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Conducting research with individuals who have
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Kelly D Coons

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Conducting Research with Individuals
Who Have Intellectual Disabilities:

Ethical and Practical Implications for
Qualitative Research

Abstract

Despite the acknowledgement that individuals with intellectual
disabilities are the experts on their own experiences, these indi-
viduals have been largely omitted from the disability discourse.
Research in the field of disability has typically been done on
individuals with disabilities, rather than with them, disempow-
ering this already vulnerable population. Qualitative method-
ologies, such as Participatory Action Research (PAR), can be
employed to involve individuals with intellectual disabilities in
the research process. A review of the literature revealed a num-
ber of ethical (e.g., obtaining informed consent and assessing
capacity) and practical challenges (e.g., recruitment, data col-
lection, analytic strategy, researcher interpretation) that inter-
fere with researchers engaging in PAR. These challenges must
be overcome in order to empower persons with intellectual dis-
abilities to participate in research.

Despite the acknowledgement that individuals with intellec-
tual disabilities (ID) are the experts on their own experiences,
these individuals have been largely omitted from the disabil-
ity discourse (Kitchin, 2000). Research in the field of disabil-
ity has typically been done on individuals with disabilities,
rather than with them, disempowering this already vulner-
able population and taking away their voice. For example,
positivist research, such as research conducted in the medi-
cal field, has often diminished and silenced the voices of peo-
ple with ID and has often degraded them as “psycho-medical
curiosities” (Dowse, 2009, p. 142). Conducting research, par-
ticularly qualitative research, with individuals with disabili-
ties is therefore essential, yet limited research has appeared
to address the issues or concerns surrounding doing so.

Although qualitative methodologies have gained popularity
within the past few decades, both the quantity and quali-
ty of qualitative studies conducted with people with ID still
remains low compared to the general population (Irvine,
2010; Lloyd, Gatherer, & Kalsy, 2006). Research in the field
has been predominantly quantitative in nature, giving lit-
tle portrayal of what the lived experiences of individuals
with disabilities are really like (Bollard, 2003; Irvine, 2010;
McDonald & Patka, 2012). However, the need for qualitative
research in this population is particularly relevant as quali-
tative research “has much to tell us about the complexity of
the disability experience that other types of research do not
capture” (O’Day & Killeen, 2002, p. 12).

Volume 19, Number 2, 2013

Correspondence

Keywords

intellectual disability,
qualitative research,
consent,
capacity,
participatory action
research

[email protected]

Authors

Kelly D. Coons,
Shelley L. Watson

Psychology Department,
School of Rural and
Northern Health
Laurentian University,
Sudbury, ON

© Ontario Association on
Developmental Disabilities

According to Wallerstein and Duran (2006),
Participatory Action Research (PAR) is “an ori-
entation to research that focuses on relationships
between academic and community partners,
with principles of co-learning, mutual benefit,
and long-term commitment, and incorporates
community theories, participation, and prac-
tices into the research efforts” (p. 312). The key
to PAR is that it utilizes both action as well as
participation to frame the basis of the method-
ology (Walter, 2009). The term action refers to
the fact that research should be more than just
seeking information and that research should
also involve a component that aims to promote
social change (Walter, 2009). Action is achieved
where participants are influential in collecting
and analyzing data, and determining which
actions should subsequently follow, resulting in
a reflexive cycle between the researcher and the
community (Baum, MacDougall, & Smith, 2006).

Furthermore, the participatory nature of the
research project requires an equal and collabo-
rative involvement from the community of inter-
est (Walter, 2009). A crucial component of PAR
is the open collaboration between the research-
er and the community of interest, involving the
community of research interest with the research
objectives to promote practical and meaningful
outcomes. PAR also advocates for power to be
shared equally between the researcher and the
research community, preventing unequal power
relationships (Baum et al., 2006), and developing
a relationship where the researched become the
researchers. Additionally, because PAR originates
with the community of interest, the community
(e.g., an individual with a disability) is provided
with the opportunity to identify problems that
are important to him/her, and research topics are
not determined from the outside (e.g., from the
researcher). Therefore, PAR is characterized by a
strong and active involvement from the research-
er or research team, in addition to the vigorous
and in-depth participation from those with the
research objective (e.g., the community) (Walter,
2009). The value of conducting PAR research is
in the fact that through community partnerships,
both academics and community members have
the opportunity to contribute their strengths to a
more comprehensive research process (Blodgett
et al., 2011; Wallerstein & Duran, 2006).

The aim of this paper is to provide a selective
overview of the literature with regards to the

challenges associated with conducting qualita-
tive research with individuals who have ID –
in particular, in using PAR. Recommendations
are also provided for how to address identified
challenges.

