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1.
Pediatr Blood Cancer ; : e31186, 2024 Jul 12.
Artículo en Inglés | MEDLINE | ID: mdl-38997806

RESUMEN

BACKGROUND: Improved survival rates broadened the pediatric oncology focus to include health-related quality of life (HRQoL). This cross-sectional study aimed to examine HRQoL by treatment phase and disease risk level in pediatric patients with B-cell acute lymphoblastic leukemia (B-ALL), including those in early survivorship. PROCEDURE: A subset of data from a larger prospective cohort study was analyzed. Data were collected from 73 patients (73 parent reports and 28 self-reports). Parent proxy and self-report PROMIS measures assessed HRQoL across treatment phases (early intensive, maintenance, and off treatment) and disease risk groups (standard vs high). Analyses assessed the relationship between parent proxy and patient self-reports and the differences in HRQoL among treatment phases and risk groups. RESULTS: Parent proxy reports generally indicated worse fatigue, pain interference, and mobility compared with patient self-reports. Self-reports in the early intensive treatment group suggested worse depressive symptoms, fatigue, mobility, and upper extremity function compared with those in later phases. Parent proxy reports showed worse fatigue and depressive symptoms in early intensive treatment group relative to those in later phases. Patient self-reports in the maintenance group demonstrated the best peer relationships scores. Parent proxy reports in the high-risk group reported significantly higher depressive symptoms and fatigue compared with the standard-risk group. CONCLUSIONS: Differences in HRQoL suggest targets for further assessment and intervention. The early treatment and immediate post-survivorship periods may represent particularly critical time points. Longitudinal studies with larger and diverse samples should further explore HRQoL trajectories in this population.

2.
J Intensive Care Med ; 39(2): 159-169, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37605433

RESUMEN

INTRODUCTION: Parents of children in the pediatric intensive care unit (PICU) experience substantial stress; a parent's perception of their child's illness severity, more than objective measures, predicts psychological outcomes. No tools exist to assess parents' real-time experiences. This pilot study evaluated the feasibility and acceptability of a text-based tool to measure parental experience. METHODS: Inclusion criteria included PICU stay >48 h, physician approval, smartphone access, and English-speaking caregiver. Eligible parents received a text-based baseline survey and surveys every other day while hospitalized regarding their mood/experiences and optional open-ended questions regarding stressors. They received post-discharge follow-up surveys at 1 week and 1, 3, and 6 months. Follow-up surveys assessed mood and symptoms of depression, anxiety, and post-traumatic stress. Interviews and surveys about the interface were conducted 1 week and 3 months following discharge. Feasibility was assessed by descriptive statistics (eg, response rates), and acceptability was assessed by descriptive statistics (survey results) and thematic analyses of interviews. RESULTS: Of 20 enrolled participants, the first 5 were excluded due to technical issues. Of the 15 included, results demonstrated feasibility and acceptability. Most participants (86%) completed all surveys during the PICU stay and continued to complete surveys at a high rate: 79%-94% 3 months post-discharge. All participants agreed that the system was easy to use and were satisfied with the system at discharge, and 91% remained satisfied 3 months post-discharge. Additionally, 76% reported comfort, and 69% reported benefit. From the interviews, participants lauded the system's convenience and applicability of content. Some proposed changes to improve ergonomics. Many suggested this interface could help teams better support families. CONCLUSIONS: A text-based interface for measuring experience in the PICU is feasible and acceptable to parents. Further research can explore how this could identify parents most at risk of adverse psychological sequelae and lead to earlier supportive interventions.


Asunto(s)
Cuidados Posteriores , Envío de Mensajes de Texto , Niño , Humanos , Proyectos Piloto , Estudios de Factibilidad , Alta del Paciente , Padres/psicología , Unidades de Cuidado Intensivo Pediátrico
3.
Clin Pract Pediatr Psychol ; 11(3): 262-273, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37753528

RESUMEN

Objective: To map the range of multidisciplinary palliative care interventions that are available to adolescents and young adults (AYAs) with serious illness. Methods: Scoping review methodology as outlined by Arksey and O'Malley. Results: Twenty-two articles describing nine specific AYA-focused, multidisciplinary palliative care interventions were included in this review. Interventions focused on supporting advance care planning (ACP), facilitating treatment decision making, managing pain, and promoting resilience, psychosocial well-being, and quality of life. Interventions were delivered face-to-face and via different eHealth platforms and were targeted to AYAs with cancer, HIV/AIDS, and cystic fibrosis in both inpatient and outpatient settings. Conclusions: Few evidence-based multidisciplinary palliative care interventions have documented benefit for AYAs with serious illness. The limited work that has been done demonstrates that AYAs are open to engaging in palliative care interventions and suggests that individual members of the multidisciplinary team can implement these different interventions to support enhanced patient outcomes.

