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Sickle cell disease (SCD) is an inherited, multi-system, chronic disease with the highest prevalence affecting people of Sub-Saharan African descent. While major advances in SCD care have occurred over the last few decades in many African countries these advances are not readily available. Prior literature from Ghana and Kenya describe stigma, despair, and economic burden as well as hope when a child has SCD. When people migrate to North America with a child with SCD it is unknown whether their perception of the disease changes. We asked, "How do immigrant parents of children with SCD from Sub-Saharan Africa perceive, and manage the disease in the context of western medical care?"The research question was explored with qualitative methodology, specifically focused ethnography. Semi-structured interviews were conducted with parent(s). The interviews were audio recorded, transcribed, and open coded. Rigor was determined through methodological coherence, appropriate and sufficient sampling, and iterative data collection and analysis.Twelve interviews were conducted. Identified themes are as follows: memories of SCD in Africa, the emotional journey towards acceptance, and parental approach to care for their child.Healthcare providers should be responsive to an immigrant families' needs and not expect linear progression of emotional acceptance to the diagnosis. Healthcare providers patience with the process helps establish trust, works to facilitate and encourage hope and acknowledges the strength of the families, and their dedication to their family member. Healthcare providers should acknowledge parents' sources of support (religion/family) and ensure parents are aware of medical advances.

In Canada, CNS tumors accounted for nearly 22% of the new childhood cancer diagnoses during 1995–2000 in the ≤15 year age group. The study’s objective was to describe children and youth (age

There is a paucity of published literature on the epidemiology of childhood acute leukemias and lymphomas in Canada. This study was designed to describe children and youth (age20 years) diagnosed with acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), Hodgkin lymphoma (HL), and non-Hodgkin lymphoma (NHL) in Alberta, Canada, during 22 fiscal years. The Alberta Cancer Registry was used to extract data all ALL, AML, HL, and NHL cases diagnosed between April 1, 1982, and March 31, 2004. Population data for Alberta were also obtained. Descriptive statistics and cluster detection tests were used. During 22 years, 525, 117, 257, and 111 children (total = 1010) were diagnosed with ALL, AML, HL, and NHL, respectively. The median ages at diagnosis were 4, 11, 16, and 12 years for ALL, AML, HL, and NHL, respectively. The majority were male for ALL (287/525, 55%), AML (64/117, 55%), and NHL (81/111, 73%), and female for HL (133/257, 52%). The crude rates per 100,000 children were variable, without significant trends, over time and for each diagnosis; the median annual rates, per 100,000 children, were 3.00 (ranging from 1.87 to 3.75) for ALL, 0.62 (ranging from 0.26 to 1.27) for AML, 1.42 (ranging from 0.76 to 2.67) for HL, and 0.54 (ranging from 0.24 to 1.40) for NHL. A few potential spatiotemporal clusters were identified. They are likely due to small number of cases and plausibly clinically insignificant. Overall, childhood leukemia and lymphoma rates in Alberta have remained relatively stable, with no clear epidemiological trends and no significant spatiotemporal clustering. Further investigations are warranted to see if such stability continues and if spatiotemporal patterns arise from longer studies and studies in larger geographic regions with a larger sample size, whilst analyzing for other causal/associated factors, individual susceptibilities, and disease outcomes.

Objectives The objective of this study was to describe children and youth

Identifying cognitive deficits associated with pediatric brain tumors and their treatment is important in delineating the mechanisms of intellectual decline often associated with these diseases. The authors evaluated sustained attention, information processing speed, working memory, and IQ in 64 patients with posterior fossa tumors, including those treated with either: (a) surgery and cranial radiation (n = 32), and (b) surgery without radiation (n = 32). Ten patients treated for non-CNS solid tumors were included as a comparison group. The authors also examined the impact of relevant demographic and medical variables on neurocognitive outcome. The authors found that neither age at, nor time since, diagnosis predicted cognitive outcome in this sample. Further, sustained attention and working memory were largely intact and there were no differences between groups. Patients treated with cranial radiation demonstrated lowered short-form IQ and slow information processing speed: Patients treated with cranial radiation and who experienced postsurgical complications demonstrated the poorest performance. The authors consider information processing speed to be an excellent candidate mechanism in understanding the impact of cranial radiation on intellectual outcome.

