Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities

Abstract

Dyadic interviewing is a qualitative approach that recognizes there exists an interdependent relationship between individuals, embracing this phenomenon as a source of information rather than attempting to control for it. Informed by a Critical Disability Studies ideology, this dyadic interview technique has been adapted to address some of the difficulties that present when conducting interviews with individuals with intellectual disabilities. The interview structure consists of a dyad that includes the individual with intellectual disability and the person they identify as their key support person. Currently, researchers have embraced dyadic interviewing as a method of triangulation. However, it also has potential to be used as an important method of accommodation for people with intellectual disability that promotes choice and self-determination in research participation.

Keywords

critical disability studies dyad intellectual disability interdependence

Introduction

Dyadic interviewing is a developing methodological approach (Eisikovits and Koren, 2010). In part, it emerged as a methodology for research on couplehood relationships because researchers recognized that while one’s partner may not have been physically present during the interview, they were still a presence during the interview (Boeije, 2004; Morris, 2001b; Seymour et al., 1995; Taietz, 1962). The strength of a dyadic approach lay in recognizing the interdependent nature of human agency (Bandura, 2000, 2001). This sentiment resonates strongly in literature on intellectual disability (ID), which recognizes the importance of support in achieving self-determination (Robertson et al., 2001; Stancliffe, 2001; Wehmeyer, 2001; Wehmeyer and Bolding, 2001; Wehmeyer et al., 2009), and among disability studies scholars who have challenged the ideology of independence (Barton, 1989; Kittay, 2011; Morris, 1998, 2001a, 2004; Reindal, 1999; Swain et al., 2004). For people with disabilities, independence refers not to a set of skills or being able to care for one’s self, as service professionals tend to define it, but rather refers to having control over making decisions that directly affect one’s life. This article proposes a technique for dyadic interviewing in research involving individuals with ID that has been informed by Critical Disability Studies. Critical Disability Studies is more than just the study of disability. Rather, it refers to an ideology that challenges societal notions of disability and the position of people with disabilities in the world.

There is a great need for the development of new and improved methodologies in the area of ID research. Particularly, techniques that can be used (1) to improve the participation of people with ID, (2) to mitigate some of the difficulties that arise in conducting ID research, and (3) to provide researchers with a structure to improve the quality of their research and facilitate communication with participants and intermediaries during recruitment and fieldwork. The purpose of this article is to address these needs to provide researchers with a new approach that can be used for interviewing people with ID, in a way they may have never considered before.

The use of a dyadic approach in the general population has been considered a method of triangulation (Eisikovits and Koren, 2010; Morris, 2001b); however, it can also be thought of as an accommodation for individuals with ID. Although often not explicitly stated this way, the use of joint interviews with family or staff is prevalent in existing ID research. For example, eight qualitative studies were found that address the topic of employment and ID, all of which used interviewing as a technique. Two interviewed just the individual with ID, whereas seven also interviewed family members or staff (Butcher and Wilton, 2008; Carrier, 2007; Devlieger and Trach, 1999; Eisenman, 2007; Hagner and Davies, 2002; Hall and Kramer, 2009; Jahoda et al., 2009; Lysaght et al., 2009). Typically, the latter was explained as a way to supplement data gained from the individual with ID and effort made to retain focus on that person as the primary interviewee, while the others served as secondary or confirmatory sources of information. However, the suggestion of joint interviews is inherently problematic from a Critical Disability Studies perspective, raising concerns regarding the potential for proxy or facilitated responses to suppress the voices of people with ID (Antaki et al., 2007; Goodley, 1997; Goodley and Rapley, 2002; Myers et al., 1998; Perry, 2008; Rodgers, 1999; Stancliffe et al., 2000). Where the methodology proposed here differs critically, from ID research that has been done with dyads but not under the auspices of dyadic research, is in how the secondary interviewee is chosen and the purpose of their involvement. The inclusion of a key support person in dyadic interviewing is intended to recognize the construct of interdependence and the role that it plays in independence and social participation for people with disabilities (Lloyd, 2001; Reindal, 1999; Tregaskis and Goodley, 2005; Wendell, 1996; White et al., 2010).

Critical Disability Studies: challenging emancipatory paradigms

This methodology is guided by an epistemology rooted in Critical Disability Studies, which functions to ‘connect the aspirations and ambitions of disabled people with transformative agendas of class, feminist, queer and postcolonial studies’ (Goodley, 2010: 174). In this way, disability studies can draw upon the venerable foundation established by critical social theorists in other disciplines to advance the field, opening new modes of critical inquiry and reinforcing the interdisciplinarity of disability studies (Meekosha and Shuttleworth, 2009).

