ATOMS Project Technical Report - Factors in Assistive Technology Device Abandonment: Replacing “Abandonment” with “Discontinuance”
April Lauer, MS, OTR, Kathy Longenecker Rust, MS, OT, & Roger O. Smith, PhD, OT
Table of Contents
Abstract
Issues surrounding the abandonment of assistive technology devices (AT) are complex. This fieldscan reviews the literature and posits a replacement for the term “abandonment” in preference to the term “discontinuance”, to imply a more accurate explanation of why AT is used or not used. As service providers better understand AT discontinuance, they can more effectively update, revise and improve AT services for consumers and their family members. Likewise, as funding agencies better understand reasons for discontinuance, strategic third party reimbursement policy can support rational funding decisions. In the past, assistive technology disposal connoted irresponsibility of AT consumers, the AT industry, and service providers. That is, consumers “abandoned” equipment, service providers over prescribed, and the industry inappropriately over sold. This project analyzed the literature and found that despite some negative reasons why AT consumers dispose of their devices, there are also many neutral or positive reasons. We propose and briefly describe a theoretical model of positive and negative discontinuance. This model provides the basis for two conceptual measurement tools: 1) the Positive-Negative (PN) scale and 2) Factors of Discontinuance (FOD) formula. The tools were piloted with individuals donating devices to a statewide equipment collection and recycle program. This report reviews the theoretical background, development, and organization of the PN and FOD tools as they were operationalized in a preliminary survey.
Rationale for the Fieldscan
Understanding the outcomes of assistive technology (AT) requires consideration of the fact that this intervention is inclusive of both a device and a service. According to Public Law 100-407, an AT device (ATD) is “any item, piece of equipment or product system whether acquired commercially off the shelf, modified, or customized that is used to increase, maintain or improve functional capabilities of individuals with disabilities”. An AT service is defined as “any service that directly assists an individual with a disability in the selection, acquisition or use of an AT device” (PL 103-218, HR 351, Section 212). Although AT is a beneficial intervention method, some people refrain from using their devices. Published rates on the abandonment of ATD’s range from 8% to 75 % (Garber & Gregorio, 1990; Gitlin, 1995; Phillips & Zhao, 1993, Tewey, Baranicle & Perr, 1994). An understanding of the scope of reasons why individuals stop using assistive technology devices (ATDs) requires that we better communicate these reasons to service providers, clients, family members, and agencies. For this investigation two specific purposes were identified:
- to identify and categorize the variety of factors influencing both the positive and negative discontinuance of AT, and
- to develop innovative methods to quantify the continuum of discontinuance.
Data Collection Procedures
Data supporting this fieldscan come from two primary sources, an extensive literature review and a pilot survey of individuals who were donating equipment to the Wisconsin Wheelchair Recycling Program (WRP) based in Milwaukee and Madison, Wisconsin. The search for literature about AT discontinuance utilized multiple databases: EBSCOhost, CINAHL, PsychINFO, ProQuest, PubMed, Web of Science, and Ingenta. Search terms included a combination of the words organized in Table 1. Column one refers to terms regarding AT, while column two indicates those related to discontinuance. Over sixty peer reviewed articles and/or books were identified. In addition to articles pertaining to AT discontinuance, previous models and taxonomies were analyzed for potential contribution. (Cook & Hussey, 2002; Edyburn, 2001; Fuhrer, Jutai, Scherer, & De Ruyter, 2003; Gitlin, 1998; Lenker & Paquet, 2003, 2004; Roelands, Van Oost, Depoorter, & Buysse, 2002; Scherer, 2000; Scherer & Craddock, 2002).
