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1.
J Pediatr Gastroenterol Nutr ; 76(1): 38-42, 2023 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-36123761

RESUMEN

The objective of this study was to design, code, and test the feasibility, acceptability, and preliminary efficacy of a digital therapeutic self-management tool for pediatric inflammatory bowel disease (IBD). The Self-Management Assistance for Recommended Treatment (SMART) portal development involved an iterative co-design process with a series of focus group/interview sessions with key stakeholders. Subsequently, a pilot, single-arm, open-label trial was conducted with 22 patients; medication adherence was the primary outcome. Usage data for the SMART portal were good, with patients demonstrating better engagement than parents. Results from the trial demonstrated improvement in medication adherence ( M = 24%-31%; t = 7.94, P < 0.05) and self-management barriers as well as trends in health-related quality of life and symptoms. The SMART portal is a feasible digital therapeutic self-management tool for pediatric IBD that demonstrated preliminary efficacy in this pilot trial. Large, controlled trials are needed to definitively determine the clinical efficacy of this tool.


Asunto(s)
Enfermedades Inflamatorias del Intestino , Automanejo , Humanos , Adolescente , Niño , Calidad de Vida , Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , Cumplimiento de la Medicación , Resultado del Tratamiento , Estudios de Factibilidad
2.
J Pediatr Nurs ; 71: 127-134, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36528455

RESUMEN

PURPOSE: To describe the process of developing, and evaluating the feasibility and acceptability of, an EMR-based transition readiness assessment. DESIGN AND METHODS: A Cerner-based version of the UNC TRxANSITION Index was implemented across four pediatric subspecialty clinics: epilepsy, inflammatory bowel disease; type 1 diabetes, oncology survivorship. The feasibility was assessed by each's clinic's ability to meet form completion goals and their assessment rate. Acceptability was assessed via family refusal rate, a staff-completed feedback questionnaire, and whether the form was adopted into routine clinical care after completion of the pilot study. RESULTS: All clinics met form completion goals (N = 10/clinic). The assessment rate ranged from 66 to 100% across clinics. No families refused completion of the form. Most staff (70%) reported completing the form in <10 min. Staff reported on challenges experienced and provided recommendations to streamline administration and enhance clinical care. All staff reported the form helped them identify knowledge gaps in their patients. Two clinics continued using the form following completion of the pilot study. CONCLUSIONS: Implementation was most feasible in clinics that were well-staffed and had lengthier patient visits, however, time and staff resources were the biggest challenges to implementation across clinics. Based on staff feedback to improve efficiency and developmentally-tailor assessment, the form will be divided into Beginner Skills and Advanced Skills. PRACTICAL IMPLICATIONS: Integrating transition readiness assessment into the EMR has the potential to improve clinical care by facilitating staff's ability to efficiently identify knowledge gaps in their transition-aged patients and intervene.


Asunto(s)
Registros Electrónicos de Salud , Enfermedades Inflamatorias del Intestino , Niño , Humanos , Anciano , Proyectos Piloto
3.
J Clin Psychol Med Settings ; 29(2): 262-273, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-34302580

RESUMEN

Black children are exposed to police violence at alarming rates. Such stress impacts development and treatment of physical health problems. In the current discourse, we introduce STYLE (Self-examination, Talk about community-police relations and racism, Yield space and time to anti-racism work, Learn about how structural racism impacts child health, Evaluate policies and practices through an anti-racism lens). STYLE offers a framework through which professionals in pediatric psychology can engage in anti-racist work across contexts from clinical care to academic and advocacy settings. Pediatric psychologists have a responsibility to be on the frontline as interventionists, educators, researchers, organizers, and advocates for racial justice through anti-racism practices. The current paper introduces STYLE in clinical care, community service, training/supervision, and academic and advocacy contexts. Case examples are provided. Professionals in pediatric psychology must first focus on changing their STYLE to promote individual and infrastructural change consistent with anti-racism work.


Asunto(s)
Racismo , Negro o Afroamericano/psicología , Niño , Humanos , Policia/psicología , Psicología Infantil , Violencia
4.
J Pediatr Psychol ; 46(1): 1-11, 2021 01 20.
Artículo en Inglés | MEDLINE | ID: mdl-33236097

RESUMEN

OBJECTIVE: Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. DESIGN AND METHODS: Adolescents and young adults (AYAs; 16-20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. RESULTS: The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p's < .05; d's = 0.76-1.68). CONCLUSIONS: This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.