Feminism has been instrumental to the development of critical theory and to Critical Disability Studies, particularly through the work of feminist disability studies scholars who challenge hegemonic normative notions of representation and difference, interrogate notions of care and dependence as well as power and privilege, and apply conceptual tools such as situated theory or standpoint theory (Garland-Thomson, 2005; Kittay et al., 2001; Meekosha and Shuttleworth, 2009; Thomas, 1999; Wendell, 1996). Recently, an important theoretical connection has been made between standpoint theory and ID:

… the question of developing a standpoint epistemology for persons with intellectual disabilities presents even greater challenges. For one of the tacit assumptions in much standpoint epistemology is that the marginalized perspective and location of the individual is articulable by the individual herself. It is precisely because others have claimed to speak for and about certain groups that the space must be created for these voices to emerge. (Carlson, 2010a: 127–128)

Similar to how standpoint theory has been used to give voice to other subjugated populations, so too can it be applied for people with ID. Discussion of voice is a fundamental methodological consideration for qualitative researchers working with individuals with ID given the extent to which historically their voices have been so pervasively silenced, segregated, and oppressed (Carey, 2009; Carlson, 2010b; Gibson, 2006; Malacrida, 2006).

Position within the production of research

People with disabilities have long been the subjects of research production, often not as voluntary and informed participants. The history of ethical violations in research involving people with ID in particular led to a critical period of change, between 1966 and 1976, catapulting the movement of biomedical research and ethics from the private to the public sphere and thereby leading to the development of research ethics as we know them today (Rothman, 2003). The Patients’ Rights Movement and the Disability Rights Movement both played a powerful role, acting as catalysts for change by drawing attention to the position of people with disabilities in research interactions and bringing visibility to the various ways in which people with disabilities were being exploited and disenfranchised (Carey, 2009; Longmore and Umansky, 2001; Nielsen, 2012; Noll and Trent, 2004).

Yet if people with ID are not involved in research, then how are they to inform the production of knowledge that will affect them? Research plays a pivotal role in making the case for people with ID living and working in the community instead of being segregated and housed in large institutions. It is research that will determine policy that directs funding; that will provide for community-based resources, services, and support; that will determine best practices across the fields of health care, employment, and education among others. If people with ID are not involved, if they do not have a voice in the research driving policy and practice, then how can such research hope to achieve ecological validity and accurately reflect the lived experiences of people with ID? How can research be evidence-based if it does not meaningfully include the voices of people with ID, who have been so othered? Simply put, it cannot. Accordingly, it is the responsibility of researchers working in the ID field to facilitate the involvement of people with ID in their research in a way that this participation is not only done in accordance with ethical practices but that also is meaningful and representational.

Today it is the responsibility of an Institutional Review Board (IRB) to protect research subjects, particularly those who are among populations that are vulnerable to exploitation (Belmont Report, 1978). However, this continues to depict people with ID as passive participants in research interactions. The field of disability studies was revolutionary in embracing the emancipatory potential of research to include people with disabilities (Barnes and Mercer, 1997). This emergence of an emancipatory paradigm in disability studies engaged discussion among scholars about the role of power in the social relations of research production (Oliver, 1997; Stone and Priestley, 1996; Zarb, 1992):

[D]isability researchers walk a fine line between authentically capturing the actions of participants and reinterpreting those actions in [ableist] terms that emphasize victim images of disabled people. No researcher is infallible … Disability research with participants can fall into research on participants—when the only person benefiting is the researcher and their career aspirations. However, critical reflections on subjectivity permit us to at least start unpicking the aims, directions, and findings of research and the researchers’ role in their creation. (Goodley, 1999: 43)

Disability studies scholars have asserted that it is not the role of the researcher to emancipate people with disabilities. That presumption, in and of itself, is paternalistic. The researcher’s role is not to empower people, but rather to facilitate this process for people who have already decided to empower themselves (Oliver, 1992, 1997).