4.
Curr Oncol ; 30(9): 8111-8116, 2023 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-37754503

RESUMEN

The COVID-19 pandemic paved the way for the widespread use of virtual care for childhood cancer survivors (CCSs). CCSs were virtual recipients of diverse care, including long-term follow-up (LTFU), primary care, mental health care, and several others. Virtual care comes with well-documented benefits and challenges. These are further magnified for CCSs living in rural or non-metropolitan areas. Here, we describe the virtual care of CCSs from two Upper Midwest cities with well-established childhood cancer survivor programs within large comprehensive cancer centers in the United States. CCSs from non-metropolitan areas, especially CCSs with two or more late effects, used virtual care more often during the COVID-19 pandemic compared to CCSs from metropolitan areas. A review of the related literature is also included and the identified challenges in providing virtual care, such as privacy concerns, technology-connectivity constraints, and medical license restrictions. Despite these limitations, the care of CCSs has evolved to leverage virtual care and its ability to increase access for patients and promote continuity of care for CCSs living in rural areas.


Asunto(s)
COVID-19 , Supervivientes de Cáncer , Neoplasias , Niño , Humanos , Neoplasias/terapia , Pandemias , Progresión de la Enfermedad
5.
Pediatr Blood Cancer ; 70(5): e30277, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36880713

RESUMEN

BACKGROUND: Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. PROCEDURE: Bridge to Next Steps is a two-visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1-23 years) and 46 caregivers participated. Participants completed pre- and post-intervention measures: Distress Thermometer and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8 years), and perceived preparedness survey (ages ≥14 years). AYA survivors and caregivers completed a post-intervention acceptability survey. RESULTS: Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers' distress and anxiety scores decreased from pre to post intervention (p < .01). Survivors' scores remained the same, which were low at baseline. Survivors and caregivers felt more prepared for survivorship from pre to post intervention (p = .02, <.01, respectively). CONCLUSIONS: Bridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre to post Bridge, whereas survivors remained at a low level for both. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.


Asunto(s)
Neoplasias , Supervivencia , Humanos , Adolescente , Adulto Joven , Niño , Lactante , Preescolar , Adulto , Cuidadores , Proyectos Piloto , Neoplasias/terapia , Neoplasias/psicología , Sobrevivientes
6.
Children (Basel) ; 10(2)2023 Feb 15.
Artículo en Inglés | MEDLINE | ID: mdl-36832511

RESUMEN

INTRODUCTION: Providing quality healthcare for children includes assessing and responding to needs of their family caregivers. Three salient domains to consider are caregivers' early adverse childhood experiences (ACEs), their current levels of distress, and their resilience in coping with both prior and current stressors. OBJECTIVE: Determine acceptability of assessing caregiver ACEs, current distress, and resilience in pediatric subspecialty care settings. METHODS: Caregivers of patients in two pediatric specialty care clinics completed questionnaires about their ACEs, recent emotional distress, and resilience. Importantly, caregivers also rated the acceptability of being asked these questions. Participants included 100 caregivers of youth ages 3-17 across Sickle Cell Disease and Pain clinic settings. The majority of participants were mothers (91.0%) who identified as non-Hispanic (86.0%). Caregiver race was primarily African American/Black (53.0%) and White (41.0%). The Area Deprivation Index (ADI) was used to assess socioeconomic disadvantage. RESULTS: High levels of caregiver acceptability or neutrality with assessing ACEs and distress, as well as high ACEs, distress, and resilience. Associations were found between caregiver ratings of acceptability with caregiver resilience and socioeconomic disadvantage. Caregivers reported openness to being asked about their experiences during childhood and recent emotional distress, although ratings of acceptability varied according to other contextual variables, such as level of socioeconomic disadvantage and caregiver resilience. In general, caregivers perceived themselves to be resilient in the face of adversity. CONCLUSIONS: Assessing caregiver ACEs and distress in a trauma-informed way may provide opportunities for better understanding the needs of caregivers and families in order to support them more effectively in the pediatric setting.