Asunto(s)
Enfermedades Inflamatorias del Intestino , Telemedicina , Transición a la Atención de Adultos , Adolescente , Humanos , Enfermedades Inflamatorias del Intestino/terapia , Estudios Prospectivos , Sudeste de Estados Unidos , Adulto Joven
5.
J Pediatr Gastroenterol Nutr ; 69(2): 194-199, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-30964817

RESUMEN

OBJECTIVES: Deficits in the preparation of patients with inflammatory bowel disease (IBD) who are transitioning to adult care are known yet studies presenting outcome data of transition interventions in IBD are lacking. We present data evaluating the impact of a transition coordinator on behavioral and clinical transition outcomes. METHODS: A retrospective chart review identified 135 patients who had met with our transition coordinator and completed the Transition Readiness Assessment Questionnaire before, and 1 year after, the intervention. Changes in transition readiness, self-management skill acquisition, and clinical outcomes (eg, number of patients transferred vs "bounced back" to pediatrics, percentage of patients over age 21, changes in disease remission) were examined and compared with patients who received no intervention. RESULTS: Intervention participants demonstrated a significant increase in transition readiness, F(1, 134) = 24.34, P < 0.001, and self-management skill acquisition, F(1, 134) = 5.61, P < 0.05. The percentage of patients in remission significantly increased from pre- to post-intervention, χ(134) = 9.03, P < 0.01. There were no significant changes in the comparison population (Ps > 0.05). Following implementation of our programming, the percentage of patients over age 21 decreased by 33.07%. CONCLUSIONS: A 1-time transition coordinator-led intervention improved adolescent transition readiness and acquisition of self-management skills. The proportion of young adult patients retained in pediatric care was reduced. Benefits of hiring a transition coordinator are discussed.


Asunto(s)
Enfermedades Inflamatorias del Intestino/terapia , Autocuidado , Transición a la Atención de Adultos , Adolescente , Femenino , Humanos , Masculino , Registros Médicos , Estudios Retrospectivos , Medicina Estatal , Encuestas y Cuestionarios , Reino Unido , Adulto Joven
6.
J Pediatr Psychol ; 43(5): 488-502, 2018 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-29190360

RESUMEN

Objective: Transition research in each disease group is developing in its own "silo." A comprehensive review of barriers to transition within and across chronic illness groups is needed to facilitate information sharing and larger-scale efforts to overcome barriers and improve patient care. This study systematically reviews and identifies the barriers to transition from pediatric to adult care across pediatric illness populations. Methods: Medline, CINAHL, PsychINFO, Social Services Abstracts, Web of Science, and the Cochrane library databases were searched. Peer-reviewed English articles presenting original data on barriers to transition to adult care, focused on a specific pediatric chronic illness population, and conducted in the United States were included. Study design, population, and barriers were extracted. Barriers were categorized according to the Socioecological Model of Adolescent/Young Adult Readiness to Transition. Articles were evaluated for study quality. Results: Fifty-seven articles were included. The most common barriers to transition fell within the "Relationships" domain (e.g., difficulties letting go of long-standing relationships with pediatric providers) followed by "Access/Insurance" (e.g., difficulty accessing/finding qualified practitioners, insurance issues), and "Beliefs/Expectations" (e.g., negative beliefs about adult care). Barriers related to "Knowledge" (e.g., limited patient/caregiver knowledge about medication/illness and the transition process) and "Skills/Efficacy" (e.g., lack of self-management skills) were also common. While relationship barriers were commonly reported by all, some barriers varied by transfer status (pre- vs. posttransfer). Conclusions: Each chronic illness group experiences illness-specific challenges but certain barriers transcend chronic illness populations. Suggestions to overcome these barriers are provided.


