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


A key element in design research is working to understand and incorporate contextual variables in design and development. We will use two specific methods to develop a richer understanding of relevant contextual variables.

First, we will use a participatory design process, where we will adapt a previously validated training program for paid PA providers for use by informal caregivers, using experiences and examples from authentic settings and practical situation.

Second, we will use an iterative process to test, revise, and refine the PA training curriculum and develop appropriate fidelity measures to enable effective implementation of the finalized product; this iterative process is the salient principle in design research methodology.

Second, design researchers recommend the use of methodologies and we will involve CETs to develop educational topics. Focus groups will be involved in developing training content and the pilot test of the intervention. Additionally, several members of the research laboratory have severe disabling conditions and are sensitive to community participation barriers and the provision of personal assistance services. We expect to complete both Phase 1 and 2 of the study within Year 1 of the project.

Phase I – Design Informal Personal Assistant Training

The first step in this project will be to design the Informal Personal Assistant training.  We will develop the content of the training program based upon existing research on the provision of informal PAS, the content we use in a current training program for paid PAS consumers and providers and input from focus group participants. We will also incorporate findings from Project R-6, investigating barriers and experiences of individuals with disabilities, to determine appropriate settings, barriers for which PAS providers should be trained to provide support, and other pertinent findings for this project. The new training curriculum will focus on the unique issues associated with the provision of informal personal assistance.

The exact configuration of the training may vary based on the input of the CET and results of our initial focus groups.  We present the following content and format for the training based on our paid PAS provider training to provide more detail about our vision for the training, with the caveat that these details will likely change based on our Phase 1 activities.  Currently, the training consists of sessions lasting approximately two hours and including a variety of teaching methods such as in-person lecture/demonstration, informal discussions, video demonstration, and small group breakout sessions. The content of the current sessions includes the following: introductions, skills and knowledge pre- and post-tests, effective communication techniques, social networking, assisting with personal care, health and secondary conditions, community participation and assessing accessibility, interactive task-specific learning activities,  a question and answer session, and conclusions. The interactive task-specific learning activities will consist of modules on specific topics such as assistive devices and transfer training.

Additionally, during one of the training sessions, participants will be trained to administer the Community Health Environment Checklist (CHEC), a tool designed to assess community buildings to determine their accessibility for individuals with mobility, vision or hearing impairments. The CHECs can be scored and the results can be displayed on a Google map to inform individuals of businesses that are accessible and able to be visited.  This activity will be used to increase community participation by informing individuals of the accessibility of community sites.

Phase 1 Sample

The focus group will include individuals over age 18 who live in a community setting and have been receiving or providing informal PAS for at least a year.  We will recruit these participants from a database of previous research participants, maintained by the Disability and Community Participation Research Laboratory at Washington University, and staff and participants of Paraquad Center for Independent Living. A similar sample was utilized during development of the formal (paid) PAS training intervention conducted under the RRTC/MCIL. We will convene 2 focus groups to provide input on the content of the training curriculum.Each panel will include 10 consumers and 10 providers. To test the training materials, we will conduct a development phase test with 20 consumers and 20 providers, involving 10 dyads each in a two-step iterative process. 

Phase 1 Data Collection

Detailed focus group scripts will be developed and approved by the Washington University IRB.  The script will be structured and will contain prepared questions to pose to the focus group members.  We will create transcripts from voice recordings taken during the focus groups. 

Phase 1 Data Analysis

For phase 1 qualitative data will be transcribed and thematic analysis will be conducted on the transcripts to identify all major themes. We will use a constant comparison analysis to compare successive thematic categories across transcripts.  We will use peer debriefing following the focus groups, as well as member checking (sending a brief summary of major themes to the focus group participants) to assess dependability. Because of the small amount of the qualitative data, we will not use computer assisted qualitative software for this project. 

Phase 2 – Iteratively Develop and Test the Informal Personal Assistant Training

In Phase 2, we will present the Informal PA Training in two iterations.  After each iteration, we will revise the content, format, and fidelity implementation measures to assure effective completion of the training when taken to scale.  Following this second iteration, we will finalize both the curriculum and the fidelity measures. 

The field test of the training will be offered through a total of three two-hour, weekly training sessions at the Disability and Community Participation Research Office (DACPRO).  Instructors will include occupational therapists, graduate students, and experienced informal consumers and personal assistants. 

Phase 2 Sample

We will recruit one set of 10 dyads to present the three-week sequence of training for each of the iterations of the development.  Each dyad will be comprised of one individual over age 18 who lives in a community setting, and his/her informal provider of at least a year.  

Phase 2 Measurement

For Phase 2, Skills and Knowledge, pre- and post- tests will be developed and administered in person immediately before and after the training sessions to determine the level of knowledge acquisition and learning that occurs during the session.  We will also draw from additional surveys that we developed and tested for use with the groups of consumers and providers enrolled in the Consumer Directed Personal Attendant Services (CDPAS) program at Paraquad.  The measures contain questions to obtain quantitative and qualitative data to determine the impact of the training. 

We will administer a unique set of measures to both the consumers and providers.  All participants in Phase 2 and 3 will complete the Skills and Knowledge Quiz the same day as the initial training session (except that the wait-list group in Phase 3 will complete the pre-test measures at the time of their random assignment). Major dependent variables to be determined in this investigation are included in the Table below. 

We will collect data from consumers using the Characteristics of Respondents (CORE) and the PAS Consumer Survey. The CORE is a self-report survey that measures demographics that yields the following information: diagnosis, secondary health conditions, general health status, healthcare use social benefits, mobility device/assistive technology, participation in exercise, personal assistance, and transportation services. The consumer participants will fill out the CORE during the initial and 3 month follow up telephone interviews.