7.
J Pediatr Hematol Oncol Nurs ; 39(1): 6-14, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35722870

RESUMEN

Background: Youth undergoing cancer treatment and hematopoietic stem cell transplant (HSCT) spend significant time in the hospital, which is disruptive to their physical, social, and emotional development. Therapeutic recreation (TR) can help individuals with an illness maintain or improve their health, quality of life, and physical functioning. TR is an understudied intervention, particularly with youth in the hospital setting. Methods: Forty-nine children (median age = 12 years, interquartile range [IQR] 11-15 years) hospitalized for cancer treatment or HSCT were assigned to participate in either the historical control or TR intervention. Participants wore a Fitbit charge HR for three days to measure movement. At the end of the study participation, they completed self-report measures of mood, social connectedness, and health-related quality of life. Results: Compared with historical controls, the TR intervention group had improved positive affect and decreased mood disturbance (p = 0.03); had better sleep quality (p = 0.003); and was more satisfied with the leisure activities offered in the hospital (p = 0.01). There were no differences in the number of steps taken per day, somatic distress, cooperation with cares, or interaction with medical personnel or caregivers. Both groups reported poor availability and support of peer companions. Discussion: TR is one avenue to increase leisure activities and positively impact mood. More thought needs to be given to how TR programs can be leveraged to increase physical activity and social connectedness.


Asunto(s)
Calidad de Vida , Terapia Recreativa , Adolescente , Niño , Hospitalización , Humanos , Actividades Recreativas , Calidad de Vida/psicología , Recreación
8.
J Med Internet Res ; 24(4): e30260, 2022 04 18.
Artículo en Inglés | MEDLINE | ID: mdl-35436209

RESUMEN

BACKGROUND: Children with acute and chronic illness undergo frequent, painful, and distressing procedures. OBJECTIVE: This randomized controlled trial was used to evaluate the effectiveness of guided imagery (GI) versus virtual reality (VR) on the procedural pain and state anxiety of children and young adults undergoing unsedated procedures. We explored the role of trait anxiety and pain catastrophizing in intervention response. METHODS: Children and young adults were recruited from the hematology, oncology, and blood and marrow transplant clinics at a children's hospital. Each study participant completed the GI and VR intervention during separate but consecutive unsedated procedures. Self-report measures of pain and anxiety were completed before and after the procedures. RESULTS: A total of 50 participants (median age 13 years) completed both interventions. GI and VR performed similarly in the management of procedural pain. Those with high pain catastrophizing reported experiencing less nervousness about pain during procedures that used VR than those using GI. State anxiety declined pre- to postprocedure in both interventions; however, the decrease reached the level of significance during the VR intervention only. Those with high trait anxiety had less pain during GI. CONCLUSIONS: In our sample, VR worked as well as GI to manage the pain and distress associated with common procedures experienced by children with acute or chronic illnesses. Children who are primed for pain based on beliefs about pain or because of their history of chronic pain had a better response to VR. GI was a better intervention for those with high trait anxiety. TRIAL REGISTRATION: ClinicalTrials.gov NCT04892160; https://clinicaltrials.gov/ct2/show/NCT04892160.


Asunto(s)
Dolor Crónico , Dolor Asociado a Procedimientos Médicos , Realidad Virtual , Adolescente , Ansiedad/terapia , Niño , Humanos , Imágenes en Psicoterapia , Manejo del Dolor/métodos , Adulto Joven
9.
J Child Health Care ; 26(3): 383-393, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-33913779

RESUMEN

This study sought to better understand specific factors contributing to fatigue in survivors of pediatric cancer and hematopoietic stem cell transplant (HSCT). As part of a larger study evaluating long-term psychosocial functioning of pediatric cancer survivors, N = 87 participants completed measures assessing fatigue and emotional and behavioral functioning. Chart abstraction was used to catalog diagnosis, treatments received, treatment intensity, and late effects. Results suggest clinically significant fatigue in n = 4 (4.6%) of survivors participating in this study. Fatigue was greater for participants with more recent diagnoses and who were more recently off treatment and was positively associated with parent and self-report of internalizing (emotional) and externalizing (behavioral) symptoms. Participants with more severe late effects suffered greater fatigue; however, fatigue was not associated with treatment intensity or therapy type. Fatigue is an important variable to consider in evaluating the social, emotional, behavioral, and physical well-being of cancer and HSCT survivors. Interventions are needed to address fatigue directly, while also addressing both contributing factors to fatigue and potential negative outcomes that result from fatigue in survivorship.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Neoplasias , Niño , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Trasplante de Células Madre Hematopoyéticas/métodos , Trasplante de Células Madre Hematopoyéticas/psicología , Humanos , Neoplasias/complicaciones , Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida/psicología , Sobrevivientes/psicología
10.
Hosp Pediatr ; 11(10): e226-e234, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-34503970