Methods

For the purposes of this paper, we conducted a
literature search to identify studies and review
articles through various sources. Databases
such as PsycINFO, PsycARTICLES, Annual
Review of Psychology, BioMedical Sciences,
Annual Review of Sociology, ProQuest Nursing
and Allied Health Source, JSTOR, and PubMed
were searched. Articles were selected on the
basis of their relevance and appropriateness
to both the framing within a PAR perspective,
as well as their applicability to the specific
research issues within the ID population (e.g.,
ethical issues, practical issues). Key words such
as “intellectual disability,” “learning disabili-
ty,” “qualitative research,” “consent,” “partic-
ipatory action research,” “ethical challenges,”
“practical challenges,” “methodological chal-
lenges,” “communication issues,” “involvement
in research,” and “inclusion strategies” were
used in the literature search. As the literature
on ethical and practical challenges specifically
within qualitative research for individuals with
ID remains relatively sparse, articles were also
identified from reference pages of key articles
in the field.

Findings

The review of the literature identified a number
of ethical and practical challenges to conduct-
ing qualitative research with persons with ID.

Ethical Challenges

Qualitative research can lead to new discover-
ies that are difficult to portray in other meth-
odological approaches (O’Day & Killeen, 2002);
however, researchers often face ethical chal-
lenges even prior to obtaining relevant research
findings. In particular, issues of consent and
capacity determination are discussed below.

v.19 n.2

Intellectual Disability and Qualitative Research 15

The Consent Process

According to Article 3.2 of the Canadian Tri-
Council Policy Statement (TCPS2; Canadian
Institutes of Health Research (CIHR), Natural
Sciences and Engineering Research Council
of Canada (NSERC), and Social Sciences and
Human ities Research Council of Canada
(SSHRC), 2010), consent to participate in research
shall be informed. Researchers must “provide
to prospective participants, or authorized third
parties, full disclosure of all information nec-
essary for making an informed decision to par-
ticipate in a research project” (CIHR, NSERC, &
SSHRC, 2010, p. 30). In order for consent to be
informed, potential participants must be able to
grasp the information that was provided, as well
as have an opportunity to ask questions, dis-
cuss, and consider whether they would like to
participate. The key to obtaining informed con-
sent is that potential participants comprehend
the information being conveyed to them by the
researcher; however, for individuals with ID, the
capability to provide full and informed consent
has been described as a dilemma (Andre-Barron,
Strydom, & Hassiotis, 2008; Lloyd et al., 2006).

According to McCarthy (1998), there is a mis-
conception surrounding obtaining informed
consent, whereby it is “implied that problems
regarding informed consent can all be over-
come, if handled in a sensitive enough manner”
(p. 143). For example, in the case of individuals
with ID, they may feel obliged to consent to be
interviewed because they feel pressure from
outside sources, such as their parents or work-
ers (Irvine, 2010). According to Roberts and
Illardi (2003), vulnerable populations, such as
individuals with ID, are more prone to coercion
than any other research participant. Until very
recently, there have been few publications in the
literature with regards to the issue of obtaining
informed consent for individuals with disa-
bilities (e.g., Arscott, Dagnan, & Kroese, 1998;
Dye, Hare, & Hendy, 2007; Stalker, 1998; Swain,
Heyman, & Gillman, 1998). Furthermore, con-
sent to research participation has rarely been
studied empirically within this population
(Arscott et al., 1998; Dye et al., 2007).

Arscott and colleagues (1998) sought to examine
the ability of individuals with ID to consent to
research participation and found that, although
all participants agreed to take part in the larg-
er research study, none of their participants

answered their five questions regarding consent
correctly. Questions regarding the advantages
and disadvantages of taking part in research
were the most difficult to answer. Additionally,
participants in their study appeared to not
understand that they could withdraw from the
study at any time. Dye and colleagues (2007)
conducted a similar study to assess the capacity
of individuals with ID to consent to take part in
research using three experimental conditions.
Despite using different strategies that are often
recommended by other researchers, such as
having consent information broken down into
sections or consent information accompanied
by photographs, the authors found no differ-
ences in the ability to consent to research across
groups, and only 5.9% of their sample were
deemed able to consent.

The implications of Dye and colleagues’ (2007)
study are particularly important because they
suggest that alternative methods such as pic-
tures are not helpful in developing the ability
to consent. However, for decades researchers
have been advocating for the use of videotapes,
graphics, vignettes, storybooks, and other
inventive methods of information disclosure to
obtain consent (e.g., Dresser, 1996; Fisher, 2003;
March, 1992; Matysiak, 2001). Researchers con-
tinue to suggest that it is essential to document
individual informed consent using alternative
methods within this population because many
individuals with ID may be unable to read or
write (Andre-Barron et al., 2008; Molyneux,
Wassenaar, Peshu, & Marsh, 2005). For exam-
ple, Cameron and Murphy (2006) outlined the
importance of using a variety of supports to
make language accessible, such as using sym-
bols, simple language, bullet points, and repe-
tition of information. As Matysiak (2001) states:
“It is well and good to speak of informed con-
sent and to have respondents sign consent
forms, for example, but how is that relevant for
someone who does not read and has difficulty
understanding lengthy sentences?” (p. 193).

Although Dye et al. (2007) showed no empiri-
cal evidence for using alternative methods to
obtain consent, one important issue has often
been neglected in the literature. While research-
ers frequently comment on the use of alternative
methods for individuals with disabilities in gen-
eral, no published article, to the authors’ knowl-
edge, has discussed implications for obtaining
consent for specific disability populations.

