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Case Study 7

Case Study 7 Questions

1. What do the authors describe as a key problem with conducting research with individuals who have disabilities?

2. Describe the ethical challenges presented by the authors?

3. How does the APA Code of Ethics apply to research with individuals who have disabilities?

4. How does the Saint Leo University core values apply to research with individuals who have disabilities?

5. Describe recommendations for future research proposed by the authors. Explain other recommendations that you believe are important to consider.

Case Study 7

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Conducting research with individuals who have
intellectual disabilities: Ethical and practical
implications for…

Article · January 2013

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2 authors:

Kelly D Coons

Laurentian University

11 PUBLICATIONS 26 CITATIONS

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Shelley L Watson

Laurentian University

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Retrieved on: 04 November 2016

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

kd_coons@laurentian.ca

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.

JODD

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 synd

Case Study 7

Answer all the 4 questions

Case study 

Suzanne Valentine had been noticing an increasing number of businesses asking their customers to donate to charities when they make a purchase, a practice known as checkout charity or point of sale fundraising. One example was the Shoppers Drug Mart “SHOPPERS LOVE. YOU” campaign, which encourages customers to purchase a leaf for $1, a butterfly for S5, an apple for $10 or a bird for $100. All proceeds go directly to the women’s health organizations chosen by each Associate-owner, best reflecting local community needs. Over the past five years, $57 million has been contributed to local, regional and national women’s health initiatives.

Many other corporations have similar programs including Indigo, Loblaw, Walmart, and McDonald’s. Even former Governor General David Johnston’s “My Giving Moment” encourages participating in such programs.

Suzanne was directly affected by this type of corporate social responsibility fundraising. She worked part-time as a cashier at her neighbourhood grocery store where the owner established a donation scheme, “Pennies for Pets.” The owner was a strong supporter of animal causes and the donations were to support the local animal shelter. All cashiers were instructed to ask customers if ther wanted to donate $1 or $2 to the shelter.

Suzanne followed instructions but she had several reservations about the scheme. She felt awkward asking customers for the donation, particularly those who looked like they could not afford it. Some customers might be intimidated by the request and she did not believe that they should be put on the spot to say yes or no. Some customers may not wish to support this particular charity. As well, she was not convinced that the particular shelter deserved funding, as there had been some articles in the media about its poor management and treatment of animals. Lastly, she was not sure how much of the money collected was forwarded to the charity, and whether or not the owner matched the customer donations.

Questions

1. What are the ethical implications in this example of corporate social responsibility?

2. What information should the company provide to Suzanne and its customers?

3. Carroll has identified four corporate social responsibilities: economic, legal, ethical, and philanthropic.  Which responsibilities are involved in “Pennies for Pets” or similar fundraising schemes?

4. How should Suzanne resolve her personal ethical dilemma?

    • 5

    case study 7

     

    Case Study, Chapter 7, Overview of Transcultural Nursing

    1. Mrs. Perez, 32 years of age, is a Hispanic patient who is admitted for early stage cancer of the uterus. The surgeon stated that in order to treat Mrs. Perez’s cancer successfully, the uterus will need to be removed surgically through a procedure called a simple hysterectomy leaving the ovaries, fallopian tubes, and vagina. The surgeon requests that the nurse make arrangements for an interpreter, so they can both use the interpreter’s services. The patient only speaks Spanish, but her mother and one of the patient’s sisters are bilingual. They are currently visiting the patient. Her husband is also visiting and he only speaks Spanish. The patient’s two children are with her sister Maria. The family stated they are devout Catholics and request to see a priest while in the hospital. Today is Ash Wednesday. 

    1. Which interpreter is the most appropriate choice to communicate with Mrs. Perez and why?
    2. After critically analyzing the cultural influences, what nursing actions are appropriate for the patient?

    2. The nurse manager of an ambulatory care clinic has noted an increased number of visits by patients from different countries and cultures, including patients from Mexico and other Latin American countries. Concerned about meeting the needs of this culturally diverse population, the nurse manager convenes a staff meeting to discuss this change in patient demographics, and to query the staff about any learning needs they have related to the care of these patients. 

    1. What strategy to avoid stereotyping clients from other cultures should the nurse include in this meeting?
    2. Identify culturally sensitive issues to be discussed in the staff meeting.
    3. One technician on the staff complains that some patients never make eye contact, and this makes it difficult for him to complete his work. How should the nurse respond?