Journal articleGlob Ment Health (Camb) · 2026
Background: Adolescents and young adults with sickle cell disease (SCD) in Kenya experience psychosocial challenges shaped by developmental transitions and social and health system contexts. Limited research has examined differences across adolescence and ...
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Journal articleJournal of Participatory Research Methods · January 1, 2026
This manuscript will describe a participatory dissemination approach used to translate research findings into actionable strategies for supporting adolescents with Sickle Cell Disease (SCD) and their families in Kenya. Rather than positioning dissemination ...
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Journal articleJ Pediatr Hematol Oncol Nurs · 2022
It is widely accepted that educational interventions benefit children with chronic diseases (disease awareness and autonomy) or those undergoing medical procedures (decreased anxiety and improved satisfaction). Hematopoietic cell transplantation (HCT) is a ...
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Journal articleEpilepsy Behav · March 2021
BACKGROUND: ATP1A2 mutations cause hemiplegic migraine with or without epilepsy or acute reversible encephalopathy. Typical onset is in adulthood or older childhood without subsequent severe long-term developmental impairments. AIM: We aimed to describe th ...
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Journal articlePediatr Neurol · October 2020
BACKGROUND: Alternating hemiplegia of childhood often manifests severe or extreme behavioral problems, the nature of which remains to be fully characterized. METHODS: We analyzed 39 consecutive patients with alternating hemiplegia of childhood for occurren ...
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Journal articleDev Med Child Neurol · July 2020
AIM: To evaluate presence and severity of social impairments in alternating hemiplegia of childhood (AHC) and determine factors that are associated with social impairments. METHOD: This was a retrospective analysis of 34 consecutive patients with AHC (19 f ...
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Journal articleJ Pediatr Psychol · June 1, 2020
OBJECTIVES: To characterize the types and magnitude of psychosocial burden present in caregivers who have a child with sickle cell disease (SCD) in Kenya and to identify predictors of caregiver psychosocial burden, including disease severity and financial ...
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Journal articleClinical Practice in Pediatric Psychology · January 1, 2020
Objective: The current study assessed the feasibility of a computerized cognitive intervention, Cogmed, in a sample of youth with SCD (ages 8–16 years). If deemed feasible, the secondary aim of the study was to evaluate preliminary efficacy. Methods: Youth ...
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Journal articleJ Clin Oncol · June 20, 2019
PURPOSE: Sensorineural hearing loss (SNHL) is associated with intellectual and academic declines in children treated for embryonal brain tumors. This study expands upon existing research by examining core neurocognitive processes that may result in reading ...
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Journal articleTransl Behav Med · May 16, 2019
Couples co-parenting a child with cancer face significant stressors that can adversely affect their couple relationship. How parents respond as a couple may affect the psychological adjustment of each parent and the child, as well as the ability of the fam ...
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Journal articleDev Med Child Neurol · May 2019
AIM: To determine the neuropsychological abnormalities that occur in alternating hemiplegia of childhood (AHC) and report on our experience in managing them. METHOD: Patients underwent evaluations according to our standardized AHC pathway. Data were entere ...
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Journal articleCold Spring Harb Mol Case Stud · October 2018
Recent evidence has implicated EFL1 in a phenotype overlapping Shwachman-Diamond syndrome (SDS), with the functional interplay between EFL1 and the previously known causative gene SBDS accounting for the similarity in clinical features. Relatively little i ...
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Journal articlePediatr Blood Cancer · August 2018
BACKGROUND: Adherence to illness self-management among youth with sickle cell disease (SCD) positively impacts health outcomes and decreases overall healthcare costs. Despite this, children with SCD face several barriers to adherence, with adherence rates ...
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Journal articleNeuro Oncol · November 29, 2017
BACKGROUND: Patients treated for medulloblastoma who experience posterior fossa syndrome (PFS) demonstrate increased risk for neurocognitive impairment at one year post diagnosis. The aim of the study was to examine longitudinal trajectories of neuropsycho ...
