“Being Heard”

The social model of disability and SRV

The foundational tenets of the social model and SRV advocate the importance of inclusion of IWDD as participants in practice research. The social model defines disability as an impairment of society to accommodate individuals with special needs rather than to put the onus on an individual with disability to fit into typical society (Burkhardt, 2004; Oliver, 1996; Shakespeare, 2006). The main focus is on breaking down societal barriers preventing individuals from fully participating in the community (Race, Boxall, & Carson, 2005; Taylor, 2005). This paradigm has served to empower individuals with disabilities to fight discrimination, network, and develop advocacy groups. Qualitative research methods are a good fit for research with IWDD in that qualitative epistemology recognizes the participant’s own experience as valid data. Enabling IWDD to express themselves is a vital component of understanding each individual’s point of view. Assuring that IWDD can participate in research and have their experiences inform policy and practice is a social justice issue.

SRV is a prescriptive conceptualization initially articulated to address disenfranchised groups. Having evolved from the theory of normalization, SRV is concerned with the enhancement of a person or group’s social images and competencies (Wolfensberger, 1983) that are at risk of social devaluation (Osborn, 2006). SRV might influence the individual’s social image and personal competencies via the type of social system within which an individual functions. Accommodations (physical and social conditions) made in the environment to enhance positive perceptions of the IWDD by others are a result of SRV efforts. With respect to qualitative research protocols, one would anticipate enhanced self-perceptions of IWDD as being “valued” and “heard” when they are active participants in research.

The social model of disability (Oliver, 1996) and SRV (Wolfensberger, 1983) provide a framework for the creation of a new conceptualization in disability practice. The social model of disability may be viewed as the conceptual framework within which SRV might define the physical modifications that need to be made in the social environment in order for these accommodations to be successfully enacted. In utilizing qualitative research methods, this would translate to implementing appropriate assistive communication technologies to enable individuals with speech impairment to describe their personal journeys.

IWDD want to tell their stories. There is clinical value in self-expression, participation, and enhancing self-perceptions (McDonald, Kidney, & Patka, 2013; Nind, 2008). “Being heard,” that is, understanding IWDD’s experiences from their point of view, is imperative for developing salient practice approaches to enrich life quality as well as in empowering these individuals to feel productive and valued. This premise is further supported by recent “person-centered approaches” which are comprised of a constellation of methods that place emphasis on giving “voice” to the person and facilitate planning initiatives with their wants, needs, and point of view in mind (Mount, 1992). A combined social model/SRV lens highlights the importance of including IWDD in participatory research protocols, as well as keeping to the basic principles defining person-centered planning.

Qualitative methodology with IWDD

A review of the literature reveals several recurring elements warranting consideration when utilizing qualitative techniques with persons who have communication and cognitive impairments. Methodological issues include gaining access and informed consent practices (including determination of competence and assent; Cousins & Milner, 2007; Dye, Hare, & Hendy, 2007; Kellett & Nind, 2001; Kelly, 2007; Marshall et al., 2012; Minkler et al., 2002), privacy and confidentiality concerns, and utilizing narrative discourse techniques in interviewing individuals with receptive and expressive language difficulties.

Once a research project is developed, access and consent may change the characteristics of the participant pool (Welsby & Horsfall, 2011). Parents/guardians are the “gate keepers” to accessing participants when they have been deemed legally incompetent to consent (Cousins & Milner, 2007; McDonald & Raymaker, 2013). With regard to protection and prevention of abuse, guardians may have a sincere desire to protect their family members, yet this effectively shuts off the voice of that particular IWDD and may limit research with whole classes of people. Although hazardous to compare children’s issues with those of IWDD (with lower cognition), both are deemed legally incompetent to consent to research; nevertheless, they may wish to participate. Some may doubt their child’s ability to comprehend and/or verbally participate sufficiently to meet the study’s objectives (Mitchell, 2010). Cousins and Milner (2007) explored access with prekindergarten children and found that their desire to participate is not necessarily concordant with their guardian’s wishes. We can assume this is likely to be true for IWDD as well. Mitchell (2010) notes the protective nature of guardians as a barrier to including individuals who may have assented to participation. Several authors recommend that consent be an ongoing, negotiated process (Cousins & Milner, 2007; Kellett & Nind, 2001; Kelly, 2007; Minkler et al., 2002; Shaw, 2008; Welsby & Horsfall, 2011).