Asunto(s)
Enfermedad Crónica/terapia , Transición a la Atención de Adultos , Adolescente , Adulto , Humanos , Adulto Joven
7.
J Pediatr Nurs ; 39: 49-54, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29525216

RESUMEN

PURPOSE: This multi-site study examines patient, parent, and pediatric provider perspectives on what is most important for successful transition. DESIGN AND METHODS: Using the Transition Readiness Assessment Questionnaire, 190 participants recruited from two pediatric IBD centers selected the top five skills they considered "most important for successful transition." Rankings were summarized and compared by group. RESULTS: While patients, parents, and clinicians all identified "calling the doctor about unusual changes in health" and "taking medications correctly and independently" as being important, each stakeholder group qualitatively and statistically differed in terms of transition readiness skills emphasized. Patients endorsed "calling the doctor about unusual changes in health" and "being knowledgeable about insurance coverage," as being most important to successful transition while parents emphasized health monitoring and problem solving. Pediatric providers emphasized adherence to treatment and reporting unusual changes in health. There were statistically significant differences in endorsement rates across participants for seven transition readiness skills. Patients agreed with providers 80% of the time and with their parents 40% of the time. Parent-provider agreement was 60%. CONCLUSIONS: Although there was some overlap across groups, areas of emphasis differed by informant. Patients emphasized skills they need to learn, parents emphasized skills they most likely manage for their children, and providers emphasized skills that directly impact their provision of care. PRACTICE IMPLICATIONS: Patient, parent, and provider beliefs all need to be considered when developing a comprehensive transition program. Failure to do so may result in programs that do not meet the needs of youth with IBD.


Asunto(s)
Continuidad de la Atención al Paciente/organización & administración , Enfermedades Inflamatorias del Intestino/terapia , Padres/psicología , Autocuidado/psicología , Transición a la Atención de Adultos/organización & administración , Adolescente , Femenino , Conductas Relacionadas con la Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Enfermedades Inflamatorias del Intestino/psicología , Masculino , Apoyo Social
8.
J Pediatr Gastroenterol Nutr ; 60(6): 749-53, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-25564807

RESUMEN

OBJECTIVES: Health-related quality of life (HRQOL) is an important, but understudied construct in pediatric inflammatory bowel disease. Family level predictors of HRQOL have been understudied as are the mechanisms through which disease activity affects HRQOL. The present study examines the relation between a family level factor (parenting stress) and HRQOL in youth with Crohn disease. Parenting stress is examined as a mechanism through which disease activity affects HRQOL. METHODS: A total of 99 adolescents with Crohn disease and their parents were recruited across 3 sites. Adolescents completed the IMPACT-III (inflammatory bowel disease-specific HRQOL). Parents completed the Pediatric Inventory for Parents, a measure of medically related parenting stress that assesses stress because of the occurrence of medical stressors and stress because of the perceived difficulty of stressors. Disease activity was obtained from medical records. RESULTS: Parenting stress because of the occurrence of medical stressors partially mediated the disease severity-HRQOL relation, reducing the relation between these variables from 49.67% to 31.58% (B= -0.56, P < 0.0001). Bootstrapping analysis confirmed that the indirect effect of disease severity on HRQOL via parenting stress significantly differed from zero. Parenting stress because of the perceived difficulty of medical stressors partially mediated the disease severity-HRQOL relation, reducing the relation from 49.67% to 30.29% (B= -0.55, P < 0.0001). The indirect effect was confirmed via bootstrapping procedures. CONCLUSIONS: As disease severity increased, parenting stress also increased, and adolescent HRQOL decreased. Parenting stress should be considered and assessed for along with medical factors as part of a comprehensive approach to improve HRQOL in adolescents with Crohn disease.


Asunto(s)
Enfermedad de Crohn/fisiopatología , Enfermedad de Crohn/psicología , Relaciones Padres-Hijo , Padres/psicología , Calidad de Vida/psicología , Estrés Psicológico/complicaciones , Adolescente , Femenino , Humanos , Masculino , Factores de Riesgo , Índice de Severidad de la Enfermedad , Estrés Psicológico/psicología , Encuestas y Cuestionarios
9.
J Pediatr Gastroenterol Nutr ; 57(2): 250-7, 2013 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-23648790

