Author: Dhillon, Shaminder K; Wilkins, Seanne; Law, Mary C; Stewart, Debra A; Tremblay, Mary
Date published: October 1, 2010
While the word "advocacy" is used often in the occupational therapy literature, few articles give the meaning of this term. There are no occupational therapy textbooks or chapters of textbooks devoted to understanding advocacy. Literature suggests that providing advocacy is a traditional role in occupational therapy (Sachs & Linn, 1997; Smith, 2005; Swedlove & Brown, 1997), yet definitions are broad and inconsistent. There are definitions that are taken from dictionaries and focus on the client-advocate relationship (Kain, 2002; Townsend et al., 2007). Some definitions focus on actions that occupational therapists typically engage in, such as providing education, accessing services and supports, and improving function (Boyt Schell, Blesedell Crepeau, & Cohn, 2003; Sachs & Linn; Smith). Others focus on actions related to a legal definition in which the word advocacy originated, such as pleading an issue, informing and upholding rights, and engaging in lobbying or activism efforts (Boyt Schell et al.; Jaffe, 1992; Sachs & Linn; Smith; Townsend et al.). Most definitions are combinations of the above. Advocacy as "initiatives taken by a therapist on behalf of a client, to pursue a change in the environment that will ultimately enhance occupation," proposed by McColl (2003, p. 5), is grounded in occupational therapy theory.
The social model of disability was introduced in the disability studies literature in response to the medical or individual model, which locates the problem of disability within the person. As a result, the person is expected to comply with treatment as prescribed by health care professionals in order to be cured (Derkson, 1980; Gadacz, 1994). In 1990, Oliver offered the social model of disability as an alternative as it places the problem of disability in the environment. He argued that society has created social, cultural, physical, and institutional barriers preventing the participation of disabled people. Leaders in the field of disability studies agree that there is an appropriate time for medical intervention and rehabilitation; however, their concern is with ongoing inappropriate and oppressive rehabilitation as well as the lack of decision-making power of the individual receiving services (Abberley, 2004; Derkson; Oliver). The social model of disability may not fit completely with McColl's (2003) definition of advocacy. While both indicate that intervention is targeted at changing the environment, McColl's definition states that therapists act on behalf of the client rather than in collaboration with the client.
Often, occupational therapy literature mentioning advocacy focuses on the occupational therapy role in a particular setting or with a specific population. Advocacy is a recommendation in these contexts as opposed to an area of professional practice itself. The review of definitions indicates that the profession does not clearly and consistently articulate the purpose for advocating. Occupational therapists may be called to advocate for themselves and their profession (Foti, 1996; Metzler, 2000, 2003; Smith, 2004), for their clients to meet their needs (Kain, 2002; Lohman, 2002; Young, 2002), or for both the profession and clients. The Canadian Association of Occupational Therapists ([CAOT], 2010) has published a number of position statements indicating that occupational therapists should advocate for specific health initiatives, policy changes, and research projects that improve the health and well-being of clients, but these statements have not defined advocacy or described specific ways for an occupational therapist to advocate.
In Israel, Sachs and Linn (1997) used a naturalistic inquiry to conduct ethnographic interviews with 12 occupational therapists from a variety of settings and with various years of experience. Participants perceived themselves as guardians of morals when witnessing misconduct towards clients. They became advocates when representing clients' functional abilities and educating the team on environmental modifications, and their advocacy role was shaped by their experiences within their teams.
Advocacy may be controversial as the needs and rights of the client must be balanced with the conflict that may arise at the occupational therapist's workplace for the therapist, particularly if the workplace is the target for advocacy (Dyck & Jongbloed, 2000; Sachs & Linn, 1997). In fact, Tannous (2000) argued that it is not appropriate for occupational therapists to be advocates as true advocates (who are occupational therapists) are not paid and are, therefore, completely loyal to the recipients of advocacy services. The purpose of this study is to understand why occupational therapists advocate with and for people with disabilities in order to better understand this phenomenon and the meaning it has for therapists.
The study was approved by the university research ethics board and was conducted in 2006. A hermeneutic, or interpretive, phenomenological study is considered to be the most appropriate approach for understanding the meaning of advocacy. Through hearing advocacy stories, a hermeneutic circle was engaged between the first author and the participants to unearth an understanding of advocacy in occupational therapy. Hans-Beorg Gadamer, a German philosopher, described the hermeneutic circle in terms of movement between the whole and its parts (Geanellos, 1998). In this instance, the phenomenon of advocacy is the whole and individual stories and insights from participants are the parts.
