187- Attributions/worldview: for example, individuals may have an external locus of
control such that they attribute outcomes to chance or fate (Bottorff et al. 1998 ). - Personal experience with a condition: individuals with a family history of a con-
dition do not view risk estimates hypothetically (Bottorff et al. 1998 ). - Perceived burden: Patients’ beliefs about the consequences of being affected by
a condition influence their perceptions of risk. Livneh and Antonak ( 2005 )
describe seven characteristics of disorders that may influence perceived burden:
“(1) degree of functional limitations; (2) extent to which the disorder interferes
with one’s ability to perform daily tasks and life roles; (3) uncertainty of progno-
sis; (4) need for prolonged medical, psychological, and/or rehabilitation treat-
ments; (5) degree of psychological stress associated with the condition (e.g.,
mental illness stigma); (6) impact on family, friends, and other support persons;
and 7) financial losses due to unemployment, under-employment, and health care
costs” (p. 7). Relatedly, “...the observation that some people tend to overesti-
mate numeric probability even after having been provided with objective assess-
ment is directly in accordance with the expectations based on the concept of
‘asymmetric loss functions’. This concept posits that overestimation occurs
because the more undesirable the potential outcome, the more costly are under-
estimates of the probability of that outcome...” (Austin 2010 , p. 231). - Different perceptions by family members of risk, burden, and/or desire for more
children: Simonoff ( 1998 ) offers this example about how the meaning of risk
may vary: “Thus the family who believed all offspring would be affected may
receive a 50% risk as good news. Similarly, and more relevant to autism, families
burdened by a very disabled child may view a recurrence risk of 5% as unaccept-
ably high” (p. 448). - Coping styles: for example, information seekers, avoidant style, dependent
decision- makers, minimizers, blunters, and monitors (Wakefield et al. 2007 ) (see
Chap. 9 ). - Gender: males and females may perceive the implications of the same informa-
tion differently (Bottorff et al. 1998 ). - Temporal factors: for example, time changes how people view their situation
(Bottorff et al. 1998 ). - Cultural or ethnic identity: for example, in a study of Hmong refugees’ English
proficiency, Ostergren ( 1991 ) had to modify a rating scale of 0% to 100%, chang-
ing it to 1–3, because percentage was an unfamiliar concept. - Religiosity: one’s values, philosophy, or meaning of life affect perceptions (Siani
and Assaraf 2016 ). For example, Palestinians and Somali immigrants are likely
to believe that disability is determined by God (Awwad et al. 2008 ; Greeson et al.
2001 ). Individuals who use religious coping may have a spiritual locus of control
which fosters beliefs that “God empowers the faithful to prevent disease, or God
can be consulted to actively interfere with a disease process...” (Quillin et al.
2006 , p. 456). - Difficulties grasping the concept of probability and genetics and unresolved
issues (Klitzman 2010 ; Simonoff 1998 ): patients might not accept the diag-
nosis in the proband or believe another factor is causative, for example, fall-
7.1 Communicating Information