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Educational Related Problems for Children With Cancer
... Children are frequently forced to long periods in bed or in a restricted area (such as hospital room) where they are not allowed to meet friends or relatives. Long hospitalization can cause delays in school learning and development (White, 2003). Childhood cancer patients results at school, assessed by self-report and proxy (teachers, parents)-report questionnaires, differed significantly from both the siblings' and the healthy controls' results: The school marks in 4 CBCL: Child Behavior Checklist is a behavioral and emotional symptom checklist for children from 4 to 18 years of age that records 112 child's problems and 3 areas of competency as reported by parents. ...
... Children are frequently forced to have long periods in bed or in a restricted area (such as hospital room) where they are not allowed to meet friends or relatives. Long hospitalization can cause delays in school learning and development (White, 2003), for instance the school marks in mathematics and in foreign languages tend to be worse (Lähteenmäki et al., 2002) and these children have difficulties in socialization and in emotionality, especially those under 6 years of age (Adamoli et al., 1997). The literature about returning to school by child with cancer was recently reviewed (Vance & Eiser, 2002) showing that while there was a mixed evidence about whether children have significant behavioral problems in school, studies involving social behavior and peer relationships generally concluded that children with cancer were more sensitive and isolated than peers, according to both peer and teacher reports. ...
... We had seen that children with leukemia are often hospitalized for long periods because of their immunosuppressed status and because of the therapies; this might place them at further risk for psychosocial developmental delays. The cognitive impairments related to antitumoral drugs and to the blood stem cell transplantation (Waber et al., 2000;Jansen et al., 2005), the general psycho-social difficulties in schooling tasks (White, 2003;Lähteenmäki et al., 2002) and in social relationships (Vance & Eiser, 2002;Adamoli et al., 1997) In regard to this question we expected that children with leukemia under treatment have particularly socialization problems related both to interpersonal relationships and to the respect of social and community rules, particularly due to their isolation experience. We also had thought that children under 6 years of age could have difficulties in their motor abilities proportionally to their days of hospitalization. ...
The main focus of my research has been the identification of family factors predicting short and long-term child adaptation and quality of life of leukemic children. The rationale for this study is related to the advancement of therapies for cancer illnesses, especially leukemia (Ostroff et al., 2002), with an increasing attention on adaptation and quality of life of children with cancer and of their families (Eiser et al., 2005; Magal Vardi et al., 2004; Pickard et al., 2004). However the literature is not sufficiently completed on these psycho-social aspects during the therapies and on predictive factors identifying children and families more at risk for psycho-social problems.
A longitudinal approach was used to assess young patients and their parents at several steps of the therapy: 118 in the second week after diagnosis communication (T1), 110 in the second month (T2), 97 after 6 months (T3), 78 after 1 year (T4) and 45 after 2 years (T5). These patients were recruited at the Haematology-Oncologic Clinic of the Department of Pediatrics, University of Padova.
In this study a large number of instruments for the assessment of both parents and children has been used, adopting a multi-method approach: Questionnaires, self-report, in depth interviews and psychological tests. All the instruments were derived from the international literature of this field. The principal results are the following:
1. At one year from the diagnosis children's development delays are evident, especially Socialization (78.2% of delays), followed respectively by Motor area in children aged 0-6 years (63.8%), by Daily Living Skills area (51.3%), and by Communication area (24.4%). The model tested (R2 = 0.40; p = 0.0001) shows early child's coping (ß = 0.69) mediated by Parenting factor (ß = -0.11) as the best predictor of child's adaptive behavior post 1 year.
2. Longitudinal analyses on mental health of parents show that: DPTS symptoms don't change throughout time (F(2,140) = 1.09; p = 0.34); current life own perception increases during time (F(2,144) = 31.17; p = 0.0001); cognitive dysfunctioning doesn't modify during time (F(2,140) = 0.06; p = 0.93); depressive (F(2,144) = 3.58; p = 0.030) and arousal (F(2,144) = 4.26; p = 0.016) symptoms dampen. Also state anxiety at 6 months dampens significantly to 1 years post-diagnosis (t(71) = 2.71, p = 0.008). Parental psycho-social dimensions have the following trends: Emotional coping doesn't change along time (F(2,144) = 1.003; p = 0.37) and so does perceived Social support (F(2,144) = 0.22, p = 0.76); while Trust in medical care (F(2,144) = 52.52, p = 0.0001), Communication about illness (F(2,144) = 25.31, p = 0.0001), Routine and time reorganization (F(2,144) = 47.54, p = 0.0001) and couple connectedness (F(2,144) = 6,24, p = 0.004) increase along time.