The process began with the use of criterion sampling to recruit occupational therapists who had identified that they provided advocacy services from the OT Networker link on the CAOT website. Criterion sampling is a form of purposeful sampling consistent with the phenomenological approach (Creswell, 2007). E-mail requests for interviews were sent to 116 occupational therapists who met the criterion of having provided advocacy services and were registered to practice in Ontario. The interview guide was provided to participants via e-mail with the consent form prior to the scheduled interview to initiate reflections. For data collection, in-depth interviews of 30 to 90 minutes duration were conducted by the first author in person. Participants were asked to define advocacy, share their advocacy stories, and comment on why they provided advocacy services. Interviews were audiotaped and transcribed verbatim. Participants were asked at the end of their interviews if they knew of an occupational therapy colleague who might also be interested in sharing his or her experiences. Snowball sampling was continued until saturation, when no new findings were arising from narratives (Crist & Tanner, 2003).
Participants were provided with their transcripts for member-checking to ensure credibility. Gadamer stated that each individual has pre-understandings or values, beliefs, and assumptions about the phenomenon of interest (Geanellos, 1998), in this instance, advocacy. Participants began to reflect on their pre-understandings when they were provided with the interview guide. The first author also explicated her preunderstandings by asking a colleague to interview her using the interview guide. Subsequently, she used a journal to track changing pre-understandings and record an audit trail. She reflected on the first occupational therapist she had met while taking an undergraduate course on disability rights, which lead to her interest in becoming an occupational therapist. Her understanding was that occupational therapists practiced by upholding disability rights. Journal writing was an important step as she began to see human rights issues emerge in the data as she needed to understand this theme from participants' experiences as well.
From data collection to analysis of transcripts, there was a fusion of horizons among the perspectives shared. A fusion of horizons is the goal of hermeneutic phenomenology when individual perspectives are brought together to give rise to an overall meaning of the phenomenon (Fleming, Gaidys, & Robb, 2003). Crist and Tanner (2003) and Fleming et al. provided steps for conducting the analysis of hermeneutic phenomenological data. An initial reading of interview transcripts provides a preliminary understanding of the advocacy stories. A second, more detailed reading gives rise to individual or specific themes. Then, these themes are compared to the researcher's pre-understandings to search for new understandings. Finally, these understandings are held up against the fundamental meaning and context of the whole transcript and exemplars are identified. The first two authors completed the data analysis and the team ensured that findings were grounded in the data.
Ten participants were recruited through CAOT and another three through snowball sampling. Participants had graduated from four Canadian occupational therapy programs. Their years of experience varied from 1 year to 34 years, and they worked with a variety of populations, including children, older adults, and adults with physical and/or mental health impairments. Six themes explain the meaning of advocacy for these therapists as demonstrated by their own words. Participants also described how they learned to advocate, which gave rise to a process that demonstrated their learning across time. The names that appear are pseudonyms chosen by the participants.
Why do Occupational Therapists Advocate?
There were reasons for advocating that pertained specifically to the client, reasons that were specific to the therapist, and some reasons that seemed to be equally relevant to both client and therapist. These reasons or themes have been organized diagrammatically in Figure 1.
In regards to advocating with and for their clients, participants described experiencing personal fulfillment as they were able to see tangible improvement in clients' lives. Clients' experiences validated the therapists' involvement: "I have felt being an OT and advocating as part of my OT role has been really rewarding. I find it very affirming. It's why I do OT" (Maria).
This sense of personal "satisfaction" or "gratification" is also demonstrated in participants' personal lives when they mentioned their volunteer advocacy activities, such as being members of community organizations interested in a variety of issues pertaining to people with disabilities in the community, including housing/homelessness, mental health services, accessibility, and modified equipment. Some participants discussed new initiatives and others described activities on a day-to-day basis, such as writing letters to the editor, making calls to a Member of Provincial Parliament (MPP), and filing complaints to owners and operators in regards to the lack of accessibility of their facilities.
Power and influence.