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Journal articleChild Neuropsychol · November 2017
Research consistently indicates that children with sickle cell disease (SCD) face multiple risk factors for neurocognitive impairment. Despite this, no empirical research to date has examined the impact of neurocognitive functioning on quality of life for ...
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Journal articleEpilepsia · June 2017
OBJECTIVE: Our aim was to explore the association between plasma cytokines and febrile status epilepticus (FSE) in children, as well as their potential as biomarkers of acute hippocampal injury. METHODS: Analysis was performed on residual samples of childr ...
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Journal articleChildren S Health Care · April 3, 2017
This study assessed neurocognitive and social-cognitive skills in survivors of pediatric brain tumors, and evaluated their combined contribution to social outcomes. Survivors (N = 10) and typically developing children (N = 41), aged 8–16, completed measure ...
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Journal articleEpilepsy Behav · November 2016
OBJECTIVE: The objective of this study was to determine early developmental and cognitive outcomes of children with febrile status epilepticus (FSE) one month and one year after FSE. METHODS: One hundred ninety four children with FSE were evaluated on meas ...
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Journal articleAm J Hum Genet · October 6, 2016
The ASXL genes (ASXL1, ASXL2, and ASXL3) participate in body patterning during embryogenesis and encode proteins involved in epigenetic regulation and assembly of transcription factors to specific genomic loci. Germline de novo truncating variants in ASXL1 ...
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Journal articleJ Pediatr Oncol Nurs · September 2016
OBJECTIVE: Benefit finding has been described as the identification of positive effects resulting from otherwise stressful experiences. In this mixed methods study, we examined the relations between qualitative themes related to benefit finding and quantit ...
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Journal articleEpilepsia · July 2016
OBJECTIVES: To identify risk and risk factors for developing a subsequent febrile seizure (FS) in children with a first febrile status epilepticus (FSE) compared to a first simple febrile seizure (SFS). To identify home use of rescue medications for subseq ...
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Journal articleJ Intellect Disabil Res · March 2016
BACKGROUND: This study examined social functioning and facial expression recognition (FER) in children with neurofibromatosis type 1 (NF1) compared to typically developing peers. Specifically, the current research aimed to identify hypothesised relationshi ...
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Journal articleLancet · February 13, 2016
BACKGROUND: For children with sickle cell anaemia and high transcranial doppler (TCD) flow velocities, regular blood transfusions can effectively prevent primary stroke, but must be continued indefinitely. The efficacy of hydroxycarbamide (hydroxyurea) in ...
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Journal articleAnn Neurol · December 2015
We report 2 patients with drug-resistant epilepsy caused by KCNT1 mutations who were treated with quinidine. Both mutations manifested gain of function in vitro, showing increased current that was reduced by quinidine. One, who had epilepsy of infancy with ...
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Journal articleJ Pediatr Hematol Oncol · November 2015
Children with sickle cell disease (SCD) report fatigue in addition to acute and chronic pain, which can decrease overall health-related quality of life (HRQL). The primary objective of the current study was to investigate the relationship between fatigue a ...
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Journal articleJ Intellect Disabil Res · October 2015
BACKGROUND: Children with chromosome 22q11.2 deletion syndrome (22q11DS) often have deficits in social cognition and social skills that contribute to poor adaptive functioning. These deficits may be of relevance to the later occurrence of serious psychiatr ...
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Journal articleNeurooncol Pract · March 2015
BACKGROUND: Survivors of childhood cancer are at risk for neuropsychological late effects, yet identifying those in need of evaluation and obtaining needed services can be challenging for the medical team. Finding time- and cost-effective screening measure ...
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Journal articleNeuro Oncol · August 2014
BACKGROUND: The aim of this study was to prospectively examine the effects of hearing loss and posterior fossa syndrome (PFS), in addition to age at diagnosis and disease risk status, on change in intellectual and academic outcomes following diagnosis and ...
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Journal articleJ Pediatr Psychol · June 2014
OBJECTIVE: We investigated the 5-year postsurgical developmental trajectory of working memory (WM) in children with medulloblastoma using parent and performance-based measures. METHOD: This study included 167 patients treated for medulloblastoma. Serial as ...