One way in which research can contribute to combating the oppression of people with disabilities is by ‘the development of a methodology and set of techniques commensurate with the emancipatory research paradigm’ (Oliver, 1997: 20). Dyadic interviewing, as detailed herein, challenges dominant research methodologies because it not only recognizes the inherent interconnectedness of people but also because it does not impress upon people with ID the expectation that their ‘independent’ participation must be done unsupported and thereby pressure individuals with ID to conform to normative expectations regarding research participation. Accordingly, the researchers’ role is first and foremost to facilitate people with ID in sharing their experiences and having their perspectives and voices heard.

However, as much as Critical Disability Studies embraces this emancipatory paradigm, it also challenges it by questioning its devaluing of the researcher’s conceptual contribution and critical-interpretive skills (Meekosha and Shuttleworth, 2009). This argument is particularly salient for work with individuals with ID, wherein researchers are needed to interpret inaccessible academic information for use in unpacking and making sense of the experiences and perceptions of people with ID. Furthermore, scholars are needed to reify that information, transcending the academe and making it accessible to service providers, family members, other support persons, and most importantly to the individuals with ID themselves. Finally, it is also the researcher’s role and responsibility to publish that information and contribute the voices of individuals with ID to the production of knowledge. People with ID who want to participate in research do so largely because they want to improve their quality of life. They believe that this can be accomplished by helping researchers to understand their experiences and opinions (McDonald et al., 2012), so that their ‘situated knowledge’ (e.g. Garland-Thomson, 2005) as a person with ID may be utilized to improve the lives of others with ID (McDonald, 2012; McDonald et al., 2012; White and Morgan, 2012).

Laying the foundation for dyadic interviewing

The methodology of dyadic interviewing is informed by standpoint theory in that it recognizes agency of the individual with ID in identifying the person they feel best supports them. Subsequently, doing so limits the potential for bias on the part of the researcher and support persons who may want to answer for the person with ID, in their ‘best interest’, rather than respecting their choice of who they want representing and supporting their participation. The fundamental element of dyadic interviewing is that its very structure affords individuals with ID the opportunity to make that choice. This is not to say that the individual with ID cannot ask his or her support persons for advice or for assistance in making the decision, but it ensures that decision is that made by the individual with ID—it is self-determined.

Dyadic interviewing is also informed by disabled feminist scholars’ work on interdependence. At its core, discourses on disability have a rhetoric of independence. Independence is a fundamental issue for people with disabilities because it refers not just to a need for self-reliance but also to a need for self-determination—the ability to choose and control the ways in which one lives (Morris, 1998; Reindal, 1999). There is a gross disparity between people with ID and the general population regarding the extent to which they control their own lives. It is for this reason that self-determination and choice are crucial to the study of contemporary issues in ID (Stancliffe, 2001). In recent decades, disability scholars have critiqued conventional notions of independence in favor of an ideology of interdependence, employing a nuanced understanding of dependence and a valuing of interdependent social relationships (Lloyd, 2001; Priestley, 2001; Reindal, 1999; Walmsley, 1993; Wendell, 1996). This involves recognizing that dependence is not one end of a reductionist dichotomy. The relationship between independence and dependence is more complex, and the two are not necessarily mutually exclusive.

Dyadic interviewing is an interdependent methodology because instead of ignoring, attempting to control for, or otherwise creating an illusory division between people, it recognizes the value of interconnected relationships and contextualizes in such a way that retains focus on the person with ID as the unit of analysis. Furthermore, it does not hold people with ID to the unrealistic expectation that they be ‘able’ to participate in the interview while unsupported, ‘independently’. For many, such expectations in and of themselves can be disabling in the social model sense: creating a disabling environment, wherein the researcher contributes to the social construction of ID.

Understanding ID as a social construct

In the United States, people with disabilities have a long history of oppression and institutionalization that continues today. Often this is because disability has been defined using deficiency models, frequently referred to as the medical model, which posits that ‘disability’ is a deficit or problem within the individual that needs to either be fixed or eradicated (Carey, 2003; Oliver, 1996; Pfeiffer, 2002; Rioux and Bach, 1994). Deficiency models are problematic because they stigmatize people with disabilities as being less-than-whole, personified by beliefs about their disability rather than recognizing their personhood. Historically, it is this justification that has been used as a form of social oppression to deny the rights of people with disabilities (Barnes and Mercer, 2003; Baynton, 2001)—dehumanizing people with ID in particular (Carlson, 2010b).

