On Methodological, Logistical and Ethical Issues in Research Related to People with Disabilities

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Although I am slated to participate in a roundtable on Methodological, Logistical and Ethical Issues in Research Related to People with Disabilities at the Society for Social Work and Research conference with seven interesting colleagues in six hours, the 1/12/2011 nor’easter thwarted my air travel…but wanted to share both the abstract and some of my own thoughts that would have been shared during the roundtable…
Speakers/Presenters:   Elizabeth Lightfoot, PhD, University of Minnesota-Twin Cities , John C. Bricout, PhD, University of Central Florida , Elizabeth P. Cramer, PhD, Virginia Commonwealth University , Susan L. Parish, PhD, MSW, Brandeis University , Sara-Beth Plummer, PhD, Rutgers University , Michelle Putnam, PhD, Simmons College and Elspeth M. Slayter, PhD, Salem State University
While social workers have worked with people with disabilities in a variety of settings for years, historically there have been few social work researchers investigating disability-related research topics. However, in the past ten years there has been a growing emphasis on rigorous social work research on disability-related topics, often from a social model lens of disability, using both qualitative and quantitative approaches. We have seen a growing number of disability-related presentations at SSWR each year since its inception, and the inauguration of the SSWR Special Interest Group on Disability just two years ago. This growth in interest in disability-related research by social work researchers has produced new knowledge related to social services, social supports, social policies, social action, community living and community inclusion of people with disabilities. As disability-related research has grown in sophistication while tackling increasingly complex systems, new populations and life-altering technology it has had to confront key issues of emerging scientific frontiers around knowledge development and knowledge translation in the guise of methodological, logistical and ethical decision making.
The purpose of this roundtable discussion is to discuss emergent methodological, logistical and ethical issues in social work research related to people with disabilities. The roundtable will be organized around each of these three areas, and each panel participant will briefly provide examples from his or her own research experiences to help begin a broader discussion among the attendees of each of these areas. Attendees will also be encouraged to introduce their own examples or bring questions and concerns in each of these three areas to further discussion in a direction that is relevant to the particular interests of the attendees.
Our goal is to create a dialogue with other disability researchers and potential disability researchers on how to address these issues related to disability research. First, the roundtable will focus on methodological issues. Panel participants will discuss key disability-related methodological issues, providing examples from their own research, including defining disability in large datasets, the call for a participatory research approach when investigating issues related to people with disabilities, and measurement issues. Next, the roundtable panelists will discuss some logistical issues that arise when doing disability-related research, including recruiting, modifying data collection instruments, using scales, providing accommodations, conducting interviews and focus groups, and obtaining research funding.
Finally, the roundtable panelists will provide examples of ethical issues that can arise in disability research, such as obtaining consent, using proxy content, ensuring privacy and confidentiality, protecting participants from being over-researched, and working with IRBs. The roundtable will be aimed both at researchers with extensive experience in disability issues, as well as new investigators who are beginning their research careers and researchers who are interested in moving into the area of disability research. Members of the SSWR Disability Special Interest Group will also be present to help further the discussion and to build support for disability-related social work research through networking and collaboration.
My specific thoughts….
A) On methodological concerns in the use of secondary data to explore topics related to people with disabilitiesI have used a range of secondary data sources to conduct services research related to people with disabilities (i.e. prevalence and incidence of various conditions/experiences, service utilization and pathways, expenditures related to utilization, quality of care received, etc.).  The major benefit, of course, is the potential to explore difficult topics with at-times rare and elusive or hard to recruit populations – and often larger populations than a community-derived sample could result in.  In my own work, for example, I have used secondary data to explore the prevalence of intimate partner violence in a population-based sample of women with disabilities versus a hospital-based sample, expenditures related to injuring among youth with intellectual disabilities for prevention efforts and utilization of substance abuse treatment among adults with intellectual disabilities.  The choice of this type of data source, of course, has two primary limitations related to both ethical and methodological concerns.

1) A true voice:  Depending on the way in which data are collected, the “voice” of the study participant may – or may not – be the truest voice of some participants whose disabilities may impact communication (e.g. people who are deaf/hard of hearing, people with vocal constraints such as advanced Parkinson’s disease, people with cognitive disabilities).  This may, for example, lead to the use of either interpreters or proxies in telephone surveys, for example. This has an impact on the potential validity of responses.  Take, for example, studies that address intimate partner violence, use of a partner or child as an interpreter or even a proxy may challenge validity.  This may differentially impact this community within the larger disability community vis-à-vis data collected for large, nationally representative surveys and the ability to draw on such resources to derive a more broad understanding of the range of concerns faced by people with disabilities in a given topic area.