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Journal articlePediatr Blood Cancer · June 2014
OBJECTIVE: In children, CNS-directed cancer therapy is thought to result in decreased cerebral white matter volumes (WMV) and subsequent neurocognitive deficits. This study was designed as a prospective validation of the purported reduction in WMV, associa ...
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Journal articleBrain Sci · November 26, 2013
The cerebral organization of language in epilepsy patients has been studied with invasive procedures such as Wada testing and electrical cortical stimulation mapping and more recently with noninvasive neuroimaging techniques, such as functional MRI. In the ...
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Journal articleAm J Hematol · November 2013
To compare the non-neurological events in children with sickle cell anemia (SCA) and previous stroke enrolled in SWiTCH. The NHLBI-sponsored Phase III multicenter randomized clinical trial stroke with transfusions changing to hydroxyurea (SWiTCH) (Clinical ...
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Journal articleJ Clin Oncol · October 1, 2013
PURPOSE: The current study prospectively examined processing speed (PS), broad attention (BA), and working memory (WM) ability of patients diagnosed with medulloblastoma over a 5-year period. PATIENTS AND METHODS: The study included 126 patients, ages 3 to ...
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Journal articleRes Dev Disabil · September 2013
Children with chromosome 22q11.2 deletion syndrome (22q11DS) are significantly impaired in their academic performance and functionality due to cognitive deficits, especially in attention, memory, and other facets of executive function. Compounding these co ...
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Journal articlePsychooncology · August 2013
OBJECTIVES: Survivors of pediatric brain tumors and acute lymphoblastic leukemia (ALL) are at increased risk for neurocognitive deficits, but few empirically supported treatment options exist. We examined the feasibility and preliminary efficacy of a home- ...
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Journal articleJ Clin Oncol · November 20, 2012
PURPOSE: To examine longitudinal parent-reported social outcomes for children treated for pediatric embryonal brain tumors. PATIENTS AND METHODS: Patients (N=220) were enrolled onto a multisite clinical treatment protocol. Parents completed the Child Behav ...
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Journal articleAm J Med Sci · October 2012
INTRODUCTION: To examine in a randomize controlled feasibility clinical trial the efficacy of a cognitive-behavioral intervention designed to manage pain, enhance disease adjustment and adaptation and improve quality of life among female adolescents with s ...
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Journal articleJ Clin Oncol · September 10, 2012
PURPOSE: P9934 was a prospective trial of systemic chemotherapy, second surgery, and conformal radiation therapy (CRT) limited to the posterior fossa and primary site for children between 8 months and 3 years old with nonmetastatic medulloblastoma. The stu ...
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Journal articlePediatr Blood Cancer · August 2012
Health-related quality of life (HRQL) is defined as the patient's appraisal of how his/her well being and level of functioning, compared to the perceived ideal, are affected by individual health. The study of HRQL in children and adults with sickle cell di ...
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Journal articleJ Neurooncol · November 2011
The current study reports longitudinal coping responses among parents of children diagnosed with an embryonal brain tumor. Patients (n = 219) were enrolled on a treatment protocol for a pediatric embryonal brain tumor. Their parents (n = 251) completed the ...
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Journal articleJournal of Cyber Therapy and Rehabilitation · October 26, 2011
The research presented here focuses on the ease of use of an instrument's interface for a target pediatric population, where participants were asked to interpret virtual character facial expressions. Fortyone children, both pediatric cancer survivors and h ...
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Journal articleJ Pediatr Oncol Nurs · 2011
The objective of the current study was to pilot a computerized cognitive training program, Captain's Log, in a small sample of survivors of childhood cancer. A total of 9 survivors of acute lymphoblastic leukemia and brain tumors with attention and working ...
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Journal articleNeuro Oncol · December 2010
The aim is to prospectively assess early neurocognitive outcome of children who developed cerebellar mutism syndrome (CMS) following surgical resection of a posterior fossa embryonal tumor, compared with carefully matched control patients. Children who wer ...