In addition, researchers should focus on maintaining the dignity and worth of the person (Dalton & McVilly, 2004; Dye et al., 2007; Marshall et al., 2012). Privacy and confidentiality must be preserved despite the fact that the participant may not even be aware that these rights have the potential to be compromised (McDonald & Raymaker, 2013; Swain, Heyman, & Gillman, 1998). McDonald and Raymaker (2013) outline several components important to the preservation of ethical research standards for IWDD. First, they underscore the vulnerability of IWDD to be victimized and exploited in research, yet, as previously mentioned, they are also at risk of exclusion by guardians when they have a desire to participate. Next, susceptibility to coercion due to comprehension issues is also a concern. Finally, they identify the need for altered societal perceptions on the part of policy makers and grant funders, so that they will facilitate research projects that address issues related to this underserved population.

Another concern involves the way data collection occurs and its perceived validity related to physical communication barriers (expressive language) and/or comprehension barriers due to lower cognitive functioning (Biklen & Moseley, 1988; Bronken & Kirkevold, 2013; McDonald & Raymaker, 2013). The development of advanced communication technologies has enabled IWDD to participate in their social contexts and now in qualitative research protocols. Several strategies are identified in the literature for interviewing IWDD who have expressive language difficulties (Bronken & Kirkevold, 2013). These strategies consist of the use of a multipronged approach involving assistive technologies, communication systems (Mitchell, 2010; Welsby & Horsfall, 2011) such as voice output devices, communication boards, picture symbols, and familiar others to interpret their speech (Biklen & Moseley, 1988; Nind, 2008). While an increasing number of qualitative researchers are incorporating IWDD in their studies (Mactavish, Mahon, & Lutfiyya, 2000; Marshall et al., 2012; McDonald et al., 2013), scant information is available on research with IWDD with expressive and receptive communication impairments due to physical and cognitive disabilities, respectively, and in combination. This article seeks to address this gap in the literature.

The underlying study design

Open-ended interviews were conducted with a purposive, convenience sample of 20 IWDD who reside in a residential facility, in a group home, or with their family of origin. Qualitative methods were chosen in order to gain information from the participants’ experiences. An interview guide was crafted after a careful, exhaustive literature review on the types of contextual antecedents that impact identity formation processes. The interview guide focused on participants’ experiences with having disability and the perceived impact on their life quality. Interviews were audio-recorded, transcribed verbatim, and coded in ATLAS.ti. Open coding, constant comparison, and thematic analysis were utilized to generate theory surrounding the processes involved in the development of self-perceptions.

Participants’ diagnoses include Lesch-Nyhan disease, spastic quadriplegic cerebral palsy, and spina bifida. Ages ranged from 19 to 55 (13 males and 7 females). Cognitive levels varied from mild retardation to average intelligence (IQs ranged from 55 to 97) and races were varied (5 African Americans, 4 Hispanic, and 11 Caucasian). Participants have multiple co-occurring conditions with anywhere from 10 to 16 diagnoses including an assortment of mental health diagnoses. Attempts were made to engage participants who both do and don’t participate in the arts program but the majority of participants have had some exposure. Communication styles of participants varied; some had very high ability to verbally express themselves, others were nonverbal by conventional means but able to communicate by augmentative assistive technology such as Dynavox, voice output switches or utilize a communication board system. The experience of data collection for the underlying study is what motivated the focus here on methods for research with IWDD.

Recruitment and consent/assent and withdrawal

Participants were recruited by word of mouth, suggestions from staff members, and recruitment events that occurred at an Adult Day Services program. Once interest was indicated, guardians were approached for consent for those who were not deemed legally able to consent independently. Attempts were made to provide a clear, concise explanation of the project. However, well-meaning guardians under the guise of protection felt that any benefit of participation was outweighed by the inherent risks of discussing potentially stressful topics.

Two guardians refused to provide consent although their (adult) children were interested in participating in the project. One felt that their child would not be able to comprehend sufficiently to provide accurate information. Although this potential participant was fully verbal, her perceived inability to comprehend the interview questions was of concern to the guardian. The second guardian believed that her son was experiencing distress due to recent personal losses and did not want him subjected to questions that may elicit additional stress. Most guardians were not located locally, so consents had to be mailed and discussed over the phone. Expressing the nuances of the project and attempting to develop relationship was hampered by telephone contact that may have been easier to negotiate within the context of an in-person meeting.

Throughout the course of the project, two individuals decided to withdraw before completion. The author made a point of checking in with each participant prior to every interview and clarified that they may terminate their participation at any time with no ill effects or damage to our relationship or their care. The two participants who elected to withdraw decided the study “was not for [them].” The potential for coercion due to power and social desirability factors may provoke some individuals to continue when they would rather not. Attention needed to be paid to body language and other nonverbal cues such as behaviors (not showing up on time, cutting sessions short, etc.), yawning, and overall distractibility. McDonald and Raymaker (2013) suggest that IWDD’s self-determination in making decisions to participate may need to be overtly protected in order to achieve autonomy. As a result, the author did not feel it appropriate to explore the participants’ decision to withdraw further than what they initially offered as a rationale. A loss of two participants from a total pool of 22 participants was considered an acceptable attrition rate.

