Findings
Genetics and Pastoral Counseling: A Special Report
by Philip J. Boyle
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However, the inpatient focus of
pastoral care, which is normally short
term, reduces the likelihood of contact
with outpatients who are seen in clinics
or in physicians' offices. Patients with
chronic genetic conditions treated in
outpatient settings will likely have little
contact with pastoral counselors.
Patients and families who receive genetic
testing as part of prenatal testing will
rarely have access to the institution's
chaplains.
A consensus paper issued by five
leading professional groups of pastoral
counselors suggests that there is a
greater likelihood that patients with
genetics-related conditions will rely on
healthcare institutions' pastoral counselors
than on other religious leaders
who might provide counseling:
Many religiously active persons do
not notify their local clergy of their
hospitalization . . . . Additionally, many
patients do not have a religious community
to which they can look in
healthcare crises. In one study, only
42 percent of hospital patients could
identify a spiritual counselor to whom
they could turn, and many of them
had not talked to their religious leader
about their situation . . . . For others,
attention from their spiritual
counselor is limited by being in a hospital
far from home . . . , by patient
concerns about privacy or confidentiality,
or [by] a fear that their own
religious leader would not understand
or be supportive.34
A less common but extremely
effective means of a pastoral counselor's
entry into genetics-related cases is
through clinical genetics professionals
who refer patients and families to pastoral
counselors, either as a standing
practice or on an as-needed basis. A
few of the interviewed geneticists, genetic
counselors, and social workers made
it a practice to inquire about patients'
religious involvement and, if the patients
expressed interest, to refer them to pastoral
counselors. Clinical genetics professionals
normally refer to pastoral
counselors within the healthcare institution
whom they know personally or
who have a reputation for competent
pastoral care. If the clinical genetics
professional does not know the pastoral
counselor, he or she utilizes different
strategies. Clinicians ask patients if they
have a good relationship with their congregational
pastoral care person and
then refer to that person. Alternatively,
they contact clinical colleagues for referrals
to pastoral care people who have
experience in dealing with genetics
issues. Sometimes they tell a patient of
their willingness to speak directly to a
pastoral care professional, if the patient
gives permission. In sum, availability
and positive prior experience of pastoral
counselors increases the probability
that clinicians will refer.
Only in a few cases did interviewees
report that pastoral counselors proactively
inserted themselves into a situation
when the patient had a genetic
condition. This practice was most evident
with pastoral counselors who provided
education. For example, some
congregational pastoral counselors educate
congregants about genetics issues,
especially genetic testing. In some religious
communities, for example, among
Orthodox Jews in New York and in areas
with a high concentration of Muslims,
religious leaders commonly address
genetics-related religious issues. In
some cases pastoral counselors help
couples respond to prenatal diagnoses of
genetic abnormalities or assist in arranging
marriages. Interviewees noted that in
these same communities, some patients
and families seek pastoral support from
local pastoral counselors while considering
genetic testing or after receiving a
genetic diagnosis. One respondent, who
identified himself as a rabbi, recounted
that Jewish women with breast cancer
who wanted mastectomies frequently
involved the rabbi because under Jewish
law self-mutilation is forbidden
unless it can save a life. Several pastoral
care respondents noted that the most
frequent psychological reason they are
sought out by patients is the issue of
guilt, especially before or after the termination
of pregnancy. However pastoral
counselors become involved in
genetics cases, interviewees perceived
that pastoral counselors are most
involved with genetic issues at the
beginning and end of life. Problem
pregnancies are laden with religious
and ethical value conflicts, especially if
abortion is a possibility.
Why pastoral counselors do not participate
Interviewees were clear about why
pastoral counselors do not participate in
genetics-related cases. A significant number
of genetics professionals reported
negative experiences with pastoral counselors,
particularly pastoral care professionals
who were judgmental or who
undermined the genetic professional's
counsel. Some cited these experiences to
explain their reluctance to mention pastoral
counseling as an option. They
believed that they were "protecting" their
clients from further suffering that "hardline"
clergy might impose.
Other Studies
The current study was supported by two
earlier studies (a study of clergy in Indiana
and a study of rabbis) that provided
snapshots of pastoral counselors' knowledge
and practice in relation to genetics.