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16 COOns & watsOn

Fetal Alcohol Spectrum Disorder (FASD) is an
example of a condition that might present chal-
lenges to obtaining consent. Individuals with
FASD often have deficits in expressive and
receptive language abilities (McGee, Bjorkquist,
Riley, & Mattson, 2009). Furthermore, individ-
uals with FASD often have difficulties with
memory, and therefore often need to “over-
learn” a concept. The implication of this ability
discrepancy means that, although researchers
may believe individuals with FASD have con-
sented to participate in an informed manner,
they may not fully comprehend or understand
what they are being asked to do. Individuals
with FASD may seem to understand the study
requirements and their ability to withdraw
from the study at any time because they are
able to use their expressive language abilities
to appear more knowledgeable. Therefore, the
researcher may believe that the individual with
FASD has understood the advantages/disad-
vantages and potential risks/benefits of the
study, but it is likely that the individual with
FASD lacks comprehension of these require-
ments for consent.

Examples that may affect the capacity to give
consent are Down syndrome and Fragile X
syndrome. Individuals with Down syndrome
or Fragile X syndrome both have learning
challenges; however, individuals with Down
syndrome often do well when they can learn
sequentially, whereas individuals with Fragile
X syndrome have cognitive weaknesses with
sequential processing (Dykens, Hodapp, &
Finucane, 2000). Individuals with Down syn-
drome may also have sensory deficits that can
impact the consent process. For example, hear-
ing loss may be prevalent in approximately 66
to 89% of individuals with Down syndrome,
and ophthalmic conditions, such as strabis-
mus, may be prevalent in approximately 60%
of individuals (Dykens et al., 2000). Therefore,
methods of obtaining consent may differ for
these populations because visual or auditory
presentation of information may be irrelevant.

Determining Capacity

Capacity refers to one’s cognitive ability to make
a specific decision at a specific point in time
(Surrey Place Centre, 2011). In order to have full
capacity to make a decision, an individual must
be able to understand and retain information

relevant to the decision, as well as the ability to
weigh the information (e.g., risks and benefits)
in the decision-making process (Calveley, 2012).
Capacity is not static, but rather changes over
time and requires distinctive abilities depend-
ing on the nature and complexity of the deci-
sion to partake in a particular research project.
Determining one’s capacity should take place
before obtaining and documenting consent
because some individuals with ID may be inca-
pable of giving consent. For example, patients
with mild to moderate ID will likely be able
to provide consent, whereas those with more
severe to profound ID may not have that capac-
ity (Calveley, 2012; Surrey Place Centre, 2011).
Steps may therefore need to be taken to involve
others who know the individual best, such as
family members or paid caregivers, when assess-
ing capacity and obtaining informed consent.

Determining one’s capacity has particular rel-
evance for qualitative methodologies. Persons
with mild to moderate ID are often able to con-
sent to participate in research, and as research-
ers have noted there is an identifiable and con-
sistent pattern of involving participants who
have the ability to articulate their views in a
clear and coherent manner (Lloyd et al., 2006;
Paterson & Scott-Findlay, 2002). However, those
with ID who have difficulties expressing them-
selves verbally are included less often in quali-
tative research, particularly interview research,
due to the generalized misconception that indi-
viduals with ID have little or no insight and
often lack capacity to provide coherent respons-
es regarding their life experiences (Matysiak,
2001; Turner, 1980).

Practical Challenges

In addition to the ethical challenges discussed
above, researchers often face a number of practi-
cal, or methodological, challenges when under-
taking qualitative research projects with indi-
viduals with ID. Three of these challenges, com-
munication, data analysis, and power differen-
tials are presented in the following discussion.

v.19 n.2

Intellectual Disability and Qualitative Research 17

Communication: Asking Questions and
Assessing Credibility

Many individuals with ID have difficulties
with communication, including g rammar,
expressive language, pronunciation, articu-
lation, and uneven or unpredictable rates of
speech (Dykens et al., 2000). For example, indi-
viduals with Down syndrome tend to have dif-
ficulties in many aspects of language and com-
munication (Roberts, Price, & Malkin, 2007).
Specifically, individuals with Down syndrome
often have impairments in their grammatical
abilities, with many individuals not progress-
ing beyond a level of 3 years old (Dykens et al.,
2000; Fowler, 1990). Furthermore, individuals
with Down syndrome also have weaknesses in
their expressive language, perhaps impeding
their ability to express their concerns or queries
regarding the research project or to give appro-
priate responses.

Similarly, individuals with Angelman syn-
drome have minimal or absent word usage, so
non-verbal communication is best. Although
this lack of language appears in almost all
cases of Angelman syndrome, only a hand-
ful of studies provide measurable information
about expressive and receptive language abili-
ties in these individuals (Summers & Pittman,
2004). Despite minimal verbal word usage,
there appears to be a greater variability in cog-
nitive abilities in these individuals than was
once thought (Summers & Pittman, 2004).

