Third Issue of the Series:
Psychosocial and Family Functioning Among Latino Youth with Spina Bifida
Journal of Pediatric Psychology, Volume 43, Issue 2
Jaclyn Lennon Papadakis, MA, is a doctoral candidate in the clinical psychology PhD program at Loyola University Chicago, pursuing subspecialty training in child clinical psychology. She is currently completing her predoctoral clinical psychology internship at Ann & Robert H. Lurie Children’s Hospital of Chicago. Following completion of her degree, she will begin a postdoctoral fellowship in diabetes clinical psychology and research at Ann & Robert H. Lurie Children’s Hospital of Chicago. Her research interests include individual and family adjustment to pediatric chronic illness, with a focus on resilience among families of diverse backgrounds.
Laura Acevedo, BS, is pursuing an Accelerated Bachelor of Science in Nursing at Marian University, Nashville. Her research interests in spina bifida and the Latino population has greatly influenced her current desire to work in a medical setting and play an active role in the lives of children and families living with chronic illnesses.
Sonia Ramirez, BS, is pursuing a master’s degree in Biomedical Sciences at the University of Northern Colorado. Her research interest in the psychosocial development and medical adherence of youth with spina bifida continue to inspire her as she pursues a career in medicine.
Alexa Stern, MA, is a 3rd-year graduate student in the clinical psychology PhD program at Loyola University Chicago. Her current research interests include neuropsychological functioning and self-management outcomes among youth with spina bifida.
Colleen Driscoll, MA, is a 4th-year graduate student in the clinical psychology PhD program at Loyola University Chicago. Her current research focuses on the influence of parent factors on youth outcomes in families of youth with spina bifida.
Dr. Grayson Holmbeck received his PhD from Virginia Commonwealth University and is Professor of Clinical Psychology and Director of Clinical Training in the Department of Psychology at Loyola University Chicago. His research interests include the following: adaptation to physical disabilities and chronic illness during adolescence, developmental psychopathology of adolescence, family relationships during early and late adolescence, and statistical applications in psychology. He is currently a PI on grants from the National Institutes of Health and Kiwanis Neuroscience Research Foundation for studies of youth and young adults with spina bifida.
What led you to this particular topic? (e.g., why did you want to write about diversity training in pediatric psychology?)
I have long had an interest in studying health disparities among youth with chronic illnesses. Early on in my research on families of youth with spina bifida, I learned that the majority of research to date had been conducted among Caucasian families, despite the fact that prevalence rates of spina bifida are highest among Latino families. I chose to study Latino youth with spina bifida as my master’s thesis topic because I felt it was important and necessary in order to better understand whether what we have learned from existing research on youth with spina bifida can be generalized to other racial/ethnic groups. In addition, I was inspired by and hoping to build upon work done previously in my lab (led by Dr. Grayson Holmbeck and published by Dr. Katie Devine) on Latino parents of youth with spina bifida (i.e., Devine, Holmbeck, Gayes, & Purnell, 2012). And fortunately, my co-authors were as equally excited about this topic
What do you think are the main points that you would want psychologists who provide clinical care to patients with spina bifida to “take-away” from this paper?
In many cases, youth with spina bifida may only be seen by a pediatric psychologist after a concern is identified by a different medical provider or expressed by a parent. I think this can sometimes set clinicians up to overly (or only) focus on concerns. I would like pediatric psychologists working with all youth with spina bifida to be reminded of the importance of assessing for and identifying the strengths that all families possess, and to consider how those strengths can be used to address concerns. Further, I hope this paper serves as a reminder for us to always be challenging the assumptions we sometimes make about families based on their backgrounds—many of the hypotheses in my study were not supported, and I think that is a good thing!
What are the main points you want pediatric psychologists who conduct research with patients with spina bifida to "take away" from this paper?
I hope this paper is a reminder of the importance of recruiting and retaining participants that represent all dimensions of diversity (e.g., race/ethnicity, disabilities, religion/spirituality, socioeconomic status/class, sexual orientation, indigenous heritage, national origin, gender), and asking research questions to tease apart how the experiences of individuals with spina bifida vary when considering these multiple aspects of diversity. For example, in this study, we found ethnic group differences varied significantly based on whether we controlled for other factors, such as socioeconomic status.
What more do you think needs to be understood in order to make a difference in this area (i.e., diversity training)?