Disability studies scholars offer dissenting viewpoints to such an approach, chiefly among them, the social model of disability. The social model holds that disability is not inherent in the person, but rather it is society’s inability to meet their needs that is disabling. The social model focuses on the systemic, socially constructed barriers and restrictions that people with impairments face, and thereby removes blame from the individual, transferring it to society. Traditionally, disability has been approached from a positivist perspective, reliant upon a scientific process of classification and labeling of individuals inherent within the medical model (Hahn, 1993; Marks, 1999; Rapley, 2004; Siebers, 2001; Smith, 1999). In many respects, ID can be seen as anathema to the medical model because it cannot be observed objectively, measured, or ‘cured’ (Siebers, 2001; St. Claire, 1993). Attempting to view ID as pathology places the focus on an individual’s limitations, comparing him or her to a standardized nondisabled norm that serves to enhance differences (Davis, 2006; Siebers, 2001; Smith, 1999).

Within the last half-century, a sociological approach to understanding ID has garnered a great deal of attention. The theory of the social construction of disability differs from the social model in that it posits that ‘reality’ is socially constructed, created, and defined (Bogdan and Taylor, 1989; Rapley, 2004; Siebers, 2001; Smith, 1999). The conception of reality is seen as having many possible interpretations. For instance, in 1989, Bogdan and Taylor wrote a poignant article on the social construction of humanness through observing the relationship between people with severe ID and their nondisabled caregivers. The authors found that caregivers involved in accepting relationships, where they attributed thinking to the other, often counter to professional opinion, permitted them to see the individual with ID as valued and loved human beings. Rather than allowing individuals with severe ID to be defined solely by their disability, the process of attributing thinking enabled caregivers to construct a social place for this othered group whose personhood has been so questioned (Bogdan and Taylor, 1989):

Who is or is not considered [intellectually disabled] hinges on arbitrary and professionally controlled definitions and classification procedures. The construct of [intellectual disability] exists in the minds of those who label other persons, and not those so labeled. (Taylor, 1996)

This reality is a function of institutional landscapes and, as a result, our understanding of it must consider the sociopolitical environment as well as the boundaries placed upon it. Whereas limitations of individuals with disabilities within deficiency models are viewed biologically and cognitively, in the social construction model, these limitations are thought to be imposed by political and social forces corresponding to public attitudes (Hahn, 1993; Smith, 1999). Accordingly, the environmental restraints that predicate disability are the result of social attitudes of the nondisabled majority, differing materially from the social model of disability. Indeed, the social model has been heavily criticized for not engaging ID conceptually, and thereby excluding individuals with ID from such scholarship (Chappell, 1998; McClimens, 2003; Rapley, 2004). While some British scholars have endeavored to bridge this gap by reconceiving a social theory of impairment (Chappell et al., 2001; Goodley, 2001, 2004; Goodley et al., 2003), social constructionism remains the prevailing viewpoint among ID researchers in the United States.

The multiplicity of labels for the concept of ID is epistemologically problematic (Goodey and Stainton, 2001; Rapley, 2004). Particularly, given that to a large extent the meaning of ID and what it means to be a person with ID are so socially constructed and may differ between cultures (Bogdan and Taylor, 1989; Finlay and Lyons, 2005; Goodley, 2001; Goodley et al., 2003; Goodley and Roets, 2008; Keith and Schalock, 2000; O’Hara and Bouras, 2007; Rapley, 2004). Regardless, social and diagnostic categories are imposed to construct groups of people labeled as intellectually disabled and typically categorized as having mild, moderate, or severe levels of impairment. The most enduring expression of this phenomenon relies upon an intellectual functioning quotient, an IQ score of approximately 70 or below (American Association of Intellectual and Developmental Disabilities (AAIDD), 2008).

Currently, the accepted working definition of ID attempts to unify the perspectives of the medical model and social constructionism as ID is seen to be a ‘disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills’ originating before the age of 18 years (AAIDD, 2008; Schalock et al., 2007; Wehmeyer et al., 2008). Adaptive skill areas include communication, leisure, health and safety, self-care, home living, self-direction, functional academics, community use, and work (Dunn and Crouch, 2001; Wehmeyer et al., 2008). This widely accepted definition recognizes the importance of social factors in interpreting cognitive and biological functioning and asserts that the classification of an individual as intellectually disabled must take the context into consideration relative to one’s peers and culture. Moreover, one’s cultural and linguistic differences should be taken into account as well as their communication, sensory, motor, and behavioral factors, recognizing that within individual limitations often coexist strengths. This viewpoint argues that limitations must be necessarily described in order to develop an effective individualized plan of needed supports, and the appropriate supports should be provided in an approach that improves the functioning of the individual with ID (AAIDD, 2008).