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Journal articleJ Clin Oncol · October 10, 2010
PURPOSE: Methylphenidate (MPH) ameliorates attention problems experienced by some cancer survivors in the short term, but its long-term efficacy is unproven. PATIENTS AND METHODS: This study investigates the long-term effectiveness of maintenance doses of ...
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Journal articlePsychooncology · September 2010
OBJECTIVE: Survivors of childhood cancer are at an increased risk for reduced quality of life (QOL), yet few studies have explored factors associated with improving health-related QOL (HRQOL) in this population. We thus explored the relationship between ph ...
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Journal articleJ Pediatr Psychol · March 2010
OBJECTIVE: To investigate the methylphenidate (MPH) response rate among childhood survivors of acute lymphoblastic leukemia (ALL) and brain tumors (BTs) and to identify predictors of positive MPH response. METHODS: Cancer survivors (N = 106; BT = 51 and AL ...
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Journal articleJ Pediatr Oncol Nurs · 2010
Children with brain tumors are at risk for a number of cognitive, academic, and social difficulties as a consequence of their illness and its treatment. Of these, the least is known about social functioning, particularly over the course of the illness. Thi ...
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Journal articlePsychooncology · August 2009
OBJECTIVE: To examine the relation between gender, history of cranial radiation therapy (CRT) and facial expression recognition (FER) skill in survivors of pediatric brain tumors. METHODS: Fifty-three survivors (27 females) completed a measure of FER and a ...
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Journal articlePsychooncology · May 2009
OBJECTIVE: The purpose of the study was to compare the psychological adjustment of caregivers of children with brain tumors who are on-treatment with caregivers of children who are off-treatment. METHODS: Data were collected from 90 participants: 47 (52.2% ...
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Journal articlePediatr Blood Cancer · May 2009
BACKGROUND: Hydroxyurea improves laboratory parameters and prevents acute clinical complications of sickle cell anemia (SCA) in children and adults, but its effects on organ function remain incompletely defined. METHODS: To assess the safety and efficacy o ...
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Journal articleChildren S Health Care · January 1, 2009
The purpose of the study was to further examine the utility of the nonverbal learning disability (NLD) model for characterizing deficits in pediatric brain tumor survivors. Data from measures of cognitive, academic, and social functioning were gathered fro ...
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Journal articlePsychooncology · November 2008
OBJECTIVES: The purpose of the study was to assess the relationship between shunted hydrocephalus and intellectual, memory and academic functioning in a group of survivors of pediatric medulloblastoma. METHODS: Data from measures of cognitive, memory, acad ...
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Journal articleChildren S Health Care · April 1, 2008
The objective of this research is to provide further validation of the Parent Experience of Child Illness (PECI) scale. One hundred twenty-five caregivers of patients (age < 1-17 years) diagnosed with cancer returned questionnaire data at Time 1, and 75 ca ...
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Journal articleJ Pediatr Hematol Oncol · February 2008
BACKGROUND: Although significant progress has been made in identifying long-term sequelae for adult survivors of childhood cancer, comparatively little attention has been paid to the functioning of their parents. In a previous study, we observed that a maj ...
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Journal articleJ Pediatr Psychol · 2008
OBJECTIVE: To assess social functioning and facial expression recognition skill in survivors of pediatric brain tumors (BT) as compared to children with juvenile rheumatoid arthritis (JRA). METHODS: The social functioning of 51 survivors of BT and 31 child ...
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Journal articleOncol Nurs Forum · January 2008
PURPOSE/OBJECTIVES: To determine childhood cancer survivors' barriers to increasing exercise and consuming less fat and more fruits and vegetables, whole grains, and calcium-rich foods. DESIGN: Mailed survey. SETTING: Cases from a comprehensive cancer cent ...