A limitation of this study was that it assumed the Latino subsample to be homogeneous, while in reality there are within group differences in terms of country of origin, acculturation, cultural practices, and more. I think all research on Latino individuals, including youth with spina bifida, should be sensitive to these within group differences. Further, I think more research is needed on health outcomes among Latino youth with spina bifida to better understand the degree to which they may be resilient or at risk for potential adverse health outcomes.
Based on your experiences, what ideas do you have for engaging pediatric psychology in diversity-related research?
In an ideal world, all research would be inherently “diversity-related.” I think one way to engage students in diversity-related research is to encourage them to first identify what topic(s) the student is most passionate about studying, in general, and then ask how diversity plays a role (because it always does!).
Tell us a little bit about what you, or your institution, are doing now that relates to this topic.
I am currently an intern at Ann & Robert H. Lurie Children’s Hospital of Chicago, where I have had the pleasure of working with a very diverse population of kids our hospital serves, including Latino youth with and without chronic health conditions. I feel I have become more culturally competent in working with Latino youth, but recognize cultural competency is a continual process! As I look forward to transitioning to a postdoctoral fellowship where I will be able to integrate my research and clinical interests through working with youth with diabetes, I am excited about continuing to incorporate a focus on diversity!
I have long had an interest in studying health disparities among youth with chronic illnesses. Early on in my research on families of youth with spina bifida, I learned that the majority of research to date had been conducted among Caucasian families, despite the fact that prevalence rates of spina bifida are highest among Latino families. I chose to study Latino youth with spina bifida as my master’s thesis topic because I felt it was important and necessary in order to better understand whether what we have learned from existing research on youth with spina bifida can be generalized to other racial/ethnic groups. In addition, I was inspired by and hoping to build upon work done previously in my lab (led by Dr. Grayson Holmbeck and published by Dr. Katie Devine) on Latino parents of youth with spina bifida (i.e., Devine, Holmbeck, Gayes, & Purnell, 2012). And fortunately, my co-authors were as equally excited about this topic
What do you think are the main points that you would want psychologists who provide clinical care to patients with spina bifida to “take-away” from this paper?
In many cases, youth with spina bifida may only be seen by a pediatric psychologist after a concern is identified by a different medical provider or expressed by a parent. I think this can sometimes set clinicians up to overly (or only) focus on concerns. I would like pediatric psychologists working with all youth with spina bifida to be reminded of the importance of assessing for and identifying the strengths that all families possess, and to consider how those strengths can be used to address concerns. Further, I hope this paper serves as a reminder for us to always be challenging the assumptions we sometimes make about families based on their backgrounds—many of the hypotheses in my study were not supported, and I think that is a good thing!
What are the main points you want pediatric psychologists who conduct research with patients with spina bifida to "take away" from this paper?
I hope this paper is a reminder of the importance of recruiting and retaining participants that represent all dimensions of diversity (e.g., race/ethnicity, disabilities, religion/spirituality, socioeconomic status/class, sexual orientation, indigenous heritage, national origin, gender), and asking research questions to tease apart how the experiences of individuals with spina bifida vary when considering these multiple aspects of diversity. For example, in this study, we found ethnic group differences varied significantly based on whether we controlled for other factors, such as socioeconomic status.
What more do you think needs to be understood in order to make a difference in this area (i.e., diversity training)?
A limitation of this study was that it assumed the Latino subsample to be homogeneous, while in reality there are within group differences in terms of country of origin, acculturation, cultural practices, and more. I think all research on Latino individuals, including youth with spina bifida, should be sensitive to these within group differences. Further, I think more research is needed on health outcomes among Latino youth with spina bifida to better understand the degree to which they may be resilient or at risk for potential adverse health outcomes.
Based on your experiences, what ideas do you have for engaging pediatric psychology in diversity-related research?
In an ideal world, all research would be inherently “diversity-related.” I think one way to engage students in diversity-related research is to encourage them to first identify what topic(s) the student is most passionate about studying, in general, and then ask how diversity plays a role (because it always does!).
Tell us a little bit about what you, or your institution, are doing now that relates to this topic.
I am currently an intern at Ann & Robert H. Lurie Children’s Hospital of Chicago, where I have had the pleasure of working with a very diverse population of kids our hospital serves, including Latino youth with and without chronic health conditions. I feel I have become more culturally competent in working with Latino youth, but recognize cultural competency is a continual process! As I look forward to transitioning to a postdoctoral fellowship where I will be able to integrate my research and clinical interests through working with youth with diabetes, I am excited about continuing to incorporate a focus on diversity!