“Pilot study : family decision-making for research participation” [Meeting Abstract]
Fischer C; CRUZ-ARRIETA E; Masty J; Reisman J Pediatric blood & cancer 2005 ;45(5):508-508 #P.S.009 (p.216)
Clinical research trials investigators are to obtain assent from child/adolescent patients as well as parental informed consent. Federal regulations allow the assent requirement to be waived given the patient’s age, maturity, and psychological state. Thus, many young cancer patients begin clinical trials based on parental permission alone. To examine how parents, adolescent cancer patients, and research staff view the contribution of teenagers in the informed consent process for clinical trials in pediatric oncology, I developed the Family Decision-Making Questionnaire (FDMQ). The FDMQ has 30 items that assess views on : what information teen patients should receive regarding research; how patient and family characteristics affect the decision to allow teens to participate in research; the degree to which teens should have a say in participation decisions; and if teens should dictate when research should be stopped. The FDMQ was administered to 20 patients, 14 parents whose children had participated in oncology research trials, and 7 clinical trials research staff, in English or Spanish. The obtained date showed most participants to be in favor of patient involvement in research decision-making. Seventy percent of patients and 50% of parents believed that patients should have a say in research participation decisions. Some patients and the majority of parents felt that characteristics of the patient should be taken into account. Fifty-eight percent of patients and 64% of parents indicated that they were not clear about whether they were/had been research participants. These data replicate other studies findings on how informed consent processes may be inadequate in conveying important aspects of cancer research to families. Families need more education about research and on how to support the adolescent patients’ role in the informed consent process.
Cruz Arrieta, E. (1998). Parental stress, personal authority, and family environment of puerto rican women (Order No. 9830696). Available from ProQuest Dissertations & Theses Global. (304423023).
The experience of parental stress (stress related to maternal characteristics such as sense of competence, isolation, and perceived restrictions imposed by the role of mother,) its relation to the degree of personal authority within the families of origin–being connected and a part of the family of origin while acting from a differentiated position within it —and the discrepancies in perception of the families of procreation vs. the families of origin of 126 Mainland and Island-born Puerto Rican women was examined. The participants’ perceptions of three specific family characteristics: cohesion (the degree of commitment, help, and support family members provide for each other); conflict (the amount of openly expressed anger, aggression, and conflict among members); and expressiveness (the extent to which family members are encouraged to act openly and to express their feelings directly) were compared. It was hypothesized that: (a) parental stress was related to family environment and personal authority; (b) there would be a discrepancy between women’s perception of their family of origin and of procreation with respect to conflict, cohesion and expressiveness; and (c) that parental stress would be related to this discrepancy. Subscales from three self-report measures (Family Environment Scale, Parenting Stress Index, and Personal Authority in the Family System Questionnaire) were used. The data obtained from the answers to 155 items were analyzed using correlational and multivariate analyses. Statistically-significant differences between the characteristics of the participants’ families of origin and families of procreation were found, but no relation between these and parental stress could be established. Conflict in the family of procreation correlated moderately with parental stress. Personal authority was found to be a significant, moderate predictor of parental stress with the latter decreasing as personal authority increased. When considered together, the level of conflict in the family of procreation and the degree of personal authority were strong, significant predictors of parental stress. A trend toward less stress was evident when more social support was reported by the participants.
(1988) Efectos de la danzaterapia en la imagen corporal y la conducta escolar de niños en una escuela pública en Puerto Rico: Resumen. Tesis de maestría inédita: Universidad de Puerto Rico. (Unpublished master’s thesis)
This study investigated the effects of dancetherapy on the body image and the school behavior of Puerto Rican, low SES, public school children with perceptual-motor problems. Ten participants (1 female/9 males) were randomly assigned to the experimental and control groups. Body image and school behavior were measured pre- and post- 18 dancetherapy sessions using the Draw-a-Person test (Koppitz) and the Spanish-translation of the Achenbach Child Behavioral Checklist (Inventario de Comportamiento Escolar-R (IDCE). It was hypothesized that there would be a significant difference in the scores of the groups. The Wilcoxon non-parametric statistic was used. No statistically-significant differences within or between the groups were found. Dancetherapy’s effectiveness to improve body image and behavioral problems could not be established empirically. However, qualitative analyses of the DAP, clinical judgement of raters, and feedback provided by school teachers pointed to improvement on these variables for some of the participants. Methodological limitations and social/school context variables were discussed, as well as the value of the study in light of the absence of any previous research on this topic in Puerto Rico and the lack of information about dancetherapy as a a therapeutic tool at the time.