In order to ensure comprehension, consent materials were broken down and communicated in basic language. The consent process also included careful observation of body language, repeating and reframing of material, and repeatedly checking in (at each interview session) for continued interest in participating. Respect for personal care needs and medication regimes also require attention when dealing with medically complex participants and their care schedules. These factors can become complicated parts of the process when negotiating an acceptable time, place, and duration for interviews.

Interviewing individuals with language impairment

Various challenges arose while conducting in-depth interviews with individuals due to their physical disabilities. Specifically, some individuals with expressive language abilities presented with communication patterns consisting of short sound bites due to issues surrounding muscle coordination and breath control. “Communication partners” (care providers who assist with expressive language) enable IWDD to communicate in their day-to-day lives, but in the research interviews, this third-party interpretation yields minimal text spoken directly by the IWDD. This makes analysis challenging, when it is less clear which data are considered valid. In addition, developing rapport with the participant and gaining familiarity with their communication strategies was imperative in enhancing understanding between participants and the researcher. Relationship building fostered the development of trust; this meant that over time, IWDD revealed information that was not provided in initial interviews. Development of such a relationship involves taking time for a series of shorter sessions rather than single sessions. Time constraints and finances may make this difficult to achieve for many researchers.

Another important consideration when interviewing individuals with language impairments surrounds the need for the researcher to assume an active role in the interview process while being wary not to guide the discussion toward the researcher’s objectives. I found it important to summarize, probe, and repeat responses to ensure complete understanding of (a) the participant and (b) my interpretation of the participant’s meaning. Active participation of the researcher runs contrary to traditional qualitative techniques that promote probes but encourage the participant to provide the majority of the discourse. When working with IWDD who have spastic cerebral palsy, varying degrees of expressive language abilities are presented. Difficulties in coordination of muscles and breath control leading to fatigue and frustration of the participants can negatively impact the interview. The researcher should be aware of the participant’s body language which may indicate that a session needs to be cut short. In addition, it is incumbent on the researcher to use active listening skills in order to figure out what the person is trying to communicate. The interview becomes an interactive conversation with the researcher constantly summarizing, checking in, and making sure the meaning is understood and completely fleshed out. The following is an excerpt where a participant with spastic quadriplegic cerebral palsy reflected how having disability has affected her life:

The following exchange with a young man about what he likes most about himself and what things he wishes he could change…

As can be seen in the previously mentioned interview excerpts, an interactive discussion ensues where the researcher needs to be aware not to guide the questioning but rather to follow the participant’s lead. It was also important to make sure the respondent completely finished his or her thought on a particular topic. Active listening is a skill that most social workers have as part of their clinical repertoire. Being aware of nonverbal cues such as body language, signs of fatigue, difficulty with breath control, and tone of voice is crucial in facilitating effective communication. Constant repetition and clarification become part of the routine for interviews with persons who are challenged by verbal expression. In order to ensure a true interpretation of the participant’s message, there is a need to summarize understanding of their meaning on a consistent basis. A great degree of time and patience is required. This also creates concerns about data validity due to the higher level of researcher verbiage. Multiple interview sessions may need to be factored into the research time schedule (Finlay & Lyons, 2001).

The participants in this study employed a variety of communication devices and systems which frequently required the assistance of others in setting up the devices and in the interpretation of their responses. The need for assistance was discussed in the recruitment phase of the project and oftentimes the participant requested that the “communication partner” be available to assist. In effect, a fragile balance emerged between confidentiality in the face of having others present versus getting the message out at all. This presented an additional limitation that needs to be addressed, understood, and sensitively negotiated with the participant.

Role shift confusion when clinician wears a researcher’s hat

Research is challenging when the researcher is a clinician within the agency; in this case, the researcher is a clinician in a different part of the residential facility where participants were recruited. When acting within the researcher’s role, some participants may not necessarily understand or want to accept the boundaries between the clinical and research roles. Within the residential community, there is a very small social work staff, so the researcher, while not working directly with the participants, is familiar to them as a staff member. Participants periodically made requests outside the researcher–participant relationship, which necessitated role clarification and referral back to their primary social worker on an ongoing basis. It was imperative for the researcher to recognize attempts at triangulation and to address them in a nonjudgmental, problem-solving manner. Alternatively, issues arose with regard to preserving confidentiality within the confines of a closed system (more problematic for the residential participants). Disclosure of information only occurred at the request and direction of the participants. Most of them were proud to participate and wanted to share their research experiences with their social workers or parents.

