These qualitative analyses are a component of the clinical trial: “Effects of Sertraline Treatment for Young Children with FXS: Examination of Developmental Outcomes and Family Contexts.”
We argue that inclusion of a sociocultural perspective within the context of a clinical trial affords consideration of:   A dynamic view of development – simultaneous consideration of biological and sociocultural factors (Vygotsky, 1978). Application of a bioecological framework and consideration of ever changing nested settings and contexts over time (Bronfenbrenner, 2005

Ching, Cynthia Carter

Hagerman, Randi

Hess, Laura Greis

English

Dominican Scholar

Dominican ScholarCollected Faculty and Staff Scholarship Faculty and Staff Scholarship2014Family Meanings, Contexts and HopesWithin a Clinical TrialLaura Greis HessMIND Institute, University of California, Davis, laura.hess@dominican.eduCynthia Carter ChingMIND Institute, University of California, DavisRandi HagermanMIND Institute, University of California, DavisSurvey: Let us know how this paper benefits you.This Conference Proceeding is brought to you for free and open access by the Faculty and Staff Scholarship at DominicanScholar. It has been accepted for inclusion in Collected Faculty and Staff Scholarship by an authorized administrator ofDominican Scholar. For more information, please contact michael.pujals@dominican.edu.Recommended CitationHess, Laura Greis; Ching, Cynthia Carter; and Hagerman, Randi, "Family Meanings, Contexts and Hopes Withina Clinical Trial" (2014). Collected Faculty and Staff Scholarship. 104.https://scholar.dominican.edu/all-faculty/104RESEARCH POSTER PRESENTATION DESIGN © 2012 www.PosterPresentations.com These qualitative analyses are a component of the clinical trial: “Effects of Sertraline Treatment for Young Children with FXS: Examination of Developmental Outcomes and Family Contexts.”  We argue that inclusion of a sociocultural perspective  within the context of a clinical trial affords consideration of: A dynamic view of development – simultaneous consideration of biological and sociocultural factors (Vygotsky, 1978). Application of a bioecological framework and consideration of ever changing nested settings and contexts over time (Bronfenbrenner, 2005):            INTRODUCTION Through interview methods and qualitative analysis we empirically explored the following questions: (1) What are the complexities of daily life, experiences and family meaning associated with various phenotypic manifestations of FXS? (e.g. language / communication, behavior, sensory processing, and anxiety) (2) What are family hopes and meanings for participation in this clinical trial?      RESEARCH QUESTIONS RESULTS DYNAMIC INTERACTION BETWEEN CHILD AND FAMILY  FAMILY MEANINGS AND FAMILY HOPES:   STRIKING A BALANCE  CONCLUSIONS Overall family functioning strongly enmeshed with child’s functioning including family participation in social events and in the community  Nested contexts Family hopes for medication often high Family perceptions of what constitutes improvement varies  Any  improvement is improvement  Searching for something more pronounced (e.g. going from non-verbal to verbal in a 6 month trial) Inclusion of qualitative narrative interviews within the context of a clinical trial provides:  Insights into complexities of family life  in context  An outcome measure that can be applied to compare placebo vs. medication groups beyond  the scope of developmental measures or questionnaires  An outcome measure that can be examined quantitatively in future analyses This study represents a mixed methods (both quantitative and qualitative) model for a collaborative and interdisciplinary clinical trial research  Our interdisciplinary team from the fields of:  medicine, occupational therapy, education, and speech pathology  This model is a mirror to what best practices are for intervention for children with FXS  SELECTED REFERENCES •Bronfenbrenner, U., & Ceci, S.J. (1994). Nature-nurture reconceptualized in developmental perspective: A bioecological model.  Psychological Review, 101(4), 568-586. •Bronfenbrenner, U. (2005). Making Human Beings Human:  Biological Perspectives on Human Development.  Thousand Oaks, CA:  Sage Publications, Inc. •Chaiklin, S. (2003). The zone of proximal development in Vygotsky’s analysis of learning and instruction. In Kozulin, Gindis, Ageyev & Miller (eds.), Vygotsky’s educational theory in cultural context. Cambridge University Press (pp. 39-64). •Cohn, E., Miller, L.J., & Tickle-Degnen, L. (2000). Parental hopes for therapy outcomes:  Children with sensory modulation disorders.  American Journal of Occupational Therapy, 54, 36-43. •Merriam, S.B. (2009).  Qualitative Research:  A Guide to Design and Implementation.  Josey-Bass, San Francisco, CA. •Rogoff, B. (2003).  The cultural nature of human development.  Oxford University Press. •Seidman, I. (2006, Third Ed.).  Interviewing as Qualitative Research:  A Guide for Researchers in Education and the Social Sciences.  Teachers College Press, New York, NY. •Vygotsky, (1978). Mind in society. Cambridge, MA: Harvard University Press. •Weiss, R. (1995).  