3. An empirical model of path-analysis was estimated to evaluate child's quality of life at the second week from the diagnosis inside the psycho-social context. This model (x2(4) = 5.03; N = 128; p = 0.28; RMSEA = 0.045: NNFI = 0.99; CFI = 1) shows that child's quality of life is predicted by Parental trust in the medical staff, by Child Coping and Child Adaptability. These last two predictors are in turn sustained by the fixed factor Child age and by the modifiable factor Parenting.
4. An empirical model of path-analysis is estimated to identify early predictors of parental DPTS symptoms. This model (x2(9) = 8.83; N = 100; p = 0.45; RMSEA = 0.0001; NNFI = 1; CFI = 1) shows that emotional coping and support received are key elements impacting, the first, on parental memory abilities, and, the second, on the perceptions of their current lives. All these family factors are also related to parents' BSI-18 global score assessed at the diagnosis and indicative of short-term PTSS problems.
Specific psycho-social intervention programmes for ill children and their families can be proposed and structured basing on the empirical information collected.
... These include transitions from mainstream to bedside schooling, and re-entry into school after acute care spells. Treatment and illness impact school competency, often requiring targeted intervention to facilitate transitions (Root et al., 2016;White, 2003) with the involvement of multiple stakeholders. Prevatt, Heffer and Lowe (2000) identified five key stakeholder groups whose perspectives should inform school reintegration: 1) children with cancer; 2) their parents or families; 3) teachers and school staff; 4) peers; and 5) clinical staff. ...
Adult survivors of childhood cancer experience poorer long-term socioeconomic outcomes, yet the influence of educational participation during primary school years is not well understood. This review synthesizes empirical findings from seventy-four quantitative and qualitative peer-reviewed studies, published from 2000-2019 and identified through a search of nine databases. The findings point to the following recommendations to improve policy and practice: provision of teaching and learning away from school; focus on student-centeredness; strengthening home-school-hospital partnerships; facilitation of teacher and peer acceptance; school re-entry support; resources and funding; and advocacy. The findings suggest that a Life Course lens is appropriate to conceptualize the role of educational participation for mitigating long-term impacts of childhood cancer during developmental transitions from childhood to adolescence and adulthood.
... They are frequently forced to long periods in bed or in a restricted area (such as hospital room), where they are not allowed to meet friends or relatives. Fewer contacts with peers mean fewer opportunities to develop social skills [19], repeated school absence and long hospitalizations may cause delays in school learning [20] and a restricted academic success [21]. In the social health domain, children with ALL reported significantly lower abilities to maintain friendship and social competence, showing, when survivors, more compromised areas towards the relationships with their best friend [22]. ...
Background: Due to advances in chemotherapy and supportive care, about 83% of childhood
cancer survivors aged 0-19 years will survive 5 years. More attention has been paid to understand
the impact of cancer treatments on children’s development, in particular with respect to late effects on academic, physical and social functioning, essential for optimization of long-term outcome.
Scant literature addresses the functioning of children during acute treatment, mainly focusing on
childhood cancer survivors.
Aims: This study was aimed at comparing the adaptive functioning in preschooler children with
leukemia post 1 year of treatment and a control group of peers who had no history of serious
illness. The link between medical factors and adaptive outcomes were investigated.
Study Design: Case control study.
Place and Duration of Study: Department of Child and Woman Health (Oncology Hematology
Division), University of Padua, and pediatricians’ ambulatories in the region of Trentino Alto Adige,
between January 2007 and January 2008.
Methodology: The participants in this study included 48 leukemic children and their families,
recruited at the Haematology-Oncologic Clinic of the Department of Child and Woman Health,
University of Padua. Children’s mean age was 52.35 months (SD = 12.85, range = 23-72 months),
22 males and 26 females. Most children had Acute Lymphoblastic Leukemia (ALL) (N = 44), while
4 had Acute Myeloid Leukemia (AML) with a mean days of hospitalization of 56.13 (SD = 49.36,
range: 28-315). Sane peers (N=48) were recruited at pediatricians’ ambulatories in the region of
Trentino Alto Adige. Each family was interviewed about their children’s adaptive functioning by
Vineland Adaptive Behavior Scales.