Although conducting qualitative research with
individuals with Angelman syndrome would
be extremely challenging and time consuming,
augmentative and alternative communication
approaches may provide a feasible option for
individuals with Angelman syndrome. Such
approaches may include manual sign language,
for those who are able, or symbols, such as real
objects or photographs, and picture communi-
cation (Summers & Pittman, 2004). Selection of
appropriate communication approaches should
be lead by the contemplation of several factors,
including the individual’s current skills and
communication needs, the individual’s abil-
ity to use symbols, and the individual’s func-
tional limitations (Summers & Pittman, 2004).
This example is certainly not meant to serve
as a means of how to go about conducting
qualitative research with these difficult study

populations, but rather as an example of the
challenges that researchers face in trying to
represent individuals who are more severely
affected in the disability discourse. As Lloyd
and colleagues (2006) point out, “the only way
to attempt to truly capture their perspective
is to ask the individuals to express it directly”
(p. 1388). These authors go on to recommend
gaining information regarding the experienc-
es “of individuals with expressive language
difficulties, given the strong possibility that
they might have problems making their voices
heard in everyday life” (p. 1388).

It is for these reasons that some research-
ers have questioned the credibility of inter-
view responses given by individuals with ID,
including factors such as poor or inconsistent
memory of events, difficulty in responding to
abstract or reflexive questions, and confabulat-
ed or meaningless responses (see Lloyd et al.,
2006 for a summary of relevant research stud-
ies). Researchers have also found a tendency
toward acquiescence when more direct ques-
tions are asked (e.g., Heal & Sigelman, 1995;
Sigelman, Budd, Spanhel, & Schoenock, 1981),
which has important implications for the types
of interview questions that are asked and the
way in which these questions are asked.

Open-ended interview questions frequent-
ly result in inadequate answers, with many
individuals with ID being either incapable
of answering or providing little information
(Lloyd et al., 2006; Sigelman et al., 1981). As
previously discussed, individuals with ID
have been shown to frequently acquiesce when
asked yes or no questions. Sigelman and col-
leagues (1981) found that although slightly
fewer of their participants could answer either-
or questions compared to yes-no questions,
responses to either-or questions were more
consistent. Furthermore, responses to either-
or questions from participants were somewhat
more consistent with responses given from
other informants, such as caregivers or parents
(Sigelman et al., 1981). Therefore, asking ques-
tions that are structured and concrete may pro-
vide more clarity to the participants, resulting
in more in-depth and rich responses. By engag-
ing in PAR projects, co-researchers with ID can
assist in developing questions that are relevant
to them, consequently aiding in the quality and
depth of interview responses.

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18 COOns & watsOn

Data Analysis: Difficulties Involving
Individuals with ID

Gilbert (2004) has identified the collection and
analysis of data as the most challenging aspect
of undertaking research with individuals who
have ID. Although researchers have advocated
for participatory and emancipatory research
projects, examples of research where individu-
als with ID have been involved in data analysis
remain hard to find (Koenig, 2011; Kramer et
al., 2011; Nind, 2008). The lack of involvement
in the data analysis process is particularly trou-
blesome, because research projects may strive
to be participatory in nature, but may in fact be
disempowering to participants.

Concerns regarding the data analysis pro-
cedure have been raised by Walmsley and
Johnson (2004), who contend that there must
be a place for theorizing in qualitative research
that is carried out without the involvement of
persons with ID. At the same time, there must
be a commitment on the part of the researcher
to make their theoretical findings comprehen-
sible to their participants (Walmsley & Johnson,
2004). Thus, the implication is that individuals
with ID are “barred from the critical area of
analysis and theorizing that allows us to make
sense of research findings” (Koenig, 2011, p. 2).

However, other scholars, such as Tuffrey-Wine
and Butler (2010), argue that it may be possible
for researchers with ID to make additional ana-
lytical input, but that extra effort and expendi-
ture for spending time and providing training
must be taken into consideration. Other authors
speak to the “added value” (Koenig, 2011, p. 8)
of including individuals with ID in the analy-
sis of qualitative data, because findings can be
grounded in interpretations of the individuals’
lived experiences. Kramer and colleagues (2011)
have identified similar strengths of incorporat-
ing individuals with ID in the research process.
By implementing a PAR project, Kramer and
colleagues (2011) presented numerical data in
three visual formats for analyses to the partic-
ipants, where a two-step process was used to
analyze and interpret the data. All participants
in their study were actively engaged in the first
stage of the analytical process, which involved
analyzing bar graphs as a group. However, the
second stage of the process, which involved
interpreting the data, was not fully inclusive.

Despite not being fully inclusive, the findings
of their study highlight two outcomes that the
group experienced: empowerment and aware-
ness. Regardless of the challenges with inter-
pretation and dissemination, this study pro-
vides an excellent starting point for developing
appropriate strategies to use when attempting
to analyze and interpret qualitative data with
individuals who have ID.

An important component of the data analysis
process is the researcher’s interpretation. PAR
projects are ideal because individuals with dis-
abilities have the opportunity to interpret the
qualitative data framed within their own expe-
riences and knowledge. However, when just the
researchers interpret qualitative data, there is a
possibility of imposing their own assessments
and outlooks on the accounts of participants,
which may compromise the aim of the quali-
tative interviews if the final analysis reflects
the researcher’s concerns and interpretations,
rather than those of the participants (Lloyd et
al., 2006).