Learning from Strangers:  The Art and Method of Qualitative Interviewing.  The Free Press,  New York, NY.  •Wertsch, J. (1985). Vygotsky and the social formation of mind. Cambridge, MA: Harvard University Press.  This study was funded by Health Resources and Services Administration (HRSA ,#R40MC22641).  Our sincerest thanks to the FXS families who participated in this study and to the FXS community for supporting this research.   MIND Institute Sertraline Team: Lauren Bishop, Salpi Siyahian, Tasleem Chechi, Jonathan Polussa, Susan Harris, Andrea Schneider, Kerrie Lemons Chitwood, Kylee Cook, Beth Goodlin-Jones, David Hessl, Pam Gallego, Louise Gane, Michele Ono and Julie Morcillo  Contact:    Laura Greiss Hess, PhD, OTR/L  (greisshess@comcast.net) (1) Pediatrics, MIND Institute, UC Davis, Sacramento, CA (2) School of Education, UC Davis, Davis, CA   Laura Greiss Hess, PhD, OTR/L (1,2), Cynthia Carter Ching, PhD (2) and Randi Hagerman, MD (1) Family Meanings, Contexts and Hopes Within a Clinical Trial Family Meanings and  Contexts Stress  Behavioral Impact Social Impact Child’s Abilities and Special Needs He's too active.  I find his activity level too high and to be very draining.  He basically does not stop.  He is on the go the whole time.  I find that he has no impulse control.  So it is a safety concern, because he will run away. I have to take a firm grip of his hand, because if I don't he will run onto the street and this has happened many times. It absolutely impacts everything.  It impacts my daily life.  And I feel bad because I am a very sociable person.  My friends will invite me out and it is just such a hassle! He is not gonna be interested and he's gonna be running off and he's not gonna eat, and he's gonna do this, and he's gonna be throwing a tantrum. So it is just that I shy away from social events. It's kind of made us not be able to go to many family functions and things. He would freak out, he would cover his ears and start shaking.  He would try and find a way out of the room and if he couldn't he would just kind of sit there and cry until he was pulled out of there or everyone else was moved away.  He would just sit there and cry. You feel so bad for him when they are going through this and there is nothing you can do. You just don't want to go out, it is exhausting, people staring.  It is hard, because going to a restaurant, you cannot sit quietly.  He wants to get out (of his high chair), and he makes a mess around the place.  Even if it doesn’t help my son right now, it may help my daughter at some point.  And it is going to help my thousand Facebook friends with their kids. That’s OK! I hope he gets the drug. I don't want him to get the placebo.  When we were on that first flight and he was kicking and I had to restrain him the whole time.  I was like, oh my god, we are doing all of this and we could end up getting the freakin’ placebo! (laughing) So transitions, anxiety, language, speech, those are things I am trying to target and try to help calm him and help him center and focus. Really hoping and praying that it will work. I like the fact that we have the MIND Institute watching him, so if he does have crazy side effects or anything, they know what to look for. We felt better coming here. I have high hopes, he’s young, he’s showing positive signs, if we can do anything to help him without hurting him then we should do it and that is why we are here. I’m just hoping to learn that in the end they will be able to find a cure.  Or just along the way, learn to make it livable, make them be capable of living independently.  That is my goal 12 randomly selected interviews (6 baseline and 6 post)  4 placebo and  2 sertraline treatment  Transcription and coding done blind. We used a directed, narrative, conversational interview at baseline and post testing.   Families were asked to share their stories and experiences in their own words as a first person account, rather than responding to a set of predetermined response choices. Interviews were audio recorded , transcribed verbatim  and coded using  the Constant Comparison Method .  Code cloud below – largest codes indicate highest frequency. ACKNOWLEDGEMENTS and CONTACT SAMPLE and METHODOLOGY Settings Activities Others Individual I have never seen another kid before with FXS, so I don’t know what to expect. I don’t know if all of these therapies are going to help.  I hope there will be something to help with the hand flapping, it is too much (tearful). Family Meanings Family Hopes Anything to Help Research Rigor Placebo vs. Medication Humor Altruism – Greater Good Child’s Special Needs Cure Tearful / Distressed I call him the son of destruction. Oh man! And then he is rearranging the store! Next thing I know he has cottage cheese & other stuff in his arms yelling, “Mine! Mine!” – soooo I end up paying for cottage cheese! (laughing). AND 

Family Meanings, Contexts and Hopes Within a Clinical Trial

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Family Meanings, Contexts and Hopes Within a Clinical Trial

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