Results: The two samples were homogeneous both for children’s characteristics (age in months
and gender) and for their parents’ socio-demographic characteristics. Paired-sample t-tests
revealed that parents of children with leukemia reported in their children significantly less adaptive
functioning both composite and in three of the four domains: Communication, Socialization and
Motor Abilities. The results of a series of ANCOVAs showed that the adaptive functioning in
children with leukemia had the following at-risk factors: children aged 37-48 months, major days of
hospitalization and the high risk therapy.
Conclusion: Future studies should understand better, with an ampler sample and using a
multimethod approach, these lower adaptive outcomes in children with leukemia. These findings
can guide specific interventions for parents and for children to support the potential developmental
delay due to therapies, such as occupational therapy and socialization/educational programs during
hospitalization, in occasion of day-hospital follow-ups and at school.
We propose that schools have a particular place in the lives of students living with cancer, and that many teachers are largely
unprepared to understand the ongoing psychosocial and physical challenges they can face. We suggest that for teachers who
educate students living with cancer there may be emotional stress or satisfaction unique to their experiences that are largely
uninvestigated. We also outline a phased line of research that will investigate how to develop school-based, yet community
wide networks of support to provide resources than can sustain teachers through the emotionality inherent in walking with
students through their cancer journeys.
KeywordsStudents with cancer–Teacher emotions–Ethical issues–Methodological issues
Objet de l’étude
Grâce aux progrès médicaux, la majorité des enfants atteints de cancer guérissent. Cependant, en raison de la maladie, des traitements et trop souvent des séquelles occasionnées, la vie scolaire d’un enfant traité pour un cancer est perturbée. Des études américaines, surtout menées en milieu clinique, concluent que les élèves traités pour un cancer peuvent faire face à de nombreuses difficultés : absentéisme scolaire, limitations dans les activités en raison de divers troubles, difficultés interpersonnelles avec les pairs, sentiment d’anormalité, piètre estime de soi. Ces obstacles et ces difficultés existent certes, mais nous avons voulu examiner la question sous un jour différent pour éclairer ce qui peut contribuer favorablement à la persévérance et la réussite scolaires des enfants traités pour un cancer. Misant sur notre expertise sur le bien-être des enfants et des familles, et adoptant l’approche de la psychologie positive, nous avons plutôt cherché à comprendre ce qui peut, tant chez l’individu que chez les groupes et les institutions, soutenir leur développement optimal.
Objectifs de l’étude
Le premier objectif de l’étude était de décrire les perceptions de trois groupes d’acteurs : familiaux, professionnels et communautaires, quant à la persévérance et la réussite scolaires d’enfants traités pour un cancer. Le second était de comparer les perceptions des différents groupes pour en saisir les convergences ou divergences, pour identifier les enjeux et pour établir des bases de concertation entre les acteurs. En plus de notre intérêt scientifique pour mieux comprendre le problème en l’examinant d’une façon novatrice, nous avons entrepris cette étude pour fournir des informations pertinentes et solides pour planifier des actions susceptibles de favoriser la persévérance et la réussite scolaires des enfants traités pour un cancer.
Méthode
L’étude repose sur l’analyse de contenu classique des réponses données par des acteurs clés à des questions ouvertes posées en entrevues individuelles, suivant des protocoles inédits prédéterminés.
Au total, 155 participants provenant de plusieurs régions du Québec composent l’échantillon; des acteurs familiaux : 53 enfants (de 7 à 17 ans) ayant eu une leucémie, 51 parents et 18 adultes guéris d’un cancer pédiatrique; des acteurs professionnels : 10 enseignantes, 3 directeurs d’école, 6 professionnels ou gestionnaires du MELS, des directions régionales de l’adaptation scolaire ou de commissions scolaires, 6 enseignants en centres hospitaliers; des acteurs du milieu communautaire : 8 coordonnatrices régionales de Leucan .
Les entrevues individuelles, d’une durée moyenne de 40 minutes pour les enfants et de 60 pour les adultes, se sont déroulées entre janvier 2006 et novembre 2007. Transcrites intégralement dans une base de données, les réponses ont fait l’objet d’une analyse de contenu classique : elles ont été codées séparément, question par question, par deux assistantes travaillant de façon indépendante. Par la suite, le codage a été validé par consensus entre les assistantes et la coordonnatrice.
Principales constatations de l’étude
Nos analyses ont permis d’établir 19 constatations, qui reposent chacune sur la synthèse des perceptions des répondants des différents groupes d’acteurs. Les voici regroupées autour de six grands thèmes :
Répercussions du cancer sur le bien-être
1. La vie va relativement bien, mais n’est pas sans difficulté.
2. Le cancer peut avoir des répercussions positives dans la vie de l’enfant et de ses parents.
3. Les jeunes adultes guéris sont globalement satisfaits de leur situation de travail,
mais ne la trouvent pas idéale.