From a Critical Disability Studies perspective, such definitions are inherently problematic as they are reductionist and oversimplified, categorizing human beings as variables and reducing them to labels that have been pervasively stigmatized. However, that does not mean that categories are not useful or important to understand as an institutional phenomenon. These categories are useful in communicating between researcher and practitioner disciplines; in providing operational definitions for recruiting and selecting participants; and in comprehensive dissemination of research findings. Moreover, understanding how and why these categories were constructed is crucial to analyzing the data collected from a Critical Disability Studies perspective.

Including ID in qualitative research

The self-advocacy movement, in conjunction with the reception of participatory and emancipatory paradigms in disability research, has led to the advancement of techniques to meaningfully engage people with ID in research (Perry, 2008). In arguing for the further inclusion of perspectives of individuals with ID in research by using qualitative methods such as interviews, Mactavish et al. (2000) identified three main strategies in existing research for addressing concerns regarding reliability and validity not just of the participants’ responses but also of the researchers’ interpretations. These strategies begin with a presumption of credibility, which says there is inherent value in understanding and learning from all perspectives on an issue, including those who may be seen as not having much to offer (Mactavish et al., 2000). This calls for researchers to be willing to accommodate and adapt, so as to enable meaningful participation, including modifying data collection procedures where necessary. Second, employing multiple and intensive data collection strategies helps in translating this presumption of credibility into the collection of meaningful data. Finally, concrete data collection strategies may be more effective for qualitative research involving people with ID and can be facilitated by using a structured interview guide (Mactavish et al., 2000). This practice can be useful in helping researchers to focus their questions by avoiding needless abstraction that may confuse or fatigue participants.

Prosser and Bromley provide several techniques to ensure a successful interview in research involving individuals with ID that has been categorized to take into consideration the venue, opening the interview, question style, and question format (Prosser and Bromley, 1998; see Perry, 2008). With regard to opening the interview, the researcher should take time to build rapport and trust by not jumping immediately into the interview. Additionally, spreading the interview over two or more sessions relieves pressure on both the interviewer and interviewee and reduces participant fatigue. Furthermore, multiple interviews with the same person can approach internal validity by providing for consistency over time (Perry, 2008) and allow opportunity to ask additional questions and gain corrective feedback (Reinharz and Davidman, 1992). While similar assertions can be made of dyadic interviewing in general, these concerns are of particular importance for interview participants with ID.

While qualitative methodologists have problematized the constructs of reliability and validity, they remain fundamental to conducting empirical qualitative research (Denzin and Lincoln, 2003; Kirk and Miller, 1986; Morse et al., 2002; Patton, 2002). Strategies of trustworthiness have developed in response to ensure rigor that differentiate and expand upon how reliability and validity have been approached within a reductionist, rationalistic quantitative paradigm. While some scholars understandably prefer to use terminology that reinforces this distinction, Morse et al. (2002) argue that using the terminology of reliability and validity is important for researchers who need for their work to translate across mainstream scientific fields, policy, and practice, such as the interdisciplinary field of ID research.

Concerns about validity and reliability continually arise in ID research regarding questions of competence and intellectual capacity, in that the responses of people with ID may not be reliable or valid due to their intellectual impairment and perceptions regarding competency and intellectual capacity. However, if we are to truly value the perspectives and involvement of people with ID in research, then, we must address these concerns responsibly, in a way that recognizes the presumption of credibility and that does not devalue and further marginalize this group. Critical Theory, therefore, becomes an invaluable tool in situating reliability and validity, rather than being positioned as antithetical to it.

For example, the incidence of acquiescence and response bias in studies involving people with ID can pose a particular obstacle to the researcher trying to achieve reliability and validity (Dattilo et al., 1996; Finlay and Lyons, 2001; Goodley and Rapley, 2002; Mactavish et al., 2000). Researchers should be informed about acquiescence and take into consideration the possibility that research participants may exhibit submissiveness, suggestibility, or have difficulty in understanding the content of the questions being asked or the way in which they are being asked (Finlay and Lyons, 2001).