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Journal articleNeuropsychiatr Dis Treat · December 2007
Traditionally, neuropsychological deficits due to Sickle Cell Disease (SCD) have been understudied in adults. We have begun to suspect, however, that symptomatic and asymptomatic Cerebrovascular Events (CVE) may account for an alarming number of deficits i ...
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Journal articleJ Pediatr Psychol · October 2007
OBJECTIVE: To investigate the acute efficacy and adverse side effects of methylphenidate (MPH) among survivors of childhood cancer [acute lymphoblastic leukemia (ALL) or brain tumor (BT)] with learning impairments. METHODS: Participants (N = 122) completed ...
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Journal articleJ Pediatr Psychol · August 2007
OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the Brief Sym ...
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Journal articleJ Pediatr Psychol · April 2006
OBJECTIVE: To develop a measure of parent adjustment related to caring for a child with a chronic illness and to evaluate the reliability and validity of the measure with a group of parents of children with brain tumors. METHODS: One-hundred forty-nine par ...
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Journal articleJ Pediatr Psychol · March 2006
OBJECTIVE: To examine the factor structure of the Conners Parent Rating Scale-Revised: Short Form (CPRS-R:S) and the Conners Teacher Rating Scale-Revised: Short Form (CTRS-R:S) in children who are long-term survivors of acute lymphocytic leukemia (ALL) or ...
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Journal articleCancer · February 15, 2006
BACKGROUND: The primary objective of this study was to test the hypothesis that survivors of childhood acute lymphoblastic leukemia (ALL) have deficits in neurocognitive performance, and smaller white-matter volumes are associated with these deficits. METH ...
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Journal articleCancer · May 15, 2005
BACKGROUND: Survivors of childhood cancer are at increased risk for osteoporosis, cardiovascular disease, and second malignancies-conditions for which modifiable risk factors are recognized and lifestyle interventions have shown benefit. Although some data ...
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Journal articleCancer Epidemiol Biomarkers Prev · May 2005
OBJECTIVE: Mailed surveys are widely used to collect epidemiologic and health service data. Given that nonresponse can threaten the validity of surveys, modest incentives are often used to increase response rates. A study was undertaken among childhood can ...
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Journal articleJ Clin Oncol · December 1, 2004
PURPOSE: Children surviving acute lymphoblastic leukemia (ALL) and malignant brain tumors (BTs) have a higher incidence of attention and learning problems in school than do their healthy peers. The present study tests the hypothesis that the psychostimulan ...
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Journal articleJournal of clinical oncology : official journal of the American Society of Clinical Oncology · December 1, 2004
PURPOSE: Children surviving acute lymphoblastic leukemia (ALL) and malignant brain tumors (BTs) have a higher incidence of attention and learning problems in school than do their healthy peers. The present study tests the hypothesis that the psychostimulan ...
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Journal articleJ Pediatr Psychol · 2002
OBJECTIVE: To determine (1) the neurocognitive development of children with sickle cell disease (SCD) from 6 months through 36 months of age, (2) the independent and combined contributions of biomedical risk and parenting risk to child neurocognitive funct ...
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Journal articleSchool Psychology Review · December 1, 1999
Sickle Cell Disease (SCD) refers to a complex group of hereditary hematologic disorders that are most common in people of African descent (Sickle Cell Disease Guideline Panel, 1993). Although most children with SCD demonstrate adequate academic functioning ...
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Journal articleJ Consult Clin Psychol · February 1994
A commitment-based intervention was evaluated for improvement of adherence to a 10-day antibiotic regimen. Experimental Ss made verbal and written commitments for adherence and completed tasks designed to increase their investment in a medication regimen. ...
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Journal articleBehaviour Change · January 1, 1992
Chronic illnesses in children and adolescents present difficulties for the individual and family. A family systems perspective can provide directions for assessment and intervention with these children and their families. A review is made of research on fa ...
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Journal articleBehavior Therapy · January 1, 1991
We evaluated whether symptoms of recurrent abdominal pain in children provide a basis for treatment selection. Subjects were assigned to dietary fiber or relaxation treatments based upon whether they presented with symptoms of constipation. Elven subjects ...
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