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- Huys et al. (1992) and Van Spijker (1992) also suggest the use of scenarios.
This can be particularly helpful when patients are unfamiliar with a disorder
and/or have no family history with the condition. For reproductive decisions,
after presenting the scenario, Van Spijker suggests that you ask three ques-
tions [from the study by Lippman-Hand and Fraser (1979b)]: (1) How likely
am I to have an affected child? (2) What will it be like if it happens? (3) How
will others react to my choice? - Frets et al. (1992) describe scenarios as constructing a plausible story in
which the decision-maker is an active participant. Scenarios describe what
could happen or could be done under various conditions (e.g., knowing one is
at risk for a late-onset disorder vs. living with uncertainty). They point out that
you will gain valuable clinical information about how patients represent and
reason through information based on the scenarios they construct. In their
research, Huys et al. (1992) found people typically construct between three
and eight scenarios and that the contents of scenarios are quite divergent,
indicating they are highly personalized. These findings suggest patients won’t
try to come up with every possible outcome but instead will focus on a few
outcomes that are particularly important to them. - Bottorff et al. ( 1998 ) recommend using predisclosure role-plays. These are exer-
cises that invite patients to consider the effect of test results on themselves and
their family members. For example, you could ask, “What do you think it will
mean for you if the results are positive? How do you think you will feel? What
will you do?” Then ask your patient to answer the same questions, but for specific
family members (spouse, children, etc.). Finally, ask these same questions, but
with your patient imagining the results are negative and, if appropriate, a VUS. - Kessler ( 1997 ) suggests having patients role-play or pretend they are coping
with a specific situation or person. This allows them to try out different strate-
gies and options. For example, role reversal might be helpful for a couple who
is disagreeing about a reproductive decision, allowing them to see things from
each other’s perspective. - Consider referring undecided patients to psychologists or to others who are
familiar with the specific difficulties they are having in the decision-making pro-
cess (Frets et al. 1992). - Provide support to assist patients in their adjustment to the outcomes of their
decisions. For instance, Underhill and Crotser ( 2014 ) identified several support
needs of healthy women with a BRCA1 or BRCA2 mutation: “Support for
obtaining, interpreting, and applying medical information; Clarification of
options and risk; Support while living with anticipated and actual consequences;
Recognizing personal values and evaluating over time; Accessing support;
Choosing type of medical decision based on personal factors; Seeking informa-
tion and choosing when to act; Living with impact or consequences” (p. 359).
7 Providing Information and Facilitating Patient Decision-Making