This research makes it clear that the
majority of clergy have not been prepared
to assist congregants with their
genetics-related problems. In the study
of Indiana clergy, 77 percent of the
responding clergy indicated that they
spent up to 5 percent of their counseling
time dealing with problems related
to genetics. None of the respondents
claimed to spend more than 20 percent
of their counseling time on geneticsrelated
matters. According to the
authors, these findings have at least
three possible causes: 1) neither clergy
nor their congregants recognize the
genetic component of many physical
and mental conditions; 2) congregants
fail to recognize underlying moral/ethical
issues in genetics, which they perceive
as largely medical and for which,
as a result, they look to physicians for
counseling; 3) congregants do not view
their clergy as having professional training
to deal with problems in human
genetics. The study also found that 83
percent of the respondents indicated
that they had not offered their congregations
educational programs on the
moral dimensions of making decisions
related to genetic disorders. These figures
are understandable in light of a
central finding of this study, namely,
that 68 percent of the respondents had
no formal education in genetics, genetic
disorders, or reproductive technolo-
gies. Of the 32 percent who had some
formal education in these areas, only
one in three had received it through a
college-level course. Moreover, 73 percent
of respondents indicated that they
had not had any formal education in
making ethical decisions relative to
problems in human genetics and reproductive
technologies.36
In addition to this lack of genetics
education, the study found that 44 percent
of respondents were unsure
whether their denomination had issued
a formal statement on human genetics
and reproductive technologies; 30 percent
indicated that their denomination
had not issued such a statement, while
24 percent were certain their denomination
had done so. Finally, only 8 percent
of respondents claimed to know
the location of centers in their state that
provided counseling and diagnostic services
in human genetics.
In summarizing the findings of
their 1993 study of the involvement of
rabbis in genetic counseling and referral,
Steiner-Grossman and David
reported that 56 percent of respondents
indicated they discussed health issues as
a routine part of premarital counseling.
In addition, 22.3 percent indicated they
had counseled a couple after prenatal
diagnosis of an abnormal fetus. The
study found that Orthodox rabbis were
more likely to distribute pertinent literature
to their congregants, and more
likely than rabbis from the other
branches of Judaism to have contacted
medical personnel in these circumstances.
Orthodox rabbis also reported
more involvement in assisting families
after the birth of a child with a hereditary
condition or birth defect. At the
same time, 90.9 percent of respondents
from all branches indicated they would
refer families in this situation for genetic
counseling. Ninety-four (53.7%) of
the 181 respondent rabbis indicated
they discussed Tay-Sachs carrier testing
with their congregants. These rabbis
tended to be Reform, to be younger,
and to be more recently ordained.
Reform rabbis also demonstrated significantly
more knowledge than Orthodox
or Conservative rabbis about Jewish
genetic diseases.
While nearly 90 percent of respondents
considered counseling on genetic
issues to be part of their rabbinical role,
most rabbis, including those who actually
provided counsel, considered themselves
poorly trained for it. For example,
89.1 percent of respondents indicated
that they had never taken a course or
attended a workshop or lecture on Jewish
genetic diseases. Of the 19 rabbis
who had taken a course, only 2 had
taken it in rabbinical school. The
remainder indicated they had gained
exposure to this information at rabbinical
meetings, lectures, or workshops
at medical sites. In contrast, when asked
what ought to be done in this area,
almost 90 percent of respondents indicated
that counseling about Jewish
genetic diseases should be part of their
role, and more than 90 percent called
for educational programs on these diseases
as part of rabbinical training.
Large majorities from each of the
branches recommended programs and
courses on Jewish genetic diseases in
rabbinical school. This recommendation
was accompanied by a consistent
request for assistance in improving their
counseling skills and building their
referral networks.
The studies of Indiana clergy and
of rabbis provide a snapshot of practice
that may not be representative of all
pastoral counselors. The picture of pastoral
counselors' involvement in genetics
provided by the current study's
interviewees suggests a wider variety of
practice, depending on geographic location,
availability of a pastoral counselor,
and familiarity with the counselor.
METHOD
The project on Genetics and Pastoral
Counseling conducted a total of 17
computer-assisted telephone focus
groups with clinical genetics professionals
(clinical geneticists, genetic
counselors, and social workers), with
pastoral counselors who have case experience
with genetic disorders, and with
professionals who have expertise in both
religious counseling and clinical genetics
("bridge" participants).38
Focus Groups
Focus groups are a cost-effective way to
obtain clear, rich, in-depth qualitative
information when one does not know
the issues or perspectives of certain
populations, such as target audiences,
stakeholders, decision makers, end
users, intermediaries, and those who
produce or provide products or services.