RESUMEN

OBJECTIVE: The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed health care delivery and impacted health care providers. However, little is known about the impact of the pandemic in PICUs. In this qualitative study, we aimed to assess pediatric critical care providers' perspectives on the impact of the COVID-19 pandemic on the experiences of patients and families in the PICU and on their personal and professional lives. METHODS: Nineteen pediatric critical care and complex care attending physicians and nurse practitioners from a PICU in a tertiary, freestanding children's hospital in the Midwest completed a semistructured, qualitative interview. Transcripts were analyzed by using thematic analysis. RESULTS: For both PICU providers and patients and families, participants described a negative overall impact of the pandemic, especially relating to increased stress and fear of contracting the disease. Disease precautions such as visitor restrictions and restricting movement were reported to be particularly stressful for families because they limited coping strategies (eg, in-person social support). Providers described changes to the work environment, patient care, and their personal lives. CONCLUSIONS: Results elucidate the perceived impacts of COVID-19 and associated hospital precautions on the lives of PICU providers, patients, and families. Providers, patients, and families likely require additional psychosocial support during the pandemic. When possible, policies regarding disease management should maximize safety while minimizing additional stress. Further research is needed to explore patient and family perspectives regarding the impact of COVID-19 and to evaluate the continued impact of COVID-19 over time.


Asunto(s)
COVID-19 , Pandemias , Adaptación Psicológica , Niño , Humanos , Unidades de Cuidado Intensivo Pediátrico , SARS-CoV-2
11.
Pediatr Blood Cancer ; 66(3): e27530, 2019 03.
Artículo en Inglés | MEDLINE | ID: mdl-30426663

RESUMEN

BACKGROUND: Psychosocial follow-up in survivorship is a standard of care in pediatric oncology; however, little is known about patients' psychosocial functioning during the transition off active treatment, a unique time in the cancer journey. This study examined the social adjustment of adolescent cancer patients during this transition period, which has been understudied to date. PROCEDURE: Participants were 21 patients (ages 12-18 years; age M = 14.71 years; 62% female, 81% White) with various cancer diagnoses. Patients and their parents completed the Social Competence subscale of the Youth Self-Report (YSR) and Child Behavior Checklist (CBCL), respectively, PedsQL Social Functioning subscale, and a semistructured interview 1-2 months prior to ending treatment (time 1) and 3-7 months after ending treatment (time 2). RESULTS: YSR and CBCL social competence scores were within the normal range at both time points. PedsQL social functioning scores were more consistent with norms for pediatric cancer samples at time 1 and norms for healthy children at time 2, with self-reported scores significantly improving from time 1 to time 2. A subset of patients had elevated social concerns at time 1, a number that decreased by time 2. Interviews revealed both positive and negative themes related to peer relationships and support, quantity of friends, and socialization. CONCLUSIONS: Most adolescent cancer patients are socially well adjusted as they transition off treatment, although a subset have elevated concerns. Interviews provide insight into complex social experiences not captured on questionnaires. Patients may benefit from screening and support during this unique time.


Asunto(s)
Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida , Autoinforme , Ajuste Social , Sobrevivientes/psicología , Adolescente , Niño , Terapia Combinada , Femenino , Estudios de Seguimiento , Humanos , Masculino , Pronóstico , Estudios Prospectivos , Encuestas y Cuestionarios
12.
J Psychosoc Oncol ; 37(3): 367-382, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30372379