Goodley and Rapley (2002) offer a supplementary argument intended to critically question explanations of participant acquiescence that can be perceived as placing the burden of acquiescence on the individual with ID rather than attributing it to the researcher themselves. In some cases, it may be the reluctance of the interviewer to recognize and accept the answer being given or their inability to understand the given response in context. In this way, the researcher may be subject to or contribute to the social construction of ID and thereby become a vehicle for the production of acquiescence bias. Accordingly, while research involving people with ID must begin with a presumption of credibility, it also requires considerable reflexivity:

Starting with a presumption of credibility, therefore, is not enough. Researchers must engage in ongoing reflection to ensure that participation is not limited by well-intentioned but potentially misguided assumptions about what people may or may not comprehend. Furthermore, an assumption of credibility must be reflected in data-collection strategies that incorporate the supports required to maximize meaningful participation … (Mactavish et al., 2000: 225)

Researcher reflexivity is necessary to ensure that this credibility is upheld (Goodley, 1999; Patton, 2002). While reflexivity can be used as a strategy to resist Othering in academic writing (Krumer-Nevo and Sidi, 2012), it is important to be further aware that in research with individuals with ID, accommodations need to be made in order to facilitate equal opportunity and access to research participation within the social relations of research production (McDonald, 2012). It is vital that qualitative researchers in this area recognize the need for methods that integrate techniques promoting interdependence and support and that there be a methodology available that reflects this priority. Dyadic interviewing aims to provide researchers with a tool to help accomplish this purpose.

Dyadic interviewing

Dyadic interviews can be conducted separately, jointly, or in combination with each other and have largely been used to study relationships between people with dementia and their carers (Forbat, 2003; Hellstrom et al., 2005; Svanstrom and Dahlberg, 2004) and couplehood relationships (Allan, 1980; Morris, 2001b; Ross and Holmberg, 1992; Veroff et al., 1993). Separate interviews enable each individual to respond from their own perspective, ‘capturing the individual within the dyad, without forgoing the dyadic perspective’ (Eisikovits and Koren, 2010: 1643), whereas conducting interviews jointly results in a shared narrative (Arskey, 1996). This approach has been effective in observing interaction between couples (Allan, 1980), ‘asking them to represent themselves not just as individuals but also as concurrent participants in a relationship; mutually created meaning is highlighted as they speak’ (Morris, 2001b: 558). However, this runs the risk of generating acquiescence bias, particularly in the context of dyads involving one member with ID, where power is not distributed equally (Antaki et al., 2007; Goodley, 2005; Goodley and Rapley, 2002; Jingree et al., 2006; Nierse and Abma, 2011; Peter, 2000; Phillips, 2007; Thompson, 2003). Furthermore, using a shared narrative approach risks overpowering the voice of those individuals with ID involved. It is for this reason that it is crucial from a Critical Disability Studies perspective that precedence is given to the responses of participants with ID as the unit of analysis rather than dyad itself. Accordingly, weight must be given to the person with ID as the primary source of information. The data collected from the key support person functions as a secondary source that parallels their supportive role and is contextualized accordingly during analysis.

Utilizing a dyadic approach will allow for comparisons, cross-checking, and triangulation (Morris, 2001b); however, there remain concerns over respondents speaking for people with ID rather than allowing them to speak for themselves. By asking participants with ID to identify the key support person, this removes an element of paternalism on the part of the researcher and facilitates the role of those individuals with ID in the research as having choice and a voice in how they are represented. The role of the key support person as part of this research is similarly supportive—mirroring their social role. This adaptation is a technique intended to impute deference and respect (Goffman, 1982) toward the individuals with ID and to neutralize the power dynamics at play in research interactions.

Dyad interview structure

The dyad technique developed for interviewing individuals with mild to moderate¹ levels of ID involves three stages of interviews (see Figure 1). Stage 1 consists of a preliminary interview with the person with ID to build rapport and trust, to gather background information, and to get a general impression of the participant’s experience and their supports. During this interview, participants with ID identify the key support person who they would like to be interviewed for the second stage of the research.

Figure 1.

Dyad technique.

The purpose of the second stage is twofold: (1) to support or complement the first interview and (2) to inform the third interview. The interview with the key support person serves to provide complementary information and add validity and reliability to the information gained through the first interview. This additional perspective allows for the researcher to gain greater depth of understanding, which facilitates in preparing for the third interview with the person with ID and helps identify additional topics or questions to pursue and to identify where probe questions may be most effective. However, it is important this interview with the key support person not be viewed as ‘member checking’, but rather as a method of cross-checking.

