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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    • "There is, of course, a baseline level of information necessary for informed consent [25]. Beyond this, trialists and ethicists could consider how far communication about trials can be configured around the needs and preferences of individual parents [68] as well as the social norms of the setting [25]. "
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    ABSTRACT: As the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enroll their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research, which allows them to articulate their views in their own words. Parents want to do their best for their children, and socially and legally their role is to care for and protect them yet the complexities of the medical and research context can challenge their fulfillment of this role. Parents are simultaneously responsible for their child and cherish this role yet they are dependent on others when their child becomes sick. They are keen to exercise responsibility for deciding to enter a child in a trial yet can be fearful of making the 'wrong' decision. They make judgements about the threat of the child's condition as well as the risks of the trial yet their interpretations often differ from those of medical and research experts. Individual parents will experience these and other complexities to a greater or lesser degree depending on their personal experiences and values, the medical situation of their child and the nature of the trial. Interactions at the time of trial recruitment offer scope for negotiating these complexities if practitioners have the flexibility to tailor discussions to the needs and situation of individual parents. In this way, parents may be helped to retain a sense that they have acted as good parents to their child whatever decision they make. Discussing randomised controlled trials and gaining and providing informed consent is challenging. The unique position of parents in giving proxy consent for their child adds to this challenge. Recognition of the complexities parents face in making decisions about trials suggests lines for future research on the conduct of trials, and ultimately, may help improve the experience of trial recruitment for all parties.
    BMC Medical Ethics 03/2009; 10(1):1. DOI:10.1186/1472-6939-10-1 · 1.50 Impact Factor
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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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