RESUMEN

PURPOSE: To (a) describe the decision-making experience and psychosocial outcome of sibling hematopoietic stem cell (HSC) donors, and (b) to determine the feasibility of completing a prospective and longitudinal assessment of HSC sibling donors at a single institution. DESIGN: A mixed-methods approach was utilized. SAMPLE AND METHODS: 12 potential siblings HSC donors aged 10-21 years completed various psychological measures and participated in semi-structured interviews at three time points in the donation experience: pre-donation, within 1 week after the harvest procedure, and six months post-donation. Caregivers also completed parent-proxy measures. FINDINGS: Qualitative analysis indicated donors want to make their own decision about donation but may not be given the option or may feel that there is no choice given their limited awareness of alternative options. Donors felt well prepared for the donation procedure but demonstrated a poor understanding of possible recipient outcomes. A minority of donors endorsed emotional distress prior to and after donation; however, this was not linked to recipient health. Forty percent of donors felt that they had inadequate support following their donation. Small sample size restricted quantitative data analysis. CONCLUSIONS AND IMPLICATIONS: Utilizing a donor advocate offers opportunity to work with donors to encourage decision-making tied to ideals rather obligation, increase education about possible recipient outcomes, and offer support at key times, such as when a recipient dies. Future research should include prospective multi-site studies.


Asunto(s)
Toma de Decisiones , Conocimientos, Actitudes y Práctica en Salud , Células Madre Hematopoyéticas , Hermanos/psicología , Donantes de Tejidos/psicología , Adolescente , Niño , Estudios de Factibilidad , Femenino , Humanos , Estudios Longitudinales , Masculino , Estudios Prospectivos , Distrés Psicológico , Investigación Cualitativa , Apoyo Social , Donantes de Tejidos/estadística & datos numéricos , Adulto Joven
13.
Autism Res ; 11(12): 1679-1689, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-30475451

RESUMEN

Social difficulties inherent to autism spectrum disorder are often linked with co-occurring symptoms of anxiety and attention deficit hyperactivity disorder (ADHD). The present study sought to examine the relation between such co-occurring symptoms and social challenges. Parents of adolescents with autism (N = 113) reported upon social challenges via the social responsiveness scale (SRS) and anxiety and ADHD symptomatology via the Child Behavior Checklist. Results revealed differences in SRS scores across co-occurring symptom subgroups (Anxiety, ADHD, Both, Neither)-namely, adolescents with autism and anxiety as well as those with autism, anxiety, and ADHD showed greater scores on the SRS than the other groups. Implications for research and clinical practice are discussed and recommendations are offered. Autism Research 2018, 11: 1679-1689. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Anxiety and attention deficit hyperactivity disorder (ADHD) symptoms are related to greater social challenges for adolescents with autism spectrum disorder. The present study found that autism with anxiety and autism with anxiety and ADHD, was related to greater social difficulties than autism alone. Findings provide further support for the intertwined nature of anxiety and ADHD symptoms in autism. What this may mean for research and clinical practice is considered and recommendations are suggested.


Asunto(s)
Trastornos de Ansiedad/complicaciones , Trastorno por Déficit de Atención con Hiperactividad/complicaciones , Trastorno por Déficit de Atención con Hiperactividad/fisiopatología , Trastorno del Espectro Autista/complicaciones , Conducta Social , Adolescente , Trastornos de Ansiedad/fisiopatología , Trastornos de Ansiedad/psicología , Trastorno por Déficit de Atención con Hiperactividad/psicología , Trastorno del Espectro Autista/fisiopatología , Trastorno del Espectro Autista/psicología , Niño , Femenino , Humanos , Masculino , Padres
14.
Autism Res ; 11(12): 1653-1666, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-30475457

RESUMEN

The Modifier Model of autism spectrum disorder (ASD) suggests that phenotypic variability within ASD is rooted in modifier processes, such as the behavioral inhibition system (BIS) and behavioral activation system (BAS). Among a sample of 53 adolescents with ASD, this study examined associations between (a) self-reported BIS/BAS and frontal and parietal alpha electroencephalogram asymmetry and whether these indices related to (b) ASD severity (via the Autism Quotient), and/or (c) co-occurring anxiety and attention-deficit hyperactivity disorder (via Youth Self Report and Child Behavior Checklist). Findings showed that alpha asymmetry was associated with self-reported BAS scores, such that greater BAS was related to greater right-frontal hemisphere activation and relatively greater left-parietal hemisphere activation. Additionally, associations emerged between ASD severity and self-reported BAS and alpha asymmetry, and between anxiety symptoms and self-reported BIS and alpha asymmetry. Furthermore, mediation analyses revealed that BAS mediated the association between asymmetry and autism severity. Therefore, alpha asymmetry and BIS/BAS activity may provide insight into how ASD presents in adolescence as well as who might be at greater risk for developing co-occurring psychopathologies. This study highlights the importance of considering motivational systems to elucidate individual differences among youth with ASD and working toward the longer term goal of better understanding differential responses to treatment. Autism Research 2018, 11: 1653-1666. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Differences in the likelihood to avoid (behavioral inhibition system; BIS) or approach (behavioral activation system; BAS) situations are thought to relate to patterns of brain activity (via electroencephalogram asymmetry asymmetry). This study revealed that these tendencies may influence the presentation of autism spectrum disorder (ASD) and symptoms of anxiety in adolescents with ASD.