RESUMEN

This clinical report aims to review key self-management and adherence issues in pediatric inflammatory bowel disease (IBD) and to provide recommendations for health care providers regarding evidence-based assessment and treatment approaches to promote optimal self-management. Self-management difficulties in the form of nonadherence to treatment regimens are common in pediatric IBD and are influenced by various disease-related, individual, family, and health professional relationship factors. To promote adaptive self-management, health care providers are encouraged to adopt a long-term preventive orientation, which includes routine screening of barriers to self-management and nonadherence in the context of routine clinic appointments. The use of a multimethod approach to assessment that incorporates objective measures (eg, pill counts or bioassays) may be particularly advantageous. Individualized treatment approaches that incorporate evidence-based practices, such as providing written treatment plans and offering opportunities to practice and receive feedback on skills, may help to ameliorate minor self-management concerns; however, more severe or chronic self-management problems may require a referral for behavioral health intervention. Additional research to broaden our understanding of self-management in domains beyond medication adherence and to evaluate the effect of clinic-based interventions is imperative.


Asunto(s)
Enfermedades Inflamatorias del Intestino/terapia , Cumplimiento de la Medicación , Autocuidado , Niño , Humanos , Pediatría
10.
J Pediatr Psychol ; 38(8): 893-901, 2013 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-23804406

RESUMEN

OBJECTIVES: To examine the issue of accurate adherence assessment and illustrate methodologies for correcting parent-reported medication adherence. METHODS: 40 children with inflammatory bowel disease provided medication adherence data using electronic monitoring. Parents provided subjective reports of medication adherence. Receiver operating characteristic analyses were used to examine the detection of non-adherence at several adherence cut-points. 2 methods for empirically deriving a correction factor for subjectively reported adherence were applied. RESULTS: Although parent-report and EM adherence were significantly correlated, parent-reported adherence was significantly higher than EM adherence. A 90% cut-point provided the highest sensitivity and specificity. Both correction factors reliably adjusted parent-reported adherence based on EM adherence. CONCLUSIONS: Application of an empirically derived correction factor for parent-reported adherence using methodologies, such as those illustrated in the current study, could yield more accurate adherence assessment. Obtaining more accurate adherence assessments based on parent-report will have implications for self-management interventions, clinician prescribing behavior, and medication safety.


Asunto(s)
Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Encuestas y Cuestionarios/normas , Adolescente , Niño , Familia/psicología , Femenino , Humanos , Dispositivos Laboratorio en un Chip , Masculino , Psicometría/instrumentación , Reproducibilidad de los Resultados , Sensibilidad y Especificidad
11.
J Clin Psychol Med Settings ; 20(4): 488-96, 2013 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-23793840

RESUMEN

Little is known about how family functioning relates to psychosocial functioning of youth with inflammatory bowel disease (IBD). The study aim was to examine family problem solving and affective involvement as moderators between adolescent disease severity and depressive symptoms. Participants were 122 adolescents with IBD and their parents. Measures included self-reported and parent-reported adolescent depressive symptoms, parent-reported family functioning, and physician-completed measures of disease severity. Disease severity was a significant predictor of adolescent-reported depressive symptoms, but not parent-reported adolescent depressive symptoms. Family affective involvement significantly predicted parent-reported adolescent depressive symptoms, while family problem-solving significantly predicted adolescent self-report of depressive symptoms. Neither affective involvement nor problem-solving served as moderators. Family affective involvement may play an important role in adolescent emotional functioning but may not moderate the effect of disease severity on depressive symptoms. Research should continue to examine effects of family functioning on youth emotional functioning and include a sample with a wider range of disease severity to determine if interventions aimed to enhance family functioning are warranted.


Asunto(s)
Conducta del Adolescente/psicología , Afecto/fisiología , Depresión/psicología , Relaciones Familiares , Enfermedades Inflamatorias del Intestino/psicología , Solución de Problemas/fisiología , Adolescente , Actitud Frente a la Salud , Depresión/complicaciones , Femenino , Humanos , Enfermedades Inflamatorias del Intestino/complicaciones , Masculino , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios
12.
Pediatr Allergy Immunol ; 23(5): 494-9, 2012 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-22435992