The purpose of the third interview is to meet for a second time with the participant with ID and, informed by the second interview, to gain a deeper understanding. Similar to the second interview, this also serves as an opportunity to verify the information given by the participant’s key support person and strengthen the validity and reliability of the data. Furthermore, the third interview provides an opportunity to incorporate any changes that may have happened over time, since the first interview.

Considering joint dyadic interviewing

Dyadic interviews can also be conducted where the unit of analysis is not the individual with ID alone but rather the dyad itself. This would deviate from the technique outlined earlier in two significant ways. First, it should be done using a joint interview approach rather than a separate one, which changes the structure of the interviews. Second, it would require observation of the way the dyad interacts during the joint interview. Figure 2 outlines the four joint interview structures possible. The technique used should be driven by the research question, choosing an interview structure that would be most effective in addressing the question and ensuring that the unit of analysis is appropriate for that question.

Figure 2.

Joint dyad interview structures.

It is critical to recognize that the unit of analysis in joint dyadic interviewing is the dyad itself, not the individual with ID, and that should be reflected in both the analysis and findings. However, this technique is outside the scope of the current research and requires further critical inquiry (1) to ensure that participants with ID are given equal voice and (2) to determine how the key support persons are contextualized as they are no longer providing just supportive, secondary information, but rather they are now one of the primary sources. At this point, while joint dyadic interviewing is interdependent, it is unclear the extent to which it can be informed by a Critical Disability Studies ideology, the key difference being the centrality of the person with a disability.

Building rapport and trust

In qualitative research, building rapport and trust is essential to gaining entry to conduct fieldwork and enhances the trustworthiness of the data (Mactavish et al., 2000; Patton, 2002). This involves negotiating with gatekeepers as well as gaining physical access to begin collecting data (Nicholson et al., 2012; Patton, 2002). It is not uncommon for researchers to encounter difficulty when trying to conduct an interview with someone with ID, wherein a parent, guardian, or staff member wants to remain present during the interview. This presents a dilemma to researchers who are concerned with issues that may arise regarding confidentiality, bias, and proxy responding. For instance, the presence of family or a staff member can affect the way that a participant relates to the interviewer, the rapport they have built, and may engender acquiescence or response bias by introducing external power dynamics into the interaction between interviewer and interviewee. Furthermore, the participant may not feel comfortable disclosing certain information when that other person is present because while their responses will remain confidential and anonymous from that point forward, they are no longer so when another person is present during the interview itself. An interview can therefore be a difficult and ethically challenging scenario for researchers to navigate (for a discussion, see Aman and Handen, 2006; Iacono, 2006a, 2006b; McVilly and Dalton, 2006; Ramcharan, 2006).

Yet, successful recruitment of participants with ID frequently involves support persons who act as intermediaries and who may be suspicious or cautious about research participation, likely because that is part of their role in the dyadic relationship. Accordingly, motivators for research participation are needed both for people with ID as well as for their support persons (Nicholson et al., 2012). Using dyad interviews as an interview technique helps to negotiate the interaction in a way that is beneficial to all parties involved: the person with ID, the support person, and the researcher. This technique builds trust and rapport with the support person, thereby affording the researcher to get their foot-in-the-door and begin cultivating a relationship, building trust and rapport with the individuals with ID themselves. Dyadic interviewing accomplishes this by providing a structure that recognizes the respective roles of participants with ID as well as their supports while retaining a reasonable amount of flexibility with regard to the development of one’s interview guide and how to best obtain information that would address the research question(s).

Having structure helps researchers in clearly communicating expectations about participation, thereby addressing some of the intermediaries’ concerns and providing a space for dialogue about other concerns that may be impeding recruitment and participation. Furthermore, it does so in a way that is proactive and anticipates interdependence rather than attempting to control for or disregard it, which may weaken ecological validity (Brewer, 2000). In summation, the structure of the dyadic interview technique communicates to support persons that they will have an opportunity to give input, to be included, and to contribute meaningfully to the conversation. It gives them a supportive role while still retaining a central focus on the individual with ID. Moreover, multiple interviews allow time to build trust while also demonstrating that the researcher is interested and invested in understanding the experiences of individuals with disabilities holistically (Mactavish et al., 2000; Nicholson et al., 2012). This parallels the findings of prior ID qualitative research methodologists (Taylor and Bogdan, 1998).