2) Accepting existing definitions of disability:  The use of secondary data files to conduct research related to people with disabilities also leads the researcher to accept the frame on disability adopted in the original study (i.e. medical model vs. social model).  This is a methodological concern that intersects in some ways with ethical concerns vis-à-vis being responsive to the disability community regarding definitional approaches.  The definition of and/or operationalization of the construct of disability (and sub-definitions therein) is already a hot topic in the research designs of studies using primary data collection.  However, it appears to me that there is a tendency towards a medical model-orientation versus a social model of disability approach in many existing secondary data sources that have the population size and representativeness that are ideal.  For example, let us consider a range of secondary data sources and the ways in which disability definitions manifest:In my experience, widely available secondary data files operationalize disability in four ways – all of which have limitations:

I.  Receipt of disability-related entitlements
a.       Example:  SSI,SSDI

II. Diagnostic criteria derived from medical bills/administrative records without triangulation
a.       Example:  Medicare or Medicaid administrative claims data
b.      Example:  Adoption and Foster Care Reporting System
III. Criteria for activities of daily living (ADL) or instrumental activities of daily living (IADLs)
o   Example of data file available on ICPSR:  Collaborative Psychiatric Epidemiology Surveys (CPES)
IV.  In the case of intellectual disability, intelligence testing
o   Example of data file available on ICPSR:  Neuropsychological and Emotional Deficits as Predictors of Correctional Treatment Response in Maryland, 2003-2005
B) On ethical concerns, challenges with acquiescence, response bias, yea-saying and nay-saying in research and evaluation with people with intellectual disabilitiesIn working with potential study participants with intellectual disabilities (and developmental disabilities for that matter), acquiescence, response bias, yea-saying and nay-saying are potentially major concerns in both research and program evaluation (when looking, for example, at client satisfaction/feedback components).  Three particular concerns come to mind:

1) The time and cost related to hiring and training the right interviewers As a result of the need to carefully manage the potential for spotting and managing acquiescence, yea-saying and nay-saying in a face-to-face or focus group format with this population, hiring and training interviewers becomes a more involved process.  This may translate into being a more time-consuming and costly process in finding the right people to engage in the best possible data collection.

2) Implications for consent and assent in this specific population:
There are obvious implications for consent and assent and the need to very carefully word these documents to facilitate a good pre-data collection process.

3) Concerns about “dubious” data on the part of agency IRBs (concerned about liability, funding) emanating from discussions of consent/assent concerns: 
Third, also with respect to consent and assent, these issues have led to a sticking point for me in work with agency-based IRBs related to sensitive topics (i.e. implementation of the dignity of risk in community-based shared living settings around sexual relationships and substance use).  I have had a proposal stalled based on  IRB committee concerns that study participants with intellectual disabilities might incriminate themselves during an interview – regardless of whether they have done anything illegal that would need to be reported.  Some of the problem here related to what is in my opinion zealous overprotection of people with intellectual disabilities combined with stereotypes about the population (e.g. unable to control sexual impulses when around children, when using substances).  However, conversations about the challenges of consent and assent with people with intellectual disabilities have also led to discussions about the liability of agency if word of misbehavior “gets out” based on “faulty” data collected from agency clients.
C) Challenges of gathering client data in program evaluation efforts – intersection of ethical, methodological and logistical concerns and need for true implementation of “nothing about us without us”Closely related to concerns about acquiescence, response bias, yea-saying and nay-saying in research and evaluation with people with intellectual disabilities is the topic of getting “good data” on client satisfaction in program evaluation efforts.  Given known potential challenges of collecting data that represents the “truest” voice of people with intellectual disabilities, it seems to me that methodological, logistical and ethical considerations intersect.  This relates to a lack of “normed” instruments in some cases, the challenge of interviewing people given acquiescence (et alia) and the role that unintended coercion can play in this process.