RESUMEN

OBJECTIVE: To examine behavioral predictors of treatment adherence in patients with eosinophilic gastrointestinal disorders (EGID). METHODS: Participants were 96 patients 2.5-18 yr of age with eosinophilic esophagitis or eosinophilic gastroenteritis and their caregivers (mother, father). We assessed maternal and paternal report of child/adolescent internalizing symptoms (e.g., anxiety, depression) and externalizing symptoms (e.g., aggression, anger) using the Behavior assessment system for children, 2nd edition (BASC-2). A multi-informant adherence assessment approach and an 80% cut point were used to classify patients as adherent or non-adherent. RESULTS: Sociodemographic predictors did not distinguish between adherent and non-adherent patients. Maternal report of internalizing symptoms significantly correlated with non-adherence (p < 0.001). Post hoc probing revealed a significant contribution of depression, with depressed patients being more likely (OR = 7.27; p < 0.05) to be non-adherent than non-depressed patients. Paternal report of internalizing and externalizing symptoms was not associated with non-adherence. CONCLUSIONS: Maternal report of patient internalizing behavioral symptoms, particularly depression, is significantly associated with non-adherence in patients with EGID. These symptoms are potential risk factors and should be considered when assessing and treating non-adherence. Clinical care of patients with EGID should include routine screening for depression.


Asunto(s)
Cuidadores/estadística & datos numéricos , Depresión/complicaciones , Enteritis/psicología , Enteritis/terapia , Eosinofilia/psicología , Eosinofilia/terapia , Esofagitis Eosinofílica/psicología , Esofagitis Eosinofílica/terapia , Gastritis/psicología , Gastritis/terapia , Cumplimiento de la Medicación/estadística & datos numéricos , Adolescente , Adulto , Niño , Preescolar , Estudios Transversales , Enteritis/complicaciones , Eosinofilia/complicaciones , Esofagitis Eosinofílica/complicaciones , Femenino , Gastritis/complicaciones , Humanos , Masculino , Cumplimiento de la Medicación/psicología , Factores de Riesgo , Estados Unidos , Adulto Joven
13.
J Pediatr Psychol ; 37(8): 882-92, 2012 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-21990584

RESUMEN

OBJECTIVE: Pediatric psychologists are increasingly called upon to treat children from non-Western countries, whose cultures may contrast with a Western medical setting. Research on cultural adaptations of evidence-based treatments (EBTs), particularly for individuals from the Middle East, is sparse. To address this need, we discuss clinical issues encountered when working with patients from the Middle East. METHODS: Synthesis of the literature regarding culturally adapted EBTs and common themes in Middle Eastern culture. Case vignettes illustrate possible EBT adaptations. RESULTS: Integrating cultural values in treatment is an opportunity to join with patients and families to optimize care. Expectations for medical and psychological treatment vary, and collaborations with cultural liaisons are beneficial. CONCLUSIONS: Critical next steps include systematic development, testing, and training in culturally adapting EBTs in pediatric medical settings. Increased dialogue between clinicians, researchers, and cultural liaisons is needed to share knowledge and experiences to enhance patient care.


Asunto(s)
Cultura , Práctica Clínica Basada en la Evidencia , Familia/psicología , Conocimientos, Actitudes y Práctica en Salud , Psicología Infantil , Niño , Comunicación , Femenino , Humanos , Masculino , Salud Mental , Medio Oriente
14.
J Pediatr Psychol ; 37(3): 282-91, 2012 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-22080456

RESUMEN

OBJECTIVE: Knowledge of factors impacting adolescents' ability to adhere to their inflammatory bowel disease (IBD) regimen is limited. The current study examines the collective impact of barriers to adherence and anxiety/depressive symptoms on adolescent adherence to the IBD regimen. METHODS: Adolescents (n = 79) completed measures of barriers to adherence, adherence, and anxiety/depressive symptoms at one of two specialty pediatric IBD clinics. RESULTS: Most adolescents reported barriers to adherence and 1 in 8 reported borderline or clinically elevated levels of anxiety/depressive symptoms. Anxiety/depressive symptoms moderated the relationship between barriers to adherence and adherence. Post hoc probing revealed a significant, additive effect of higher anxiety/depressive symptoms in the barriers-adherence relationship, with adherence significantly lower among adolescents with higher barriers and higher anxiety/depressive symptoms. CONCLUSIONS: In order to optimize adherence in adolescents, interventions should target not only barriers to adherence but also any anxiety/depressive symptoms that may negatively impact efforts to adhere to recommended treatment.