AT |
Discontinuance |
assistive technology |
abandonment |
Table 1: Search Terms Used
Three different questionnaires were created to measure discontinuance in this pilot project. The three questionnaires were necessary in order to adequately reflect the opinions of the distinct categories of people who actually made the device donations to the WRP: 1) device users, 2) significant others (family, friends, caregivers), and 3) agency representatives. Items for each questionnaire were developed by drawing content and concepts retrieved from the literature (Ballinger et al., 1995; Chamberlain et al., 2001; Finlayson & Havixbeck, 1992; Garber, Bunzel, & Monga, 2002; Gitlin et al., 1999; Neville-Jan et al., 1993; Patten, 2001; Wielandt & Strong, 2000). The final questionnaire included 25 questions organized into five groups: 1) device information, 2) demographics, 3) history of device use, 4) training, and 5) service. Parts of these surveys contributed to this technical report. WRP volunteers and a researcher distributed the surveys. WRP volunteers were educated as to the purpose of the study as well as the instructions for distributing the questionnaires. The Milwaukee and Madison sites distributed questionnaires for roughly three months. In addition to these main sites, four traveling equipment drives distributed surveys.
Results
The literature revealed seven different terms that are used interchangeably to discuss the scenario of a person who stops using an ATD:
- disuse (Kittel, Di Marco, & Stewart, 2002),
- non-use (Bentur, Barnea, & Mizrahi, 1996; Forbes, Hayward, & Agwani, 1993; Geiger, 1990),
- rejection (Gitlin, 1995),
- avoidance (Scherer, 1993),
- noncompliance (Wielandt & Strong, 2000),
- abandonment (Hocking, 1999; Kittel et al., 2002; Mann, Granger, Hurren, Tomita, & Charvat, 1995; Phillips & Zhao, 1993; Scherer, 1993), and
- discontinuance (Riemer-Reiss & Wacker, 2000).
Some of these terms cause confusion due to lack of specificity. Most of the words listed above connote negative meanings, when in fact the reason for not using a device may be related to a positive factor for an individual (e.g., healing). Unlike the first six terms, discontinuance clearly communicates its meaning. Discontinuance is defined as the process by which a person ceases to use ATDs after a period of time. A major advantage is that this word has a neutral connotation, referring to the cessation of device use after a period of time.
Figure 1: Device Discontinuance Factors and Relationships
Text Description
What began as a way to organize the literature according to common reoccurring themes evolved into the development of two schematic representations conveying factors of discontinuance. Reasons for not using AT were individually analyzed and eleven themes emerged. The eleven categories are depicted in Figure 1, divided into three major groups and arranged hierarchically to show the varying levels of impact on device discontinuance (see Figure 1). It also became apparent that most reasons for not using AT could be classified as either positive or negative, although a third category of “other” did become necessary. The second schematic depicts a model continuum with negative factors of discontinuance on the left and positive factors of discontinuance on the right. Three factors, outgrowing a device, changing needs or priorities, and death of the user did not fit this conceptualization and were grouped into another category outside of the positive-negative continuum and labeled as “other”. Additionally, the model recognizes demographical aspects (i.e. gender, age, location, education, and culture) as factors that vary among each individual and may influence the type of discontinuance an individual experiences. Thus, the demographic characteristics are considered modifiers and are portrayed with a dotted rectangular box surrounding all of the other factors of discontinuance (see Figure 2). Those factors belonging to the positive discontinuance category reflect positive outcomes such as an improvement in function or health. These factors tend to exclude failures of the device or service and generally indicate aspects of the client’s individual situation such as the development of an alternative solution. Negative outcomes are represented by factors such as: functional or health diminishment, activity or participation decline, or a decrease in a person’s quality of life and fall into the negative discontinuance category. These factors tend to deal with faults in the device, service, or environment, as well as decreased function and personality characteristics. Factors belonging to the “other” discontinuance category (i.e. outgrew device, change in needs/priorities, and death) are not as clearly identifiable as the positive and negative types of discontinuance because they tend to be situation dependent.
Figure 2: A Conceptual Model of Positive & Negative Discontinuance
Text Description
Sixty-three questionnaires were returned. Survey data supported one of the positive discontinuance factors, increased function, as is seen in Figures 3. Much of the equipment donated in this project was intended to be used for a finite period of time. Given that more than 60% of the equipment donated was reported as being used for a health problem lasting less than 2 years, to refer to this equipment as abandoned connotes an inaccurate negative impression devaluing AT.
