Commentary: SES, ethnicity and goodness-of-fit in clinician-parent communication during pediatric cancer trials.

Center for Ethics Education, Fordham University, Department of Psychology, Dealy Hall, 441 East Fordham Road, Bronx, New York 10458, USA.
Journal of Pediatric Psychology (Impact Factor: 2.91). 02/2005; 30(3):231-4. DOI: 10.1093/jpepsy/jsi033
Source: PubMed

ABSTRACT leukemia. In particular, their findings should encourage other investigators to evaluate the multidimensional factors influencing whether parental permission for child- ren's participation in cancer trials is informed, rationale, and voluntary. First, they selected sites that enabled examination of ICC assets and barriers posed by parent socioeconomic status and ethnicity. Second, they devel- oped a model to test previously unexamined causal links among parent demographics, clinician communication styles, parental questions during the ICC, and parental emotional reactions to and understanding of ICC com- munication about pediatric cancer trials. Third, they used a multi-method approach to provide both contem- poraneous behavioral and retrospective attitudinal data relevant to the effectiveness of the ICC. Finally, drawing upon previous measures of clinician efficacy and paren- tal distress, they operationalized partnership building, rapport building, information-giving, and information- seeking into measurable clinician and parent behaviors and obtained quantifiable self-reports of parental anxiety and control. Their approach is a model of theory testing that takes into account the contributions of both parent and clinician factors to family understanding and anxi- ety following informed consent.

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    • "). This context may facilitate a blurring of treatment and research goals (Fisher, 2005; Levi, Marsick, Drotar, & Kodish, 2000). Levi et al. discuss the possible positive and negative reactions that parents and youth may have to research recruitment efforts in clinical trials involving children with cancer. "
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    ABSTRACT: Intervention research with youths at elevated risk for suicidal behavior and suicide--a vulnerable and high risk population--presents investigators with numerous ethical challenges. This report specifically addresses those challenges involving the informed consent and assent process with parents/guardians and youths. The challenges are delineated in the context of pertinent laws and regulatory requirements, and guidelines are suggested for their practical resolution. These are illustrated with case examples from NIMH-funded intervention trials. Through the sharing of such methodological information, intervention researchers can support each other in conducting ethical research in a manner that does not unduly compromise scientific rigor.
    Suicide and Life-Threatening Behavior 11/2008; 38(5):486-97. DOI:10.1521/suli.2008.38.5.486 · 1.40 Impact Factor
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    ABSTRACT: Communication with children and adolescents with cancer about their disease and treatment and the implications of these is an important aspect of good quality care. It is often poorly performed in practice. Various interventions have been developed that aim to enhance communication involving children or adolescents with cancer. To assess the effects of interventions for improving communication with children and/or adolescents about their cancer, its treatment and their implications, updating the 2003 version of this review. In April 2006 we updated searches of the following sources: CENTRAL (The Cochrane Library, issue 1 2006); MEDLINE (Ovid), (2003 to March week 5 2006); EMBASE (Ovid) (2003 to 2006 week 13); PsycINFO (Ovid) (2003 to March week 5 2006); CINAHL (Ovid) (2003 to March week 5 2006); ERIC (CSA) (earliest to 2006); Sociological Abstracts (CSA) (earliest to 2006); Dissertation Abstracts: (2002 to 6 April 2006).In 2003 we conducted searches of CENTRAL; MEDLINE, EMBASE, PsycINFO, CINAHL, ERIC, Sociological Abstracts and Dissertation Abstracts.For the initial (2001) publication of this review we also searched the following databases: PsycLIT; Cancerlit; Sociofile; Health Management Information Consortium; ASSIA; LISA; PAIS; Information Science Abstracts; JICST; Pascal; Linguistics and Language Behavior Abstracts; Mental Health Abstracts; AMED; MANTIS.We also searched the bibliographies of studies assessed for inclusion, and contacted experts in the field. Randomised and non-randomised controlled trials, and before and after studies, evaluating the effects of interventions for improving communication with children and/or adolescents about their cancer, treatment and related issues. Data relating to the interventions, populations and outcomes studied and the design and methodological quality of included studies were extracted by one review author and checked by another review author. We present a narrative summary of the results. One new study met the criteria for inclusion; in total we have included ten studies involving 438 participants. Studies were diverse in terms of the interventions evaluated, study designs used, types of people who participated and the outcomes measured.One study of a computer-assisted education programme reported improvements in knowledge and understanding about blood counts and cancer symptoms. One study of a CD-ROM about leukaemia reported an improvement in children's feelings of control over their health. One study of art therapy as support for children during painful procedures reported an increase in positive, collaborative behaviour. Two out of two studies of school reintegration programs reported improvements in some aspects of psychosocial wellbeing (one in anxiety and one in depression), social wellbeing (two in social competence and one in social support) and behavioural problems; and one reported improvements in physical competence. One newly-identified study of a multifaceted interactive intervention reported a reduction in distress (as measured by heart rate) related to radiation therapy.Two studies of group therapy, one of planned play and story telling, and one of a self-care coping intervention, found no significant effects on the psychological or clinical outcomes measured. Interventions to enhance communication involving children and adolescents with cancer have not been widely or rigorously assessed. The weak evidence that exists suggests that some children and adolescents with cancer may derive some benefit from specific information-giving programs, from support before and during particular procedures, and from interventions that aim to facilitate their reintegration into school and social activities. More research is needed to investigate the effects of these and other related interventions.
    Cochrane database of systematic reviews (Online) 02/2008; 4(4):CD002969. DOI:10.1002/14651858.CD002969.pub2 · 5.94 Impact Factor
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