1. Health Issues for Latinos with Spina Bifida At the completion of the presentation the audience will be able to: 1. Identify the value of qualitative research. 2.Appreciate the complexity involved in managing bowel and bladder issues in every day life. 3.Understand the importance of listening to multiple perspectives when conducting research or engaging in practice.

2. Division of Occupational Science and Occupational Therapy Herman Ostrow School of Dentistry Child Development & Rehabilitation Center Funded by: The Effectiveness of Bowel and Bladder Treatments in Children with Spina Bifida

3. The West Coast Spina Bifida Research Consortium Washington-Seattle Seattle Children’s Hospital University of Washington School of Medicine  Brian Dudgeon, PhD, OTR Associate Professor, Rehabilitation Medicine Division of Occupational Therapy  Lynne C Kramer, MD MAJ, MC, USA Developmental Pediatrics, Landstuhl Regional Medical Center  William O. Walker, Jr., MD Professor, Pediatrics Chief, Division of Developmental Medicine Department of Pediatrics Oregon-Portland Child Development and Rehabilitation Center Oregon Health & Science University  Elizabeth Adams, PhD, RD Assistant Professor, Department of Public Health and Preventive Medicine  Kurt A. Freeman, PhD Associate Professor of Pediatrics and Psychiatry  Mark J. Merkens, MD Associate Professor Division of Developmental Pediatrics Director, Spina Bifida Program Oregon-Portland Child Development and Rehabilitation Center Oregon Health & Science University  Elizabeth Adams, PhD, RD Assistant Professor, Department of Public Health and Preventive Medicine  Kurt A. Freeman, PhD Associate Professor of Pediatrics and Psychiatry  Mark J. Merkens, MD Associate Professor Division of Developmental Pediatrics Director, Spina Bifida Program California- Los Angeles Childrens Hospital Los Angeles University of Southern California  Robert A. Jacobs, M.D., MPH Head, Division of General Pediatrics Director, USC UCEDD Professor of Pediatrics, Keck School of Medicine  Kristy Macias Project Assistant, USC UCEDD  Stacey Mizokawa, PhD Licensed Psychologist, USC UCEDD  Ann Neville- Jan, PhD, OTR/L, FAOTA Associate Chair – Faculty and Curriculum Associate Professor, Division of Occupational Science and Occupational Therapy  Kathryn Smith, RN, MN Associate Director for Administration, USC UCEDD Assistant Professor of Clinical Pediatrics Keck School of Medicine California- Los Angeles Childrens Hospital Los Angeles University of Southern California  Robert A. Jacobs, M.D., MPH Head, Division of General Pediatrics Director, USC UCEDD Professor of Pediatrics, Keck School of Medicine  Kristy Macias Project Assistant, USC UCEDD  Stacey Mizokawa, PhD Licensed Psychologist, USC UCEDD  Ann Neville- Jan, PhD, OTR/L, FAOTA Associate Chair – Faculty and Curriculum Associate Professor, Division of Occupational Science and Occupational Therapy  Kathryn Smith, RN, MN Associate Director for Administration, USC UCEDD Assistant Professor of Clinical Pediatrics Keck School of Medicine Child Development and Rehabilitation Center

4. BSF Approach APE Approach International Classification of Functioning Disability and Health

5. A QUALITATIVE STUDY OF PRACTITIONER, CAREGIVER, AND CHILD PERCEPTIONS OF INCONTINENCE SECONDARY TO SPINA BIFIDA Authors: Brian J. Dudgeon, Kurt A. Freeman, Stacey Mizokawa, Ann M. Neville-Jan, Kathryn Smith (Presenter) & The West Coast Spina Bifida Research Consortium

6. Question: How do children, their caregivers, and the practitioners who work with them perceive the effectiveness of bowel and bladder treatments? Overall Qualitative Study Methods: Children and caregivers were a convenience sample drawn from clinic rosters at spina bifida clinics Data were collected through focus groups & interviews of children ages 5-12, their caregivers and practitioners. Focus groups and interviews were recorded and transcribed. Data Analysis: Conducted a thematic analysis. 4 researchers individually read transcripts and coded data for themes and subthemes. Through weekly phone conference calls themes were reevaluated. A research assistant took notes during the phone call. Researchers identified themes and subthemes across transcripts.

7. Attempts to understand an experience Aids in understanding motivations and emotions Values the multiple ways in which an experience can be understood Helps to understand the “wholeness” of an experience Focus on “how” and “why” questions Value of Qualitative Research

8. Practitioner Perspectives Two focus groups were conducted with practitioners who worked in a spina bifida clinic with primarily Hispanic/Latino families. Practitioners represented were dieticians, nurses, occupational therapists, physical therapists, physicians, and social workers.

9. Practitioner Perspectives Themes relevant to todays topic  Parenting philosophy concerning independence/dependence  Practitioner – parent relationships  Environmental factors

10. Practitioners Perspectives on Parenting

11. Practitioners Perspective on Relationships with Parents

12. Practitioners Perspective on Environmental and Social Barriers

13. Questions for Discussion  How might environmental and social systems impact success with bowel and bladder programs?  How do families view the medical system and relationships with practitioners? How might this impact success with bowel and bladder programs?  How can parenting philosophies of practitioners and families impact the success of bowel and bladder programs?  How can a clinic ensure “cultural competence.”

14. Final Thoughts  Culture matters in clinical encounters.  Practitioners need to be reflective about their biases and how these might influence encounters with patients.  Professional training programs need to amend current thinking about “cultural competence” and teach how to understand the illness experience from the patient and family perspective.