2008 Barcelona - European Society of Human Genetics

EMPAG Workshops
Methods The matrix measures 11 recognised stressors and 8 specific
coping strategies for individuals undergoing cancer genetic risk assessment,
identified through previous research. The matrix was piloted
within a psychological questionnaire as part of a randomised trial of
a coping intervention (CARIAD) .
Findings Preliminary analyses revealed that 134 of the 139 respondents
completed the matrix, with the current data reported from the
first 50 participants. Of the three most frequently endorsed stressors,
60% of respondents were quite a bit/very worried about how family
members would react if found to be at increased risk, and primarily
made use of social support; 54% were quite a bit/very worried about
how they would cope if found to be at increased risk and primarily
coped through positive appraisal; and 48% were quite a bit/very worried
about having to wait to find out their own risk and coped mainly
through acceptance .
Discussion Participants reacted in different ways to different stressors,
although emotion-focused strategies were the most common overall .
The completion rates for the matrix and specificity of responses provided
suggests this coping matrix may be an acceptable measurement
tool . Further data collection and validation is ongoing .
EMPAG WORKSHOPS
EW1.1
talking about disability in prenatal genetic counselling
sessions: identifying tensions and developing strategies
J. M. Hodgson1 , J. Weil2 ;
1 2 Murdoch Childrens Research Institute, Melbourne, Australia, University of
California, San Francisco, CA, United States.
To facilitate informed decision-making in prenatal genetic counselling
it is essential that counselees and counsellors engage in a process
that provides:
a) relevant information concerning the nature of genetic conditions
b) an opportunity for counselees to consider parenting a child with a
disability
This workshop will provide an opportunity for participants to reflect on
the sensitivities inherent in such discussions and participate in developing
strategies for best practice in addressing these complex issues .
Academic literature and an ethical analysis of the goals of prenatal
genetic counselling will be presented to demonstrate that facilitation of
informed decision-making is an ethically appropriate goal of prenatal
genetic counselling . Data from an Australian research project and the
results of an interactive workshop at the 2007 NSGC Convention will
provide further evidence of the need for more effective communication
about disability in prenatal genetic counselling and identify complexities
and impediments involved in doing so . Preliminary suggestions for
addressing these issues will be presented .
A small group format will then be used in which participants will discuss
and reflect on their experiences of communicating about disability,
identify specific tensions and concerns associated with such dialogue,
and develop strategies to promote effective and ethically appropriate
discourse between counselees and counsellors . Written outlines from
the groups will be used to develop a preliminary summary and synthesis,
with further participant discussion . It is anticipated that this workshop
will provide valuable information that can be complemented by
input from consumer groups and other stakeholders .
EW2.1
Assessing Quality of counselling in the context of Genetic
testing Workshop
H. Skirton 1 , H. Kaariainen 2 , E. Rantanen 3 , M. Hietala 3 , J. Sequeiros 4 , U. Kristoffersson
5 , L. Kerzin-Storrar 6 , A. Tibben 7 , G. Evers-Keibooms 8 , A. Faucett 9 , A.
Clarke 10 ;
1 Faculty of Health and Social Work, University of Plymouth, Taunton, United
Kingdom, 2 National Public Health Institute, Helsinki, Finland, 3 Department of
Medical Genetics, University of Turku, Turku, Finland, 4 IBMC, University of
Porto, Porto, Portugal, 5 Department of Clinical Genetics, University Hospital,
Lund, Sweden, 6 Regional Genetics Service & Medical Genetics Research
Group, CMMC & University of Manchester, Manchester, United Kingdom, 7 Centre
for Human and Clinical Genetics, Leiden University Medical Centre, Leiden,
The Netherlands, 8 Centre for Human Genetics, University of Leuven, Leuven,
Belgium, 9 Emory University School of Medicine, Atlanta, GA, United States,
10 Institute of Medical Genetics, Cardiff University, Cardiff, United Kingdom.
The EuroGentest network is a 5 year collaboration between many European
experts, the aim of the which is to harmonise and standardise
genetic testing in Europe . In Unit 3, counselling issues have been the
focus . Recommendations have been made about the need for certain
types of genetic testing (e .g . prenatal, predictive) to be accompanied
by appropriate genetic counselling, as well as psychosocial support in
some instances, to safeguard those being tested . However, if genetic
healthcare is to be evaluated or audited, appropriate standards and
measurable outcomes need to be defined.
Assessing the outcomes of genetic counselling has long been a challenge
to those in the field. Many outcomes (e.g. altered sense of control,
peace of mind, ability to plan for the future) are difficult to measure
. In addition, the structure of health services differs greatly across
European countries . The Expert Group of Unit 3 has devised an assessment
tool, setting standards and potential measurable outcomes
for genetic counselling . The standards address aspects of the service
including access to peer support and continuing professional education,
supervision of junior staff, waiting times, physical clinical environment
and communication with counsellees . A set of measures that can
be applied across different systems of healthcare has been drafted .
In this workshop, we will present work already undertaken, but the
main aim will be to engender discussion and to use the feedback and
ideas generated to further develop a set of assessment tools that will
be applicable to genetic counselling services in the European context .
EW3.1
Workshop: Genetic counseling and predictive testing: A
dynamic perspective
A. Tibben 1,2 , L. Hoffman 3 ;
1 Leiden University Medical Centre, Leiden, The Netherlands, 2 Erasmus Medical
Centre Rotterdam, Rotterdam, The Netherlands, 3 Department of Oncology,
Faculty of Medicine, McGill University, Montreal, QC, Canada.
Genetic counseling aims to allow counselees to make informed decisions
and act accordingly . In this workshop we wish to explore how
genetic counseling and the procedure of predictive testing can benefit
from both psychodynamic and family therapy theory and practice.
First, psychodynamic theory and its application in genetic counseling
will be clarified using four models: the developmental, object-relationship,
the self-psychology and the drive model . Second the relevance
of and application of structural family therapy theory will be described .
Third, elaboration of two clinical cases will show the usefulness of
these theories . Finally, we will explore the requirements of training and
education, in both psychodynamic and structural family theory and
practice, in genetic counseling . Participants are invited to bring their
own cases .
EW4.1
Analysing the social dimensions of coping in families: a
workshop on presenting the results in clinical practice
H. G. Van Spijker, T. Brouwer;
Medical Genetics University Medical Centre, 3508 CA Utrecht, The Netherlands.
Coping is commonly viewed as an individual stress response, but it
has also a social dimension . How do people experience stress in social
groups, like families? How do they engage together in actions to
deal with a stressor, like a genetic disease? In clinical practice, obtaining
a family history is an essential skill for genetic counsellors . It provides
a basis for making a diagnosis, determining risk, and assessing
the needs for patient education and psychosocial support . Valuable
psychosocial information can be obtained in parallel with medical-genetic
information . The family pedigree however does not show data on
social interactions within the family, although ‘the process [of gathering
family data] frequently induces a thoughtful frame of mind that is both
inward- and outward-looking regarding family members and family dynamics’
. (Weil, Psychosocial genetic counseling, 2000) .
In this workshop, we start with an introduction of a conceptual model
on social dimensions of coping, illustrated by data from a family questionnaire
we used in a study on coping strategies . Next, we present
some tools by which the information about social interactions within a
family visually and conceptually can be organized . These tools can be
helpful in analysing the dynamics of a family: kin and nonkin relationships,
communication patterns, social roles and messages . In this way