The Issue Of Consent In Qualitative

Research Nursing Essay

In everyday life the labelling of someone as having dementia and the taken-for-granted assumption that they
will lack insight has profound implications for their independence and autonomy (Bond, 2002.p.163).

It is vital to consider the ethical issues that may arise during the research process, or any ethical issues that
had not been disclosed to the particular ethics committee, so that they can be evaluated against possible
damage and dealt with truthfully and respectfully (Alzheimer Europe, 2008). In every research project the
ethical issues can be numerous and researchers will need to take proper ethical decisions about them. This
essay addresses this subject and highlights some of these issues and challenges. It looks at ways in which
patients who are suffering from dementia need to be addressed when conducting qualitative research on them
and will highlight important issues; informed consent and the capacity to make a decision to become involved
in a research project as well as confidentiality and anonymity. Illustrative examples will be used from research
studies that explore in-depth views about dementia patients and ethics.

Occupational therapy has played a major role in assisting researchers conduct their work in an ethical manner
when dealing with dementia patients. Occupational therapy refers to the use of treatments to ease the
condition of patients with physical, mental or developmental problems. These help with the development,
recovery, or maintenance of the daily living and work skills of these patients (College Occupational Therapist,
2010). Occupational therapy has played a very important role in the treatment of patients suffering from
dementia (Creek, 2002). Occupational therapy interventions have always placed the focus on helping these
dementia patients adapt to their environment. Carers are taught the required skills and educated on how to
make patients feel comfortable (Creek, 2002). This way, occupational therapy underpins the ethical manner in
which the qualitative studies on dementia patients’ needs to be done.

Treating long-term dementia requires that researchers conducting studies need to make some ethical
considerations when dealing with them. Individual sufferers from dementia have in most cases been treated by
traditional biomedical research methods which place most of the focus on the pathophysiology, the diagnosis
of the patients and management of these individuals’ behaviour (Penrod et al., 2007). These methods place
very little consideration on how they affect dementia patients. As a result, there is very little known with regard
to how these processes impact the lives of patients and the cognitive loss they may suffer in the course of
their treatment (McKeown et al. 2010).

Because of this there has been a growth in interest in introducing qualitative studies when dealing with
dementia patients. Qualitative studies have been identified as better capturing the personal perspective of the
dementia patient (Downs, 1997). In spite of the interest in introducing qualitative research processes into this
field, very few have been conducted (Gibson, 2004). This is primarily because of the lack of information about
the challenges of conducting qualitative research in persons with dementia; only limited material has been
published on this subject (Cotrell & Schultz, 1993).

Qualitative research allows people with dementia to feel they have a voice; that others can listen to their
concerns and are interested in their opinions and experiences (Kitwood, 1997). Another important finding is
that these patients can very easily narrate the various ways through which they are able to cope with the
difficult experiences that normally accompany cognitive impairment. Researchers only need to ask these
patients and they will get a response (Phinney et al. 2002). Through the use of qualitative research processes
researchers have been able to learn of the meaningful experiences and life values of these patients (Moore
and Hollet, 2003). This information is very important for development and testing of the various interventions
which can be used to reduce the stress, anxiety and fear always experienced by dementia patients (Beuscher
and Grando, 2009). This will, in the end, help in improving the mental well-being of these patients and,
consequently, improve the quality of their lives.

Including people with dementia in qualitative research studies is very important. Inclusion helps to make them
feel useful and productive in society (Matano, 2003; McKeown, 2010). By allowing these dementia patients to
participate in the study and give their contributions, which in the end are used in drawing conclusions about
the study, they are able to have a sense of purpose and usefulness (Matano, 2003). Including these patients in
the research study will also ensure that their conversations are listened to (Heggestad et al., 2013) and give
them a feeling that their value as a person is honoured by the researchers. It is through the involvement of
these patients in the studies that the researcher will be able to learn about their feelings, desires, and
preferences when being attended to, in spite of the fact that the disease might affect how they express these
feelings (Bourgeois, 2002).

