Sibling Snapshots: Living with Youth who have Autism or Down syndrome

  • barbara mandleco Brigham Young University
  • Jessica Rosemann Primary Children’s Medical Center; Salt Lake City, UT
  • Aimee Palicharla Beth Israel Deaconess Medical Center; Boston MA
  • Tammy Rampton
  • Tina Dyches McKay School of Education; Brigham Young University; Provo, UT
  • Donna Freeborn College of Nursing, Brigham Young University; Provo, UT
DOI: https://doi.org/10.36013/ijipem.v2i0.17
Keywords: Autism, Autism Spectrum Disorder, Down syndrome, Siblings, Photography, Photo elicitation

Abstract

This study used photography to capture important symbols in the lives of 14 siblings of 13 youth with autism (ASD) and 16 siblings of 15 youth with Down syndrome (DS) and then determine if there were differences in the photographs taken according to the type of developmental disability, age, and gender of the sibling. Analysis revealed two types of photographs: people, including family members and non-family, and non-people, including objects, animals, and buildings/scenery. Siblings of youth with DS took a higher percentage of photographs of people and a higher percentage of photographs of family members than siblings of youth with ASD.  There were also differences according to age and gender in the people/non people and within family photographs. The 7-9 year olds took a higher percentage of snapshots of typically developing siblings and him/herself whereas the 10- 12 year olds and the 13-16 year olds took a higher percentage of photographs of the youth with the disability than the younger age group. Sisters took a higher proportion of people photographs than brothers; whereas brothers took a higher proportion of family photographs than sisters. Indeed, results validate the importance of gathering data in an open-ended manner directly from young people, confirm the use of photography as a method of facilitating communication with young people about important symbols in their lives, and indicate there are differences in the percentage of photographs taken of people/non people and family/non family according to disability, age and gender of siblings.

Author Biographies

barbara mandleco, Brigham Young University
Barbara Mandleco is a Professor Emerita and previous associate dean of research and coordinator of the baccalaureate program at the Brigham Young University College of Nursing, Provo Utah. Her research interests include families adapting to a child with a chronic condition and developing innovative methods of involving undergraduate students in faculty research. 
Jessica Rosemann, Primary Children’s Medical Center; Salt Lake City, UT
Ms. Rosemann graduated in April of 2005 from Brigham Young University College of Nursing and currently works part-time as a registered nurse at Primary Children's Medical Center in Salt Lake City, Utah. She is PALS and BLS certified and also teaches neurotrauma classes to new graduates. 
Aimee Palicharla, Beth Israel Deaconess Medical Center; Boston MA
Ms. Palicharla graduated in December of 2005 from Brigham Young University College of Nursing and currently works as a registered nurse at Beth Israel Deaconess Medical Center in Boston, MA. Her research and clinical interests include: the impacts of socioeconomic status on the HIV/AIDS population in Sub-Saharan Africa; clinical side effects of Interleukin-2 therapy on patients with Metastatic Melanoma and Metastatic Renal Cell Carcinoma, and public health issues related to immunology, infectious diseases, and women's and children's health.  
Tammy Rampton
Ms. Rampton graduated in December of 2005 from Brigham Young University College of Nursing and currently is a full time mother. In the past, she worked as a registered on a physical rehabilitation floor at Alaska Regional Hospital in Anchorage, Alaska.  
Tina Dyches, McKay School of Education; Brigham Young University; Provo, UT
Tina Taylor Dyches, Ed.D. is an associate dean and professor at the McKay School of Education at Brigham Young University. Her work is focused on adaptation of families raising children with disabilities or chronic conditions and children's literature that includes characters with disabilities.  
Donna Freeborn, College of Nursing, Brigham Young University; Provo, UT
Donna Freeborn is an Associate Professor and Coordinator of the Family Nurse Practitioner Program in the College of Nursing at Brigham Young University. Her experience as a Family Nurse Practitioner has provided her with clinical expertise with disabilities and chronic conditions including Down syndrome, cerebral palsy, diabetes, and others. 
Published
2015-08-12
How to Cite
mandleco, barbara, Rosemann, J., Palicharla, A., Rampton, T., Dyches, T., & Freeborn, D. (2015). Sibling Snapshots: Living with Youth who have Autism or Down syndrome. International Journal of Integrative Pediatrics and Environmental Medicine, 2, 13-30. https://doi.org/10.36013/ijipem.v2i0.17
Issue
Vol 2 (2015)
Section
Articles

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