The IRB Regulatory System Culturally Restricts US Qualitatively-based Participatory Bereavement Research

The IRB Regulatory System Culturally
Restricts US Qualitatively-Based
Participatory Bereavement Research
Joseph “Joe” Marquette
Director of Bereavement Services
San Joaquin County Hospice
Ethics
Rules and
Regulations
Values
Research
Moral
Principle
Ethical
Decision-
Making
Models
Ethical
Practices
Rules of
Conduct

What is an IRB? What is Qualitative
Bereavement Research?
IRB
 An IRB is a duly constituted
group of academically-based
members formally charged with
reviewing and monitoring
biomedical research involving
human subjects. The FDA
mandates that the IRB has the
authority to approve, order
alterations to secure approval or
disallow research inquiries. IRB
members view their serves as an
important role in the protection
of the rights and welfare of
human research subjects.
Qualitative Research
 Bereavement is a state of
having suffered a loss.
Researchers use ethnography to
investigate bereavement within
cultures, cultural groups, large
organizations and groupings, and
their features. Case studies
examine single cases of
bereavement. Grounded theory
develops models to understand the
reality of bereavement.
Phenomenology studies the lived
experiences of bereavement.
Heuristics explores bereavement’s
personal experiences and insights
from the researcher’s perspective.

Reports Reveal Partaking in Qualitative
Research is not Harmful Comparative to IRB
Perceived Philosophies
 Antagonistic to the microethical constraints that IRBs
place on bereavement researchers, many European-
based, as well as US-based palliative care and clinical
psychology studies report that participant accounts
add importance to the emerging body of evidence that
partaking in research does not cause distress or
prolonged suffering. Furthermore, these and alike
studies confirm the opinions of bereavement
researchers that IRB micoethical constraints and their
ethical decision-making process concerning the issues
of harm and informed consent surrounding
bereavement research are culturally prejudiced and
incorrect.

A Hypothetical Case Overview
 Joe is a 55-year-old married Caucasian Christian male
who directs the Hospice Care Center in Stockton,
California. Joe is one of many bereavement researchers
from around the world who specialize in death studies.
Joe submits a research proposal entitled, “Qualitative
Bereavement Research: Cultural and Ethical Differences
between Researchers and Institutional Review Boards.”
Jill is 75-year-old widower Catholic, African American
female who is the Chair of the Institutional Review
Board (IRB), as well as a member of the Board of
Directors for the Hospice Care Center. Jill believes the
bereaved population is unable to provide informed
consent because they are in a state of acute grief and that
the in-depth qualitative interview is likely to cause more
harm than good. Jill summarily dismisses Joe’s proposal
based upon these ethical concerns.

Joe
(Director of Bereavement
Services and Researcher)
Jill
(IRB Chair and Member of
the Board of Directors)
 Age 55 (Middle-Aged
Adult)
 Jill 75 (Senior Adult)
 Gender: Male  Gender: Female
 Ethnicity: Caucasian  Ethnicity: African
American
 Religion: Christian  Religion: Catholic
 Martial Status: Married  Marital Status: Widower
Hays ADDRESSING Model Identifies
Cultural Differences Between Joe and Jill

Canadian Code of Ethics for Psychologists
Strengths
1. Principle III: Integrity in
Relationships; Standards
III.30 and III.31,
Avoidance of Conflict of
Interest, asserts
psychologists avoid dual
or multiple relationships
with employees.
Weaknesses
1. While Jill is a member of
the Board of Directors for
the Hospice Care Center,
as well as the IRB Chair
overseeing Joe’s
bereavement proposal, Jill
might argue there is a lack
of accessible alternatives
to correct her duel
relationship with Joe.

Strengths
2. Principle IV:
Responsibility to
Society; Standards IV.15
and IV.16, Respect for
Society, asserts
psychologists acquire
adequate knowledge of
the bereavement culture
when pursuing scientific
activities with respects
to the prevailing values
and social customs.
Weaknesses
2. IRBs view responsibility to
society by protecting itself, but at
the expense of community
equality. By doing so, IRBs may
inadvertently be encouraging
deceit when requiring
bereavement researchers to adjust
their design methodology or data
collection methods. In doing so,
IRBs are creating and reinforcing
tensions between US-based
bereavement researchers and
IRBs.