Répercussions du cancer sur la vie scolaire
4. Le retour (ou l’entrée) en classe après la maladie se passe plutôt bien.
5. Comment ça va à l’école? Cela dépend du point de vue.
6. Le goût pour l’école et l’investissement scolaire sont bien présents.
7. Les séquelles du cancer peuvent obliger à modifier le parcours d’études.
Un rôle parental capital, mais exigeant
8. Les parents apportent un soutien omniprésent à leur enfant.
9. Le cancer est source de difficultés psychologiques et financières pour les parents.
Un milieu scolaire peu préparé, mais des acteurs scolaires qui veulent soutenir les élèves
10. La qualité de leurs relations interpersonnelles et le soutien affectif reçu sont prépondérants
dans le bien-être des enfants à l’école.
11. La plupart des acteurs à l’école connaissent la situation de l’élève, mais n’ont pas tous des connaissances adéquates sur le cancer pédiatrique.
12. Les enseignants ne sont pas formés pour travailler avec des élèves malades.
13. Le soutien pédagogique aux élèves provient principalement des enseignantes.
14. Des suggestions sont énoncées pour rendre le milieu scolaire plus propice pour les élèves.
Quelques sources de soutien hors du milieu scolaire
15. Peu de répondants ont eu des contacts avec les services scolaires du milieu hospitalier.
16. Les enfants poursuivent certaines activités d’apprentissage à la maison pendant leur absence de l’école.
Un soutien potentiel, mais des actions peu concertées
17. Pendant la maladie, le lien avec l’école est peu intense.
18. La concertation entre les milieux de la santé et de l’éducation est insuffisante.
19. L’action de Leucan sur le plan scolaire est insuffisamment connue, peu répandue
et pourtant jugée utile.
Pistes d’action inspirées des principales constatations de l’étude
Les principales constatations de l’étude suggèrent 53 pistes d’action spécifiques pour favoriser la persévérance et la réussite scolaires des enfants traités pour un cancer. Nous les proposons à la réflexion des planificateurs, spécialistes et intervenants de toutes les instances, comme autant de possibilités à considérer et à articuler dans un plan d’action, en fonction de leur importance et de leur faisabilité. Ces pistes d’action se regroupent autour de neuf démarches : (A) respecter; (B) informer, sensibiliser; (C) soutenir directement l’élève et ses parents; (D) collaborer; (E) tirer un meilleur parti des ressources disponibles; (F) former, consolider et soutenir les compétences professionnelles; (G) s’inspirer de pratiques exemplaires pour agir; (H) produire de nouvelles connaissances; (I) se donner les moyens d’agir. Souvent liées, c’est lorsqu’elles sont considérées concomitamment que plusieurs de ces pistes prennent tout leur sens et sont susceptibles de développer leur plein potentiel.
Conclusion
Grâce à un dispositif de recherche novateur, l’étude livre des informations inédites. Tout d’abord, 19 constatations résultent de l’analyse minutieuse et rigoureuse des propos de répondants des différents groupes et de la comparaison de leurs points de vue. L’étude innove aussi en proposant un ensemble organisé de 53 pistes d’action fondées sur ces constatations. Ne constituant certes pas une liste achevée, ces pistes pourront être comprises et jugées différemment par les uns et par les autres, selon les contextes. En livrant ces pistes, nous invitons toutes les personnes concernées à analyser la problématique et les moyens à leur disposition pour concevoir un plan d’action susceptible de favoriser la persévérance et la réussite scolaires des enfants traités pour un cancer.
To adequately help children with cancer, care providers need to understand the complexity of symptoms and problems associated with the illness that children are experiencing, which can enable them to better tailor patient care individually to each child. In this integrative literature review, we identified the types of symptoms and problems that children with cancer can experience during treatment and rehabilitation; the terms/expressions they use to describe their symptoms and problems; how children's symptoms and problems vary during the course of their illness; and how they vary and co-vary with age, gender or race. Of the 1175 titles identified, 110 articles met the inclusion criteria and were included in the review. Seventy-eight were research-based. A total of 219 distinct symptoms or problems were identified in the literature either as the main problem or a symptom of the main problem. There is significant evidence that children and adolescents experience numerous and complex symptoms, and problems during and after treatment for cancer. Children use many different expressions to talk about their symptom experiences. However, few articles looked at how children's symptoms and problems varied during the course of their illness or the variations in symptom severity and degree of bother, or examined the relationship between children's symptom experience and age, gender, or race. Most instruments that were used to measure symptoms were interviewer-administered questionnaires, often adaptations from adult versions, and in younger children, symptoms were often obtained from adult informants. The insights gained from this review can be helpful to researchers and clinicians who wish to better understand how symptoms and problems are experienced from the children's own perspective. However, more research is needed: to better understand differences in symptom experiences among different age groups; to identify differences among children from distinct cultural, ethnic, or socio-economic backgrounds; to clarify how symptoms and problems interfere with daily life; and to refine assessment methods that allow even younger children to communicate their symptom experiences in an age-adjusted manner.