Along with the title of occupational therapist comes power and influence that clients or people with disabilities may not have. Although this influence may be rooted in formal education and knowledge of the system, practice setting, and resources available, essentially it creates a power differential between the occupational therapist and client. Participants were uncomfortable holding this power, but they used it in advocacy to benefit the client. Elyse was disillusioned with health care and social service providers who disempowered people with disabilities through policies and procedures resulting in the providers maintaining control in the situation:
I do find that it's a shame to think that they need someone with a degree to write a letter on letterhead and say "This person is eligible for your program or for your funding or for whatever and you should not have taken them off and this should not have happened and rectify this now," and then it happens. As opposed to the person just not being able to walk into an office and say, "I got this letter, I don't know why you're cutting me off, I shouldn't be cut off," . . . It's a shame.
Participants identified that some of their clients completed the majority of the work in advocating for themselves but required the therapist to speak on their behalf to accomplish their goals.
Engaging in occupation.
Some reasons for advocating involve both the therapist and client, such as engagement in occupation. The practice of occupational therapy is concerned with the domain of occupation or meaningful activity (CAOT, 1997). Victoria identified disagreements between the client and team as they pertained to occupation:
Of course, the whole multi-[disciplinary] team was in an uproar that [the client] shouldn't be allowed to go to the casino because he's gambling . . . but to this gentleman who has limited other purposeful leisure pursuits, it's an activity that he enjoys . . . He had no significant kin that he wanted to leave [his money] to. He made a very appropriate statement that he cannot take the money with him. He enjoys gambling so he wanted to go. So I was able to take [my] assessment and advocate . . .
Although participants did not explicitly cite occupation as the reason for advocating with and for their clients, their stories of advocacy relate to engaging the client in his or her chosen occupations. Given the breadth of occupations that people find meaningful, the scope for advocacy is limitless.
Advocacy and client-centred practice were linked for participants in that they both involved the client as the guide for the therapist's actions. The idea of working in partnership with clients to fulfill their goals would seem to be taken for granted, considering that the concept of client-centred practice has been discussed in the occupational therapy literature for over 25 years (Health and Welfare Canada, 1983). However, participants identified how challenging client-centred practice and advocacy can be because not all team members practice in a client-centred way, nor do they have the same definition of client-centred practice.
Almost all of the participants commented on client-centred practice in their interviews, and it was an easier concept for them to discuss than advocacy. Participants explained that client-centred practice is the conceptual lens that they use in their practice, and advocacy involves actions that are consistent with that framework: "I think it's part of the whole concept of what client-centred practice is and all that stuff we hear about. I think it operationalizes that" (Mae).
Human rights and basic needs.
There are many instances when the occupational therapist is called to advocate with or for clients because of issues that pertain to the client. Participants felt the need to uphold the client's human rights and entitlement to equitable treatment. Clients were disadvantaged because the environment was not set up to accommodate their participation. For Claire, rights were a part of her definition of advocacy and she told a story to illustrate this definition:
I used to work with preschoolers and we had a lot who were refused [junior kindergarten] and [senior kindergarten] entry, even though that is not allowed. We had a lot of parents who were told, "Well we can't handle . . . your kid. They have behavioural issues, we don't have the [educational assistant] funding to have your child here," and that's all we get . . . Parents believe them and say, "Okay," you know, and their kids don't go to school. Every child in this province has the right to go to school and parents just don't know about it.
A need to ensure equitable treatment for their clients prompts occupational therapists to advocate. Not only were participants' clients being discriminated against compared to able-bodied people, some were also being discriminated against compared to other disabled people because they had other disadvantages, such as English as a second language and "non-permanent" status in Canada.
Quality of life.
Participants also felt inclined to advocate for their clients when they recognized an opportunity to improve the clients' quality of life. In these instances, clients' rights were not being violated and their basic needs were being met; however, therapists were able to change some aspect of clients' lives that improved their lifestyle considerably. Riley described working with a family living with osteogenesis imperfecta:
I assisted them in getting a handicapped parking permit, which they didn't necessarily need 100% of the time, but in the winter time if they were walking with their children in the parking lot, there is a much decreased chance of her child falling or if her child has a cast and she has to carry her into the store. Can you imagine having to apply (for a handicapped permit) every single time that their child had a break? Their four-week-old son had four broken bones already.