The present investigation examined the empirical and theoretical validity of an instrument developed to assess family members' perceptions of needs following the brain injury of a relative. The Family Needs Questionnaire (FNQ) consists of 40 items reflecting commonly reported family needs. The development of the items was based on the literature describing family reactions to brain injury and other medical disabilities. A principal-components factor analysis was executed based on the FNQ responses of 178 family members. A six-factor solution was selection as the best fit for the data, yielding the following independent subscales: (1) Need for Health Information; (2) Need for Emotional Support; (3) Need for Instrumental Support; (4) Need for Professional Support; (5) Need for a Support Network; and (6) Need for Involvement with Care. Further analysis indicated at least adequate internal reliability for each scale. Overall, the measure appears to offer unique information relevant to family members' needs after brain injury.

We sought to identify whether deficits in selective attention are present in pediatric brain tumor patients. Selective attention was assessed with covert-orienting, filtering, and visual-search tasks in 54 patients with either (1) posterior fossa (PF) tumors treated with cranial radiation and surgery (n = 22); (2) PF tumors treated with surgery alone (n = 17); or (3) non-CNS tumors (n = 15), who served as a patient control group. To account for normal development, patient performance was also compared with that of healthy age-matched controls (n = 10). We found that in PF tumor patients selective attention was impaired, regardless of whether they were treated with cranial radiation and surgery or surgery alone. However, patients treated with cranial radiation were most impaired. These patients may have greater damage to posterior brain regions know to mediate selective attention as the result of tumor location, effects of surgery, and higher doses of radiation to the posterior regions of the brain. These findings help to elucidate the potential impact of pediatric brain tumors and their treatment on discrete attentional skills. (JINS, 2009, 15, 205–216.)

Concerns regarding a child's sleep, identified by a caregiver or by the health care practitioner, are commonly raised but often left unexplored. Families in geographically isolated areas, with limited access to specialty services such as pediatric sleep medicine, are at increased risk for unmet treatment needs. Telehealth is a potential vehicle for delivery of these specialty services and overcoming barriers in diagnosing and treating sleep disorders in children by improving access and enhancing support for the families in their communities. This article describes the initiation of a pilot program in the delivery of multidisciplinary pediatric sleep medicine services via telehealth in Alberta, Canada.

Neurobehavioral functioning of 50 Canadian children diagnosed with Fetal Alcohol Spectrum Disorder (FASD) was evaluated. The aims of this study were to identify specific areas of weakness in neurobehavioral functioning, to examine whether neurobehavioral functioning was related to various predictor variables, and to determine which measures differentiated between children given a brain score of 2 (possible dysfunction) and 3 (probable dysfunction). Participants displayed difficulties with many aspects of intelligence, memory, executive functioning, and attention. Measures of Full scale and Verbal IQ, as well as memory for faces and numbers differentiated between children with a brain 2 and 3 ranking. An interesting pattern of strengths and weaknesses emerged as well as significant differences related to ethnic background, gender, and age. Aboriginal children and Caucasian children with FASD do not appear to show the same pattern of strengths and weaknesses in neurobehavioral functioning.

This study investigated the presence of neuropsychological deficits associated with hitting the ball with one's head (heading) during soccer play. A neuro-cognitive test battery was administered to 60 male soccer players, high school, amateur and professional level, and 12 nonplaying control participants. The effects of currently reported heading behavior as well as that of estimated lifetime heading experience on neuropsychological test performance were examined. Players with the highest lifetime estimates of heading had poorer scores on scales measuring attention, concentration, cognitive flexibility and general intellectual functioning. Players' current level of heading was less predictive of neuro-cognitive level. Comparison of individual scores to age-appropriate norms revealed higher probabilities of clinical levels of impairment in players who reported greater lifetime frequencies of heading. Because of the worldwide popularity of the game, continued research is needed to assess the interaction between heading and soccer experience in the development of neuropsychological deficits associated with soccer play.

Professionals have suggested that aggressiveness, substance abuse, and criminality contribute to poor outcomes after brain injury. There is considerable research regarding post-injury aggressive behaviour, but limited information concerning criminal behaviour and alcohol use patterns. With a sample of 327 patients varying in severity of traumatic brain injury, the present investigation examined alcohol use patterns, arrest histories, behavioural characteristics, and psychiatric treatment histories. Relative to the uninjured population, analysis revealed relatively high incidence of heavy drinking, both pre- and post-injury, among patients with a history of arrest. Increases in abstinence rates were found regardless of arrest history. In addition, a history of arrest was associated with a greater likelihood of psychiatric treatment. Findings also indicated relatively high levels of aggressive behaviours. Discussion focuses on implications for evaluation, rehabilitation, and future research.