The PAS Consumer Survey was developed to measure the quality of care received from the personal assistant as perceived by the consumer. This survey will be filled out by the consumer both pre and post-intervention. Psychometric properties have yet to be determined; we will conduct analyses during the Pilot (Phase 3) to analyze validity and reliability. The PAS Consumer Survey incorporates questions from the following measures: Hope Scale, Participation Survey-General (PARTS-G), Survey of Participation and Receptivity in Communities (SPARC).

We will collect data from providers using the Personal Assistant Provider Survey. This tool was developed to address the needs of personal assistants, how satisfied they are with the care they provide, and their level of interest in participating in the training program intervention. The PA Provider Survey will be filled out by personal assistants at baseline and 3 months post-intervention. This tool incorporates questions from the following measures: PVA Spouse Survey, Hope Scale, and Exemplary Care Scale (ECS).

Additionally, we will collect information from both the consumers and providers using the Skills and Knowledge Quiz. This tool was developed to assess the change in the participants’ knowledge and skills with regard to provision of care before and after the intervention. Consumers and personal assistants will take the quiz immediately pre- and post-intervention. The quiz includes 10 multiple-choice questions that cover the content discussed during the training program intervention.

Finally, we will utilize the Fidelity measure developed during Phases 1 and 2 to document successful implementation of the measure as well as acquisition of the skills by the participants.  The measure will consist of an observation checklist to determine whether critical components of the training occurred and the degree of engagement by participants in the training activities. 

Table: Major Dependent Variables
AssessmentsContextual and Outcome Variables
DemographicsAge, race, gender, income, education , benefits received, etc.
 Health StatusSecondary conditions, ER & physician visits, use of healthcare resources, choice, satisfaction
Consumer Survey 
Quality of careAttributes, satisfaction, number of injuries
 BathingTime, control over technique, satisfaction, safety
    DressingTime, control over technique, satisfaction, safety
   ToiletingTime, control over technique, satisfaction, safety
 TransfersSafety, control over technique, satisfaction
     CommunitySatisfaction, safety, frequency
     10 sitesFrequency attended, personal assistant use, location visited
PA Provider Survey 
Provision of careAttributes, satisfaction, level of interest in training program, stress
PVA SpouseAttributes and satisfaction
Hope ScalePerceived ability to plan solutions to problems
Agency/pathwaysAttributes, extent to which applied
ProvisionFrequency (of special attention and niceties)
  RespectFrequency (consideration of opinions, wishes, viewpoints, self-esteem, and desire for autonomy)
Skills/Knowledge Quiz 
Skills and knowledgeAttributes
Social Networking SkillsTime outside home, time with personal assistant outside house, use of support, number of sites per month, time at site, importance, control, choice, satisfaction use of internet and social media (i.e. Facebook)
CommunicationPrimary mode of communication satisfaction
RelationshipLevel of honesty, ability to resolve conflict, satisfaction

Phase 3 – Pilot the Informal Personal Assistant Training to Assess Impact and Effectiveness of the Training

In Phase 3, Pilot, we will use a wait-list methodology to deliver two cycles of the training intervention with the intervention group, followed by post-test feedback at the last session.  We will randomly assign half of the sample to a wait-list as a control group.  The waiting list group will receive the pre-test measures at the time of their assignment to the group, while the intervention group will receive the pre-test measures at the first session of the training.  One month after the first training, we will offer the training to the wait-list group. 

Phase 3 Sample

The pilot test will involve intervention and control groups which will each include 40 consumers and 40 providers of informal PAS.  The consumers will include individuals over age 18, who live in a community setting (or have a desire to live in a community setting), have a newly acquired or progressing mobility or sensory disability and individuals at risk for institutionalization.  The informal providers will be over age 18 and will have a willingness to provide unpaid assistance to one of the consumer participants. Participant dyads (consumer plus informal PAS provider) will be randomly assigned to an intervention and wait list/control group.

Phase 3 Measurement

In Phase 3, we will administer initial and 3-month follow up surveys to both the intervention and control groups, by a telephone interview, as described in Phase 2 Measurement, above. The hypotheses to be tested include:

  1. Informal PAS consumers attending the education sessions will demonstrate improved health status, increased exercise participation, increased social contacts, higher reported exposure to environmental  facilitators in the community, improved satisfaction with PA providers and  increased frequency of participation, improved quality of participation in the community and increased level of comfort directing informal care providers.

  2. Informal PAS providers attending the education sessions will improve their approach to preparing consumers for community activities, report less difficulty with completing tasks, have fewer injuries and report less stress and an increased level of comfort during assistance activities than individual providers who do not attend the training intervention.

Phase 3 Data Analysis

Quantitative data collected during phase 3 will be entered into a web-based survey system and exported into SPSS for analysis. Data from the CORE survey will be used to determine descriptive statistics of the participants. An independent test will be conducted to compare the mean scores between the personal assistant training group and the personal assistant control group. A paired t test will be conducted to assess changes pre- and post-intervention for consumers and for personal assistants. A McNemar’s test will evaluate within-group changes on dichotomous variables. Finally, an analysis of covariance (ANCOVA) with baseline values as a covariate will be used to evaluate differences between groups (training vs. control) for both consumers and personal assistants. This intervention will address the core problems that are barriers to full community participation by people with disabilities. At completion of the project all training materials will be disseminated and distributed to local rehabilitation facilities and Independent Living Centers.  Improving provision of informal PAS has the potential to improve the transition to community living for individuals with disabilities. Having access to high quality informal providers can help reduce the risk of institutionalization and poor health outcomes for individuals receiving assistance.