Asunto(s)
Ansiedad/psicología , Depresión/psicología , Enfermedades Inflamatorias del Intestino/psicología , Cumplimiento de la Medicación/psicología , Adolescente , Conducta del Adolescente/psicología , Lista de Verificación , Colitis Ulcerosa/tratamiento farmacológico , Colitis Ulcerosa/psicología , Enfermedad de Crohn/tratamiento farmacológico , Enfermedad de Crohn/psicología , Femenino , Humanos , Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , Masculino , Índice de Severidad de la Enfermedad
15.
Appetite ; 55(2): 332-7, 2010 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-20633586

RESUMEN

There is a critical need to identify risk factors that make parents more likely to restrict their child's food intake. Child weight and ethnicity, parent weight, parent body dissatisfaction, and parent concern of child weight were examined as correlates of parent use of restrictive feeding practices in a diverse sample of 191 youth (ages 7-17). Participants attending a pediatric outpatient visit completed the Child Feeding Questionnaire (parent feeding practices and beliefs), the Figure Rating Scale (body dissatisfaction) and a demographic form. Parent BMI and child degree of overweight were calculated. Parent use of restrictive feeding practices was positively associated with parent BMI and was moderated by parent body dissatisfaction. Parent concern of child weight mediated the relationship between increasing child degree of overweight and parent use of restrictive feeding practices. There were no differences by child gender or ethnicity in parent use of restrictive feeding practices. These preliminary findings highlight the importance of assessing for underlying parent motivations for utilizing restrictive feeding practices and may help to identify and intervene with families at-risk for engaging in counterproductive weight control strategies. Continued identification of correlates of parent use of restrictive feeding practices is needed across child development and among individuals from diverse backgrounds.


Asunto(s)
Ingestión de Alimentos , Conducta Alimentaria , Obesidad/etnología , Obesidad/prevención & control , Responsabilidad Parental , Adolescente , Adulto , Anciano , Imagen Corporal , Niño , Fenómenos Fisiológicos Nutricionales Infantiles , Etnicidad , Salud de la Familia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Padres , Encuestas y Cuestionarios
16.
J Pain Symptom Manage ; 60(4): 790-800, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32360992

RESUMEN

CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. OBJECTIVES: This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer. METHODS: Twelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. RESULTS: Five themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. CONCLUSION: Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.


Asunto(s)
Aflicción , Neoplasias , Adaptación Psicológica , Niño , Femenino , Pesar , Humanos , Padres
17.
J Dev Behav Pediatr ; 41(1): 9-15, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31449195

RESUMEN

OBJECTIVE: The current study sought to obtain a longitudinal perspective of and quantitatively assess barriers to medication adherence experienced by college students with attention-deficit/hyperactivity disorder (ADHD). Thus, we examined semester-long trends in barriers to adherence in addition to the relationships between barriers and medication adherence and barriers and quality of life. METHODS: Participants were college students diagnosed with ADHD. Throughout a Fall semester, participants completed 4 sets of online questionnaires and attended 4 in-person visits, which included pill counts and written questionnaires. Participants completed measures assessing barriers to adherence and health-related quality of life, and adherence was measured via pill counts. Mean values of barriers, adherence rate, and quality of life were used for all analyses. RESULTS: Of the 45 students surveyed, mean adherence rate was 56.70%, and 84.45% of participants reported at least 1 barrier. Across the semester, participants reported experiencing an average of 3.07 barriers, and a consistent barrier reported was not realizing when pills run out. Although reported barriers were unrelated to adherence, the results showed that barriers were associated with lowered quality of life, specifically lower overall quality of life in addition to lower emotional functioning, psychosocial health, school functioning, and physical functioning. CONCLUSION: Barriers to adherence appear to be common in college students with ADHD, and certain barriers are consistent with the planning difficulties observed in individuals with ADHD. Because students experiencing more barriers had lower quality of life, interventions are needed to improve students' overall illness management experience.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Calidad de Vida , Estudiantes/estadística & datos numéricos , Adolescente , Adulto , Femenino , Humanos , Estudios Longitudinales , Masculino , Universidades , Adulto Joven
18.
J Pediatr Psychol ; 34(7): 769-73, 2009 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-19060300