39 Studies use focus groups as a
source of expert input for planning and
improving products, services, research
instruments, organizational procedures
and practices, interventions, educational
programs, and other communications.
Focus groups explore what
people think about and how they think
about it.40 In view of the inherently
exploratory nature of research that
seeks to identify roles and competencies
in an emerging field for which there is
a paucity of existing research, focus
groups are the most appropriate
research method for such studies.
Focus groups allow guided discussions
among a small group (6-12
participants), with the interviewer serving
as a "moderator." Participants are
the experts on the topic, since the topic
is what they think, feel, or do. A discussion
guide (i.e., a checklist of topics
to be covered in an expected order) is
used to direct the discussion. The moderator
guides conversation gently
through each topic until it appears to
have become unproductive, and returns
to it later if it emerges in a different context.
This flexibility allows the moderator
to probe and clarify implied or
unclear meanings and context. It allows
participants to raise important issues
and consider nuances that researchers
do not foresee. Relatively homogeneous
groups of participants stimulate,
support, and build on each other's ideas
about the topic and clarify areas of disagreement.
They discuss the topic in
their own framework and terms. As
they become more sensitized to the
topic and to each other, participants
may take the discussion beyond the
rhetorical or the habitual. They "open
up" and may reveal important material
that would not have emerged in
direct questioning—but may emerge in
natural settings. Similarly, as
researchers learn about new issues, they
can quickly introduce them into subsequent
focus groups for further exploration.
For all of these reasons—group
interaction, spontaneity and openness,
descriptive depth, qualitative data,
opportunity for unanticipated issues to
emerge, and flexibility—focus groups
seemed well-suited to exploring possible
roles of clergy in ethical/religious
counseling related to genetic disorders.
Computer Assisted Telephone (CAT)
Focus Groups41
Telephone focus groups have been in
use for over 30 years, and have been
enhanced by computer technology
invented in the past decade. Organizations
are finding this technology increasingly
valuable for reaching people all
over the U.S. Extending beyond the
usual less-than-a-handful of major markets,
it allows many locations and kinds
of participants to be represented when
they would not otherwise be considered.
It is especially useful when participants
are geographically dispersed,
relatively few in number, reluctant or
unable to travel to a central facility, or in
need of anonymity.42 For this project,
the CAT method made it feasible to
include members of relatively small
groups of busy, hard-to-access professionals
and specialists of different religious
backgrounds who were dispersed
across the United States and Canada.
People can participate in CAT
focus groups from the comfort of their
homes or other private places where
they have access to a phone. This feature
permits equal ease of access across
locations. Participants may also be more
candid than in face-to-face groups
because there is less opportunity for
facial "intimidation": all are equal on the
phone. Telephone focus groups also
make it easier for professionals to have
ready access to information and materials
they consider relevant to the topic,
and thus for interviews to yield greater
depth and detail.
In these focus groups, everyone
can hear everyone else clearly. Interaction
starts quickly and is often more
natural and intense than in face-to-face
groups. The fact that participants cannot
see each other is not unusual or
problematic. People use the phone to
communicate all the time. Participants
use complete sentences and auditory
cues, such as "uh-huh," to substitute
for nonverbal head nods. They are
encouraged to chorus their agreement or
disagreement. Pauses become more
obvious and meaningful. Many other
auditory cues supplement the conversation,
as when participants use their name
each time they speak. Mutual invisibility
also permits more creative and
diverse group composition, and permits
mixing people from different specialties
or professions (who might comprise a de
facto health care "team").
The computer technology provides
several unique advantages. By looking at
a computer screen, the moderator can
identify who is talking. Research
observers can call in from anywhere to
listen without being heard, and can pass
notes to the moderator by using their
telephone touch pad to contact a technical
assistant; the notes appear on the
moderator's computer screen without
interrupting the group.
Compared with face-to-face focus
groups, CAT focus groups are more representative,
easier to recruit, and more
quickly arranged. They eliminate the
costs, time, and inconvenience of travel
for client observers as well as for focus
group participants. They permit involvement
by a broader variety of clients (in
this case the research team observers) as
well as participants.