Asunto(s)
Trastorno del Espectro Autista/fisiopatología , Trastorno del Espectro Autista/psicología , Electroencefalografía/métodos , Inhibición Psicológica , Autoinforme , Adolescente , Trastornos de Ansiedad/complicaciones , Trastornos de Ansiedad/fisiopatología , Trastornos de Ansiedad/psicología , Trastorno por Déficit de Atención con Hiperactividad/complicaciones , Trastorno por Déficit de Atención con Hiperactividad/fisiopatología , Trastorno por Déficit de Atención con Hiperactividad/psicología , Trastorno del Espectro Autista/complicaciones , Niño , Femenino , Humanos , Masculino , Motivación , Índice de Severidad de la Enfermedad
15.
Pediatr Blood Cancer ; 65(8): e27109, 2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-29697192

RESUMEN

BACKGROUND/OBJECTIVES: The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment. DESIGN/METHODS: Forty-nine caregiver-child dyads completed semi-structured interviews and surveys 1-2 months before ending treatment, and again 3-7 months after treatment concluded. RESULTS: Patients and caregivers reported a moderate level of understanding of follow-up care needs, late effects, and perceived preparation. Altogether, child, adolescent, and young adult cancer patients and parents identified similar priorities for information needed during the transition off active treatment. The most essential pieces of information desired by patients and families across time points included reviews of late effects, schedules for follow-up care, health and physical restrictions, communication with the patient's primary care provider, and provision of a treatment summary. At Time 2, patients and families reported a greater retrospective desire for emotional health resources. Most patients and caregivers wanted information from a variety of sources, but the desired timing to receive this information varied and was dependent on disease group. CONCLUSIONS: There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Neoplasias/terapia , Adolescente , Cuidadores/psicología , Niño , Femenino , Humanos , Estudios Longitudinales , Masculino , Educación del Paciente como Asunto , Estudios Prospectivos
16.
J Autism Dev Disord ; 48(4): 1169-1180, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-29275509

RESUMEN

Raising a child with autism spectrum disorder (ASD) poses unique challenges that may impact parents' mental health and parenting experiences. The current study analyzed self-report data from 77 parents of youth with ASD. A serial multiple mediation model revealed that parenting stress (SIPA) and parental mental health (BAI and BDI-II) appears to be impacted by challenging adolescent behaviors (SSIS-PBs) and, in turn, affect parental involvement (PRQ), controlling for social skills (SSIS-SSs). Further, the study explored the malleability of parents' mental health over the course of a social skills intervention, and provides modest evidence that parent depressive symptoms decline across intervention. This study illustrates the importance of considering the entire family system in research on youth with ASD.


Asunto(s)
Conducta del Adolescente , Trastorno del Espectro Autista/psicología , Salud Mental , Padres/psicología , Problema de Conducta , Estrés Psicológico/psicología , Adolescente , Adulto , Trastorno del Espectro Autista/epidemiología , Femenino , Humanos , Masculino , Modelos Psicológicos , Responsabilidad Parental , Habilidades Sociales , Estrés Psicológico/epidemiología
17.
J Autism Dev Disord ; 48(3): 834-843, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29164445

RESUMEN

Depression is a common concern among people with autism spectrum disorder (ASD) and is often associated with social skills and relationship challenges. The present data, from a randomized controlled trial, examined the effect of PEERS® on self-reported depressive symptoms via the Children's Depression Inventory (CDI) among 49 adolescents with ASD. Findings revealed that many CDI subscale scores declined (p's < 0.05) and were related to direct social contact on the Quality of Socialization Questionnaire at posttest (p's < 0.05). Exploratory analyses uncovered that suicidality was less evident following PEERS®. Findings support the notion that social functioning and depression may be intimately intertwined in ASD; therefore, bolstering social skills in ASD may positively influence other domains of functioning, including mental health.


