Development and Testing of an Informal PA Training Program (R-8) Jessica Dashner, OTD OTR/L Irene Hsu, OTD/S David B. Gray, PhD

Background Informal personal assistants (IPAs), who are typically the family members and friends of people with disabilities (PWD), constantly face a variety of challenges in providing assistance. Numerous community-based services and support programs are available to provide personal assistance education and training. These services and programs have received mixed reviews. A significant proportion of IPAs continue to express low levels of self-efficacy and high levels of stress and anxiety in providing care, particularly when the training is not delivered within the context of their daily lives.

Objectives 1. Design content for an informal PA training program to assist informal care providers and recipients in improving consumers’ experiences in community living. 2. Develop informal PA training program using an iterative process to test and refine the training. 3. Pilot and determine the effectiveness of the informal PA training program.

Project Overview Phase I- Design informal PA training program Focus groups/ Key informant interviews consumers and providers Phase II- Iteratively develop and test training 2 Iterations with 10 dyads Phase III- Pilot test the training program and assess the impact and effectiveness 40 dyads Individuals newly injured or at risk for institutionalization

Progress to Date Phase I Assembled the draft of the training program Used Moodle to organize the information Reviewed by…. 4 Consumers/Recipients (PWD) 4 Informal PA Providers (IPA)

Procedures Recruited individuals over age 18 who live in the community and receive/provide informal PA Needed to receive/provide assistance with at least 2 activities: Dressing, Bathing, Bladder Care, Bowel Care, Transfers Sent link to Moodle online training Interviewed Face to Face as a dyad Interviews lasted 25-45 minutes Recorded and Transcribed Rank order of topics

Draft Training Program- Content 9 topics/modules Personal Care Health and Wellness Secondary Conditions Physical Disabilities and Conditions Body Mechanics and Transfers Recognizing Abuse and Neglect Psychological and Emotional Conditions Effective Communication Assistive Technology

Example- Body Mechanics and Transfers Verbal instruction/handout of techniques Video Sliding Board and Stand Pivot (http://www.youtube.com/watch?v=S1qyNOddaY4) Trial with equipment Transfer bench, Hoyer lift, Gait belt etc. Demonstrate skills with immediate feedback

Overall Impressions Convenient access to information PWD: “I like the online, take it at your pace.” PWD: “Everyone learns differently, and if they can do it at their own pace, they are going to do much better with it.” IPA: “If there is a certain thing that I am struggling with at home, I can pull it up very easily for a reminder or maybe review something again if I wasn’t 100% sure.” Very thorough and informative PWD: “It answers a whole lot of questions.” PWD: “It covers a very wide gamut of people with disabilities and potential caregivers, and it also gives a common space for there to be communication back and forth between caregiver and consumer so that they are speaking the same language.” IPA: “It touched on everything. There were no gaps.” IPA: “Good 101.” Images and videos make learning easier PWD: “You definitely have to have entertainment value to this. You are not just lecturing on do this and don’t do that.” PWD: “Most people are visual learners, and having a visual representation of this, especially when you have to go exercise it fairly soon thereafter. Videos are largely instructive too when you can see what’s being verbalized in action. It’s helpful.” IPA: “Certainly the videos are more helpful than just reading.”

Rank Order of Module Topics from Most to Least Important

Lessons Learned-Suggestions for Improvement Additional topics to include in the training program (1) Driving adaptations and transportation options, (2) travel accommodations, and (3) safety planning and emergency procedures Training delivery method Need to take user’s computer literacy into consideration Have alternative delivery methods (e.g., in-person class, handouts or DVD) available Organization of the modules and content Divide the content into segments (e.g., type of disability or level of assistance required) Where to go for additional help or resources? Message center (e.g., live chat or discussion thread) to get answers to questions

Next Steps Phase II-Iteratively develop and test training 2 Iterations with 10 dyads Continue to explore option of online format Original intent was to deliver training face to face but for dissemination the online training module has benefits Refine and further develop measures to determine effectiveness of training (Phase III)

Implications For consumers For practitioners and advocates For policymakers For researchers

Acknowledgements Participants- Recipients/Providers Irene Hsu, OTD/S Sarah Zaas, MSOT/S Jessy Garcia, OTD/S David B Gray, PhD The contents of this presentation were developed under a grant from the Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR) grant number H133B110006. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government.

Contact Information Jessica Dashner, OTD OTR/L Washington University School of Medicine Program in Occupational Therapy Disability And Community Participation Research Office (DACPRO) 5232 Oakland Ave. St. Louis, MO 63110 dashnerj@wusm.wustl.edu 314-932-1018