Obtaining informed consent is a major part of conducting or planning a research project that needs participant
autonomy (Houghton et.al. 2010). Consent is defined by Gillon (1986) p.113 as a "voluntary uncovered
decision, made by a sufficiently competent or autonomous person on the basis of adequate information to
accept or reject some proposed course of action that will affect him or her". There is an increasingly relevant
debate about consent, particularly with dementia sufferers. Researchers can easily view dementia patients as
objects in need of protection and not capable of explaining their perceptions, preferring to ask family and/or
close friends. Many people with dementia are capable of expressing their desire to participate in research and
engage in discussion (Tee and Lathlean, 2004). As the dementia progresses however, the person’s ability to
understand and value the consequences of contributing to research deteriorates. Informed consent means
gaining the agreement of a dementia patient to participate in the research process and ensuring he or she has
sufficient information to be able to decide whether to participate or not (Hoghton et al. 2010). Ethics
committees demand that the proposal for research projects should clearly explain in detail the main questions
to be addressed, the advantages from participating in the research along with any problems and what tasks
will be performed (Berghmans and Meulen, 1995). These writers give as one of their five principles for research
in dementia that:

Researchers should be very sensitive to verbal and non-verbal signs and signals that might be interpreted as
symptoms of distress resulting from participation in the project (p.651).

In this situation, the dementia patient may be aware of being distressed but not conscious of their right to
withdraw from a research study at any time. It is also not always straightforward how to obtain a valid consent
form. Obtaining informed consent is therefore one of the critical issues related to the conduct of qualitative
studies with dementia sufferers. Their disease makes it unusually difficult when it comes to decision-making
(Lai and Karlawich, 2007). As a result, these patients are often very vulnerable to the researchers’ behaviour.
When conducting research on them it is thus very important that the researchers safeguard the patients’
rights. This is where the thorny issue of obtaining informed consent from the patient comes in. The capacity of
such patients to give informed consent needs to be addressed very carefully by the researchers before
engaging the patients in the research process (Hellstrom et al. 2007). The researchers need to ensure that the
proposed participants understand in detail the nature of the research and are aware of the consequences that
may accompany their participation in the studies (Lai and Karlawich, 2007).

As Hellstrom et al. (2007) point out in their studies, most of the time dementia is not accompanied by a lack of
the capacity to give informed consent. But because the manner by which the capacity to give informed
consent is assessed in relation to any patient is inherently inconsistent, Sherratt (2007) recommends that it is
appropriate for those planning the research to come up with a way through which they can determine the
capacity of the potential participants for the studies, and implement it. There needs to be a plan for addressing
the assessment of the cognitive capacity of the patients before conducting the study. Using these methods,
the researchers will be able to make a decision on the capacity of the patient to give consent (Gibson et al.,
2004).

Heggestad et al. (2012) were concerned about the ethical issues relating to capability to give consent by
sufferers from dementia and balances this by respecting the autonomy of choice about participating.
Disempowering a person is not respecting that person’s autonomy. Therefore, Heggestad et al. suggest it is
important the participants understand the research process and constantly renegotiate their consent. They
also thought that giving these participants the chance to sign their own consent would ensure that autonomy
and integrity were maintained.

In the event that a patient is seen not to have the capacity to consent to participate in a research study it is the
responsibility of the researcher conducting the study to seek this consent elsewhere. This can be sought from
a proxy decision-maker (Holt et al., 2008). Most of the time this will be a family caregiver. This is known as the
double-informed consent method for research and is in line with the recommendation from Sherratt (2007).
The method is important in making sure there is enough capacity of consent before proceeding with the
studies, hence promoting the autonomy of these dementia patients participating in studies (Beck and Shue,
2003). Many researchers view proxy consent as inappropriate and to be avoided where necessary. Ethical
review committees would without doubt need an explanation for the use of proxy consent (McKeown, 2010).
As explained above, many researchers hold the view that it is commonly hard to explain the technical details of
a study in ways that anyone can understand within the limits of their level of ‘competence’ (Cacchione, 2011). If
this cannot be done, including such an individual in a study raises important ethical concerns and needs a
strong reason. McKeown (2010) highlighted that the requirement for consent from a proxy, where the research
subject lacks capacity means that the proxy must be immediately available in order to allow timely recruitment
to the dementia research project. If the proxy has to be a family member or friend, then their timely presence is
frequently not possible in practice and should mean excluding from dementia research those who lack the
capacity to consent (Cubit, 2010). The Code of Ethics and Professional Conduct of the College of Occupational
Therapists, 2010; Section 2.1, therefore states that:

Occupational therapists should negotiate and act on behalf of the patients in relation to upholding and
promoting the autonomy of the individuals.