Participants
In this study, researchers conducted
focus groups with several categories of
professionals who work with patients
and their families to address the medical
and psychosocial issues surrounding
genetics problems, testing, and treatment:
genetic counselors, physicians
(medical geneticists and other specialists
who treat patients with chronic diseases
of genetic origin), social workers who
coordinate social services with persons
who have genetic conditions, and pastoral
counselors (typically hospital
chaplains) who have experience in
counseling when genetic disorders are
involved. These four professional categories
included those most likely to provide
counseling to persons with genetic
conditions, and they represented three
different professional orientations: psychological,
medical, and religious. Focus
groups with professionals who had
expertise in both religion and genetic
counseling ("bridge" participants) were
also conducted.
Specifically, the focus groups included:
- 2 groups of bridge participants
- 3 groups of pastors/chaplains
- 3 groups of clinical geneticists
- 2 groups of chronic care physicians
who treat genetic conditions
- 3 groups of genetic counselors
- 3 groups of social workers
- 1 group of mixed professionals (i.e.,
clinical geneticists, genetic counselors,
social workers, and pastoral
counselors)
Names of prospective participants
to be invited were drawn from national
directories of their respective professions,
electronic mailing list announcements
in professional organizations, web
sites for specific genetic disease clinics,
and (for the bridge groups) lists that surfaced
in networking among members of
the research team and Advisory Board.
Prospective participants were contacted
by telephone by a professional
recruitment service that specializes in
recruiting hard-to-get participants for
teleconferences, focus groups, and individual
interviews for qualitative research.
Recruiters screened prospective participants
with a brief closed-end questionnaire
about their demographics and
practice, and offered qualified prospects
a summary of the research and $125 for
themselves or as a contribution to a charity
of their choice. Participants agreed to
share their views on ethical/religious
counseling with patients and families
about genetics-related disorders in a
90-minute teleconference discussion
with other professionals like themselves
across the nation. Participants who
agreed to be in a focus group session
were scheduled according to their availability
and their demographic characteristics
(to assure that at least two
minority groups and both genders, as
well as a diversity of faiths among chaplains,
were represented).
Participants who agreed to join a
focus group were apprised beforehand,
in writing, of topics to be covered. The
advance notice provided them an opportunity
to review documents and to formulate
initial thoughts about the topics.
They also were offered the opportunity to
review, correct, and amend a summary of
their focus group session. This process
helped to maximize the accuracy, completeness,
and relevance of the research.
To the extent possible, each focus
group was screened and selected to
assure geographic, ethnic, and religious
diversity. The focus group leader and
research observers interviewed 145-150
participants. They came from 37 states in
the continental U.S. and 2 provinces in
Canada. They included representatives
of a variety of Christian denominations
(mainstream, traditional, fundamentalist,
and evangelical Protestants; Catholics;
and Seventh-day Adventists) as well as
representatives of minority religions
(Jewish, Muslim, Hindu, Mormon, Unitarian/
Universalist, and Yaqui Indian).
Atheists, agnostics, and those who said
they were "spiritual" or "searching"
were also included. Participants served
a variety of religious populations,
including 6 mentioned by name (Amish,
Hasidic Jews, Mennonites, Muslims,Mormons, and Ashkenazi Jews), and
they served 26 named ethnic, national,
or cultural populations (including
African, African American, Arab/Middle
Eastern, Asian, Caucasian, Pacific
Islander, European, Caribbean Islander,
Hispanic, Native Alaskan, and Native
American populations).
It is important to note that the
resulting sample is small, and is not
intended for statistical use. Rather, it
serves a specific purpose: it provides
rich qualitative data about what a diverse
set of relevant healthcare professionals
think about current and possible roles
for pastoral counselors in the area of
ethical and religious counseling about
genetics—and how they think about the
issues involved.
Discussion Topics
Each focus group covered a series of
topics intended to answer the research
questions. These topics included: current
and expected (or ideal) roles of
various pastoral counselors, such as
congregational clergy, rabbis, imams,
and hospital chaplains; pastoral counselors'
actual and expected literacy in
genetics; barriers to pastoral counselors'
participation (e.g., professional barriers
rooted in alternative professional values
and beliefs, or in turf issues; institutional
barriers ranging from hospital
policy about genetics counseling and
treatment to practices such as the failure
to include pastoral counselors as regular
members of a clinical care team);
referral practices of clinicians and pastoral
counselors; and frequency and
range of genetics cases. The specific
topics for the focus groups were developed
in consultation with the project's
Advisory Board.