Strengths
3. Principle I: Respect for the
Dignity of Persons and Peoples;
Standard I.1, General Respect;
Standard I.11, Non-
Discrimination; Standard I.16,
Informed Consent.
Weaknesses
3. The IRB ethical culture is
likely unaware they are
harming the process of
understanding and
respecting the grieving
process by unknowingly
discriminating
bereavement researchers
from studying grief’s
mechanisms, domains, and
processes in order to help
persons and peoples who
are grieving is an ethical
issue in-of-itself.

The Current IRB Regulatory System
 The cultural ethics for
IRBs protects itself at the
expense of community
empowerment (Koenig,
Back, & Crawley, 2003)
 IRBs may inadvertently be
creating a bereavement
research culture that
encourages deceitfulness
(Legerski & Bunnell,
2010).
 There are increasing
cultural and ethical
tensions between
bereavement researchers
and IRBs concerning the
perception of harm and
informed consent (Moore
et al., 2013)
 The current cultural and
ethical decision-making
system within IRBs
operates by utilizing a
biomedical framework
which is exceedingly
restricts social researchers
(Corbin & Morse, 2003).
Cultural and Microethical Concerns When
Conducting Bereavement Research

Current IRB Regulatory System
 Qualitative bereavement
scholars often have to
negotiate unwritten IRB
microethics when
submitting research
proposals (Pollock, 2012).
 Closed IRBs meetings
and minutes are not made
available beyond the
institution, and IRBs do
not take into consideration
the researchers’
professional background
concerning bereavement
(Ross et al., 2010).
 When bereavement researchers submit qualitative designs
for review, IRBs frequently fail to adjust to the changing
meaning of harm citing that bereaved participants live in
a state of acute grief and accordingly are incompetent to
give informed consent to participate in a research study
(Ahern, 2012; Appelbaum et al., 2009).
Cultural and Microethical Concerns When
Conducting Bereavement Research

Principle and Ethical Standards in Qualitative
Bereavement Research
Strengths
1. Principle II:
Responsible Caring.
2. Protections for
Vulnerable
Individuals and
Groups, Standard
I.31.
Weaknesses
1. It is reasonable there exists
underlying health vulnerabilities that
bereavement researchers are unable
to anticipate, which may harmfully
influence their abilities to care
responsibly for research participants.
2. The nature of grieving includes
pangs and waves of grievous
responses which are not foreseeable.
Therefore, bereavement researchers
must require clinical expertise to
engage in empathic neutrality to
recognize potential instances of
harm.

Principles and Ethical Standards in Qualitative
Bereavement Research
Strengths
3. Multiple Relationships
and Informed Consent;
Standard I.26.
Weaknesses
3. Couples or families who
partake in bereavement
research often want to know
what their significant others
disclose during the in-depth
interview.

Deontological Ethical
Reasoning
Feminism Ethical Reasoning
 The deontological
reasoning model is an
ethical decision-making
process that requires a
judgment derive from
one’s duty or obligation to
do the right thing.
 The Feminism reasoning
model is an ethical
decision-making process
that requires the act be
based on behalf of
individuals or peoples with
whom researchers believe
a significant relationship
exists.
Comparative Differences Between Deontological
and Feminism Ethical Reasoning

Reasoning
Feminism Ethical
Reasoning
 Deontology places one’s
duties and responsibilities
over consequences and
costs.
 Feminist or care ethics
regards when an emotional
commitment exists, acts
are on behalf of an
individual or peoples with
whom they have a
significant relationship is
central to ethical decision
making.

Reasoning
Feminism Ethical
Reasoning
 Deontological ethical
decision-making requires
practical actions that apply
terrestrial rules or laws for
every circumstance despite
relationships, contexts,
perspectives, or
consequences.
 Feminist reject the
preeminence of universal
and individual rights in
favor of relationally
specific obligations.

Reasoning
Feminism Ethical
Reasoning
 Deontological reasoning
and decision-making are
moral, only if a reasonable
individual considers the
action will result in a
decision that is universally
supported in all
circumstances.
 Feminist reasoning and
ethical decision making
focuses on power
imbalances and supports
efforts to promote equality
of power and opportunity
without involving
deceptive research
activities or practices.