Therefore, researchers need to be highly reflex-
ive to make it clear to the reader how they have
analyzed their data. However, as noted by
Dowse (2009), theorizing about how one’s own
understanding of individual biases might influ-
ence the findings has been notably absent from
the literature. Therefore, there is a need for PAR
projects with individuals who have ID that
allow them to assist in all stages of the research
project, including the data analysis and inter-
pretation stage. For researchers not engaged in
PAR projects, member checking provides a way
to ensure representativeness of the data (Irvine,
2010). Additionally, researchers can strive to
respect the voice of the participants by using
direct quotations in manuscripts and reports
produced from qualitative studies.

Challenging Disempowerment: Difficulties
with Power Relationships

Disability discourse has been, and to a sizable
degree still is, predominantly controlled by
people who do not have a disability (Bollard,
2003; Kitchin, 2000). For this reason, disability
scholars have contended that the vast major-
ity of published articles are not representa-
tive of people’s experiences and knowledge

v.19 n.2

Intellectual Disability and Qualitative Research 19

(Oliver, 1992) because existing literature is
researcher-oriented and based on the agendas
of researchers without disabilities (Calveley,
2012; Kitchin, 2000; Sample, 1996). Therefore,
scholars have struggled with the notion that
existing disability research is disenfranchising
to those whom they seek to represent (Kitchin,
2000) and further reinforces the misrepresenta-
tion of individuals with ID. These arguments
clearly provide a framing for the criticism of
existing positivist research, and are the basis
for why qualitative methodologies, and par-
ticularly PAR, have been called to the fore-
front by a number of scholars (e.g., Bollard,
2003; Brown, 2007; Kitchin, 2000; Kramer et al.,
2011; McDonald & Patka, 2012; Walmsley, 2001;
Walmsley & Johnson, 2004).

Because researchers have argued that cur-
rent disability literature is not representative
(Kitchin, 2000; Oliver, 1992), issues surrounding
differences in the power relationship between
academics and individuals with disabilities is
clearly a challenge. The researcher is viewed as
a person of importance, which can be intimi-
dating for many participants, and in particular
those with ID (Irvine, 2010). Irvine (2010) argues
that researchers need to try to find ways to rec-
tify this power imbalance by finding ways to
empower participants. She suggests that such
empowerment can be done through the choice
of location of the interview, which allows the
participant to feel comfortable and provides a
feeling of familiarity. However, involving the
participant in making minor choices does not
actively involve them in the research project. In
order to give participants a voice in the project,
individuals with disabilities need to be actively
engaged in all stages of the research project.

Individuals with disabilities have spoken on
their own behalf and have argued that by
employing individuals with disabilities as
consultants in the research, research findings
can be more representative of the population
(see Kitchin, 2000). With participants as con-
sultants, academics would retain control over
the research process and the questions being
asked, but the participants would be provided
with the opportunity to correct misinterpre-
tations and impact the course of the research
(Kitchin, 2000). Although involving partici-
pants as consultants is a good start, truly equal
partnerships, or co-researcher involvement,

will allow research to become more demon-
strative and reflexive because the issue of une-
qual power relationships would be addressed.
By involving individuals with disabilities as
co-researchers, we acknowledge their exper-
tise of their own circumstances and their own
lived experiences. As Dowse (2009) states, “the
emphasis on mutuality and the co-construction
of research agendas, interpretative frames and
meanings is a method that has rarely been seen
in research practice in intellectual disability”
(p. 151). By using such an approach, the skills
and knowledge of both the researcher and the
researched can merge and create a process of
integrated inquiry and reflection (Dowse, 2009).

Recommendations

Pa rt icipator y a nd ema ncipator y resea rch
frameworks have been recom mended for
conducting research with individuals who
have disabilities for a number of reasons. As
Balcazar and colleagues (1998) note, individuals
with disabilities themselves have the opportu-
nity to articulate the problem and participate
directly in the process of defining, analyzing,
and solving their own problem. This direct
involvement in the research process enables
a more precise and genuine analysis of their
social reality, and the procedure of partaking in
PAR can increase awareness among individuals
with disabilities about their own potentials and
strengths. Furthermore, the PAR process itself
can be empowering to people with ID, because
they have the opportunity to raise awareness of
their situation and express a desire to change
said situation if they find it unsatisfactory
(Kramer et al., 2011). In order for the results
to be relevant and empowering to those with
ID, it is essential that the process itself is also
empowering (Matysiak, 2001).

The implication is undoubtedly that individu-
als with disabilities need to be more involved in
the disability discourse, including the research
process. However, the question then remains,
how do academics and researchers go about
ensuring that individuals with ID are actively
involved in all steps of the research process?
Special considerations must be made regarding
assessing informed consent as well as capacity,
plus researchers should consider the effect of
specific disabilities on the research process.

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20 COOns & watsOn

Researchers need to pay particular attention
to issues involved in obtaining consent for
research from individuals with ID (Arscott et
al., 1998). Researchers need to spend more time
when obtaining consent, which needs to be
accounted for in the initial planning of the qual-
itative research project (Cameron & Murphy,
2006). Additionally, information sheets and con-
sent procedures need to be adapted appropri-
ately for specific disability populations.

