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Development and Testing of an Informal Personal Assistance Training Program (R-8)

Creating a Training Program for Informal Personal Assistants 

- Why It Matters: Filling Important Gaps

- The Training: Meeting Most Important Needs

- What Our Participants Said

- Next Steps

Why It Matters: Filling Important Gaps

If you’re a person with a disability, you may need some help with daily activities, like cooking, bathing or dressing. A paid personal assistant (PA) can provide this formal support, which makes it possible to live in the community.

But what happens if the agency that pays this formal PA limits the services and number of hours they can provide? This often happens, and when it does, most people with disabilities turn to friends and family members to fill the gap. We call these unpaid helpers “informal” PAs.

Informal PAs are usually highly motivated and personally invested in helping the person with a disability (also called a consumer). But they express doubts about their skills and high levels of stress and anxiety about providing care.

In this project, we developed a training that gives informal PAs the same kind of information and skills that formal PAs are required to have. With this new knowledge, informal PAs can safely assist consumers in their daily lives. They can help consumers avoid disruptions in community living, like going to the hospital. Plus, they may help consumers increase their community participation.

Screenshot from a video titled "Slide Board and Stand Pivot" in which a physical therapist demonstrates how to assist a consumer's transfer with a slide board.

In this video, a physical therapist demonstrates how to assist a consumer’s transfer with a slide board.

The Training: Meeting Most Important Needs

This training for informal PAs is based on a training we developed previously for formal, paid PAs. Most of the skills that an informal PA needs are the same. Before we created the training, we also asked consumers which topics were most important to them when working with a friend or family member. We used their responses to select 11 topics for the training:

  • 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
  • Safety and Emergency Planning
  • Transportation and Travel

Who We Train

In this research project, we are training people in pairs (also called dyads) – the consumer and the informal PA. It’s important for consumers to learn new skills, too, so they can direct their own care in partnership with their PA.

We are training a total of 50 pairs (100 people) to gain information on how well the training works for both consumers and informal PAs. In this test of the training, we are focusing on people who are newly injured or at risk for institutionalization. That way we can analyze how the training affects their community living and participation. 

How We Train

The training is conducted in small groups including consumers and their informal PAs. For each topic or “module,” the trainer presents information about the subject, gives examples, and shows videos. Training participants practice the new skills in class, and also take quizzes to determine what they know before and after the training.

Here’s an example of what one training module includes:

Body Mechanics and Transfers

Screenshot from the “Slide Board and Stand Pivot” training video teaches informal personal assistants how to safely assist a consumer who uses a wheelchair. Words on the screen say "Back Straight, Bottom Out, Knees Bent, Firm Footing"

The “Slide Board and Stand Pivot” training video teaches informal personal assistants how to safely assist a consumer who uses a wheelchair.

The course materials are also online so people can review them at home. The example below shows the Effective Communication module. 

Screenshot of the Clear Communication module from online training.

What Our Participants Said

“If there is a certain thing that I am struggling with at home, I can pull up the online course very easily for a reminder or maybe review something again if I wasn’t 100% sure.”  - Informal Personal Assistant

 “The training covers a very wide gamut of people with disabilities and potential caregivers. 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.”  - Participant with a Disability

Next Steps

Our goal is to empower people with disabilities to participate in their communities. We will evaluate how effective this training is to make any needed revisions in the course. Then we can offer the training to people around the United States – consumers and their friends and family –  who can benefit from gaining specialized skills and knowledge to provide personal assistance. 

More information about the design of the research: 
Methods, Sample, Measurement, Implementation and Data Collection, Data Analysis

Principal Investigator: Jessica Dashner, OTD, OTR/L

Updated December 2016

COVID-19 Vaccine information in plain language: https://t.co/UXHOj9w1HE

Community Partner Success Story

Katie Rodriguez Banister participated in the research study. "The neat thing about this project, it starts a conversation about personal care attendants, especially with newly injured people," she said. Read more about her experience here.

Development and Testing of an Informal PA Training Program (R8) created an informal (unpaid) personal assistant training program to improve consumers’ experiences in community living.

Principal Investigator: Jessica Dashner, OTD, OTR/L 

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