RESUMEN

OBJECTIVE: To examine the relationship between peer victimization, prosocial support, and treatment adherence in children and adolescents with Inflammatory Bowel Disease (IBD). METHOD: Thirty-eight children diagnosed with IBD, between the ages of 7-19 years, and their parents were recruited from an outpatient Gastroenterology Clinic. Each child completed the Social Experience Questionnaire. The child, parent, and treating physician completed a one-item measure of child medication adherence. RESULTS: Child reported positive social interactions moderated the relationship between child reported peer victimization and self-reported medication adherence (t = -2.09; p = .045). These relationships held when parent report of child adherence was substituted for child reported adherence in this model (t = -2.37; p = .024). CONCLUSIONS: The findings from this pilot study suggest that prosocial support may buffer children with IBD from experiencing the more negative effects of peer victimization on treatment adherence and highlight the importance of social interactions in youth with IBD. Implications for treatment are discussed.


Asunto(s)
Víctimas de Crimen/psicología , Enfermedades Inflamatorias del Intestino/psicología , Enfermedades Inflamatorias del Intestino/terapia , Cooperación del Paciente/psicología , Grupo Paritario , Apoyo Social , Adolescente , Niño , Víctimas de Crimen/estadística & datos numéricos , Femenino , Humanos , Masculino , Cooperación del Paciente/estadística & datos numéricos , Proyectos Piloto , Encuestas y Cuestionarios , Adulto Joven
19.
J Dev Behav Pediatr ; 40(1): 54-59, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30001262

RESUMEN

OBJECTIVE: To examine the frequency of medication nonadherence using both objective and subjective data and to compare the differences between these measures in adolescents and young adults (AYAs) with attention-deficit hyperactivity disorder (ADHD). METHOD: Fifty-four participants enrolled. Frequency (mean percent of prescribed doses not taken) of nonadherence was measured using subjective (visual analog scale) and objective (pill count and electronic monitoring) methods. Differences between measures were compared using t tests and analysis of variances. RESULTS: Objective measures showed that participants missed 40% to 43% of their prescribed doses. Contrastingly, subjective measures indicated that participants missed 25% of their prescribed doses. Frequency of nonadherence was significantly higher when relying on objective measures rather than on subjective measures (t[46] = -4.51, p < 0.01 for pill counts, and t[47] = -4.81, p < 0.01 for electronic monitoring). CONCLUSION: Nonadherence is high in AYAs with ADHD. These individuals tend to overestimate their adherence when self-reporting. Physicians should exercise caution when prescribing based on patient report of adherence and use objective measures when possible.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Autoinforme/estadística & datos numéricos , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto Joven
20.
J Dev Behav Pediatr ; 29(1): 26-33, 2008 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-18300722

RESUMEN

OBJECTIVE: With the prevalence of childhood overweight reaching epidemic proportions, there is an increased need to identify factors which may aid in the development of successful weight intervention programs. Given that lower levels of physical activity are inversely correlated with weight status in children, research has focused on identifying and addressing reported barriers to physically activity. A relationship exists between the number of reported barriers and weight status such that children who are overweight report more barriers to being physically active. However, important demographic and psychosocial correlates of barriers have not been examined. METHODS: This study investigates the relationship among parent distress, peer victimization, childhood depression, barriers to physical activity, and physical activity among a sample of 95 clinically overweight children and adolescents. Higher levels of parent distress, peer victimization, and childhood depression are predictive of a variety of barriers to physical activity, with peer victimization emerging as the strongest predictor of barriers. Barriers to physical activity mediate the relationships between peer victimization, parent distress, child depression and physical activity. RESULTS: These findings have significant implications for the development/design of weight intervention programs. Interventions targeting increases in physical activity should not only focus on the barriers children report, but should also include a psycho-emotional component to address factors such as parent distress, peer victimization and child mood that may contribute to barrier formation/maintenance. CONCLUSION: Future interventions may benefit from the identification of additional factors that impact barrier formation and physical activity levels among children.


Asunto(s)
Actitud , Víctimas de Crimen/psicología , Depresión/epidemiología , Depresión/psicología , Actividad Motora , Obesidad/psicología , Sobrepeso , Padres/psicología , Grupo Paritario , Adolescente , Antropometría , Niño , Depresión/diagnóstico , Femenino , Humanos , Masculino , Obesidad/dietoterapia , Obesidad/epidemiología , Psicología , Encuestas y Cuestionarios
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