The NICHD has been studying normal reading development and reading difficulties for 35 years. NICHD-supported researchers have studied more than 10,000 children, published more than 2,500 articles, and written more than 50 books that present the results of 10 large-scale longitudinal studies and more than 1,500 smaller scale experimental and cross-sectional studies. Many of the longitudinal research sites initiated studies in the early 1980s with kindergarten children before they began their reading instruction and have studied the children over time. Researchers have studied some children for 15 years, with several sites following the youngsters for at least 5 years. Additional research sites have joined within the past 3 years to investigate the effects of different reading instructional programs with kindergarten and 1st grade children. At most research sites, multidisciplinary research teams study cognitive, linguistic, neurobiological, genetic, and instructional factors related to early reading development and reading difficulties. 1
This position paper of the American Federation of Teachers contends that the most fundamental responsibility of schools is teaching students to read. The paper states that the type of literacy instruction that includes a range of research-based components and practices has not made its way into every classroom, and that, indeed, a chasm exists between classroom instructional practices and the research knowledge base on literacy development. It finds that well-designed, controlled comparisons of instructional approaches have consistently supported these components and practices in reading instruction: (1) direct teaching of decoding, comprehension, and literature appreciation; (2) phoneme awareness instruction; (3) systematic and explicit instruction in the code system of written English; (4) daily exposure to a variety of texts, as well as incentives for children to read independently; (5) vocabulary instruction that includes a variety of complementary methods designed to explore the relationships among words and the relationships among word structure, origin, and meaning; (6) comprehension strategies that include prediction of outcomes, summarizing, clarification, questioning, and visualization; and (7) frequent writing of prose to enable deeper understanding of what is read. The paper also discusses an effective curriculum for teacher preparation and inservice development. Contains 47 notes and 49 references. Appended is a suggested core curriculum for teacher candidates. (NKA)
This book examines critical issues in classification and definition of learning disabilities; the development of theory in learning disabilities; the development of cognitive, developmental, and educational models of learning disabilities; and social and public policy in learning disabilities. After an introductory chapter by G. Reid Lyon and Louisa Moats, the book is divided into four sections. Part I covers classification of learning disabilities, including: "Models of Classification as Related to a Taxonomy of Learning Disabilities" (Roger Blashfield); "Classification of Learning Disabilities: Relationships with Other Childhood Disorders" (Jack Fletcher, et al.); "Broadening the Scope of Classification Research: Conceptual and Ecological Perspectives" (Deborah Speece); and"Issues in Empirical versus Clinical Identification of Learning Disabilities" (Robin Morris). Part II, Definition and Theory in Learning Disabilities, includes: "Defining Learning Disabilities: A History of the Search for Consensus" (John Doris); "Development of Operational Definitions in Mental Retardation: Similarities and Differences with the Field of Learning Disabilities" (Donald MacMillan); "Variations on Theory in Learning Disabilities" (Joseph Torgesen); and "A Science and Theory of Learning Disabilities" (Kenneth Kavale). Part III, Perspectives on Research and Clinical Practice in Learning Disabilities, includes the following: "Learning Disabilities from the Perspective of Cognitive Psychology" (H. Lee Swanson); "Learning Disabilities: An Interactive Developmental Paradigm" (Melvin Levine, et al.); "Learning Disabilities from an Educational Perspective" (Naomi Zigmond); and "The Construct Validity of Discrepancy Definitions of Reading Disability" (Keith Stanovich). A final section examines the impact of social and policy issues on learning disabilities, including: "Linking Purpose and Practice: Social-Political and Developmental Perspectives on Classification" (Barbara Keogh); "Learning Disabilities and Public Policy: Myths and Outcomes" (Edwin Martin) and "Conclusions and Future Directions" (Duane Alexander, et al.). Papers include references. (PB)
Multisensory teaching of basic language skills Language and reading success What reading does for the mind
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