Asunto(s)
Conducta del Adolescente/psicología , Trastorno del Espectro Autista/psicología , Depresión/psicología , Grupo Paritario , Habilidades Sociales , Adolescente , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/terapia , Niño , Depresión/diagnóstico , Depresión/terapia , Femenino , Humanos , Relaciones Interpersonales , Masculino , Autoinforme/normas , Conducta Social
18.
J Autism Dev Disord ; 47(7): 2282-2289, 2017 07.
Artículo en Inglés | MEDLINE | ID: mdl-28391452

RESUMEN

A paucity of research has been conducted to examine the effect of social skills intervention on females with ASD. Females with ASD may have more difficulty developing meaningful friendships than males, as the social climate can be more complex (Archer, Coyne, Personality and Social Psychology Review 9(3):212-230, 2005). This study examined whether treatment response among females differed from males. One hundred and seventy-seven adolescents and young adults with ASD (N = 177) participated in this study. When analyzed by group, no significant differences by gender emerged: PEERS® knowledge (TASSK/TYASSK, p = .494), direct interactions (QSQ, p = .762), or social responsiveness (SRS, p = .689; SSIS-RS, p = .482). Thus, females and males with ASD respond similarly to the PEERS® intervention.


Asunto(s)
Trastorno del Espectro Autista/terapia , Psicoterapia/métodos , Habilidades Sociales , Adolescente , Trastorno del Espectro Autista/psicología , Trastorno del Espectro Autista/rehabilitación , Femenino , Humanos , Masculino , Grupo Paritario , Factores Sexuales , Adulto Joven
19.
J Autism Dev Disord ; 46(12): 3739-3754, 2016 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-27628940

RESUMEN

Young adults with ASD experience difficulties with social skills, empathy, loneliness, and social anxiety. One intervention, PEERS® for Young Adults, shows promise in addressing these challenges. The present study replicated and extended the original study by recruiting a larger sample (N = 56), employing a gold standard ASD assessment tool, and examining changes in social anxiety utilizing a randomized controlled trial design. Results indicated improvements in social responsiveness (SSIS-RS SS, p = .006 and CPB, p = .005; SRS, p = .004), PEERS® knowledge (TYASSK, p = .001), empathy (EQ, p = .044), direct interactions (QSQ-YA, p = .059), and social anxiety (LSAS-SR, p = .019). Findings demonstrate further empirical support for the intervention for individuals with ASD.


Asunto(s)
Trastorno del Espectro Autista/terapia , Terapia Conductista/métodos , Fobia Social/terapia , Habilidades Sociales , Trastorno del Espectro Autista/psicología , Empatía , Femenino , Humanos , Soledad , Masculino , Grupo Paritario , Fobia Social/psicología , Resultado del Tratamiento , Adulto Joven
20.
J Autism Dev Disord ; 46(6): 2251-2259, 2016 06.
Artículo en Inglés | MEDLINE | ID: mdl-26886470

RESUMEN

This study aimed to evaluate the effectiveness of a randomized controlled trial of a social skills intervention, the Program for the Education and Enrichment of Relational Skills (PEERS: Laugeson et al. in J Autism Dev Disord 39(4): 596-606, 2009), by coding digitally recorded social interactions between adolescent participants with ASD and a typically developing adolescent confederate. Adolescent participants engaged in a 10-min peer interaction at pre- and post-treatment. Interactions were coded using the Contextual Assessment of Social Skills (Ratto et al. in J Autism Dev Disord 41(9): 1277-1286, 2010). Participants who completed PEERS demonstrated significantly improved vocal expressiveness, as well as a trend toward improved overall quality of rapport, whereas participants in the waitlist group exhibited worse performance on these domains. The degree of this change was related to knowledge gained in PEERS.


Asunto(s)
Trastorno del Espectro Autista/psicología , Trastorno del Espectro Autista/terapia , Grupo Paritario , Habilidades Sociales , Adolescente , Trastorno del Espectro Autista/diagnóstico , Formación de Concepto , Femenino , Amigos/psicología , Humanos , Relaciones Interpersonales , Masculino , Conducta Verbal
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