For example, as was previously discussed with
assessing consent for individuals with FASD,
researchers should break instructions into com-
ponent parts, as well as complement auditory
instruction with written or visual instruction.
Researchers should also provide one on one
instruction regarding the requirements of the
study, as well as use language that is familiar
to the individual. Additionally, like in all cases
of obtaining informed consent, the researcher
should check for comprehension. Furthermore,
when assessing consent with individuals with
Down syndrome or Fragile X syndrome, differ-
ent considerations may need to be taken into
account. For example, breaking consent infor-
mation into small components and continual-
ly building on the previous chunk of consent
information may be particularly helpful in
obtaining consent in individuals with Down
syndrome, whereas individuals with Fragile X
syndrome may more easily understand what
they are being asked to consent to in the study
if consent information is provided visually,
alongside verbal instruction with frequent
breaks and frequent repetition of information
(Dykens et al., 2000). Despite difficulties with
sequential processing, individuals with Fragile
X syndrome often have cognitive strengths in
long-term memory for learned information and
in recognizing visual information (Kennedy,
MacGregor, & Rosenfield, 2004).

Finally, consent should also be viewed as an
ongoing process (Cameron & Murphy, 2006;
CIHR, NSERC, & SSHRC, 2010). Researchers
often assume that their ethical obligations are
completed once consent to participate has been
obtained (Freedman, 2001). However, because
individuals’ preferences and concerns regard-
ing the research project may change over
time, researchers should continually commu-
nicate with their participants and obtain con-
sent throughout the duration of the research.

Revisiting the consent process throughout par-
ticipation, frequently referred to as “process con-
senting” (Munhall, 1989), allows participants to
play a collaborative role in decisions regarding
their ongoing participation. Process consenting
allows both the researcher and participant to
assess consent throughout the research pro-
cess, an approach that provides more protection
and freedom of choice for participants because
unforeseen issues inevitably arise and risk can
never fully be anticipated. Process consenting
allows the participant the freedom to withdraw
from the interview or study at any time and
ensures that the participant has a say in confi-
dentiality throughout the research process.

In addition to participant communication chal-
lenges, interviewers also need to be aware of
how their own communication styles and inter-
view guides can affect a participant’s response.
Interviewers need to be flexible when conduct-
ing qualitative research with individuals with
ID. For example, it may be necessary to have
someone present who is able to assist in inter-
preting the language and meaning of a particu-
lar response (Irvine, 2010). Flexibility is also
required to ensure maximum involvement for
those whose language abilities are less artic-
ulate (Lloyd et al., 2006). Such flexibility may
involve conducting interviews with the aid of
other techniques to enhance understanding
and allow participants to respond in different
ways. For example, participants who have little
or no verbal abilities may respond to questions
using sign language. Interviewers should also
consider the wording of their questions and
how interview questions may need to be spe-
cifically tailored to each participant depending
on their individual strengths and weaknesses.

Conclusion

This paper highlights the ethical as well as prac-
tical challenges and considerations that research-
ers must account for when conducting qualitative
research with individuals with ID. It is important
to draw attention to these challenges in order to
improve the research process and fully include
individuals with ID in the research setting.

Altogether, in order to engage individuals with
ID in the disability discourse, researchers must
recognize the expertise of individuals with ID

v.19 n.2

Intellectual Disability and Qualitative Research 21

and the substantial knowledge they are able
to bring to the research setting (Irvine, 2010;
Kitchin, 2000; Mactavish et al., 2000). Although
involving individuals with ID in research, espe-
cially those with severe or profound disabilities,
can be challenging, researchers can obtain find-
ings that provide new insights to the disabili-
ty experience. By engaging in participatory or
emancipatory research projects, individuals with
disabilities can be active contributors in defining
their own social issues or problems and become
vigorous agents in initiating social change.

Special considerations need to be made to accom-
modate individuals with ID in the research pro-
cess (Irvine, 2010), and these can present a num-
ber of ethical and practical dilemmas. The pop-
ulation of individuals with ID is complex and
diverse, which means tailoring methods that are
specific to each individual with regards to both
ethical and practical guidelines. The key to suc-
cess when conducting qualitative research with
individuals who have ID requires the research-
er to be flexible, both in adapting methods
appropriately and modifying their expectations
accordingly. Debates continue with regard to the
most effective ways of including people with ID
in the research process, as well as ensuring the
credibility of research findings and interpreta-
tions (Mactavish et al., 2000). Although research
publications continue to address the challenges
and considerations presented in this paper, more
research is needed that includes individuals
with disabilities in the research process, particu-
larly in the data analysis procedures.

Key Messages From This Article

Persons with disabilities: You deserve to be
involved in all stages of the research process
and to have your voices heard. Researchers
should acknowledge that you are the experts
on your own experiences and that you have
valuable contributions to make to the field of
intellectual disabilities.

Professionals: Researchers should be aware
of strategies and the accommodations needed
to provide a more inclusive research experi-
ence for individuals with intellectual disabili-
ties. Researchers should be aware of the value
of conducting Participatory Action Research
(PAR) projects.