The Positive-Negative (PN) scale evolved from the organization of device discontinuance factors. It was designed as a subjective measure utilizing lay terminology for participants to easily indicate a score reporting their type of discontinuance. It is a Likert-like scale that measures positive and negative discontinuance. The scale ranges from -3 (Device did not meet your needs) to a +3 (Device met your needs and now you are done with it) (see Figure 4). Positive discontinuance reflects positive outcomes. This occurs when an individual used a device that met his/her needs, but it is no longer necessary for the person to use it. On the PN scale, positive discontinuance includes the scores 1 (minimal positive discontinuance), 2 (moderate positive discontinuance), or 3 (maximum positive discontinuance). The number 0 on the PN scale is neither positive nor negative. Negative discontinuance is reflective of negative outcomes. It describes a device that did not meet the needs of the individual. Negative discontinuance is scored as: -3 (maximum negative discontinuance), -2 (moderate negative discontinuance), and -1 (minimum negative discontinuance) on the PN scale.
One question in the surveys provided a comprehensive list of possible reasons for device discontinuance and respondents were instructed to select all of the reasons why they were no longer using the device (See Figure 5). The FOD formula was designed as a way to quantify these responses. Scores were obtained by applying a +1 for each positive discontinuance factor, a -1 for each negative discontinuance factor, and a 0 for each “other” discontinuance factor. These were summed and averaged to compute the mean FOD score (see Figure 6).
Figure 5: Reasons for Device No Longer Being Used
14. Place an “X” in the box next to ALL of the reasons why you are NOT using your device.
- My health problem got better
- It was replaced with better equipment
- I found another way to accomplish the task without using it
- My health problem got worse
- I did not like the idea of having to use special equipment
- I was too depressed to use it
- I was not ready to accept that I had a disability
- It was too difficult to maneuver (too small/big/heavy)
- It required too much energy to use
- I did not feel safe using it
- I did not like how it looked
- It took too long to set up
- I did not understand the written instructions
- It broke or wore out
- It was painful or uncomfortable to use
- It cost too much to maintain the device in good condition
- It damaged property (e.g. wall, fixtures, carpeting etc…)
- It was never installed
- I received the wrong device
- I forgot how to use it
- I did not have adequate training on how to use it
- I did not have a say in the device that was chosen
- I could not use this device everywhere I wanted to
- I did not feel like I fit in with other people when I used it
- I needed help from someone in order to use it
- The use of this device depended on the use of another device
- My culture does not approve of the use of special equipment
- I outgrew it
- My priorities changed
- Other (please specify) ____________________________________
Figure 6: FOD Scale
Text Description
Both tools represent new methods for quantifying AT discontinuance and offer promise as research instruments that may provide evidence to further support the proposed rejection of the commonly used term abandonment. Small sample size and issues related to how questionnaires were completed (on-site vs. at home and then mailed back) limit the interpretations that may be drawn from the survey data. This investigation successfully piloted the tools and generated a concrete set of recommendations for revision and subsequent application. In addition to reliability and validity studies, future research needs to investigate whether or not discontinuance factors are actually equally weighted, as was assumed in this project, or whether individuals may rate or prioritize factors.
Conclusion/Discussion
The focus of this technical report was to advance “discontinuance” as the appropriate term to describe the non-use of assistive technology devices and to classify reasons of discontinuance into factors reflecting both positive and negative discontinuance. Certainly, device discontinuance may reflect faulty devices and/or inadequate services, resulting in negative impacts for both the client and the profession. Importantly, however, discontinuance may result following appropriate device prescription and service delivery. If an individual’s health and well-being improve, the device may no longer need to be used. The widespread use of the term abandonment to describe this process suggests a negative impression that is not representative of all situations where ATDs are no longer being used.
Acknowledgements
This project is supported in part by the National Institute on Disability and Rehabilitation Research, grant number H133A010403. The opinions contained in this paper are those of the grantee and do not necessarily reflect those of the NIDRR and the U.S. Department of Education.
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