Participants commented that clients do not always identify quality-of-life issues if they are unaware of alternatives and, thus, assume that they have to cope with the environment as best they can. Occupational therapists were able to explore issues and options with clients.
How Is Advocacy Learned?
Within the context of participant interviews, therapists discussed how they understood advocacy and came to learn about it. The process through which an occupational therapist learns about advocacy can be situated on a continuum of time, as described below.
Advocacy is a part of occupational therapy.
Twelve of the 13 participants indicated that advocacy was a service within the scope of occupational therapy. They had always valued this role in their practice and viewed advocacy as part of their job. The one participant who disagreed provided a unique story in that she contacted a local newspaper to debunk myths about disability based on her client's experiences. This was not a part of what she considered her regular job duties, and, thus, it is understandable that she would view advocacy as being separate from occupational therapy.
For most, advocacy was so much a part of what participants did that they had difficulty differentiating the skill set and the time spent engaged in advocating with or for people with disabilities. Seven participants reported that they advocated during paid time; four participants indicated that they advocated during both paid and unpaid time; and two participants stated that their advocacy activities were completed on their own time only.
Advocacy skills learned on the job.
Given that participants believed advocacy services were a part of what they did as occupational therapists, it follows that they would have some framework or expertise on how to advocate with and for people with disabilities. However, participants reported that they did not learn to advocate in their occupational therapy education programs. Some participants suggested that those therapists who advocate do so because it is part of their personalities to be outspoken and act on their concerns for people with disabilities.
Many therapists reported learning how to advocate on the job when a situation requiring advocacy presented itself. Therapists learned through reflecting on their own advocacy experiences, eliciting feedback from colleagues, and watching colleagues advocate. In defining advocacy, participants reported drawing on clinical experience and searching dictionaries.
On the time continuum, the occupational therapists in this study learned the importance of advocating with and for people with disabilities in their occupational therapy education programs. As a result, while becoming occupational therapists, they viewed advocacy as part of their practice and they assimilated this value along with their appreciation of the history and perspectives of people with disabilities. However, they did not learn the skills to advocate until they entered clinical practice, when they were presented with situations that required them to act on their values.
Advocacy requires strategies for adversity.
In clinical practice, occupational therapists are presented with situations in which they may choose to advocate and learn the required skills. They also learn that advocacy may result in challenges, such as adversity from a third party in the client's environment to whom the advocacy is being directed. For these therapists, advocacy was valued highly enough that they were willing to address the adversity. Some participants reported that the word "advocacy" is a dirty word that brings with it resistance from coworkers, employers, third party payers, government, and so forth. Therefore, participants indicated that although they knew they were engaging in advocacy, they did not articulate or document their work as "advocacy."
Along with experiencing the adversarial nature of advocacy, participants then learned strategies such as using diplomacy. Maria described using diplomacy in a long-term care facility where the needs of older adults must be balanced with the needs of unionized health care aides.
I will be speaking to the charge nurse as I have done many times about the fact that several of the patients wish to be taken to the bathroom or have their diaper changed and find it most unpleasant to be left sitting in a wet or soiled diaper . . . And I usually say, "What can I do to help?" I try to be very diplomatic. I realize it's a problem. I realize union rules are such that they have to have their tea break at a certain time, but we're here to work for the client . . . I'm hoping over time that if enough of us do this, we will actually bring about changes, but it's slow, like walking through molasses.
Participants most often reported that their colleagues and university professors were their role models in advocacy, and the attribute they most valued was the role model's diplomatic nature. Participants also appreciated the confidence and the client-centred approach that their role models demonstrated.
The reasons for advocating that relate to the therapists in this study include a personal sense of fulfillment and having the power and influence to advocate; yet these are not cited in the literature as reasons for therapists to advocate. By contrast, reasons such as upholding clients' rights and entitlement to equality (Boyt Schell et al., 2003; Fleming Cottrell, 2005; Jirikowic et al., 2001; Sachs & Linn, 1997) as well as quality of life (Harvey, 1983; Sachs & Linn) have been cited as reasons to advocate. The professional literature has emphasized therapists' responsibility to their clients with little attention given to the personal benefit or contributions that the therapist has to offer.