Policymakers: Policymakers must make certain
that adequate protections are in place to ensure
the safety of individuals with intellectual dis-
abilities when participating in research. Ethical
practices for research based on the Tri-Council
Policy Statement (TCPS2) guidelines need to be
followed.

References

Andre-Barron, D., Strydom, A., & Hassiotis,
A. (2008). What to tell and how to tell: A
qualitative study of information sharing
in research for adults with intellectual
disability. Journal of Medical Ethics, 34,
501–506.

Arscott, K., Dagnan, D., & Kroese, B. S. (1998).
Consent to psychological research by
people with an intellectual disability.
Journal of Applied Research in Intellectual
Disabilities, 11, 77–83.

Balcazar, F. E., Keys, C. B., Kaplan, D. L., &
Suarez-Balcazar, Y. (1998). Participatory
action research and people with disabilities:
Principles and challenges. Canadian Journal
of Rehabilitation, 12, 105–112.

Baum, F., MacDougall, C., & Smith, D. (2006).
Participatory action research. Journal of
Epidemiology & Community Health, 60,
854–857.

Blodgett, A. T., Schinke, R. J., Peltier, D.,
Fisher, L. A., Watson, J., & Wabano, M.
G. (2011). May the circle by unbroken:
The research recommendations of
Aboriginal community members engaged
in participatory action research with
university academics. Journal of Sport and
Social Issues, 35, 264–283.

Bollard, M. (2003). Going to the doctor’s: The
findings from a focus group with people
with learning disabilities. Journal of
Learning Disabilities, 7, 156–164.

Brown, M. (2007). Conducting focus groups
with people with learning disabilities:
Theoretical and practical issues. Journal of
Research in Nursing, 12, 127–128.

Calveley, J. (2012). Including adults with ID
who lack capacity to consent in research.
Nursing Ethics, 19, 558–567.

JODD

22 COOns & watsOn

Cameron, L., & Murphy, J. (2006). Obtaining
consent to participate in research: The
issues involved in including people with
a range of learning and communication
disabilities. British Journal of Learning
Disabilities, 35, 113–120.

Canadian Institutes of Health Research,
Natural Sciences and Engineering
Research Council of Canada, and Social
Sciences and Humanities Research
Council of Canada, Tri-council policy
statement: ethical conduct for research
involving humans, December 2010.

Dresser, R. (1996). Mentally disabled research
subjects: The enduring policy issues. The
Journal of the American Medical Association,
276, 67–72.

Dowse, L. (2009). “It’s like being in a zoo.”
Researching with people with intellectual
disability. Journal of Research in Special
Education Needs, 9, 141–153.

Dye, L., Hare, D. J., & Hendy, S. (2007).
Capacity of people with intellectual
disabilities to consent to take part in a
research study. Journal of Applied Research
in Intellectual Disabilities, 20, 168–174.

Dykens, E. M., Hodapp, R. M., & Finucane, B.
M. (2000). Genetics and mental retardation
syndromes. Baltimore, MA: Paul H. Brookes
Publishing Co.

Fisher, C. B. (2003). Goodness-of-fit ethic for
informed consent to research involving
adults with mental retardation and
developmental disabilities. Mental
Retardation and Developmental Disabilities
Research Reviews, 9, 27–31.

Fowler, A. (1990). Language abilities in
children with Down syndrome: Evidence
for a specific syntactic delay. In D.
Cicchetti & M. Beeghly (Eds.), Children with
Down syndrome: A developmental perspective
(pp. 302–328). New York: Cambridge
University Press.

Freedman, R. I. (2001). Ethical challenges
in the conduct of research involving
persons with mental retardation. Mental
Retardation, 39, 130–141.

Gilbert, T. (2004). Involving people with
learning disabilities in research: Issues
and possibilities. Health and Social Care in
the Community, 12, 298–308.

Heal, L. W., & Sigelman, C. K. (1995). Response
bias in interviews of individuals with
limited mental ability. Journal of Intellectual
Disability Research, 39, 241–256.

Irvine, A. (2010). Conducting qualitative
research with individuals with
developmental disabilities: Methodological
and ethical considerations. Developmental
Disabilities Bulletin, 38, 21–34.

Kennedy, T. J. T., MacGregor, D., & Rosenfield,
J. (2004). Fragile X syndrome. In D.
Griffiths & R. King (Eds.), Demystifying
syndromes: Clinical and educational
implications of common syndromes associated
with persons with intellectual disabilities
(pp. 31–58). Kingston, NY: National
Association for the Dually Diagnosed
(NADD).

Kitchin, R. (2000). The researched opinions on
research: Disabled people and disability
research. Disability & Society, 15(1), 25–47.

Koenig, O. (2011). Any added value?
Co-constructing life stories of and with
people with intellectual disabilities. British
Journal of Learning Disabilities. doi:10.1111/
j.1468-3156.2011.00695.x

Kramer, J. M., Kramer, J. C., Garcia-Iriarte, E.,
& Hammel, J. (2011). Following through to
the end: The use of inclusive strategies to
analyse and interpret data in participatory
action research with individuals with
intellectual disabilities. Journal of Applied
Research in Intellectual Disabilities, 24, 263–273.