Additionally, the structure of dyadic interviews facilitates the participation of individuals with ID, who should not feel overly pressured to answer questions ‘correctly’ during the first interview. Instead, participants have the option of asking the interviewer to follow-up with or defer to their key support person on questions they do not feel confident in answering. This defines a space for choice and self-determination in the research process actively, as the interview progresses, as well as structurally as the individual with ID chooses the key support person who will be facilitating. In these instances, any information obtained from the key support person must then be corroborated during the final interview with the participant with ID. Furthermore, because they are going to be interviewed a second time, there is less pressure for participants with ID to try and come up with what they feel is the ‘right’ or perfect answer to a question. Subsequently, the dyadic interview technique has potential to be implemented as an interdependent method of accommodation for people with ID. Taking steps to make accommodations for people with ID contributes significantly toward building rapport and trust because it communicates that the research is invested in understanding what they have to say and considers it important enough to make an effort to accommodate for impairments and enable equal participation. This dyadic interviewing technique ensures that such accommodations are integral to the research design.

Discussion

There is a great need for advancements in qualitative interview methodology in the field of ID research. Dyadic interviewing shows great promise for improving the participation of people with ID in research, for mitigating some of the difficulties that arise during fieldwork and providing researchers with a structure that can improve the quality of their research and facilitate communication with participants and intermediaries while conducting ID research. To an extent, existing research has employed various formats of separate or joint dyad approaches to interview people with ID, family members, and staff. However, many studies, such as those referenced earlier on employment, that are dyadic in nature do not engage with literature on dyadic interviewing, which is likely due in part to a lack of awareness about this developing methodology. This can be particularly problematic if the unit of analysis becomes obfuscated. Furthermore, lack of a cohesive structure increases the potential of introducing paternalistic power dynamics. The use of a Critical Disability Studies ideology in guiding this approach to dyadic interviewing mitigates this concern by incorporating what scholars have learned through emancipatory disability research, not holding individuals with ID to normative expectations regarding the unrealistic ideals of ‘ability’ and ‘independence’. Where this technique differs critically is in how the key support person is chosen and the purpose of their involvement, recognizing the value of interdependence and support. Accordingly, dyadic interviewing involving people with ID is not simply a strategy for approaching reliability via triangulation, but it is also an accommodation that promotes choice and self-determination in research participation. The next step in the development of this methodology is for researchers working in the field, across a variety of disciplines, to begin using dyadic interviewing in different contexts and research environments. It is only through such real-world applications that we can move forward in testing the boundaries of this methodology, thereby gauging its effectiveness and identifying possible limitations.

While the dyadic interviewing technique has been developed for use among populations with ID, the possible applications extend beyond this immediate scope. Dyadic interviewing may be an effective strategy for other groups that have experienced similar stigma and who may be similarly situated in research production. If so, then it could be used to interview other groups with developmental or cognitive impairments such as Autism, Asperger’s, Traumatic Brain Injury, Alzheimer’s, and various forms of dementia. Furthermore, there is potential for it to be used in some cases of mental illness or psychiatric disability where there have been episodes of dissociation or where the tenuous concept of one’s ‘competency’ has been questioned.

It is possible that in some cases, dyadic interviewing may result in more discrepancies than agreement between participants. However, this should not be assumed to be a shortcoming of the method, but rather indicative of success. If the researcher enters into dyadic interviewing expecting agreement and corroboration, then they are introducing researcher bias. Points of disagreement between dyad participants are valuable and rich sources of information, limited only by the researchers’ ability to interpret them. For instance, consider that Finlay and Lyons (2005) found in their research that among 36 individuals identified by staff and service providers as having ID who were interviewed, only 8 people identified unquestionably as having ID. This discrepancy was found to be a rich source of information about how people with ID view their own identity, the social categorization of their impairment, and the stigma attendant. In this vein, elements of researcher reflexivity and reciprocity are essential to the dyadic approach. They impute a sense of deference and respect that does not assume the interviewer knows more than the participants by ascribing preconceived expectations about the relationship between the dyad and the types for responses that should be given rather than interpreting and contextualizing those that are given.

Footnotes

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Notes

Author biography

Kate Caldwell is a doctoral candidate in Disability Studies at the University of Illinois at Chicago and received the Chancellor’s Graduate Research Fellowship to support her dissertation research on how people with intellectual disability are participating and supported in social entrepreneurship. She has presented and published in the fields of disability studies, intellectual and developmental disability, sociology, feminist research methodology, employment and vocational rehabilitation

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