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Research Study - Respite And Well-Being Among Families With Children With Autism

Principle Researcher: Alyssa SooHoo, MAT, Autism on the Seas Foundation Board Member

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What and Why
Autism Spectrum Disorder (ASD) has become increasingly prevalent over the past 15 years, which has baffled researchers and frustrated parents.  Parents of children with ASD have been known to experience higher levels of stress than parents of children with any other conditions. Past research supports that families of children with developmental disabilities participate in less family interactions and recreational activities than families who do not have a child with ASD. One known stress reliever for all people is taking vacations.

Results of numerous studies reveal that family vacations contribute positively to family bonding, communication and solidarity (Lehto, 2009). Studies have also shown that families with special needs are limited in these vacation opportunities (Amet, 2013), thus lessening the amount of recreational activities and family interactions. This increases the amount of stress among these families with special needs.  Not only do fewer experiences exist, but there are also barriers influencing the quality of these vacations.  Amet’s 2013 study categorized these barriers into five areas:

  • 1 - Child’s disability, particularly with regard to behavior,
  • 2 - Lack of suitable holiday structures,
  • 3 - Financial limitation of the family,
  • 4 - Lack of empathy from surrounding communities towards the disabled child and his or her family, and
  • 5 - General state of exhaustion of the parents (Amet, 2013). 

In response to such findings, the organization Autism on the Seas (AotS) provides services to accommodate families with children with ASD and other special needs.  This study aims to investigate the effect of the vacation opportunities provided to families who cruise with AotS with respect to family quality of life, family solidarity, caregiver social network, caregiver self-efficacy, and caregiver stress.  All measures involved have been shown to have both high validity and high reliability when utilized in past research.  When individual factors are identified, more effective supports can then be affirmed and provided to caregivers in need.  Providing effective stress management supports for caregivers of children with ASD may lead to a decrease in stress and thus a healthier life both physically and psychologically for these individuals.  

The Foundation will solicit volunteer researchers from a higher education institution to conduct the study.   Specifically, Dr. Rachel Potter, from Mary Baldwin College, and Alyssa SooHoo, of Columbia University, will be the study's primary investigators, with Ms. SooHoo as Principle Researcher.

The study has been approved by the IRB Committee at Columbia University.  The first round of surveys are expected to go out to both new cruisers and experienced cruisers by the Fall, 2016.  Autism on the Seas will be recruiting participants to complete surveys.   Experienced cruisers will be recruited as a separate research group to analyze correlations between variables whereas new cruisers' surveys will be used to correlate variables with respect to before and after their vacation experience.   The study is estimated to run for approximately two years.

Employee Resource funding for this activity will not be required as volunteers will be used, and no other products or services will be required.  Columbia University's online survey system will be used to collect responses at no cost to the Foundation.

Autism Spectrum News - Effects of Respite Vacation Experience on Families with Special Needs

Sarafino, 2011
http://www.sciencedirect.com/science/article/pii/S0160738309000553  (Lehto, 2009). 

http://omicsgroup.org/journals/holiday-what-holiday-vacation-experiences-of-children-with-autism-and-their-families-2165-7890.1000123.php?aid=21234  (Amet, 2013)