Analysis of Data
All focus group sessions were audiotaped,
observed by investigators and
members of the Advisory Board, and
transcribed (with participants' informed
consent). Immediately after each group,
the moderator (George Balch) and
observers debriefed on the telephone to
review what had been said, what it
meant, and what, if anything, might be
changed for future focus group sessions.
Such changes included adding new topics,
dropping unproductive topics,
redefining current topics, and changing
the order of topics.
The research team prepared written
summaries of focus group sessions.
After each round of six focus groups, the
research team analyzed and summarized
the transcript data and debriefing
discussions (which were also audio-taped and transcribed) to identify patterns
in the response of genetics professionals
to questions about the role of
pastoral counselors; the level of genetics
literacy necessary for pastoral counselors
to counsel competently;
rationales for supporting or opposing
the participation of pastoral counselors
from congregations and/or hospitals in
genetics-related counseling; and actual
practices regarding the provision of ethical
and religious counseling to patients
and their families.
The research team and the Advisory
Board convened by teleconference
twice to review summaries of focus
group sessions, as well as to suggest
revisions in the data collection procedures
for the next round. After completion
of the final round of focus
groups, the research team prepared a
draft report based on thematic analysis
of all of the transcripts. Members of the
Advisory Board were asked to submit
their suggestions for revision and amplification.
They also discussed strategies
for disseminating the final report and
recommendations.
STUDY RESULTS AND RECOMMENDATIONS
BARRIERS
Perceived barriers to effective use
of pastoral counselors can be grouped
into two broad categories: first, barriers
relating to the nature and practice of
pastoral counseling, and to the attitudes
of various professionals toward pastoral
counselors and their practice; and, second,
institutional and systemic barriers.
Barriers for professionals constitute
the larger category and are related to
knowledge, skills, practice patterns, professional
self-understanding, interprofessional
relations (such as professional
turf issues), and professional ideologies
and biases.
Who Is a Pastoral Counselor?
The most obvious barrier to increased
use of pastoral counselors is confusion in
identifying them. No uniform understanding
of who is a pastoral counselor
exists among the general population or
among most of the professionals interviewed.
Most interviewees thought pastoral
counselors to be chaplains, clergy,
pastors, rabbis, imams, spiritual counselors,
and religiously educated lay
professionals (sometimes called lay ministers)
who work in the name of denominations,
congregations, and temples. Not
surprisingly, seldom did interviewees distinguish
ordained from nonordained pastoral
counselors, differentiate pastoral
counselors who work in congregations
from those who work in health care and
other settings, or discriminate among
pastoral counselors according to the
amount or kind of theological and pastoral
education they have. Only a few of
those interviewed identified "pastoral
counselors" not as a generic designation
but as a distinct profession with its own
credentials and competencies.
The effect of stereotyping pastoral
counselors as a homogeneous group is
predictable. Patients' and healthcare
professionals' positive and negative perceptions
of pastoral counselors in one
setting, such as a congregation, often
color the perception they have in another,
such as health care. A remarkable
number of interviewed healthcare professionals
based their negative perceptions
of pastoral counselors who
addressed genetics-related concerns on
one unhappy episode, such as an experience
with a clergy person who mishandled
a situation involving genetics.
Consequently, clinical genetics professionals
applied this perception to the
entire class of pastoral counselors.
The inability to distinguish among
the different kinds of pastoral counselors
can function as another barrier. It
is as significant a misconception as a
failure to distinguish geneticists working
with childhood illnesses from those
addressing adult neurological diseases.
Those who can be categorized as pastoral
counselors range from those who
have had seminary training in the doctrine
of a religious tradition, yet little or
no pastoral training, to those who have
a master's level education in religion
and have spent significant training hours
in clinical pastoral education. Again,
for the purposes of this study, the designation
"pastoral counselor" refers to
all those listed above as pastoral counselors,
broadly construed. However, in
the recommendations below, note that
certain subcategories of pastoral counselors
with specific education, skills,
and certification are deemed to be better
prepared to address genetics issues.
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Second Opinion #11
Publisher: Park Ridge Center, Chicago
Date: April, 2005.
ISSN: 0890-1570
105 pages.
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