app usability and appeal via social media). Third, use clinical expertise and stakeholder feedback to Contextualize whether the selected app is a good fit for a particular patient and/or caregiver (e.g., by considering age, race/ethnicity, ability, gender, sexual orientation, technology access), including conducting a brief self-pilot of the app. CONCLUSION: Youth are increasingly turning to technology for support, especially during the pandemic, and pediatric psychologists must be primed to recommend the most credible tools. We offer additional recommendations for rapidly disseminating evidence-based apps to the public.
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Betacoronavirus , Infecciones por Coronavirus/prevención & control , Trastornos Mentales/terapia , Aplicaciones Móviles/normas , Pandemias/prevención & control , Neumonía Viral/prevención & control , Cuarentena/psicología , Telemedicina/métodos , Adolescente , COVID-19 , Niño , Infecciones por Coronavirus/complicaciones , Infecciones por Coronavirus/psicología , Humanos , Estudios Longitudinales , Masculino , Trastornos Mentales/complicaciones , Trastornos Mentales/psicología , Neumonía Viral/complicaciones , Neumonía Viral/psicología , SARS-CoV-2RESUMEN
Objectives: A meta-analysis examined family functioning and medical adherence in children and adolescents with chronic health conditions. Family functioning was evaluated at the level of the family unit, as well as parent-child interactions. Methods: We conducted literature searches using PubMed, PsycINFO, SCOPUS, Web of Science, and Cochrane. After reviewing 764 articles, 62 studies met eligibility criteria. Pearson's r correlations were the effect size of interest. We conducted both omnibus and domain-specific (e.g., family conflict, cohesion) meta-analyses. Meta-regressions examined whether relevant covariates related to the magnitude of the effect. Results: The omnibus meta-analysis showed that family functioning was significantly related to medical adherence across a variety of pediatric chronic health conditions. Lower family conflict, greater family cohesion, greater family flexibility, more positive communication, and better family problem-solving were each associated with better adherence. There were no significant differences in the magnitude of the omnibus effect based on child age, measurement features (subjective vs. objective or bioassay adherence; family unit vs. parent-child interactions), or study quality. Conclusions: Consistent with social-ecological frameworks, findings supported links between family functioning and medical adherence. This study highlights several limitations of the extant research, including absence of a guiding theoretical framework and several methodological weaknesses. We offer clinical and research recommendations for enhancing scientific understanding and promotion of adherence within the family context.
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Enfermedad Crónica/terapia , Relaciones Familiares/psicología , Cooperación del Paciente/psicología , Adolescente , Niño , Preescolar , Enfermedad Crónica/psicología , Conflicto Familiar/psicología , Femenino , Humanos , MasculinoRESUMEN
Background: Informed by the Pediatric Self-Management Model, the present study tested relationships between parent and family functioning, sickle cell disease (SCD) self-management, and health outcomes for children with SCD. Method: 83 children with SCD and a parent completed baseline data as part of a larger investigation of a family-based, problem-solving intervention for children with SCD (M age = 8.47). Youth and parents completed a measure of child health-related quality of life (HRQOL), and parents completed measures of family efficacy, parenting stress, and SCD self-management. SCD pain episodes and urgent health utilization information over the past year were obtained via medical chart review. Results: SCD self-management mediated the relationship between parent-reported family efficacy and parent proxy HRQOL, as well as the relationship between parenting stress and child and parent proxy HRQOL. Mediation models were nonsignificant for outcomes beyond HRQOL, including SCD pain episodes and urgent health utilization. Conclusion: Fostering family efficacy and reducing parenting stress may be meaningful intervention targets for improving SCD self-management and child HRQOL among school-aged children. Although findings were consistent with the Pediatric Self-Management Model in terms of HRQOL, the model was not supported for pain episodes or urgent health utilization, highlighting the need for multi-method, longitudinal research on the SCD self-management behaviors that are linked to preventable health outcomes.
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Anemia de Células Falciformes/tratamiento farmacológico , Familia/psicología , Calidad de Vida/psicología , Automanejo , Niño , Femenino , Humanos , Masculino , Modelos Psicológicos , Responsabilidad Parental/psicología , Padres/psicologíaRESUMEN
This study aimed to assess college providers' basic knowledge of the health risks of young adult cancer survivors (YAS) and related care guidelines and to determine whether an educational in-service is an effective platform for increasing college health providers' knowledge about survivorship care at a large university health center. During phase 1, staff from college health centers and office of disabilities in the Philadelphia area (n = 40 staff members from 24 colleges/universities) completed a needs assessment on their experiences with YAS and preferences for education and care coordination. During phase 2, a 1-h educational in-service, informed by results of the survey, was provided to 18 health center medical providers. While most providers indicated that YAS are at risk for chronic health conditions because of cancer treatment, nearly all were unfamiliar with the content of published long-term follow-up guidelines for cancer survivorship. Over half did not have knowledge of cancer survivorship services in their area. All respondents were interested in more education on cancer survivorship care. Attendees of the in-service increased their knowledge of survivorship follow-up guidelines, awareness of local survivorship resources, and comfort with caring for YAS at posttest relative to baseline. The in-service was highly acceptable to providers and feasible to implement. College providers had little baseline knowledge of cancer survivorship guidelines, but were motivated to obtain more information. Through an educational in-service, college health providers may be better equipped to provide acute and longitudinal survivorship care to a vulnerable population who are at risk for inadequate engagement in risk-based follow-up care.