The reasons for advocating that affect both therapists and clients include client-centred practice and engaging in occupation. First, occupational therapists advocate for clients as a part of their client-centred practice; it is the way in which client-centred practice is operationalized. This finding clarifies the relationship between advocacy and client-centred practice provided by Law, Polatajko, Baptiste, and Townsend (1997) in which advocacy is listed among other actions. Specifically, occupational therapists "demonstrate respect for clients, involve clients in decision-making, advocate with and for clients in meeting clients' needs, and otherwise recognize clients' experience and knowledge" (p. 49). Restall and Ripat (2008) identified the client-centred strategies framework, a tool providing a number of strategies, including "coalition advocacy/ political action" (p. 289), to facilitate therapists' incorporation of client-centred principles in practice. This study was completed prior to the publication of the Canadian model of Client-Centred Enablement (Townsend et al., 2007), which identifies "advocate" as an enablement skill and the Profile of Occupational Therapy Practice in Canada (CAOT, 2007), which identifies "change agent" as an occupational therapy role.
Occupational therapists advocate to enable clients' engagement in occupation. In the literature, both engaging clients in occupation (Kubina, 2000) and improving clients' functional outcomes (Smith, 2005) have been cited as reasons for advocacy. Other professional literature, such as nursing and social work, demonstrates that occupational therapists are not the only health care providers who are discussing the role of advocacy, and although it is advantageous to clients to have an entire team advocating with and for them, each professional should be justified in his or her involvement. In occupational therapy, clinicians focus on the client's occupations or meaningful activities, and this is the unique contribution they provide on interprofessional teams.
At the beginning of the learning continuum, occupational therapists learn to value advocacy in their respective education programs. The reason for this may be that the literature they are reading as students indicates that advocacy has traditionally been an occupational therapy role (Sachs & Linn, 1997; Smith, 2005; Swedlove & Brown, 1997). Findings from other research demonstrate that occupational therapists agree with statements about believing advocacy is important in their work but do not necessarily have the skills and knowledge to implement advocacy in practice (Redick, McClain, & Brown, 2000; Restall & Ripat, 2008). These results are important as student occupational therapists and clinicians are reading literature to suggest that they should be advocating; yet, they are not receiving the necessary formal education.
Dyck and Jongbloed (2000) indicated that the advocacy role is voluntary and unpaid, and, therefore, therapists may be hesitant to take on this role. In contrast, the findings of this study reveal that 12 participants felt advocacy was a part of their job and not voluntary. In addition to their paid work, 11 participants reported advocating as part of their volunteer work. Although participants identified that advocacy within the context of their paid work was not always completed during paid time, having to use personal time for advocacy did not appear to limit their participation. Thus, participants advocate with and for people with disabilities due to the importance they place on this activity. Restall and Ripat (2008) reported that their survey respondents felt some occupational therapists were more inclined to participate in coalition advocacy due to personal experiences or interests.
It is the value that participants placed on advocacy that enabled them to continue to participate in this activity despite the challenge of "advocacy" being perceived as a dirty word in their work settings. Participating in advocacy had the potential for adversity, confrontation, and conflict; thus therapists did not articulate this work as advocacy. Mattingly and Fleming (1994) described the concept of "underground practice," whereby therapists may value an area of practice that is in conflict with the medical model values they are expected to practice. It seems that for some participants providing advocacy services is an underground practice.
Due to the potential conflict of interest with the workplace, Tannous (2000) argued that occupational therapists could not act as advocates. Whalley Hammell (2007) contended that if occupational therapists upheld their code of conduct and practiced using a client-centred approach then there would be instances in which they advocated to their employers and placed their job security at risk to act in the best interest of the client. In this study, some participants felt supported by their teams and employers while others opposed these parties. All felt justified in their actions and were committed to advocating despite the work not being paid for and the adversity involved. Tannous encouraged therapists to be spokespersons who "defend people's rights and promote greater life opportunity" (p. 45), which resembles the client's basic human rights and qualityof- life reasons for advocacy that participants reported in this study; however, the issue of conflict of interest arising between our professional and personal responsibilities remains.
It is imperative that occupational therapists have a common understanding of the definition of advocacy within the practice of occupational therapy. McColl's (2003) definition provided a basis for this study and participants' narratives have added insights to contribute to the following new definition:
Advocacy is a client-centred strategy involving a variety of actions taken by the client and therapist, directed to the client's environment to enact change for the client such that engagement in occupation is enhanced through meeting basic human rights or improving quality of life.
