Clients' experiences of empathy in genetic counseling for hereditary breast and ovarian cancer: A qualitative study in Japan.

Empathy is a significant element in genetic counseling for building relationships with the clients and addressing their issues. However, there are few reports on the experiences of the clients about their perceived empathy in genetic counseling. Cancer genetic counseling needs have been rapidly evolving with the expansion of clinical comprehensive genomic profiling and genetic diagnosis approaches for hereditary cancers. Therefore, this study aimed to reveal empathy perceptions of the clients during cancer genetic counseling. Semi-structured interviews were conducted, and a grounded theory approach was used for data analysis. A total of 13 participants were recruited from organizations for patients with cancer, among whom 11 were patients with hereditary breast and ovarian cancer (HBOC) and two were relatives of patients with HBOC. Data analysis was organized into five categories related to experiences with empathy: (i) prior context to perceive empathy (ii) understanding and consideration, (iii) bedside manner, and (iv) impacted area of perceived empathy; and (v) no empathy. This study highlights the fact that empathy experiences of the clients differ depending on the situation and state of mind. Taken together, this study provides new insights on how to deliver empathic care.

Clients' and genetic counselors' perceptions of empathy in Japan: A pilot study of simulated consultations of genetic counseling.

The rapidly increasing availability of genetic testing is driving the acceleration of genetic counseling implementation. Empathy is important in medical encounters in general and forms a core component of a successful genetic counseling session; however, empirical evidence on empathy in genetic counseling is minimal. This study aimed to explore the perceptions of empathy in simulated genetic counseling consultations from the perspectives of clients and genetic counselors. Semi-structured interviews and interpersonal process recall were used with participants of simulated genetic counseling consultations to elicit their experiences of empathy. A constructivist grounded theory was used for data analysis. A total of 15 participants, including 10 clients and 5 genetic counselors, participated in 10 simulated counseling sessions. The genetic counselors attempted to demonstrate empathy and were sensitive toward detecting changes in clients. Meanwhile, the clients' perceptions represented their feelings and thoughts elicited through the counselors' empathic approaches. This was the first process study to examine empathy in simulated genetic counseling sessions. Our model of communication of empathy is a process in which counselors try to address implicit aspects of clients, and clients are provided with time and a safe place for introspection, which contributes to discussions on building good relationships with patients. There is also a suggestion of the utility of simulated consultations for healthcare providers to learn empathic communication.

Survey on experiences and attitudes of parents toward disclosing information to children with genetic syndromes and their siblings in Japan.

Many parents face the dilemma of when, how, and what to disclose to their children regarding their genetic conditions. The purpose of this study was to learn about the experiences of parents regarding disclosing information to their children with genetic conditions. A questionnaire was sent to 378 parents of children and adolescents with the following genetic syndromes: 22q11.2 deletion syndrome, Beckwith-Wiedemann syndrome, Noonan syndrome, Russell-Silver syndrome, Kabuki syndrome, Williams syndrome, Prader-Willi syndrome, and Sotos syndrome. Findings were analyzed using descriptive statistics for multiple-choice questions. Of the parents surveyed, 158 (41.8%) responded to the questionnaires. The average age of children with genetic syndromes was 12 years. Sixty-seven parents had disclosed relevant information to their children, whereas 91 had not. Among them (who had disclosed information), out of 53 respondents who answered that their affected child had siblings, 50 had disclosed the genetic condition of the affected child to the siblings as well. Sixty-eight out of 91 respondents who had not told information to affected child were planning to disclose the information in the future. Many respondents who had disclosed information did not regret this. They felt good talking about genetic conditions, and had talked about genetic conditions with the affected children following disclosure. This study contributed to our understanding of the attitudes of parents towards disclosing information to children with genetic syndromes.

Psychosocial Responses to being Identified as a Balanced Chromosomal Translocation Carrier: a Qualitative Investigation of Parents in Japan.

Undergoing chromosome analysis and receiving the results may have various psychosocial effects. To identify the impact on balanced translocation carriers identified through affected offspring, we conducted semi-structured interviews with eleven parents at Saitama Children's Medical Center. The results of the interviews were analyzed qualitatively by the KJ (Kawakita Jiro) method. Categories and subcategories of the various thoughts, emotions and responses experienced by balanced chromosomal translocation carriers were extracted. Participants' reactions were mixed, and appeared to be interrelated in some cases. Parents' reactions were sometimes ambivalent with regard to effects on reproductive issues and disclosure of test results. We recommend genetic counseling before and after carrier testing to help parents cope with the mixed and complex thoughts and feelings that arise upon being identified as a carrier.