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Supervivientes de Cáncer , Competencia Clínica , Servicios de Salud para Estudiantes , Universidades , Continuidad de la Atención al Paciente , Femenino , Humanos , Capacitación en Servicio , Masculino , Evaluación de Necesidades , Pennsylvania , Guías de Práctica Clínica como Asunto , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Objectives: The present longitudinal, multi-method, and multi-informant study examined biological, neuropsychological, and social predictors of medical adherence and responsibility among early adolescents with spina bifida (SB). Methods: Youth with SB (M age = 11.40 at Time 1) and their parents and teachers completed surveys, and families and peers completed observational assessments, at two biennial data collection time points (n = 112 for both time points). Multinomial logistic regressions tested predictors of group membership (adherent vs. nonadherent and child responsible vs. not responsible with SB medical tasks). Results: Consistent with the bio-neuropsychosocial model, several risk factors emerged for SB management. Impaired gross motor classification and low IQ were barriers to obtaining medical responsibility, and high family stress and executive dysfunction were barriers to adherence and responsibility. Conclusions: This study offered intervention targets to promote self-management and adherence for youth with SB and their families, including parent stress-management and family problem-solving.
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Conducta del Adolescente/fisiología , Cumplimiento de la Medicación/psicología , Padres , Autocuidado/psicología , Disrafia Espinal/psicología , Disrafia Espinal/terapia , Adolescente , Ansiedad/psicología , Cateterismo , Niño , Estreñimiento/psicología , Manejo de la Enfermedad , Incontinencia Fecal/psicología , Femenino , Humanos , Laxativos , Estudios Longitudinales , Masculino , Padres/educación , Padres/psicología , Educación del Paciente como Asunto , Disrafia Espinal/rehabilitación , Irrigación TerapéuticaRESUMEN
Objective: The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods: Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results: Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions: TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.
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Supervivientes de Cáncer/psicología , Transición a la Atención de Adultos/organización & administración , Adaptación Psicológica , Adolescente , Análisis Factorial , Femenino , Humanos , Masculino , Determinación de la Personalidad , Psicometría , Reproducibilidad de los Resultados , Adulto JovenRESUMEN
OBJECTIVE: This study aimed to evaluate rates of medical adherence, responsibility, and independence skills across late childhood and adolescence in youth with spina bifida (SB) and to explore associations among these disease self-management variables. METHOD: 111 youth with SB, their parents, and a health professional participated at two time points. Informants completed questionnaires regarding medical adherence, responsibility-sharing, and child independence skills. RESULTS: Youth gained more responsibility and independence skills across time, although adherence rates did not follow a similar trajectory. Increased child medical responsibility was related to poorer adherence, and father-reported independence skills were associated with increased child responsibility. CONCLUSIONS: This study highlights medical domains that are the most difficult for families to manage (e.g., skin checks). Although youth appear to gain more autonomy across time, ongoing parental involvement in medical care may be necessary to achieve optimal adherence across adolescence.
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Actividades Cotidianas/psicología , Manejo de la Enfermedad , Cumplimiento de la Medicación/estadística & datos numéricos , Autocuidado/estadística & datos numéricos , Disrafia Espinal/psicología , Disrafia Espinal/terapia , Adolescente , Conducta del Adolescente/psicología , Adulto , Niño , Conducta Infantil/psicología , Femenino , Humanos , Estudios Longitudinales , Masculino , Cumplimiento de la Medicación/psicología , Padres , Autocuidado/psicología , Conducta Social , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To examine observed autonomy-promoting and -inhibiting parenting behaviors during preadolescence as predictors of adjustment outcomes in emerging adults with and without spina bifida (SB). METHODS: Demographic and videotaped interaction data were collected from families with 8/9-year-old children with SB (n = 68) and a matched group of typically developing youth (n = 68). Observed interaction data were coded with macro- and micro-coding schemes. Measures of emerging adulthood adjustment were collected 10 years later (ages 18/19 years; n = 50 and n = 60 for SB and comparison groups, respectively). RESULTS: Autonomy-promoting (behavioral control, autonomy-relatedness) and -inhibiting (psychological control) observed preadolescent parenting behaviors prospectively predicted emerging adulthood adjustment, particularly within educational, social, and emotional domains. Interestingly, high parent undermining of relatedness predicted better educational and social adjustment in the SB sample CONCLUSIONS: Parenting behaviors related to autonomy have long-term consequences for adjustment in emerging adults with and without SB.
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Adaptación Psicológica , Conflicto Familiar/psicología , Responsabilidad Parental/psicología , Disrafia Espinal/psicología , Adolescente , Niño , Femenino , Humanos , Control Interno-Externo , Estudios Longitudinales , Masculino , Autonomía Personal , Valores de Referencia , Autocuidado/psicología , Ajuste Social , Trastornos Relacionados con Sustancias/psicología , Adulto JovenRESUMEN
Adolescent and young adult (AYA) patients with cancer often demonstrate suboptimal engagement in cancer care due to a host of logistical, developmental, and psychological factors. This clinical case study of a young adult (YA) with cancer highlights the multiple ways in which social anxiety disorder (SAD) impacted a YA's engagement in cancer care. The case study also details the use of an evidence-based treatment for SAD to support behavioral change. Identification and receipt of timely evidence-based psychological intervention for SAD have the potential to improve AYA well-being and enhance cancer care engagement.