Although most of the participants were recruited from the residential facility or Adult Day Program, a few were living with families of origin, which presented another set of research conundrums. Meeting with participants in family homes and attempting to preserve confidentiality proved challenging. In one instance, a participant got very emotional discussing personal conflicts and began to sob loudly. Her mother in the next room heard and ran in to see what was happening. This was understandable but did break the momentum of the interview. It may have also tempered the freedom with which the participant discussed family relationships as family members came in and out of the room throughout the session.

Role clarification needed to be discussed in this venue as well. Family settings presented environmental concerns and concrete issues they were facing; they clearly needed case management assistance. Providing families with resource and referral information is inherent to social work practice, as is assisting families in their social environments. What is the responsibility of a social work researcher when such environmental issues are uncovered during the course of a research interview? Recommendations could include referral to social services agencies and providing brochures of information and referral resources after completion of the interview process.

Being heard (informing/educating others)

This was perhaps the most pervasive theme found throughout the research project and also a specific response to an interview question about their experience of participating in the study. IWDD have a strong desire to be noticed by “others,” meaning those who are nondisabled. They perceive others as viewing them as different and outside of societal norms. As one young woman stated “we’re just human beings like everybody else…we’re still a person inside.” The need to be heard was articulated by one man “I’m just happy someone wants to listen to it…it’s an honor to be part of a study done by the university.” Coinciding with this, the need to educate others on their experiences with disability was also apparent. Another participant declared “I want people to know that it’s not so bad to live with a disability just try to find the good part of it….” One young woman spoke particularly passionately about her need to be seen by others as normal. When asked what she hoped to achieve by participating in this study, she replied “we are just like you but we need a little help that's it…Most people in the real world don’t think we have special desires ‘cause some of us can’t speak…We have the same needs, the same five senses and we are humans…I would open up their eyes and say ‘hey they’re just like us’—it’s just the fact that they are in a wheelchair.” Others wanted to announce their tenacious attitude to continue moving on despite their disabilities “Nothing stops me.” These comments illustrate that participants seem to be aware that through breaking down barriers and increasing familiarity with others in society, certain misperceptions and stigma may be battled. Clearly, the previously mentioned comments indicate a strong desire to be heard and seen by “others” through research participation. Several indicate the need to educate others that they experience life in the same manner as everyone else. Others want society to know that they will prevail despite their challenges.

Helping others

A second theme that emerged was the intent to help others through involvement in the research project. One man stated “I feel like that anyone I’ve ever spoken to…they’ve told me in some way shape or form I’ve touched them…I love that feeling…and another participant,…hopefully it will help others.” Being a mentor or an example of a person who is adaptively coping despite their challenges was a persistent theme throughout the interviews and came up several times when participants discussed their motivations for involvement in the study.

Enjoying the process

Arguably, the most important theme was that the experience was pleasurable. Feeling valued, contributing to knowledge or just making money (participants were paid US$5.00/interview) provided them with an opportunity to be engaged in a productive activity. Comments supporting this theme consisted of “It’s fun.” “It’s ‘cool,” “It’s awesome,” “I’ve loved working with you B…” and “yeah, I liked it…[making] money.” Participants overall enjoyed the attention, the prestige, and the productive aspect of participation. Participants also had a strong interest in the outcome and being kept involved over the entire research course even after their role ended. This finding is supported by Berni Kelly (2007) who asserted the importance of involving the participants throughout the course of the study and having them comment on the findings.

Recommendations for Implementing Qualitative Techniques in Research With IWDD

Implications for Policy and Community Engagement

Inclusion is at the heart of the social model of disability’s call for full integration of IWDD in the social environment. Incorporating IWDD as part of the development phase of a research project can ensure the relevance of the project from the outset. The onus is on project developers to break down the barriers that may prevent IWDD from participation; accommodations for communication and comprehension impairments must be explored and made available. Several authors propose utilization of assistive technology, familiar others, and employing various strategies to enable comprehension and expressive capacity (Kelly, 2007; Mitchell, 2010).

Kellett and Nind (2001) propose that individuals with learning disabilities should be partnering with researchers rather than merely acting as participants, having research “done” to them. Power relationships may shift when participants become active in the research development process. This also speaks to the objective of ensuring that fruitful questions are asked that are relevant to the study participants. This helps to make the research meaningful for the people it is intended to benefit. Higgins, Raskind, Goldberg, and Herman (2002) suggest that we should incorporate participants throughout the course of the project. This serves several purposes. First, it helps to maintain the participant’s interest in the project; second, it adds rigor to the analysis as a check for relevancy of themes that are identified, and ultimately it empowers participants and helps to avoid researcher bias during the analysis (Kelly, 2007). A final implication involves creating mandates for inclusion of IWDD on institutional review boards and grant funding committees. Partnering with IWDD at this level may promote parity in distribution of funds for projects that are relevant to IWDD’s life quality, ensures research validity from their point of view, and upholds the foundational principles in person-centered planning.