Ethical Decision-Making Using the Feminism Model
 Henceforth, bereavement researchers and IRBs are
referred to as partners.
1. All partners will advance and maintain a
professional commitment to producing the greatest
good and the least harm through empathic neutrality
for all bereaved participants, including stakeholders,
colleagues, relevant organizations, and the general
public (Fisher, 2012).
2. All partners will maintain a fluency with APA’s
General Principles and Ethical Standards to
anticipate happenings that require ethical planning,
and to identify unexpected events that require
empathic neutrality in ethical decision-making to
reduce any potential of causing harm (Fisher, 2012).

3. All partners will collect pertinent and relevant facts
regarding any ethical dilemmas from reputable
sources, such as professional publications and
organizations, state and federal laws, as well as
university policies and procedures. All partners will
reinforce the commitment to maintain a significant
relationship between (a) bereavement researchers,
and (b) IRB members (Fisher, 2012).

4. All partners must understand how ethical actions
effect everyone equally, or if unequally, justify an
ethical standard that is defensible with the intent the
norm has a greater contribution to an organization or
group of people (Fisher, 2012). In furtherance of a
significant relationship, IRBs and bereavement
researchers will provide one another with any
relevant information regarding the concepts of harm
and informed consent concerning the bereaved
population.

5. In maintaining a significant relationship, all partners
will utilize steps 1 through 4 to generate ethical
alternatives in assessing the efficacy of each
alternative as it pertains to the Feminism Model of
ethical decision-making, APA’s General Principles
and Ethical Standards, as well as pertinent state and
federal laws, University policies and procedures, and
the likely consequences to other various stakeholders
(Fisher, 2012).
6. In the maintenance of a significant relationship, IRBs
and bereavement researchers will make efforts to
understand the perspectives of the various
stakeholders regarding any decisions made about the
bereaved population (Fisher, 2012).

7. When monitoring and evaluating the efficacy of a
course of any action to resolve an ethical dilemma,
all partners must further their significant relationship
when generating ethical and reasonable alternatives
by including honesty, courage, compassion,
generosity, tolerance, fidelity, integrity, fairness, self-
control, and prudence (Fisher, 2012).
8. To extend IRBs’ and bereavement researchers’
comment to maintaining a significant relationship, all
partners will monitor and evaluate each ethical
plan’s effective action, and modify and continue to
evaluate each plan as necessary (Fisher, 2012).

What can Bereavement Researchers do to Work
Within IRB Microethical Constraints?
 Critical scholars must have a consensus regarding the
diagnostic term and criteria because it currently varies from
complex, traumatic, complicated, and pathological grief, to
the most frequently used term, prolonged grief (Rando et al.,
2012).
 In a recent study, there seems to exist an agreement that
‘prolonged grief disorder’ represents a distinctive mental
illness worthy of diagnosis and treatment (Maciejewski et
al., 2016).
 IRBs often reject proposals with varying diagnostic terms
and criteria that classifies a maladaptive pattern of grieving.
 Complex Grief (Holland et al, 2009).
 Traumatic Grief (Boelen et al., 2003).
 Complicated Grief (Prigerson et al., 1995).
 Pathological Grief (Stroebe et al., 2003).
 Prolonged Grief (Prigerson et al., 2009).

What can Bereavement Researchers do to
Work Within IRB Microethical Constraints?
 Bereavement researchers must ensure bereaved
participants are capable of providing informed
consent.
 Bereavement researchers must ensure bereaved
participants are not exposed to any vulnerable
circumstance.
 When bereavement researchers conduct in-depth
qualitative or discovery-oriented interviews, they
must ensure not to induce a negative mood state or
cause emotional pain.

An Aimed Solution and Framework for Ethical
Decision-Making that Addresses IRB Microethical
Constraints
 The subsequent slides addresses the theoretical
debates about the nature of grief and bereavement
that often draw attention to the sensitivity of carrying
out US-based qualitative research with bereaved
individuals, the possible threats that the in-depth
interview may pose, and the ethical considerations
required to diminish potentially damaging outcomes
regarding informed consent.

A Proposed Solution and Framework for
Qualitative Bereavement Research
Ethical Considerations
1. Participant
identification, and
recruitment access.
Practical Strategies
1. Bereavement researchers
must officially acquire
support of a key person
to assume the role of
identifying potential
participants and
disseminating pre-
prepared recruitment
packs on behalf of a
research team.

2. Respect.
2. Only recruit potential
participants in a serial
manner. In other words,
send out only a
maximum of five
recruitment packs at any
one time so participants
are not kept waiting for
long periods before the
in-depth interview.