Lloyd, V., Gatherer, A., & Kalsy, S. (2006).
Conducting qualitative interview research
with people with expressive language
difficulties. Qualitative Health Research, 16,
1386–1404.

Mactavish, J. B., Mahon, M. J., & Lutfiyya,
Z. M. (2000). “I can speak for myself”:
Involving individuals with intellectual
disabilities as research participants. Mental
Retardation, 38, 216–227.

March, P. (1992). Do photographs help
adults with severe mental handicaps to
make choices? British Journal of Mental
Subnormality, 28, 122–128.

Matysiak, B. (2001). Interpretive research
and people with intellectual disabilities:
Politics and practicalities. Research in Social
Science and Disability, 2, 185–207.

McCarthy, M. (1998). Interviewing people with
learning disabilities about sensitive topics:
A discussion of ethical issues. British
Journal of Learning Disabilities, 26, 140–145.

v.19 n.2

Intellectual Disability and Qualitative Research 23

McDonald, K., & Patka, M. (2012). “There is
no black or white”: Scientific community
views on ethics in intellectual and
developmental disability research.
Journal of Policy and Practice in Intellectual
Disabilities, 9, 206–214.

McGee, C. L., Bjorkquist, O. A., Riley, E.
P., & Mattson, S. N. (2009). Impaired
language performance in young children
with heavy prenatal alcohol exposure.
Neurotoxicology and Teratology, 31, 71–75.

Molyneux, C. S., Wassenaar, D. R., Peshu, N., &
Marsh, K. (2005). “Even if they ask you to
stand by a tree all day, you will have to do
it (laughter)…!”: Community voices on the
notion and practice of informed consent
for biomedical research in developing
countries. Social Science and Medicine, 61,
443–454.

Munhall, P. (1989). Ethical considerations in
qualitative research. Western Journal of
Nursing Research, 10, 150–162.

Nind, M. (2008). Conducting qualitative
research with people with learning,
communication and other disabilities:
Methodological challenges. National
Centre for Research Methods.

O’Day, B., & Killeen, M. (2002). Research on
the lives of persons with disabilities:
The emerging importance of qualitative
research methodologies. Journal of
Disability Policy Studies, 13, 9–15.

Oliver, M. (1992). Changing the social relations
of research production. Disability, Handicap
and Society, 7, 101–114.

Paterson, B., & Scott-Findlay, S. (2002). Critical
issues in interviewing people with
traumatic brain injury. Qualitative Health
Research, 12, 399–409.

Roberts, J. E., Price, J., & Malkin, C.
(2007). Language and communication
development in Down syndrome. Mental
Retardation and Developmental Disabilities
Research Reviews, 13, 26–35.

Roberts, M. C., & Illardi, S. S. (2003). Handbook
of research in clinical psychology. Malden,
MA: Blackwell Publishing Ltd.

Sample, P. L. (1996). Beginnings: Participatory
action research and adults with
developmental disabilities. Disability and
Society, 11, 317–332.

Sigelman, C. K., Budd, E. C., Spanhel, C. L., &
Shoenrock, C. J. (1981). Asking questions of
mentally retarded persons: A comparison
of yes-no and either-or formats. Applied
Research in Mental Retardation, 2(4), 347–357.

Stalker, K. (1998). Some ethical and
methodological issues in research with
people with learning difficulties. Disability
and Society, 13, 5–19.

Summers, J., & Pittman, D. (2004). Angelman
syndrome. In D. Griffiths & R. King
(Eds.), Demystifying syndromes: Clinical
and educational implications of common
syndromes associated with persons with
intellectual disabilities (pp. 31–58). Kingston,
NY: National Association for the Dually
Diagnosed (NADD).

Surrey Place Centre (2011). Informed consent
in adults with developmental disabilities
(DD). Retrieved from Surrey Place Centre
website: http://www.surreyplace.on.ca/
Documents/Informed%20Consent%20
in%20Adults%20with%20DD.pdf

Swain, J., Heyman, B., & Gillman, M. (1998).
Public research, private concerns:
Ethical issues in the use of open-ended
interviews with people who have learning
disabilities. Disability and Society, 13, 21–36.

Tuffrey-Wine, I., & Butler, G. (2010).
Co-researching with people with learning
difficulties: An experience of involvement
in qualitative data analysis. Health Expect,
13, 174–184.

Turner, J. (1980). Yes, I am human:
Autobiography of a “retarded career.”
Journal of Community Psychology, 8, 3–8.

Wallerstein, N. B., & Duran, B. (2006). Using
community-based participatory research
to address health disparities. Health
Promotion Practice, 7, 312–313.

Walmsley, J. (2001). Normalisation,
emancipatory research and inclusive
research in learning disability. Disability
and Society, 16, 187–205.

Walmsley, J., & Johnson, K. (2004). Inclusive
research with people with learning disabilities:
Past, present and futures. New York, NY:
Jessica Kingsley Publishers.

Walter, M. M. (2009). Participatory action
research. In M. Walter (Ed.), Social research
methods second edition (pp. 1–8). South
Melbourne: Oxford University Press.

JODD

24 COOns & watsOn