Our findings replicate some themes in the recent literature on the psychological stress associated with cardiogenetic disorders. Similarly to Merlevede et al., the current study found that participants experienced feelings of guilt and complained of being left with unanswered questions regarding the cause and circumstances of the death of a family member. Similarly, participants spoke of multiple family stresses in much the same manner as in Vincent's study.
In addition, the current study provided a rich description of the multiple and complex contexts in which psychological stressors were experienced by individuals with cardiogenetic conditions and their families. These findings suggest the need for psychological counseling in order to address bereavement and anxiety for individuals and families who are undergoing genetic testing and personalized genomic medicine. They also suggest that, in order for personalized genomic medicine to be maximally useful, it must be accompanied by improvements in medical education for a wide range of professionals.
One important finding is the existence of resilient reactions in many participants. Genetic testing gave some patients a sense of closure and decreased anxiety by providing an explanation for the cause of death of a family member, as well as information in order to plan for the treatment of other family members. Other participants responded with a determination to live each day to the fullest and to increase self-care in terms of healthy lifestyle decisions. Several participants became involved in advocacy organizations that provided them with social support and a sense of purpose as they focused on educating others.
In each of these areas – clinical counseling, medical education and referrals for social support – psychologists have the education and training to make a significant contribution. Overall, the findings make a strong case for the integration of the psychological and physical treatment of cardiogenetic conditions in order to translate recent advances in genetics and personalized genomic medicine into effective clinical care. McDaniel came to a similar conclusion, recommending that healthcare professionals trained as family therapists should be routinely included on genetic healthcare teams.
Personalized Medicine. 2014;11(7):631-640. © 2014 Future Medicine Ltd.