1)  Lack of “normed” instruments: With client satisfaction/program evaluation survey processes in mind, given response bias et alia concerns, while a number of vetted client satisfaction-related instruments exist for adults in outpatient mental health settings (Fischer and Valley, 2000), prison-based settings (Baker, Zucker and Gross 1998), youth in community-based service settings (Stüntzner-Gibson, Koren and DeChillo, 1995) or the families of children with emotional disturbance in community agencies (Koren, DeChillo and Friesen, 1992), few exist for people with intellectual disabilities (Duvdevany, Ben-Zur, and Ambar, 2002).  The Lifestyle Satisfaction Scale (LSS) was developed to assess levels of satisfaction with residential and community-based services among people with intellectual disability (Heal and Chadsey-Rusch, 1985).  Other researchers have developed vetted mechanisms for measuring quality of life among people with intellectual disability (Cummins, 19997; Schalock and Keith, 1993) although this approach to measuring client satisfaction has been criticized (Hatton, 1998).  A number of other studies have demonstrated assessments of the views of clients with intellectual disability on satisfaction with community-based worksites (Eggleton, Robertson, Ryan and Kober, 1999; Kraemer, McIntyre and Blacker, 2003), group homes (Cummins, 1994; Henry, Keys, Jopp and Balcazar, 1996) and long-term planning (Heller, Miller, Hsieh and Sterns, 2000).

2)  Lack of access to what “normed” instruments do exist in agency settings: However, most agency-based evaluators do not have access to any of these instruments and their scoring mechanisms, largely due permissions/copyright issues, cost and lack of training in the use and/or scoring of specialized instruments.  Further, while these instruments may be reported upon in the academic literature, which agency-based social workers may or may not be able to access, journal articles tend not to include full copies of either a particular instrument or scoring mechanism.  As a result of this resource unavailability, many agencies may rely on their staff to develop “home grown” client satisfaction survey approaches without benefit of the use of evidence-based literature on how to engage in this activity.  While the documented “proliferation of ‘home-made’ satisfaction instruments” allows for agency-specific foci in the survey process (e.g. measurement of mission-specific items), this trend does not allow for the comparability of findings across settings and across instruments, assuming the presence of similar populations.  While the use of “home-made” surveys is noted to be “analytically troublesome and imprudent” this is, nonetheless, the reality that many social workers face in agency practice.  Home-made efforts to surveying clients on their satisfaction with services may be further challenged by the well-documented communication difficulties that can exist in interactions with people with intellectual disability vis-à-vis eliciting “valid” responses (i.e. “response bias”) in the direct practice context (Heal and Sigelman, 1995).

3)  Potential for coercion in data collection:  Closely related to this discussion is the issue of potential coercion.  Clients with intellectual disabilities may experience susceptibility to potentially coercive situations with community-based support staff who are implementing satisfaction surveys (Michel, Gordon, Ornstein and Simpson, 2000).  In this context, use of the term “coercion” is not meant to imply that an interviewer has bad intentions toward a consumer, rather, that if the person interviewing the client has some form of potential power over the client, this may bias responses (Weisstub and Arboleda-Florez, 1997). This may be particularly important to consider when surveying offenders with intellectual disability and/or when front-line or clinical workers support clients with intellectual disability while participating in the data collection/survey process (Michel, Gordon, Ornstein and Simpson, 2000; Weisstub and Arboleda-Florez, 1997).

D) On logistical considerations in obtaining buy-in from community partners and their state funding/regulatory bodies

1) Liability and exposure of sensitive subject matter to the larger community
:  When seeking buy-in from a community partner – even after years of building a relationship and a history of research or evaluation collaboration – it can be challenging to move forward on “sensitive” topics as a result of liability concerns.  For example, I am very interested in learning more about the implementation of a central disability policy goal – the dignity of risk concept – in group home settings for adults with intellectual disabilities.  Specifically, I am interested in learning more about how group home workers support individuals with intellectual disabilities in their decision making around sexual practices and alcohol and/or drug use given what is often a lack of explicit agency policy around these topics.   Although agencies acknowledge their struggles in managing/supporting individuals with intellectual disabilities around both topics, exposing the veritable “soft white underbelly” on these matters can be threatening and lead to and end point on possible research discussions.   Even if a particular community partner is willing to engage in a co-created effort to explore such topics, obtaining permission for such research often means seeking out IRB approval from a state funding and/or regulatory agency, which has often resulted in significant delays and/or eventual denials.2) Inter-agency collaboration and permission to interview subjects/use secondary data:  The above-mentioned challenges related to liability and exposure of agencies/state agencies to sensitive topics also comes into play when researchers are interested in populations with child protection and/or criminal justice involvement.  For example, I am currently involved in a project with an outpatient mental health clinic that has had an influx of clients with intellectual and developmental disabilities – all of whom are also involved with the state’s child protection system and/or juvenile justice systems.  The agency’s attorneys insist that we obtain permission to conduct our work from the relevant state authorities before proceeding with our own work. This has led to delays of over two years as meetings between the community agency research team and state agency authorities continue.  While this may reflect a good, thoughtful process that has at its heart the protection of vulnerable human subjects, it presents a problem for researchers in academic settings re: what we can be funded to do and in what time frame, among other matters.