3. Respect and relevance.
3. Consider participant
inclusion criteria of
bereaved no less than 3
months and no more than
12 months at the time of
recruitment to the study.

4. Compassion.
4. Include a cover letter that
introduces the study in a
personalized way by
taking familiarity into
consideration.

5. Informed choice.
5. Bereavement researchers
must provide clear
written and web-based
information about the
researchers and the
study. Include an
invitation to contact the
researcher. Demonstrate
timely responsiveness to
any potential questions
or queries.

6. Non-coercion.
7. In-depth interview
choice and respect.
6. Provide a minimum of
10 days for participants
to decide about joining
the study.
7. Agree on a convenient
date, time, and venue for
the in-depth interview.
Avoid dates that coincide
with significant family
events or anniversaries.

8. Participant safety and
support.
9. Choice and
confidentiality.
8. Use only competent
researchers with
experience in conducting
sensitive in-depth
interviews.
9. Provide each participant
with the option of
choosing either a face-to-
face interview, or
remotely, via telephone.

10. Informed consent.
10. Give a summary about the
study and present opportunities
for participants to ask
questions. Describe how the in-
depth interview will proceed.
Acquire written agreement to
audio-record the interview and
to use anonymous quotes in
any presentation of the
research. Give participants a
copy of the signed consent
form to keep.

11. Support each
participant
empathically.
11. Discuss with each participant
and agree on avenues of post-
interview support prior to the
in-depth interview
commencing. Observe and
listen for signs of distress
during the in-depth interview.
Discuss the option of pausing
the recording or stopping the
in-depth interview. Plan for
natural breaks for refreshments
during the in-depth interview.

12. Confidentiality and
anonymity.
13. Post in-depth interview
follow-up support.
12. Ensure audio-recordings and
transcriptions are securely
stored and electronic data are
password protected. Assign a
study code at each point of
transcription.
13. Coordinate a convenient time
to telephone each participant
with 24 to hours post-interview
to check on any potential issues
that may have surfaced and
answer any questions.

14. Appreciation.
15. Involvement.
14. Send each participant a
personal thank-you letter and
offer an executive summary of
the research findings.
15. Provide participants with an
opportunity to evaluate their
experience of participating in
bereavement research.

Influence of Culture
IRBs
 IRBs review and monitor
research solely from a
biomedical perspective.
 IRBs have the exclusive
authority to approve,
order alterations to secure
approval, or disallow
research inquiries.
 IRBs lack transparency
regarding their meetings
and minutes.
Bereavement Researchers
 The nature of qualitative
studies likely requires
more rigorous oversite.
 Alterations to
qualitatively-based
design methodologies are
limited.
 Many researchers lack
clinical expertise that is
often require when
conducting sensitive
interviews.

Influence of Culture
IRBs
 IRBs are overly
restrictive towards
qualitative bereavement
research.
 IRBs internationally raise
unreasonable objections.
Bereavement Researchers
 Researchers have yet to
define or report example
of ‘overly restrictive.’
 Researchers fail to define
their perspective of an
‘unreasonable objection.’

Conclusion
 Increasing tension between IRBs and qualitatively-based
bereavement researchers.
 Qualitatively-based bereavement research introduces many
ethical concerns.
 There is a lack of consensus on terms and criteria related to
grief.
 Participation contributes to a greater understand of the
grieving process.
 There are several cautions and considerations when
conducting bereavement research, such as time since death,
site choice, informed consent, trained interviewers, and
competence.
 Grief consists of multiple processes, emotions, stages, tasks,
and phases.

Conclusion
 The IRB ethical culture is likely unaware that harming the
process of understanding grief in order to help those who
are grieving is an ethical issue in-of-itself.
 IRBs recognize grief’s abstract construct, that it is nearly a
universal experience, but IRBs do not see that the
experience is unique to the person who is experiencing grief.
 Bereavement researchers have demonstrated that grief is a
distinct construct, but a diagnostic criteria was not assigned
in the DSM-V citing more clinically controlled studies are
needed.
 US-based IRBs are less likely to approve a qualitatively-
based bereavement research proposal comparative to either
biomedical or clinical bereavement related proposals.
 IRBs’ ethical culture is harming the research process of
bereavement researchers’ willingness to understand grief so
they can help people who are grieving maladaptively.

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