Researchers commonly are not able to approach potential participants directly but have to negotiate the
approach through gatekeepers (Cubit, 2010; Hellstrom et al., 2007; Sherratt, 2007). Gatekeepers are
professional organisations where people are looked after, in addition to service providers, caregivers, parents
or relatives. These gatekeepers have no legal rights in respect of the person’s decision to participate in
research but generally control the places where they may be accessed and they may, in addition, have legal
responsibility for an individual’s well-being in that setting (Health et al., 2004). For that reason, they have the
power to refuse consent for a researcher to recruit participants in a particular setting. Moreover, where
agreement is given, they have the power to determine the ways in which potential participants are informed
about a study and the process of consent, which may influence potential participants’ willingness to
participate. (Cubit, 2010 and Sherratt, 2007) have identified issues in relation to gatekeepers and the consent
of participants to research study participation. The first concerns an over-protective attitude by gatekeepers
which may result in people being denied the chance to participate in research (Health et.al, 2004). The second
concerns a failure of gatekeepers to provide opportunities for potential participants to exercise their choice to
participate in research (Sherratt, 2007). In relation to the first of these, some gatekeepers may prevent contact
by researchers for a variety of reasons, one of which may be an assumed lack of competence on the part of
the potential research participant (Health et al., 2004). Even where access is agreed the gatekeeper may seek
consent from relatives as well as the consent of the individual concerned (Holt et al., 2008). Even though a
person wants to participate, their wishes therefore may be trumped by rejection from a relative (Holt et al.,
Sherratt, 2007). In most cases researchers are not in a position to challenge an institution’s judgment to refuse
access or to seek further consent from relatives. A variety of ways to manage the issue of ‘presumed’ consent
have been recognised in ways that do not reveal to gatekeepers that individuals are actually taking part in the
research. These include respecting the rights of participants to remain silent in discussion groups, letting
participants discourse what they need to in interviews and allowing them not to complete questionnaires
(Sherratt, 2007).

The last challenge to the issue of consent in qualitative research on dementia patients is from whom to
request consent to obtaining observational data in the clinical setting and whether written or verbal consent is
necessary. For dementia patients, the most appropriate is to obtain verbal consent when collecting
observational data in the clinical setting (Houghton, 2010). Moore and Savage (2002) and Griffiths, (2008)
report that there is no need to seek any consent. Griffiths (2008) made the judgment not to seek any consent
because she believed that the patients were acutely ill and should not be ‘bothered’ with the detail of research
projects and the process of consent. Similarly, Moore and Savage (2002) stated that patients became anxious
when told of the need for consent. In the Occupational Therapy code of ethics and professional conduct,
section: 2.3 (2010) it is stated that informed consent is a continuing requirement which needs adequate
explanation. An occupational therapist must therefore ensure the patients continue to understand the
information they receive and any changes to that information, thereby continuing to consent to the research
projects in which they are participating. The research studies the author uses to illustrate the issues of
informed consent depend on building up a relationship of trust with the participant in order to obtained
consent. It is further suggested that a process consent method is a necessary requirement for person-
centered research. The advantage of informed consent is that results are likely to be more accurate because
the participants are aware of the purpose of the research and know they can opt out from the project at any
time (Dewing, 2002).

In conclusion it is clear that researchers, when conducting research projects using qualitative studies on
patients with dementia, need to give serious consideration to ethical issues. It is important for these
researchers to develop an attitude with which dementia sufferers will not have a problem when contributing
their knowledge with regards to several issues. As emphasized by Kitwood (1997), dementia sufferers also
need to be given a voice in the conduct of qualitative studies. This would make these individuals feel
acknowledged in the wider community since the researchers will have shown they respect their values just as
they do those of any other individuals. Much as the aim of this whole process is to provide these people with a
voice in the community it is also vital that the researcher considers the feasibility of interviewing these
patients. Among the important issues that researchers need to consider are the ethical issues of assent and
consent. It is the researchers’ responsibility to be careful of and protect the participants’ dignity (Moore &
Hollet, 2003). This is especially important for patients suffering from dementia. Getting the consent of the
patient and backing it up with approval from a close family member is vital. In the event that the participant
does not meet the criteria for capacity to consent it is important that the researcher refrains from using
information provided by this participant in the compilation of the research data. We have observed that ethical
issues which surface are not always simple to resolve, but it is essential to spot potential ethical problems so
that ways can be found to address them. Whether or not a piece of research must be first submitted to an
ethics committee, raising ethical queries during the planning period helps to ensure the security of both
participants, particularly dementia patients, and researchers – eventually leading to improved, as well as
reasonable research.

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