The "client" may be conceptualized as an individual or a group; participants provided stories that involved both. This definition is consistent with the social model in that most participants reported on change that occurred in the client's environment; for example, advocacy was directed to health care and social service providers, the multidisciplinary team, and to the school staff and board. However, the difference lies in the original intent of the social model, which was to create change at the level of social policy and political action rather than on a case-by-case basis. The study findings arise from participants describing advocacy stories primarily from their clinical work with individual clients and demonstrate that there is a potential to influence change more widely.
Limitations of the study include challenges inherent in using hermeneutic phenomenology and applying it as a methodology. For example, Gadamer would argue that "understanding" is dynamic and that repeated interviews are necessary to capture these changes in understanding; however, more interviews pose difficulties in practice, and were not possible for this research project.
The occupational therapy literature mentions advocacy often without describing why it is significant or meaningful for occupational therapists. Therapists are called to advocate for a variety of reasons, with different populations and in various settings; however, the discussion of advocacy itself is limited and disjointed. The purpose of this article is to examine the meaning of advocacy through descriptions provided by occupational therapists, using a Gadamerian-based hermeneutic phenomenology tradition. The transcripts from the interviews with occupational therapists were analyzed using methods provided by Fleming et al. (2003) and Crist and Tanner (2003). Findings revealed that participants advocate for reasons that relate to themselves, the client, and both themselves and the client. With respect to learning, participants view advocacy as part of occupational therapy and they learn the skills to advocate on the job. There are challenges with this however as the therapists also realize that advocacy can be adversarial.
The Profile of Occupational Therapy Practice in Canada (CAOT, 2007) and the Canadian model of client-centred enablement (Townsend et al., 2007), which were published after this study, are consistent with these findings in that advocacy is a part of occupational therapy professional practice. Thus, it is important that this area of practice be taught explicitly in both entry-level educational programs and continuing education programs (Restall & Ripat, 2008). The curriculum for these programs may include the definition for advocacy provided, the social model as a theoretical underpinning, the relevance and implications for the therapist and client, as well as the adversity and diplomacy skills needed in practice. Future research should aim to explore the perspective of the larger occupational therapy community on advocacy. There is also an important role for involving people with disabilities in future research to understand these partnerships better.
The first author would like to thank each committee member for their expertise and contributions to this thesis study. The study participants are acknowledged for sharing their affirming stories.
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Shaminder K. Dhillon, M.Sc., OT Reg. (Ont.) is Assistant Professor in the School of Rehabilitation Science at McMaster University, 1400 Main Street West, Institute for Applied Health Sciences 408C, Hamilton, ON, L8S 1C7.
Telephone: 905-525-9140, ext. 27815.
Seanne Wilkins, PhD, OT Reg. (Ont.) is Associate Professor in the School of Rehabilitation Science at McMaster University, 1400 Main Street West, Institute for Applied Health Sciences 446, Hamilton, ON, L8S 1C7.
Mary C. Law, PhD, OT Reg. (Ont.) is Professor in the School of Rehabilitation Science, at McMaster University, 1400 Main Street West, Institute for Applied Health Sciences 412, Hamilton, ON, L8S 1C7.
Debra A. Stewart, M.Sc., OT Reg. (Ont.) is Associate Professor in the School of Rehabilitation Science at McMaster University, 1400 Main Street West, Institute for Applied Health Sciences 409, Hamilton, ON, L8S 1C7.
Mary Tremblay, PhD, was an Associate Professor in the School of Rehabilitation Science and a member of the Program in Medical History of the Faculty of Health Sciences, McMaster University.
Citation: Dhillon, S. K., Wilkins, S., Law, M. C., Stewart, D. A., & Tremblay, M. (2010). Advocacy in occupational therapy: Exploring clinicians' reasons and experiences of advocacy. Canadian Journal of Occupational Therapy, 77, 241-248. doi: 10.2182/cjot.2010.77.4.6
Submitted: 24 October 2009; Final acceptance: 17 April 2010.
The first author was supported, in part, by an Ontario Graduate Scholarship from the Ministry of Training, Colleges and Universities which provided funding for full-time study. She also received a Basmajian Travel Award from the School of Rehabilitation Science Awards Committee at McMaster University to present the preliminary findings at a CAOT conference.